COPD - IT'S NOT A DEATH SENTENCE!!

2010-10-31T12:20:00.001-04:00

PLEASE READ ME FIRST!
Hi. Welcome to my not-so-professional-looking blog about COPD and LVRS (Lung Volume Reduction Surgery). When you read this blog, I'm not sure which page is going to come up first (usually the last page posted) but for anything to make sense, please follow the posts along the right column in alphabetical order.

Oh, by the way, Betty Jo of Texas said I really should include a picture of me so people reading this journal would feel "connected" as they join me through my journey. This pre-surgery picture is about 3 years old and my hair is a little darker ("Only her hairdresser knows for sure!") and I no longer carry a portable tank but other than that...................Heeeeere's Penny!

Ken Kime's story

2010-10-31T11:44:00.007-04:00

Four years ago I would wake in the middle of the night from being short of breath. I would sit on the edge of the bed and grab for my albuterol rescue inhaler, take a couple of deep puffs and hope I be able to breath in one more time. Sure enough, the albuterol would kick in and I would settle down to normal breathing. I would lay back and think this is going to be one hell of a way to die. I was only a mere 65 yrs old and in good shape except for the COPD. Now, without my albuterol rescue inhaler I couldn't go duck or deer hunting with my son and could barely keep up with him fishing. He would always do my share in hunting camp...loading our boat, and anything that would require me to do anything physical. I was so short of breath it was difficult to take a shower, walk to my car, (50 feet).

Damn the smoking that led to the emphysema and asthma that led to COPD.

My life was slowly grinding to a halt. I had be hospitalized about four times with pneumonia, one of those time barely making it out. The doctor told my son he should tell my brothers, sister and close friends to be prepared that I might not be getting out.

I am a commercial real estate broker, that couldn't climb any stairs and was so claustrophobic I would break out in a sweat any time I had to use a elevator. Life was miserable... no more pigging out at Thanksgiving & Christmas, going to movies where I had to battle crowds walking without my oxygen, traveling to Alaska to see my brother and sister, all my outdoor activities that makes my life worth living. How about not being able to change a flat tire on my car, taking a shower without my inhaler, making the bed, standing doing dishes, every little activity that requires you to take a breath.

I would come out of my doctors office after a visit just shaking my head. My life expanse was no longer then 75. How was I going to give it hell for the next ten years if I can't breath ?? I could exercise only so much to prolong my life.

My family doctor, Dr. Jeff Simmons, and Lung doctor , Dr Rughani, both here in Eugene, OR told me of a procedure that a doctor in the state of Washington was doing called "Lung Volume Reduction Surgery ." If a person is lucky enough to qualify for the surgery, he would remove the emphysema giving the lungs room to expand, making it easer to breath and live.

I contacted Dr Wood's office at the University of Washington hospital in Seattle. Right away, Diane, his assistant, gave me hope that some thing could be done if I completed and passed all their tests. There were many tests... blood, heart, lung, you name it, I had it tested. Dr Wood also wanted me to loose 16 pounds before the surgery which was to be in 6 mths. Guess what , I passed all the tests, made the weight requirement, and mentally prepared myself for the surgery. Dr. Wood knew that I was a Oregon Duck Fan and I knew he was a Washington Husky fan. He said he couldn't promise me he wouldn't pull any dirty tricks like planting a barking sound in my lungs.

In June of 2008, I reported for the surgery about 5:00 a.m. in the morning, @ the University of Washing Medical Center and was greeted by the most reassuring people. Everyone was wonderful . The surgery lasted a couple three hours. I woke up in intensive care with tubs hanging from my chest but free of pain and breathing with very little oxygen. I was very uncomfortable and glad it was over. I looked up at my son and two daughters and my two brothers. They told me that they talked to Dr. Wood and everything went well. I was home, working, in two and a half weeks.
.
Last June was my two year anniversary since my surgery. Before surgery I was walking about 1.5 miles per hr and would have to stop and rest every two min. Today I walked non stop for 35 min at 2.5 miles per hr. It is like the difference between night and day. I am now preparing to go on a week hunting trip and I will do my share around camp. I walked one and a half miles pheasant hunting last week end; I can walk to my car without even thinking of stopping; no longer need my albuterol for showering; I don't wake in the middle of the night gasping for air; and my handicap sticker for my car -- I don't even know where it is. I no longer carry and sleep with my albuterol; I went to a movie and didn't even think twice about the crowd. And yes, now I do stairs any time I can. My whole live is back on track. I still exercise at re-hab at least three time a week, walking over a mile on the treadmill, do arm and leg exercises, plus my working activity which I am sure amounts to walking a couple of miles a day. I still can run short of breath if I exercise or walk too fast, but it is no where near like it was before.

I have sent two people that contacted Dr Wood's office for the surgery. Unfortunately only one got to be a candidate and after surgery she has done just as well as I have. Anyone who wants to fine tune all the details of the surgery and recovery, feel free to call or write me any time. Believe me, I know what your going through and will help in any way I can. Ken Kime, 541 344 7178. Thank you Dr. Wood, Dr. Rughani and Dr. Simmons for all you have done for me.

PS. I make no barking sounds.

Adina's BLVRS - Update 2010

2010-02-12T17:22:00.017-05:00

Sadly, the initial improvement I experienced with the BLVR did not hold, and I ended up pretty much back to where I started.

I'd like to preface this story with the fact that I went into this procedure with a very positive and upbeat spirit and mindset.
I had a series of three PFTs leading up to the procedure on Dec. 19, 2007. All the numbers I will give you are POST-Bronchodilator as that’s what Aeris used for its statistics. For the three tests in the few weeks before the procedure, my FEV1 was 25%, 26% and 24%. My FVC was 57%, 57% and 49%. My DLCO was 20%, 21%, and 19%. My RV was 193%, 208%, and 194%. And my TLC was 120%, 124% and 119%. What they’re looking for primarily is a reduction in air trapping, but of course, they’re also looking for other improvements in FEV1, FVC, exercise capacity, etc.
Although I DID actually experience some real improvement both in how I felt and in my ‘numbers,’ at the six-week check up (Feb. 1, 2008), I began to get worse and needed a round of prednisone just ten days later. At the beginning of March I began getting more SOB again. I went for the 12-week testing (March 13). Twelve weeks was the target to see the improvement they were looking for, which I mentioned above.
At six weeks my FEV1 was 28% (it was that high a year ago, too), my FVC was 54%; DLCO was 26%; RV 168%; and TLC 115%. You can see an improvement over the Pre-BLVR numbers, which also reflect how I felt.
At 12 weeks, my FEV1 was also 28%; FVC 59%; DLCO 24%; RV 212%; and TLC 127%. The RV and TLC are both higher than they were at six weeks. So again, how I felt and the numbers both 'matched.'
Since, as I said in a previous post, the doctor (Dr. T) who actually did the procedure refused to answer my questions and then forbid me to even ASK questions, I called Aeris Therapeutics and talked to the doctor (Dr. I) who actually founded the company. I asked to tape the calls, and he consented.

Here's what he told me about my own situation: At 12 weeks (the target time for initial results), I showed a "moderately good" response, which means that my improvement was a little over 10% from my baseline. (He said some patients had a 50% improvement). He also said the BLVR doesn't collapse lung as effectively as surgery, but it's obviously less complicated than surgery. Since I was told (BEFORE the procedure) that the BLVR I had (the 20 ml) was supposed to--was intended to--reduce the actual amount of my lung by about the same 30% that LVRS does, I asked him how much MINE had actually been reduced, and he told me by about 15%.
My PFTs are obviously in the low "very severe" range. Perhaps some of those who saw more improvement had better numbers to start with, but so far that information is not publicly available. Aeris won't even share it with the doctors doing the procedure, what they call the "Principal Investigator."
He told me that if I had come to him and asked him how I should be doing, he would tell me that I "should be doing somewhat better. Your improvement is as good as one would expect with an inhaled medication, if not a little better." Now, THAT really didn't make me happy that I went thru a procedure that yielded not much better results than an inhaler.

He said my RV/TLC ratio is a little worse at 12 weeks than it was at the 6-week testing, but that my FEV1 was better--almost twice as good. (However, it was only a couple percent better, which as we know can happen from one day to the next without any intervention. And looking at it, I have NO idea how he figured it’s TWICE as good). He said my Vital Capacity was also better.
He also told me that they're finding that the areas next to the areas they treat with the BLVR gel tend to get BIGGER, and that even the areas they treat, although they initially shrink, can then get bigger. They don't know why that's happening, but they have some "leads."
Later as I read the reports of my x-rays and CT scans, one of them said that there were "significant bullous emphysematic changes since the last scan/x-ray." That would have been between the 6-week testing and the 12-week testing.
At least he explained HOW they measure things, e.g., the RV/TLC ratio, and the actual reduction, etc., which was all I was asking the doc HERE to do, and he refused. When I told Dr. I that's all I was asking for, just to have things explained to me and that the doc here refused, he said, "Well, you have to realize that Dr. T is a clinician, not a researcher, and that he may not have that level of sophistication where he can address some of the complex questions that you have."

Dr. I indicated said if I still don't show much improvement at six months (which was where I was in May of 2008), then my options still included LVRS, or transplant, or another BLVR treatment, etc. I decided NOT to go back to the doc here, though, for the reasons I mentioned in the other post, as well as some other issues that arose after my last post, so I will need to get another PFT somewhere else.
I suggest that if you’re interested in this procedure you also look at the presentation by Aeris President and CEO David Dove at the Omrix Biopharmaceuticals Analyst & Investor Day held on March 27, 2008. Aeris and Omrix have a manufacturing and supply agreement. You can find the presentation – “Perspectives in Biosurgery” in the information at this URL: http://library.corporate-ir.net/library/19/197/197979/items/286778/Dove_Aeris.pdf . Once you do that, you will understand that we are a MARKET SEGMENT and MARKET SHARE, no more.
Although I knew that I might not benefit by the procedure, what I did not know but learned as I went along – both from my own experiences and those of a couple of other local people – that the coordinator here will fudge how tests are conducted in order to help people qualify. Sadly, I have learned that this is not uncommon for clinical trials. So the next step is to read Overdosed America by John Abramson, M.D. of the Harvard Medical School. He has extensive information about the conduct of clinical trials and the manipulation and presentation of data from trials. I did not have this book until after the procedure, or I never would have gone thru it. Also, about a year after the procedure I found two other people who had participated in Phase II of the trial as I had, but in a different location, and l learned that neither one of them benefited from it either.

Knowing what I do now about this trial, as well as clinical trials overall and in general, I simply would not participate in one ever again, especially not in a Phase II trial. It's just TOO experimental. And the bottom line is that I no longer feel any better than before the BLVR.
Much of my own experience is due to the local doctor, so if someone is still interested in getting this done in Ohio, I would recommend going to the Cleveland Clinic instead. They were not yet part of the trial when I had mine done but they are doing it now. (This was true at the time I wrote this about two years ago, but I don't know where they stand now).

My 6-Month Checkup

2008-09-14T10:03:00.002-04:00

July 10th, 2008 - Date of my 6-month follow-up checkup with my Pennsylvania pulmo doc. What a disappointment! I thought he'd be all happy I'd had the surgery (even though I went to Duke in NC instead of Temple in Philadelphia) but he hardly blinked an eye. Listened to my lungs; squeezed my slightly swollen ankles;scripted lasix and potassium and that was it! He didn't even say his usual parting comment that I was in good shape for an old broad! I was totally let down on this visit.

However, I did get me a PFT and some x-rays and the results on the PFT are wonderful. I increased my FEV1 from .60 liters (20%) to 1.43 liters (54%). And my Residual Volume (what's left in your lungs after you exhale everything) dropped from 225% to 165% which is still more than it should be but not as much "more". My DLCO (indicates how well your lungs exchange O2 and CO2) came up a bit. There are a lot of other numbers there but I'm not sure whether they're supposed to go up or down so I don't worry about them.

Not everyone will see as dramatic an improvement (at least I think it's dramatic) and yet others will see a more marked improvement...just shows you we're all alike (COPD) but different (test results, results from meds, etc.)

I think my most appreciated improvement from this surgery is that I no longer get sob!! I don't run races or anything but during just every day living. There are times I get breathless when I'm doing something strenuous but everyone, COPD or not, gets that way occasionally. I have noticed my sats still drop if I'm doing any "strong" walking but they rebound within a minute, or two at the most. Since we travel, I can go sightseeing and hiking without lugging my O2 along. It is just so nice not to have to plan ahead or worry whether I'll have enough O2 for whatever it is we want to do. I do keep a full portable in the truck "just in case" but it's been there since the surgery.

Yep, just goes to show you how a little bit of really bad lung (my two upper lobes) can affect your whole lung and breathing.

2008-04-24T11:00:00.003-04:00

PLEASE READ ME FIRST!
Hi. Welcome to my not-so-professional-looking blog about COPD and LVRS (Lung Volume Reduction Surgery). When you read this blog, I'm not sure which page is going to come up first (usually the last page posted) but for anything to make sense, please follow the posts along the right column in alphabetical order.

Oh, by the way, Betty Jo of Texas said I really should include a picture of me so people reading this journal would feel "connected" as they join me through my journey. This pre-surgery picture is about a year old and my hair is a little darker ("Only her hairdresser knows for sure!") and I now carry a portable tank but other than that...................Heeeeere's Penny!

After the surgery...

2008-04-24T10:21:00.009-04:00

I thought I might just mention some of the "after surgery and home again" things that people might come across because when I left the hospital, no one told me what to expect in the line of pain, 'funny feelings' or whatever. Not everyone will have the same pain or funny feelings and some might have some and not others. This is just to tell you what I've had and that they're normal.

PAIN: Yes, it's still there but not the same anymore. For the first 3 weeks, I really couldn't lie on either side very comfortably because of the incisions. Once they took the staples out, however, it got much easier and today, 24 days after the surgery, I can lie, gently at first, on either side without that hurt. It does still hurt a bit when I press on them.

HOWEVER, my skin hurts! It's not an unbearable 'quick, grab the pain meds' pain...but I know it's there...from one side to the other, front only, and just the vertical area between my breasts and belly button. Really weird but the PA said that's because the nerve endings are in our skin and they're the last to heal...and it can take several months to go completely away. Since it's not that bad, I can live with that.

FUNNY FEELINGS: I've had no problem lying on my back to sleep. In fact, I've had no problem lying on my right side most of the time. However, when I go to lie on my left side, I feel like somone punched me in the stomach...not the pain of it but the feeling you get inside...like a gasping feeling right below your sternum. The feeling goes away if I lean back slightly or have the patience to wait it out (a couple of minutes). I don't know what causes this feeling but they said it's natural and will go away in time. I have noticed it, too, when I lie on my back for the floor exercises at rehab (but not when I lie on my back when I go to bed). Strange.

May 6, 2008
Well, here it is...about 5 weeks after the surgery....and I FEEL GREAT!! The Advil is a thing of the past; I can now lie on my left side to sleep; I can walk all day without getting sob (although I do have to watch my sats; they tend to drop to 88% if I walk too fast). I still go to rehab and still use O2 when walking the track, doing the recumbent bike and for sleeping but only at 1 lpm.

About 2 weekends ago, we took a 5 1/2 hour trip down to GA to see a friend and I drove all the way down and all the way back with no O2. Walked the beach of one of the low lakes; visited with Larry for several hours; went out for dinner one night; did some shopping...all with NO O2 and NO SOB!!

I still get an occasional strange twinge here and there but I guess it's all part of healing and it isn't anything scarey anymore. I did have trouble with both legs, ankles and feet swelling for about 4 weeks after surgery but, as soon as I made an appointment with my NC pcp to have him look at it, it started to go away. It's still there a tiny bit but since it makes my ankles look better (they're normally very thin), I'm not going to complain! He took some blood to make sure it's not a lack of (or is it too much) protein. Since there's no pain, and since I do so much walking at rehab and here in the park, he's not worried about circulation or a clot.

I called to make an appointment with my regular Pennsylvania pulmo doc. I can't wait 'til he sees me with no O2 and no sob!

Oh, how can I stress it enough for all of you who read this blog....if you're on O2 24/7 and you continue to get sob with the slightest activity and if you've had any heart problems ruled out, at least get tested to see if you qualify for LVRS. It's a whole new life.

2008-04-19T12:12:00.007-04:00

These comments are from Muffin's and Tony's stories and I want to repeat them here.

* Anyone out there, if you think you may qualify for LVRS or if you don't know, find out and go for it, you will never regret it.

* I can speak only for myself but I recommend the procedure to anyone who qualifies. The improved QOL is worth the initial discomfort.

* I echo these sentiments wholeheartedly. LVRS is surgery and there will be pain and not everyone has the same results but the benefits far, far outweigh the negatives. Find a good LVRS facility, get evaluated, and go for it!

I'd like to add one thing...get into a good rehab program both prior to the surgery and afterwards. I can't praise the one at Duke enough. 4 hours a day, 5 days a week sure sounded impossible when I first started but I know that's what led to a fast and successful recovery. At the very least, get into a strong 3-days a week program and get in as best shape as possible. It certainly pays off in the long run.

I HAVE COMPLETED THE JOURNEY

2008-04-19T10:33:00.013-04:00

TA DA!! Here I am! We did it! And, so far, it’s great!

Okay, I guess I’d best go back to Square One and start from the beginning. I was going to try to tape record my daily happenings and feelings…even bought a small tape recorder for that purpose…but Bob kept such meticulous notes, I can use them. I mean, he even noted whenever I said “Ouch!”

Monday, 3/31/08
Arrived at hospital as scheduled at 9:30 a.m. for 11:00 a.m. procedure. Did all the sign-in stuff then sat in patient waiting room with Bob for awhile. They gave Bob a beeper so they could keep him updated on my progress. Around 10:15 off I went to be prepped. IV’s in both hands, epidural in back, funny hat that kept falling down over my eyes (they finally had to tape it in place). I was quite anxious about the epidural because the thought of someone sticking a needle in my spine just didn’t ‘float-my-boat’ so to speak but they were so good, I barely felt it. So there we are…all prepped and primed….and no where to go. Evidently there was a TX scheduled for the OR right before me and it either didn’t go well at all or it took quite a bit longer than anticipated.

I need to put something in here while I’m thinking of it. For some reason, not once, from the time they set the operation date to today, was I anxious, nervous or scared about it. I think some of the reason is because I have been working out at the gym with TX applicants since January 14th and I have seen about 8 of them get their lungs and come back to rehab looking great! I realize LVRS is a more serious procedure than TX because you still end up with your crappy lungs…just less of them….whereas a TX gets you new, stronger lungs. I think the main reason I didn’t feel anxious or scared is because He got me here (sold the house in 3 days, found a nice RV park to stay in down here, etc.) so He was going to take care of me. That, plus when you’ve got hundreds of people all over the country praying for you, you know you’re in good hands.

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There are two methods of doing LVRS
In the one, called open sternum, they cut right down the center of your breast bone. It leaves a very fine scar that, in most people, disappears over time. Some doctors prefer this method because it gives them an open view of the whole chest area. I’ve heard that there isn’t as much pain with this method because they aren’t cutting through a lot of muscle.

The other method is Video Assisted Thoracic Surgery (VATS) in which they make 3 small, about 1" incisions on each side. They insert a camera and teeny tiny tools (I don't know; maybe some use laser. I should have asked) and perform the surgery that way. In either method, they surgically remove the predetermined amount of lung (1/3 of each in my case) and then stitch the remaining gap. They used to use bovine pericardium to reinforce along the stitch line but my doc used some sort of dissolving gortex!

I don't know if either method is better than the other; it's just however your surgeon chooses to operate. The recovery time for the open sternum method is just a little longer than the VATS method and you do have a few more restrictions post-surgery than VATS such as no driving for about 10 weeks, I think Tony said. Muffin will be able to clarify that. In either surgery, you are limited in the amount of lifting you can do until the sutures heal.
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Back to the story
I don’t know just when the operation started but I was out of there by about 3:00 (per Bob’s notes). He said he met with the doctor who told him everything went just fine and that he could see me in about an hour. I’m sure Bob felt a great surge of relief at that point ‘cause I truly think he was more anxious about the whole thing than I was.

I don’t remember a whole lot of the recovery room except that I hurt!!! I do remember I kept trying to say “I want to go home” but for some reason, I couldn’t say the word “home”. Looking back, I think I may have still been intubated (but I’m not sure) and just couldn’t form that word around the tube. Intubation is a normal part of the operation and they insert it after you’re under the anesthesia and remove it before you’re completely conscious. The doc had warned me that I would have a sore throat from it but surprisingly, I didn’t at all. I think I was in the recovery room a bit longer than anticipated because they didn’t transfer me to my room ‘til 7:30 or 8:00. I do tend to have trouble coming out of a general anesthesia.

Poor Bob. When they finally transferred me to my room, it was during shift change so he sort of got lost in the shuffle. He didn’t get to see me until 8:30 (it was a very long day for him!) and I know I wasn’t very pleasant ‘cause of the pain and I just wanted to sleep so he left around 8:45.

This pain I speak of….during surgery, 4 flexible rubber tubes about a foot long are inserted in the incisions along your sides, 2 on each side. This is to facilitate the draining of blood and fluid from the surgery. The tubes were similar to a "Y" with a common tube continuing to a box on the floor where the chest fluids collected. The fluids in the boxes are measured frequently. That’s what hurts…the tubes. You have to lie on your back since you can’t lie on either side in the beginning and since my back aches if I lie on it too long, I just could not get comfortable. And, of course, your whole chest hurts because they have been inside there...cutting and sewing and pushing and pulling. Then to add to that, I was feeling quite nauseous and certainly didn’t feel much like eating so, to be honest, the first day or two, I was not a happy camper. Plus, each day they give you 2 shots of heparin, a blood thinner to prevent clots from forming. These shots are given in the stomach and the nurses are pretty good 'cause you barely feel it. However, the one nurse either wasn't as experienced as the others or she had a sadistic streak in her 'cause every shot she gave really hurt!

By Wednesday, I finally figured out that it was the strong pain med they were giving me via the epidural that caused the nausea and asked that we switch over to an oral med, oxycodone. Once that was done, the nausea left and I felt much better. Still couldn’t sleep particularly well and still hurt but I was alive and I could breathe!

Tuesday, 4/1/08
April Fool’s Day!! But I certainly wasn’t feeling up to pulling any April Fool’s tricks on anyone this year. Up and out of bed and grab that walker and walk those halls! They don’t let you lie around in bed here, that’s for sure. It’s really a bit of a production, getting ready for your daily walk. You’ve got a catheter bag; you’ve got 2 drainage ‘boxes’, you’ve got your O2 tank and you’ve got the walker….try to handle all that while walking down a narrow hallway without running into anyone, LOL. I did get better at it after about the 3rd time around, though, and it really did feel good to be walking. When you’re not walking, you’re supposed to be sitting up in the chair. Well, I was still feeling so tired that I just wanted to lie in bed and sleep. The nurses were not happy with me.

Wednesday, 4/2/08
Feeling better each day. When the docs came in on rounds, I told the one to please apologize to the people in the recovery room for me. I am sure I was not very nice there. He laughed and told me I was really rather funny…and besides, “You remind me of my grandmother!” Well, let me tell you…that young man is darn lucky I was still “confined” to my bed with the tubes and O2 or I would have had his hide! LOL!! His grandmother…indeed!!

Walked about a mile today (19 laps around the nurses’ stations equals 1 mile).

Today was remove Tube #1 day. I have heard this is the worst part of the tubes…the pulling them out. The doc that did mine was very good, though. First of all, they unsnip the stitches holding them in place and then, when he’s ready to pull, he told me to hummmmmmm. That supposedly keeps me concentrating on something other than what he’s doing and creates some sort of ‘out’ vacuum so no air enters the hole. Whatever. I hummmmm’d, it did hurt , and then it was done. Tied the holes up (that part hurt the most) and then down to x-ray to check for air leaks and/or bleeding and all was good.

Thursday, 4/3/08
Feeling better with each passing day. Tube #2 came out; down for x-rays. One would think one would begin to glow after getting so many x-rays but so far none of the nurses has noticed an eerie light coming from my room at night.

I have 2 very loose bottom teeth that get in the way when I try to chew anything so I’ve just had liquids for the past 4 days. I was hoping those teeth would “accidentally” get knocked out when they inserted the tube for the surgery but no such luck. They are still there and they are still bothering me. They get in the way when eating so I’m sticking to a basic liquid diet…soup and juice.

Other than the pain from the surgery, there was a very interesting feeling that I wondered about. It felt like I had a VERY TIGHT bra on…you know, it was very tight around the ribs. I wasn’t wearing a bra so this feeling was confusing. Finally asked one of the nurses and she said it was because of the internal stitches across that area. This confused me a bit since it was part of my upper lungs that was removed (1/3 of each!) and that area is up by your collarbones. Never did find out why I had that feeling but it has slowly disappeared since I’ve been home. Another interesting pain…if pain can be interesting…is that my skin hurt! It hurt with just a light touch to it. Don’t know why. Still have a bit of that pain with me 3 weeks later. Must be another “referred pain” deal. Referred pain is when you have an injury or trauma to one part of your body but another part hurts.

Friday, 4/4/08
Nurses are concerned that I haven’t had a bowel movement yet. I told them I haven’t eaten anything since Sunday so there’s nothing to make a bowel movement out of. So here they come with the Milk of Magnesia (in addition to the stool softener they are already giving me). People, be very careful with this combination!!! It works….when you least want it to!! And try to get to the bathroom dragging your drainage boxes and O2 without getting totally tangled up in it…..whew! Didn’t like that AT ALL!! But the nurses were happy at least.

While I was in the room and not out walking, I was continuously hooked to a heart monitor. Not much of a problem except the mechanics of it are in a little box about 3” x 6” that is carried in a “pouch” in the front of your hospital gown. It’s heavy enough that it drags the front of the gown down and feels rather heavy on your chest. And if you unhook it to relieve the weight there, the nurses get a little upset.

Tube #3 out. Down for x-rays. Walked.

Saturday, 4/5/08
Last tube out today! Boy, is it neat to be able to walk about and not have to drag anything behind you! X-rays are good; no leaks; no bleeds. Blood tests are good – no infections. Feeling pretty good. The oxycodone is keeping the pain at a reasonable level. Still keeping O2 on but reduced it to 1 lpm. I think this is going to be the hardest thing to do -- wean myself from the O2. For 5 years, you’re so used to having a nose hose and now all of a sudden, you supposedly don’t need it. Sats stay in the upper 90’s.

Nothing too new. I get to go home tomorrow. Nurse wants me to be in chair if I’m not walking; I want to be in bed ‘cause my back hurts and I’m tired. A battle of the wills. We compromise.

Sunday, 4/6/08
Here we go home!! Thank goodness we have the rental car (truck is getting some side panels put on) because I certainly can feel every little bump we go over!! Owie!

Wednesday, 4/9/08
I know this is going to sound silly to you but for me, it was a wonder! Bob took me to pulmo rehab today. There weren't any parking spaces (I didn't have my "handicapped" parking card with me) so he dropped me off at the entrance and then went to park the car in one of the lower lots. Well, I walked into the building (without O2), visited a bit (without O2), signed up for evaluation tomorrow (without O2) and then when Bob came in, turned around and left with him (without O2). I can't do anything at rehab until I get re-evaluated. It turns out he parked the car about 2 blocks away and he headed off to get it and pick me up but I just kept walking. I walked all the way to the car ...... AND I DIDN'T GET SHORT OF BREATH!!!! Oh, I felt normal again. Before the operation, I would get short of breath just walking out to the car, parked 1/2 the distance closer, and being on O2. This felt absolutely wonderful!!! I do hope it's not just a fluke but is something that will continue to improve. My sats did drop down to 88% but they came up above 90% within a minute or two. My only concern was that my HR was about 115 but the people at rehab said that, too, would come down as we go on.

So, that's my VERY EXCITING news for the day. I'm sitting here right now without O2 and my numbers are 93/83. I'm about ready to go lie down a bit, though, 'cause my back really aches a lot. But I can breathe without getting SOB!!!

Friday, 4/11/08
Guess who washed her truck today!! Granted, it was at one of those self-service power wash places but I did it!! Without supplemental O2!! And I didn't get sob!! This is something I haven't been able to do since June of 2007 (hence, a VERY dirty truck!) and Bob was along 'just in case'. In fact, we've been on the go for the past 5 hours and I did not get sob at all during that time.

Left here around 1:15; got the truck; over to drop off car; to car wash to get truck all nice and shiney; to Red Robin for lunch; to Walmart for fan, hair color, etc. and finally home by 6:15. A VERY LONG day and I’m a’hurtin’….but did it all without O2!!! How fantastic!! And did NOT get sob!!! And my sats stayed in the mid 90’s all by themselves! This is just so wonderful!!

Back to Rehab 4/14 – 4/18/08
Monday
Started rehab today. Back to square one there, too….no weights (therabands instead), no excessive stretching, only 20 minute walk and 15 minutes on the recumbent bike. Okay on the floor exercises but I couldn’t do the ones where I had to lie on my sides (side leg lifts) ‘cause that hurt. Felt good to be exercising again, though. And I didn't get sob! Can you tell that's the best part of all this!?

Tuesday
Upped the walking and bike time. This was “leg” day where we do lower body strengthening. Those weights were lowered a bit, too. For some reason, I am walking ‘funny’…sort of wobbly. Used a walker for my 20 minute walk.

Wednesday
Increased weights a bit and ‘graduated’ to a red theraband! Was able to lie on sides for the leg lifts but for some reason, lying on my left side hurts inside and I can’t do a good inhale. Gotta’ ask about that. I’ll tell you one thing….my out-of-shape muscles are aching so much, I don’t even feel the surgery pain anymore, Lol!! I’m trying to remember to take 2 pain pills about one hour before I leave for rehab and that seems to help.

I have Clinic on Thursday so won’t be at rehab.

Friday
The doc took the staples out yesterday and released me…with the caution to complete this post-op rehab and then continue exercising on my own. He said everything looked fine and that was that. I was a little disappointed, to tell you the truth. I sort of hoped he would advise me of what to look out for or whatever but he just said “Go”. Oh well. He did advise me to get a pulmo doc but I’m not sure how I’m going to do that since we’ll be traveling around the country. Maybe I’ll just keep my regular pulmo doc in PA and go back to see him once a year.
**********************

So, for now, I think this is the end of My Road to LVRS. Obviously, I’m hoping the results will last at least the projected 5 years but for now I’m just so glad to be able to do stuff like a normal person -- without getting sob.

THE DATE IS SET!

2008-03-20T21:40:00.007-04:00

3/20/08
Went, as scheduled, to Clinic this a.m. to see the surgeon, Dr. Thomas D'Amico. I thought it was just an "update appointment"...seeing how I was doing in rehab, how I felt, etc. Well, guess what? WRONG!!

First off, I had a pft. The numbers weren't changed too much but the DLCO is dropping....and it was a little harder to keep up the blow, blow, blow part for the FEV1. But I was able to keep it up to .61 liters which is where it's been since 1999. Then sit and wait...and wait....and wait...to see the surgeon. First, his very nice PA, Scott Balderson, came in and asked some questions, did some checking and then disappeared. After a bit, Scott came back with Dr. D'Amico. We talked and he said I was a very good candidate and I asked my questions...and then he asked, "Well, when would you like it done?" WOW! I wasn't really expecting that. So I said "I'd like it done on a day when your hands are at their steadiest and your eyes are at their sharpest." He actually broke into a smile!! So he and his assistant went out of the room to check the schedule, came back and said, "How about March 31st?" That's only a little over a week from now! What the heck, there's no sense delaying it, right? So I agreed. Whew. All of a sudden the wheels are turning pretty fast.

After Dr. D'Amico left the room, Scott asked if I had any more questions. I asked him if I had forgotten any important questions and he said that it sounded like I had asked all the important questions and that I was quite aware of the procedure and such. I told him I belong to several COPD forums plus I had the reports of several others who have already had the LVRS in my blog. He said he only wished a lot of the other patients were as well informed. Nah, my head didn't get too big hearing that, LOL!

After he left, I had to go for blood work (my veins were very stingy today...didn't want to part with any blood!), some pre-admitting paperwork, and an ekg. I asked someone along the line why I had never been tested for pulmonary hypertension and she said there was nothing in my record that might indicate I had it. I hope they're right.

It was a long day...7:30 to 5:30. I'm tired. Back to rehab tomorrow. I don't know if I'll be able to update this story while I'm in the hospital but I will keep a daily journal...if even a short one...and enter it when I get home.

Oh, I forgot to mention...right before I left the surgeon's appointment, he stuck his head back into the rooom and asked if I would be interested in talking with someone who has recently had the surgery. I said "For sure" and he introduced me to a gentleman who had it 3 weeks ago. He was back for his 3 week checkup and graciously agreed to answer any questions. I didn't have many questions...mainly how he felt about his operation and he said it was a lifesaver. He wasn't on O2 prior to the operation (but from what he described, he probably should have been!) but he got sob so very easily. He said he can walk miles now and not even have to think about breathing. That's what I'd like...really, just to be able to walk without (1) lugging the O2 along and (2) without getting particularily sob. He told me I would be happy I had it. I hope he's right.

3/28/08
The time is set also. So folks, please be thinking of me between 9:30 a.m. and 2:30 on Monday afternoon. The actual procedure is set for 11:00 a.m.

I don't want to take my laptop to the hospital so will go looking to buy an inexpensive tape recorder tomorrow so I can tape my feelings and thoughts while I'm at the hospital and then put them into this blog when I get home.

I said a temporary Goodbye to the folks at rehab today; told them I'd see them in 2 weeks (just guessing on that time frame). I got each of them a gift card for Red Lobster...just a token to show how appreciative I am for all their patience, prodding, compassion, etc. Somehow I miscounted and got 2 extra cards...so guess who gets to use them!! You got it! ME!!

I don't want to disappoint anyone but there is no guarantee that my breathing will be very improved and there's no guarantee that I'll be off O2, so please, if I post on my blog that I'm still on O2, please don't take that as a signal that the surgery was not successful. No O2 and less SOB are MY goals and my doc says they're realistic goals but they are not met in all LVRS cases. It'll be a case of wait and see.

There really isn't much else to add at this time. The one RT at rehab said Dr. D'Amico was quite pleased that I stayed with my 5-days a week exercise schedule even after I had 'graduated' from the regular class. It was only 2 weeks but still......So gang, see you in a week or two...Good Lord willing and the creek don't rise. Of course, with the drought they're having down here, chances of the creek rising are pretty slim so it's all up to the Good Lord.

March at Duke

2008-03-04T21:41:00.005-05:00

3/4/08
I'm back to rehab. And guess what the heck happened those 3 weeks I missed? 3 members of our rehab class were 'called' for their new lungs!! Billie, Jeff, and Arthur. I am so happy for them. And the rest of the class graduated. So I'm the only original member left although about 5 of them are back exercising at the same time, just not part of the class.

Anyway, both Billie and Jeff were back in rehab today...8 days after their transplant! Wow, they sure don't mess around here at Duke, do they? And they both looked great...with NO OXYGEN! I'm not sure just when Anthony got his lungs so it may be a bit before he comes back.

Let me tell you, folks...these 2, plus about 3 others I've met, are real live, walking, talking absolutely great examples of the benefits of transplant. So if your doc talks to you about looking into a transplant, and if you agree to test and are accepted, and if you are enrolled in a DEMANDING pre-op rehab program, don't give up. They all say it's that pre-op rehab program (and, of course, the skill of their surgeons) that produced such outstanding end results. Of course they'll still have to be aware of rejection problems but other than that, they are doing just absolutely great...just like normal people.!!

3/07/08
Well, I made it through the week. It's almost like starting all over again! Please, please, please...keep up with your exercising 'cause even with a week off, you lose a lot and it gets harder to get back to where you were.

Tuesdays and Thursdays are our 30-min. walk days and usually I just plod around the track, dragging my O2 behind me (most of the others on O2 got to push theirs in one of those carts), maybe getting 9 or 10 laps in. (There are 14 laps to a mile in the lane I use). This was getting quite discouraging; even the post-tx people kept passing me, and one really old guy, and I started feeling quite down about the whole thing. So, Thursday, on about my 4th lap, I just grabbed one of those push carts and used it. Well, what a difference that made! You have to be careful not to lean on it 'cause that defeats the whole purpose of walking "strong" but I walked 17 laps!!! I even got a star on my chart!! I realized why they prefer you to pull instead of push, though. If you're pushing, you tend to slowly start raising your shoulders up around your ears as you breathe. While pulling, it's quite unlikely you'll do that. So I just have to remind myself to relax and lower those shoulders. It DID feel good to get in as many laps as some of the others, though.

We had a graduation party for about 4 of this group today. Everyone brings something. I took a fruit tray. There were 3 cheesecakes there (with each cheesecake having 8 different types on it!), chips, cookies, a cake, pretzels, a veggie tray, brownies, and a key lime pie. Oh, yum. Not necessarily a healthy-eating bunch, huh?

Since I sort of started "off schedule", I won't get a graduation party. I think next Tuesday is the end of my Medicare-paid-for 23 sessions then I have to switch over to 'graduate' status and pay so much a month until I have the surgery. After surgery, I think Medicare kicks in for a certain number of post-op sessions then I'm on my own.

My next appointment at The Clinic is 3/20 so we'll see what's what then.

3/11/08
I'VE GRADUATED!! Got a certificate to prove it, too, LOL! They also gave me my very own theraband and walking beads. So, what does this all mean? Absolutely nothing. Well, actually it does mean that Medicare will no longer pay for my sessions at the Center so I've got to dish out the fee. It also means I could stop going, if I wanted to. But, since I want to be in the best possible shape for this procedure, I shall continue going, doing the same stuff, 4 hours a day, 5 days a week. I need to get into the 'exercise habit' so once all is said and done and we're on the road traveling around the country, the 'exercise habit' will be firmly imbedded in my psyche and I will continue it no matter where we are.

I had my 6-minute walk test yesterday...walked a grand total of 25 more feet than I did at the beginning of the course. Not too impressive, huh? Well, yesterday was a 'bad breathing' day (as was today, for some reason) so that was the reason I didn't walk farther.

So, nothing is changed. I will continue to go 5 days a week until I see the doc next Thursday. Then we'll see where we go from there. You know what's sort of sneaking around my mind right now...I'm afraid that somewhere along the line my condition may have deteriorated to the point where I'm no longer eligible for LVRS. What a revoltin' predicament that would be!!

2008-02-18T17:46:00.003-05:00

I've been asked to report my status now that I'm nearly two years post-op.

I'm now 64 years old and had a pre-op FEV1 of 23%. Six months post-op (9/06), it was 39% post-med and probably is still about there. I use O2 nocturnally only at 1.5 LPM and find its use more precautionary than necessary since the surgery. My O2 saturation during the day ranges from 90 to 96% depending on the level of exertion. I use Flovent, Serevent, Spiriva, Nasonex, and when rarely needed, Combivent.

I feel that I'm still very much the beneficiary of the procedure as I remember the pre-op days struggling to walk to the mailbox and back without stopping to rest. The first few months, I was in the recovery mode attempting to get full strength back. I found that the rehab exercise sessions very beneficial to achieving this goal.

On my trips to the stores, I no longer look for a "handicapped" parking spot as I tell myself the longer hike is part of my PT. I can't remember the last time I used my blue placard. Pre-op, I hired help to come in every other week and do the housework like vacuuming and dusting. Although it's still not my favorite thing to do, I now do it myself.

I enjoy playing golf (but not necessarily well) and was pleased that I was able to resume this activity three weeks post-op in 2006 although other parts of the old body started showing signs of fatigue! This past 2007 season, I played 50 rounds of golf without having to use the "handicapped flag" on my cart and being able to climb up out of the sand traps without stopping to get my breath back. Towards the end of the rounds, I do find my game weakens but I'm not sure that the decrease in stamina is due to the COPD or age!

I have a large yard that I maintain throughout the growing season including trimming back the trees and shrubbery as needed. The days I don't play golf or do yard work, I do my laps in the neighborhood. This current winter, we've had record snowfalls and I'm ashamed to say the treadmill hasn't seen the workout that it should have seen. I have a garden tractor mounted with a rotary snowblower that I use to clear the driveways and mailboxes for myself and four of my neighbors. Wearing my old Air Force hooded parka and a facemask, I've logged many hours this season clearing over 130" of snowfall. For the past two weeks, I've suffered from a head cold and
bronchitis, the first in over two years. But, now feeling better and the fact that we again have some asphalt showing, I'm back to doing the walks.

There are times and conditions which very much impact my health and are pretty much those which bother all of us with COPD. Here in North Idaho, we get about two weeks of pine pollen which blows in the air and coats everything until a big rain washes it into the ground. I pretty much stay inside while that is happening. Also, we often have summer forest fires in the Northwest with the smoke migrating into our area meaning more days of inside activities. During the winter, I can step outside and know immediately if someone in the neighborhood is burning their fireplace
or woodstove. We don't have any humidity problems here, but temperatures above
~90*F in the summer and below ~40*F in the winter really seem to impact me as they did pre-op. I still have to pace myself in most anything I do but nowhere near as much as earlier.

As always, I'd be happy to answer any questions you might have.

7/24/10

And here's Jon's 4-year note re: his post-LVRS status:

"Seven months post-surgery a PFT showed my FEV1 had increased to 36% (PRE) and 39% (Post-Rx) from readings near 20%.
Last week, I had a new PFT and am pleased to report the FEV1 has only decreased slightly to 33% (PRE-Rx) and 37% (Post-Rx) after nearly four years. My Pulmo did put me back on Combivent however and I'm continuing with Advair and Spiriva.
Anyway, I thought some members might be curious as to how the surgery help me over the longer term."

Adina's Story - Biologic Lung Volume Reduction - BLVR

2008-02-11T10:56:00.001-05:00

I was diagnosed with COPD (emphysema) on March 16, 2006. I was fighting a cold and couldn’t sleep. In the middle of the night, my breathing became worse and worse until I finally felt like I couldn’t take a breath at all. I dialed 911. After a four-day hospital stay I came home on 4 lpm of oxygen and unable to walk even a few feet without getting extremely short of breath. It’s been a long process to rebuild myself since then, and at the advice of my pulmonologist I explored lung transplant, lung volume reduction surgery (LVRS), and finally biologic lung volume reduction (BLVR), a much less invasive procedure to reduce the size of the lungs and increase breathing capacity.

On Wednesday, Dec. 19, 2007, I had Biologic Lung Volume Reduction as part of an Aeris Therapeutics’ clinical trial BLVRS Trials. I participated in Phase II of the trials in which 20ml of their proprietary biological gel is applied to a total of eight of the worst places in the lungs – four places in each lung. I was the first one in Northeast Ohio to have this procedure, and it was performed at Akron General Medical Center in Akron, OH, by world renowned Dr. Sanjiv Tewari, who is a specialist in pulmonology and an absolutely fabulous physician. Also in special attendance were Whitney, a representative and trial coordinator from Aeris and Dr. Larry Tsai from Harvard Medical School and Brigham and Women’s Hospital in Boston to assist, if needed . He has done the procedure before; this was my pulmo's first time, but he's such an expert at bronchs that he didn’t need to have any assistance.

Since this was Dr. Tewari’s first time for this particular procedure, he had me totally sedated and put on a vent so that he could take his time because, as he put it, he wanted it done, “perfectly.” I understand that others have had this procedure done under “conscious sedation.”

After the procedure, I was kept for 24 hours in the intensive care unit, which was just a matter of precaution, as well as more individualized care, as my FEV1 is about 23% (0.6 liters), and my DLCO is very low: 16 to 17%. I did very well and came home on Dec. 20. I did have a sore throat for a few days, as well as a very sore chest and back. I also ended up having a COPD exacerbation, which isn’t unusual because of all the poking around in the lungs as well as the placement of a “foreign” material. The exacerbation, though, was not nearly as bad as some I’ve had, and the only treatment I needed was a Z-pak and five days of prednisone.

It’s been five weeks since the procedure now, and I am beginning to see some results. I am tickled pink! I am starting to be less SOB and breathing easier in general. Each day is a tad better than the one before, and I understand right now that I can continue to experience increasing benefits for many months to come.

Prior to BLVR I had to use 4-5 lpm of O2 for exercise, esp. on the TM, to maintain my sats at about 90-92%. Now I can walk on the TM with only 3lpm and my sats stay at about 94-95%. I'm still waiting to see more improvement like that when I'm just walking around the house, etc. I have noticed that I can either walk faster than I used to and not get AS SOB, OR I can walk slowly and not get SOB at ALL!

Also, the other day I bent over to put on my socks - trouser socks, at that - so there was more pulling and tugging. When I was done with an activity that used to make me SOB, I was breathing absolutely normally, and tears ran down my cheeks as I realized that I'd forgotten what it's even like to breathe 'normally.' I can also take much deeper breaths than I used to. And, I'm so used to using PLB that I find myself doing that pretty consistently and then realize that sometimes I don't NEED to!

I have an appointment with my pulmonologist next week, and I have a PFT and other tests scheduled for Feb. 1

I still have a long way to go, but the benefits I'm experiencing so far are terrific. If anyone has a chance to participate in this phase or the next one, which will include about 400 people (I think), I'd encourage you to go for it!

We won’t really know for about six weeks after the procedure if or how much it will help. I’ve had one PFT since the procedure – just 12 days after it – which showed no improvement in my FEV1, but some small improvement in my DLCO. But I’m already getting around better and not desaturating as quickly as I used to.

You can check out how it's done at BLVRS Trials. Just click on the picture or text and a short "video" presentation will appear. I've been told that it takes about six weeks to notice any difference, IF there is a difference. I understand that one of our local newspapers (Akron Beacon Journal) is going to do a big story on it as I am the first person in NE Ohio to have it done - about 39 others have been part of this Phase II of the trials. So I'll keep you all posted

2008-02-10T12:00:00.003-05:00

Muffin's Lung Volume Reduction Surgery

I checked into the hospital at 6:30 a.m. on Dec 13th, 07. They got right into me and asked me to change into their lovely gown and asked their normal questions etc. then came in the anaethesia team to put in the epidural. Others came in and did their things like took blood etc. I was taken down to surgery area about 8:00 a.m. and they told my daughter and Son that the surgery would be about 1 1/2 hours and the doctor would be down to talk with them as soon as he was done. Then I would be transferred to ICU right after surgery for the day, however ICU was full so spent the day in recovery until later in the evening and they transferred me into ICU. There thy discovered something was wrong, and it turned out that I had a bleed (which is not usual, but is one of the risks that go along with any surgery) and had to go back into surgery the morning of Dec 14th. I received 6 units of blood that I know of for sure. I was a bit scared yet pretty calm and really still tired. I felt like I could breath easier as soon as I woke up. Although I did get a little short of breath (SOB) it was different; it was just easier to breath.

The doctor that did the second surgery on me came in to tell me what was going on; I had people all around me. There was the resident doctor there that I seen when I went in for my pre-surgery talk and he also was my doctor taking care of things while I was in the hospital. He said, "There are a lot of prayers being said for you" or something to that affect, then he said, "You will be fine; you will come right through this and will come right back to this room in no time." I can tell you that I truly feel God spoke through that man to let me know that everything was ok. Chances of a bleed are not great, but chances of them finding a bleed are much less and really a critical matter. They are very hard to find most of the time, if they find them. So to me, even though he was on the surgical team, God used him to let me know not to fear, and a calm came over me that I cannot explain; it was like his voice and words were of God and there was to be no doubt that I would be ok. I thank God for answering those prayers, so when I say God brought me through it, I MEAN God did actually guide everything that was done and I believe He led each of the doctors to do as they did, as they opened me up and the bleed was right there, they didn’t have to search for it or anything God exposed it. Thank you Jesus for my life, this day, this breath, the earth and all therein, I give you praise.

I had a sternotomy, they cut through the breastbone, which in a way is good as they don’t go through all those big muscles in your chest then so to me it would make sense the pain isn’t quite as severe. You have pain, don’t get me wrong, but they give you stuff to control it; you just have to use it and I was a little hard headed in that department. I didn’t want to push the button and they cannot do it, but I was stupid; it is best to keep the pain under control. I am funny about medicine... I just don’t like it. Although I knew in my mind it was a temporary med, I didn’t want anything to do with it. They did finally talk me into pushing the button, just not as often as they would like so every time someone came in they gave me the button and said, "Push it." The pain can be pretty intense and I can handle a lot of pain, but to me the end result was well worth it.

I had 4 chest tubes in, 2 on each side, and they keep the excess fluid and blood from surgery draining and keep your lungs up. Air leaks are the most common thing and I didn’t get one until just before going home so had to leave in 1 tube and return to Seattle 1 week later to have it removed. I think the tubes cause more pain than any of it and when they pull them the pain is less intense but still is there. Your pain on recovery is gone in most 3 to 4 weeks, and continually lessens in that time, so for the 1st week being the worst and continues going down from there I was off the pain meds in 3 weeks and the 3rd week being light medication..

I went back to ICU after the second surgery for a few hours and then off to my own room. Friday night they got me out of bed and had me sit in a chair for and hour then a couple hours later the had me walking.

Everyday I had chest x-rays to see how the lungs were moving up to where they belong and watch the chest tubes and just how thing were over all. I thought maybe I would be light up in the dark by the time I got home but nobody said anything so I guess I was not lighting up.

Things went pretty much the same from that point in the hospital; of course I got better everyday. They had me walking 4 times a day and sitting in chairs for movement each day. Some people I noticed walked 6 – 8 times per day, but they were working on regaining a lot of strength and many of them could not even walk out of the room, many walked around their bed and that was their walk; we all have our own limits, each of us being different.

I went home on December 19th 07 with all doctors saying I looked great and was doing way too well to be in the hospital. The average stay they stay is 14 days, and I think I spent 5 days in the hospital, and usually the VATS patients stay that long. If you develop air leaks, that is the most common thing to keep you in the hospital longer until they seal. They say about 95% of patients develop air leaks.

At home I just kept walking around the house doing leg lifts and different exercise with my legs and used the counter in case I needed a little balance and have continued from there. I am now released as of Jan 24th, and start rehab on Monday.

I was very severe with a fev1 of 23 – 25% but I had a high exercise tolerance. You have to have so much rehab before the surgery, which I had done 9 months prior and with my exercise testing with them they said that was great. It is important because it does hinge on how easy you recover. My breathing is so much easier now than before the surgery, and gets better all the time. I will notice more changes over the next, say, 6 months and even up to 1 year. Exercise is the key and if you can’t commit to it after surgery, you will be back to where you were in a very short time.

I would say to anyone that qualifies for it, go for it!!!! It literally gives you a life back!

I would do it again in a heartbeat.

God bless you all
Muffin

April 17, 2008 Update
Wanted to check in so y'all didn't think I fell off the face of the earth. I am in Coos Bay, OR right now and will be heading South in about 1hr. I have walked all over the coast and have not used oxygen except for working out and sleeping since I left, I thought I would need it for walking down the beaches and shopping & stuff like that, but haven't even dropped below 95% Its great I tell you I feel sooooo free.

Anyone out there if you think you may qualify for LVRS or if you don't know, find out and go for it, you will never regret it.

I feel like I restarted my life. I would do it again in a heartbeat.

Y'all have a great day and will check in again when I am at another pc. Waving and hugs to all...

2008-02-06T21:30:00.000-05:00

Jon's LVRS

Surgery Day (Tuesday, March 21, 2006)

I reported to UWMC at 8:45 AM to be prepped for surgery. Spinal epidural and IV's placed in pre-op. Later told that surgery started at 11:30 AM and concluded at 1:10 PM (1 hr 40 mins). I came to in a private room in ICU about 3:30 PM. The epidural would run continuously as long as the suction drain tubes were still in my chest. The drain tubes were sutured in place utilizing the lower two of the three ~1.5" incisions on each side of my chest. The tubes were similar to a "Y" with the common tube continuing to a reservoir where the chest fluids collected. The fluids in the reservoirs were measured frequently.

I also had a self administered pain relief IV that stayed with me for the three days of my stay. I stopped using it after the first 36 or so hours as I really was experiencing little pain and the medication made my mouth extremely dry. I was appreciative of the Foley catheter as I drank what seemed like gallons of water during the first couple of days.

Dinner that night was a delicious spaghetti dinner with green salad. Having not eaten since dinner 24 hours earlier, I devoured it. Turned out to be one the best meals I had while at UWMC.

Day 2 (Wednesday, March 22)

I stayed in ICU until nearly 5 PM as they had no beds to move me into in the telemetry unit. Still hadn't been out of bed for any reason which was good considering all of my "attachments." I was on oxygen 24/7. I also had an IV drip of different concoctions including antibiotics I was told. I received daily shots (3) of blood thinner to prevent clots from forming.

Day 3 (Thursday, March 23)

Got out of bed to eat my meals today and made two separate laps (without O2) around the telemetry floor. I was feeling good with no pain, but had anxiety over how shallow my breathing was. Also, my O2 levels were in the low 80's after exertion while on O2. I coughed up a lot of phlegm (not pretty) which gradually helped the lung capacity. They stopped the vacuum suction on the chest drains today along with the leg squeezers that I wore at night. The Foley catheter was also removed to my dismay as I was growing fond of it. (Too bad I didn't have one in my younger beer drinking days!!) Docs said I was doing great and may be discharged on Friday.

Day 4 (Friday, March 24)

Chest tube discharge measured only a teaspoon or so this morning according to RN. The tubes were removed mid-morning after earlier being told that I would be discharged today. What a relief to have them out along with the epidural and all of the IV's. My daughter arrived from Coeur d'Alene about 12:30 PM and we were on the road home by 1 PM.

Conclusion

The care I received from everyone while at UWMC was phenomenal. I was especially impressed with the technology level which included a data entry station in each patient room as well as a few in the hallways. Each morning between 4 and 5 AM, a portable x-ray machine and technician arrived to take a chest x-ray which was transmitted wirelessly into my data file. There, it and my vitals could be reviewed by the Doctors prior to their 6 AM rounds. In addition, I was transported each afternoon via wheelchair (along with all my tubes and containers) to the x-ray department to have more chest x-rays taken. These also were stored in my data files and could be viewed immediately by anyone with access to the system. Of course, what impressed me the most was the fact that my VATS surgery was done with such minimal trauma to my body. I feel the pulmonary rehab at St. Luke's in Spokane contributed greatly towards my overall conditioning, which otherwise would have been seasonably lower due to the winter months.

After the first week at home, I began daily walks around my neighborhood doing the ~one mile loop now in 20 minutes. I played golf three weeks after surgery.

2008-02-05T17:43:00.001-05:00

THEY'VE HAD LVRS

Following are excerpts from postings in my Guest Book from those who have gone before us and have had LVRS. Obviously, we probably won't hear from those for whom the procedure didn't work as well as they had wanted and we've got to remember LVRS doesn't produce the same results in everyone, but it's encouraging to read about the "good ones".

JON
I had VATS-LVRS at the University of Washington Medical Center on 3-21-06. I didn't experience the pain/muscle problems you noted and was on my way home on the fourth day. It has given me a new lease on life and would recommend it highly to those who qualify.

FRED
I had LVRS on 9-8-99 by Dr. Cooper in St. Louis, Missouri. Would not be here today without it.

BUNNY
I had LVRS on March 3, 2004, and it helped me so much; I can begin to tell you.

CATHY
It's been almost 8 weeks from the date of my surgery and I can say it was worth it.

CATHY (another Cathy)
I had LVRS 1.5 years ago - best thing I could have done. You'll feel much better and the anxiety that goes with SOB will be gone.

Tony - 2007

2008-02-03T23:52:00.002-05:00

January 21, 2007

My doc had to reschedule the PFT so I can’t tell you if there has been an improvement. In my case, anything more than the 23% FEV1 would be welcome. I’ll know in two weeks. I can tell you that there has been a noticeable improvement in my breathing. As you know, I’ve been in pulmo rehab at Temple for the past six weeks. This coming Tuesday will be my last session and I hope to get a good report card for my pulmo doc.

I can do 40 minutes on the TM at 1.8 MPH with a 1.0 grade without O2 and I could go longer but I stop only because others need to use the TM. I’m trying to increase the speed by at least 0.1 MPH with each session. I’ll continue using the TM at home and hope to get to 2.5 MPH for at least 40 minutes within the next two months. I’ll also continue on the stationary bike and light weight exercises. I plan to add stretching exercises to the routine. The doc told me that it takes most LVRS patients who’ve had successful surgery at least six months before they see the full benefits of the surgery.

As you might guess, I’ve been elected “cheerleader” by the techs for others in the pulmo rehab group who are testing for LVRS. The techs use me as an example to encourage others. Most come in using O2 and can barely do a few minutes on the TM. I tell them that I was in the same boat eight months ago and, if all goes well and with no guarantees, they can expect to see an improvement in their condition. I went into the LVRS program almost totally ignorant about everything involved and I’m happy to pass on my experience to others who know as little as I did in the beginning.

The odd sensations in my chest and the mild rib soreness have just about disappeared. The incision is still somewhat sensitive to the touch, sort of tickles, but not a problem. I’m now sleeping through the night most of the time. Before the surgery, I slept through the night but was tired by mid-day because of the effort it took to do simple things. That has past. I can now do a lot more without becoming exhausted. My stamina improves by the day.

My wife and I have decided to sell the house and move into a condo. No steps to climb or lawn and snow to worry about. As a result we’ve been getting rid of 35 years of accumulated stuff and junk plus doing all the sprucing up needed to sell the house. I’m mentioning this because six months ago, I wouldn’t have been physically able to do the necessary lifting, carrying and general cleanup it takes to get the house in selling condition. I do get slightly “winded” but nothing like the gasping SOB of the past I had with physical exertion. Thanks to LVRS and pulmo rehab, I can now do some of the chores I did in the past. Never thought I’d be happy to be able to put out the trash. It wasn’t a pleasant experience to see my wife do this instead of me.

Hope to have another update after I see the doc and have the PFT.

January 24, 2007
Sorry for not sending the update sooner. My computer died on me last week and I’m finally back on line.

It’s been three and a half months since the LVRS, and my breathing continues to improve. Of course it will never be like the pre-emphysema days but I can live with that. As you may recall, I’m selling the house to move to a condo. For the past few months, I’ve been sorting out 35 years worth of collected junk and doing many of the chores I wasn’t able to do before LVRS. I was never able to do 5 to 6 continuous hours of even light physical work. Now I can go almost as long as I want.

Finished rehab at Temple . At home, I do stretching exercises, TM, recumbent bike and weight exercises every other day. I hope I have the discipline to keep up the workouts. There are days when I’m really not in the mood but knowing that I can revert back to my pre-LVRS condition, scares the hell out of me.

The treadmill for me is unpredictable. I usually do 40 minutes but there are many days, during the first 10 minutes, when I doubt if I can get to 40 minutes. Then my “second wind” seems to kick in and I do the 40 minutes. It may have something to do with the way my redesigned lungs now work. I’ve learned that varying speeds and elevation during the exercise helps to get me through. If I feel I’m having a problem at the start speed, I can reduce the speed to something more tolerable. Same with the elevation. I then increase when I feel I’ve caught up.

I was wondering about the accuracy of treadmill speeds. The 2.0 MPH I was doing at Temple felt slower than the 2.0 MPH on my TM. It’s probably all in my head.

During the rehab at Temple , I met a fellow who was on O2 24/7 and was just beginning his LVRS candidate testing. He could barely do more than a few minutes at very low speed on the TM with O2. When he learned that I had the surgery and was doing well, he had many questions. I told him when I started the testing I wasn’t able to any more than he could but that rehab should get him on his way. I could sympathize with him and, on my last day in rehab, I gave him my phone number and told him to call me whenever he had any questions. We’ve now spoken a number of times and he is feeling good about his progress.

Wish I had more to say here for anyone in the LVRS program but you probably saw my posts on the forums letting everyone know that I’d be happy to answer any questions they have about LVRS.

UPDATE - AUGUST 2007

Sorry for not posting more. I've been at the Jersey shore for the summer and don't have a dedicated internet connection.

I couldn't be better. My doc prescribed Spiriva and Foradil but I can't say I really need them. Tried going without and had no problems.
Still exercising as much as possible. Bought a bicycle for the summer which I prefer to staring at a wall on my stationary bike. Usually ride for at least an hour depending on weather. Still use the treadmill. I don’t need O2; I keep a rescue Combivent inhaler just in case, saturation is in the mid to high nineties and I really have to work at getting any degree of SOB. Considering my 23% pre-surgery FEV1, life is pretty good again.

I should mention that before surgery I used a concentrator when exercising. Really don't need it now but my doc recommended using it when I'm on the treadmill because he feels it can only help me to get the most out of the exercise and, judging from the results, I must agree.

The post-surgery recovery period seemed to drag on but, looking back, I'd go through it again in a heartbeat. For those who are LVRS candidates, I can only say "go for it". I'll never be 100% but whatever I am now, is better than what I was.

Tony's Home from the Hospital

2008-02-03T23:40:00.001-05:00

From the Man himself!

November 13th
Hello all! Finally feel up to sitting in front of my computer for a few minutes and I thought I’d let you know where I am in the recovery process. Had the surgery two weeks ago and doctors tell me it will probably be three more weeks before I get most of my strength back. Can’t drive for eight weeks. Too soon to know what I can expect from the surgery but doctors are very optimistic.

Best news I received when I was discharged is no restriction on drinking wine.

Before the LVRS, the only time I used O2 was when I exercised on my treadmill and bike. Didn’t use a portable unit but the SOB during the past six months was getting worse. My doctor confirmed that SOB was exacerbated by a hormone treatment I must take for a prostate condition. Hope this isn’t too much information.

Fact remains I did have emphysema and had only 23% lung capacity.

My surgery was through the sternum. Took out 60% of the upper left lung and 40% of the upper right lung. Had a problem with air remaining in my chest causing facial puffiness but that was easily fixed with inserting two more chest tubes.

November 16th
Dr. Furakawa doesn’t do VATS, sternum only. Feeling pretty good today. I had a therapist visit twice since I’ve been home. Most therapy is for breathing with some stretching. It’s not the same as the pulmonary therapy we know with treadmills and bikes. Purpose is to get your chest and lungs expanded to work better.

I didn’t have any pain after or since the surgery. Occasional discomfort with a chest tube but nothing I couldn’t handle.

Toughest part of this is the prolonged recovery time. One simply cannot expect life to return to “normal” overnight. Patience – Patience – Patience!

December 2nd
Penny, haven’t forgotten you. There hasn’t been much to report for the past few weeks but now I’m beginning to make some progress.

Limitations are no driving for 8 weeks and no lifting anything over 10 pounds. I retired in May this year so the no driving isn’t a problem.

Feeling stronger everyday but still week in the knees. Had six visits by a physical therapist and she had me doing a number of non-strenuous exercises, riding my stationary bike and walking through the house. Weather has been great and I was able to walk around the outside of my house without O2. The good news is no extreme SOB. I did get “winded” but the therapist told me this was the result of my weakened condition and not a pulmonary issue.

Saw my doctor yesterday and got a good report. Chest xray was very good and indicated my lungs are expanding into the areas which were removed. I was able to walk slowly from the car to the radiology department and then to the doc’s office with no SOB. It was a fair amount of walking.

I was getting somewhat antsy with what I thought was slow recovery but the doc told me LVRS needs 3 to 6 months before I get back to “normal” and my progress to date was excellent.

The doc wants me to begin rehab at Temple within the next few weeks. The rehab will be somewhat mild in view of my weakened condition but it’s a start. Also gave me a scrip for regular rehab after I get more strength back.

Penny, the 3 months of rehab Dr. Cooper recommended will certainly improve your condition. When I started rehab, I was barely able to do 10 minutes on a treadmill at 1.5 miles per hour with O2. A week before the surgery, I was up to 40 minutes without stopping at 1.5 miles per hour with O2 and that’s was with emphysema. In my opinion, the rehab will help if they want to retest.

December 13th

Not much new to report except that I seem to get stronger daily. Still tire out around 8:00 PM but that’s to be expected. Still have the creepy things crawling around in my chest and the incision is sensitive but not uncomfortable or sore. Gotta’ love that crazy glue.

I’ve been doing some light rehab at home on my stationary bike and treadmill. Can go as long as I want on the bike and up to ten minutes on the treadmill at 1.5MPH. I probably could go longer but I don’t want to overdo it.

Next week I’ll start a 2 session per week rehab at Temple. Thought it best to start there because they are experienced with LVRS patients. I’ll go to Bryn Mawr after the New Year.

If anyone asks you about the value of rehab, please impress on them that the stronger your muscles are the less O2 needed to help you do things. It really helped me.

December 30th

Started two session per week rehab at Temple last week. They started me on the treadmill and when I asked for O2 they told me to try it without O2. To my surprise, I didn't need the O2. They started me at 1.2 MPH for 10 minutes and I didn't experience the severe pre-surgery SOB I had in the past even while on O2. I could have done more than 10 minutes but they didn't want me to over do it on the first day. In addition to the TM, they use the stationary bike, the arm exerciser and a "Nu-Step" which exercises your arms and legs simultaneously and all without O2.

After the first 3 sessions, I'm now allowed to determine how long I want to go with each exercise. Yesterday, I went for 25 minutes at 1.2 MPH on the TM without O2. They increased the arm and leg tension on the other equipment, which are all more strenuous than the TM, and I'm doing 15 minutes on each one.

Today, I did a non-stop 40 minutes at 1.5 MPH on my home TM without O2 and did not experience anything more than very mild SOB. I was amazed. It's now tougher on the legs than on my lungs. Also do the bike and weights at home. I did learn that walking on the TM doesn't yet compare to normal outdoor walking. Went to a shopping center with my wife and had to do some walking which resulted in mild SOB. Nothing severe but enough to tell me I still have a fair amount of recovery in front of me before walking any distance outdoors.

In the past, simply walking around the house could bring on SOB episodes. No longer. I haven't had any of these for the past 3 weeks. Going up a flight of steps now leaves me somewhat "winded" but nothing compared to the gasping for breath experienced in the past which required 2 to 3 minutes for recovery.

It's been 8 weeks since the surgery and there's no doubt it has helped me. Hard to believe that removing 50% of my lungs could improve my breathing.

Penny, I can speak only for myself but I recommend the procedure to anyone who qualifies. The improved QOL is worth the initial discomfort.

Tony's LVRS....

2008-02-03T23:12:00.001-05:00

Tony M.'s Trip To and Through LVRS
Tony Enters Temple Hospital for his LVRS

When I first started my journal, Tony M. signed it on October 10th. He said at that time he was scheduled for the same surgery on October 31, 2006 at Temple University in Philadelphia. I've asked if I could post his experiences here and he graciously said yes.Thank you Tony and Barbara.The following messages were emailed by his wife, Barbara.

THE DAY - October 31, 2006

Just wanted to send a quick update on Anthony’s surgery…we arrived at the hospital early this morning and he was brought into surgery around 10am. The procedure took a few hours and Lisa & I were able to see him around 3:30pm in ICU recovery. The doctors and nurses all seemed very pleased with how he came through the surgery and will monitor him through the night and into the morning.

Besides being a little groggy, he looked good and said he wasn’t feeling any pain. We spoke with the doctor who performed the surgery and he said that everything went well and mentioned he was happy that Anthony was able to breathe on his on own shortly after he was out of the operating room.

November 1st

Anthony had the open chest surgery. I told him you were asking for him and he said he will keep a record of his recovery to share with everyone. He is coming along and just seemed to feel tired today but all the doctors and nurses are very happy with his progress at this point. Lisa and I visited Anthony today. He’s still in ICU – he did sit up in a chair and had lunch. He felt good today but was very tired. We talked with the doctors again. They may move him to a regular room tomorrow.

November 3rd

Anthony is still being monitored in ICU. Doctors continue to be pleased with his progress but would like to still monitor him as a precautionary measure. He’s drowsy from the medications and is experiencing some puffiness in the face, which is to be expected. The doctor explained this is due to subcutaneous air moving up to the neck/face area. A lot of the puffiness went down today compared to yesterday. He’s in good spirits, although he’s not very happy with the food (or lack of wine!).

November 5th

Lisa and I went to see Anthony today and he’s still in ICU but looked a lot better. They are hoping to take the 2nd chest tube out soon so he can start physical rehab. The nurse had him moving around today and he just got a little tired toward the end of our visit but that was because of some of the medications he is on. He didn’t seem very happy with his lunch…he doesn’t have much of an appetite just yet anyway but I’m sure the hospital food isn’t doing much to help that.

November 6th

I visited with Anthony today. He’s getting a lot of care and attention in ICU. His appetite was better today – he enjoyed his lunch and even had ice cream for dessert.He looks good and still has his sense of humor. His doctor hopes to move him to the 6th floor shortly and start Pulmonary Rehab. When I left the hospital he was watching back to back episodes Of Law and Order.

November 7th

He was moved from ICU to the Pulmonary Floor. When we arrived the nurses already had him out of bed and taking a walk. He sat in a chair for awhile and then wanted to get back in. The doctor was in and said he was happy with the most recent chest x-ray. Tomorrow he will be doing Pulmonary Rehab exercises. Hopefully he will feel stronger each day. He still has one chest tube in and is monitored daily.

November 8th

Anthony is on oxygen now. His other chest tube was removed today and his chest x-rays look good. The doctor said his lungs are expanding into the spaces that were cut out. They take several chest x-rays each day. He was sitting in a chair when I arrived at the hospital today. This morning he had taken a walk with the nurse and also did some bicycle exercises. The walking did tire him – but hopefully he will feel stronger each day. His incision is healing nicely and he’s in good spirits.

November 11th

Anthony came home from the hospital today.

Time Out for a Pep Talk!!

2008-01-27T23:49:00.003-05:00

Even though I hurt, it's a 'good' hurt. When you've done something you know is good for you, it's a good feeling. Each of us should be getting the same good feelings every time we accomplish something we don't usually do...for some, it'd be just getting out and about; for others, it'd be getting into an exercise program or starting or increasing our exercise at home; for others, and this is the biggie, it'll be when you quit smoking. What a feeling of accomplishment you should be feeling!! Don't dwell on the cigs you can't have anymore; dwell on what a great thing you've done for yourself. No one else did it for you...just as exercising, no one else can do it for you. YOU did it!
Pick something you've been saying you can't do, something realistic (not climbing Mt. Everest or running in a marathon) and try to do it....one step at a time...one foot in front of the other...one unsmoked cig in the trash at a time...one slight increase in either time or speed on the treadmill at a time. Then stick with it and be proud.
Each one of us has a reason to hold our heads up high. You’ve found this story in your quest to conquer, or at least tame, your disease. That's the first step. Each one of us has a different second step to take...go for it!

2008-01-27T23:17:00.005-05:00

Here is my exercise routine for the 4 hours a day, 5 days a week pre-op schedule they've given me. Upper body is done M, W & F and lower body is T & T. On all days, we also have 30 minutes of floor exercises (ankle weights, therabands, hand weights...a lot of stretching and such), 20 or 30 minutes on the recumbent bike and 20 or 30 minutes walking the track plus 30 minutes of class.

1/14/08 – Day 1
Today they had me doing 10 reps of 6 machines (triceps, arm curl, chest press, row, deltoid, squats, pulley, and some sort of arm raise. Then the floor exercises followed by 10 minutes on the recumbent bike and 10 minutes on the track. The talk today was on osteoporosis.

1/15/08 - Day 2
I did 10 reps of seated leg press @ 60 lbs, 10 of leg extension @ 20 lbs., 10 of leg curl @ 30 lbs, and 10 of hip abduction @ 20 lbs. Then you step up and down the stairs (3 steps) 3x, do heel raises, calf stretches and hamstring stretches. Then on to the floor exercises, increased to 20 minutes on the bike and 20 minutes on the track. Had a talk on abdominal breathing today.

So that's how we spend our 4 hours. I don't know if I mentioned it before but 98% of our group are either waiting for or have just received lung transplants. I'm the only LVRS one there. And such an upbeat bunch. The one fellow said he'd do it all again (get the tx) if he had to. I tell you, they're all in better shape than I am as far as the walking goes (even the ones that haven't had the tx yet). I had no problem doing 30 minutes on the TM at home but walking on the track is hard. And they're not about ready to let me use the TM. Found out today that M, W, & F we only have to do 20 minutes on recumbent bike and track and T & T we do 30 mins.
I hate T & T!!

I don't get sob until it's time for the bike and the walking. Unfortunately, those are at the end and I'm really sucking O2 during the walk. Do NOT like that part at all!! However, I can stop and rest for a couple of minutes if I get too sob, which I usually do. I just sort of step off the track and do the old 'hands-on- knees-and-breathe’ trick. The first couple of times I did that, one of the trainers would come by and ask if I was okay and I'd just tell them "I'm fine; I'm just breathing", LOL! And yes, I do plb through it all. That's a habit with me. My main problem is that I usually get to the point where I'm inhaling through my mouth but it's really the exhale that counts the most so I do that just fine...usually to the count of 6 or so.

1/25/08

Well, one week under my belt…7 more to go! Whew!! Upped all the weights by 5 or 10 lbs. The walking and recumbent bike are still the same times…but I don’t have to stop and rest as often so something must be getting better although I’m still really sob during the walk. There’s not going to be much to report for awhile….going to be sort of the ‘same ole’ – same ole’ .

1/31/08
Hey, I'm still alive! Still dragging after the bike and the walk but still alive. Whew!! Nothing new to report. I'm going to add some more notes from a friend who had the LVRS last year. Look for the part about Tony, okay? He's doing really great...no O2, no sob. Boy, I like that idea.

2/5/08
Whew, this is hard work!! I really enjoy it until I get to the bike and the walking. Both of those just really drain the air out of me. The thing is, my sats (on 2 lpm) stay in the mid to upper 90's yet I am so very sob! There are days that I come home with ribs that hurt so much...yet there are other days that I come home feeling great! Again, as with the disease itself...good days/bad days.

We had a "graduation" party for 4 of the group. They have finished their 23-week intensive session and now, if they choose, they will continue to work out with the rest of us but in 'maintenance' mode. I think all of them plan to continue...which is good 'cause you sort of get attached to those who are going through the same thing...feel like 'team mates'.

I was talking today with a woman in our group who had a double lung TX 15 days ago. She looks absolutely terrific!! She says she feels it's all due to the tough pre-op rehab Duke has. So, even though I'm not going for a TX (although after seeing her, I might change my mind, LOL!), I guess I should be glad for the torture they put us through, huh?

Oh, I found out I walked 1200 feet on my pre-rehab 6-min. walk. That's pretty good. Actually, in theory, I met all the requirements for the LVRS prior to rehab. So I guess I can really count rehab as wonderful icing on the cake!

2/07/08
Didn't do at all well on the bike and walking today. Even weights, which I love, were a little difficult. I've had some sort of little tickle-cough (dry) the last couple of days...wonder if I'm coming down with 'something'.

2/8/08
Well, last night after dinner I really felt lousy! And no, it's not my cooking...I don't cook. Bob is in charge of meals. Sore throat (gargle with warm salt water), slightly swollen gland on right side, cough, my skin was sore, my hair hurt, my gums hurt, it felt like I wasn't getting any air at all although my sats were where they should be. Pulse was a little high but that could have been the anxious-ness I had from not feeling well. I very rarely get sick...last time was a couple of years ago when I ended up in the hospital with pneumonia...so when I do feel not-so-good, I tend to get very anxious. So, took a little white pill (trusty old Ativan) for the anxiety and tried to go to bed. Well, that didn't work so I just sat up in bed and watched TV. Finally fell asleep around 2:00 but had to get up 3 times during the night to go to the bathroom...VERY unusual. I knew I had to get more liquid in me to replace what was being lost but whenever I'd try to drink something, I'd get a squeasy stomach. Oh bother!

So, needless to say, I am NOT going to rehab today. If I feel better tomorrow, I will work out with the bands I have here at home and we plan on going to an RV show so that will get the walking part in. I WANT MY MOMMY! (As you have probably guessed by now, I'm a lousy sick-person.)

2/10/08
I'm not getting anywhere with whatever it is I have!! Didn't go to rehab Friday, lay around all day yesterday (except for the time on the 'net and some RV cleaning) and really don't feel all that well today. What's up with this?? Unless I make some miraculous recovery today, rehab is out for tomorrow, too. I really hate to do that but got the sore throat back, a slight dry cough (Bob got me some guaifenesin yesterday to see if we can loosen the cough up and get it out) and just generally feel punk.

2/12/08
No rehab today either. I did go to a doctor today, though. Decided to pick the one closest to our location and I really lucked out. The people there are very nice and it's a nice clean facility. So, after listening to my lungs (she could actually hear something in the lower lungs!!), she scripted some azithromycin for 5 days. She said she didn't hear any wheezing so she didn't see the need for pred. She also ordered a white blood cell count to check for infection. Heck, blood draws are done right there in the same facility.

Can't go to rehab until after I see her again next Tuesday. Oh wow!! I'm going to have to do something here at home to keep at least a little in shape. I had bought some sort of exercise system (goes in a bag) on QVC last year...used it once and that was it. Guess it's time to get it out again, LOL!

So, since I don't expect anything too exciting to be happening for the rest of this week, I doubt I'll be updating anything. Just feel generall overall pukey...cough is loosening up, when I cough (which isn't often but when I do, it hurts my throat and gives me a short headache). As you can see, I most definitely am NOT a good sick person, LOL.

2/26/08
Well, here I still sit...although I AM feeling much better. No more cough. Went to the doc today and he listened. Said there is still some wheezing in there but to wait it out over the weekend and if I still feel okay on Monday, I can go back to rehab!! I must just remember to keep my hands away from my face until AFTER I wash with soap and hot water.

So, the next time you hear from me, barring anything really scarey or exciting, will be in March. I think that, somewhere along the line, I'm going to have to make up these 2 missed weeks of rehab but we'll wait and see what is said at the 3/20 appointment.

Cindy-Wis is going for LVRS at UW-Madison and she's feeling a bit poorly right now, too. She's actually scheduled for her procedure on April 2nd. She has a month to get back in shape. So, I'd appreciate it if you all could keep her in your prayers, too. Hopefully, one day, we'll have her success story posted here along with the others.

2008-01-27T23:12:00.001-05:00

So, enough background. Had a pulmo rehab evaluation on 1/09/08 at Duke Center for Living... walked 1100+ feet during the 6-minute walk. Guess that was okay 'cause they didn't say anything. Really nice fitness center...lots of huge windows, indoor pool, indoor track, lots of people and machines. There's also an outdoor track for when the weather turns nicer. …and lots of friendly, courteous people. I fell in love with it! I start pre-op rehab on Monday...5 days a week, 4 hours a day! I'm pooped just thinking about it.

The next day we went to the Duke Clinic where I had the pft (my FEV1 is the same as it was in 1994!), ctscan, abg and general blood draws. Met with Dr. D’amico who is going to do the LVRS. Because I originally was with Dr. Cooper, I really had it in the back of my mind that the open sternum type of surgery was the way to go (that’s what Dr. Cooper does) instead of the VATS (Video Assisted Thoracic Surgery) method that Dr. D’amico uses. Plus, I have been talking (via internet) with Tony who had the open chest surgery and he said it was a piece of cake, relatively speaking. Another woman had the VATS and she had a lot of pain afterwards (from the tubes inserted for post-op drainage, I think) and it seemed to take a long time for her to recover. I’m not particularly brave and pain isn’t really something I’d like on my menu so I was a bit leery of the VATS. However, Dr. D’amico was quite persuasive so VATS it’s going to be.

Duke...very neat place. Beautiful old buildings, shiny new buildings, exceptionally friendly staff (I think that must be the norm in most all big hospitals)...neat tram from clinic building to main building so really saves on walking!

2008-01-27T23:05:00.000-05:00

Hello!! Here I am again. Yes, the journey continues. It’s been a long journey, hasn’t it, with several starts and stops and one very long hiatus! I’m sorry about that and I hope I haven’t lost you all by now. Here is my story….and I’m sticking to it, LOL!!

As requested by Dr. Cooper, I started an exercise program at home. Since I still worked, it was next to impossible to find an official pulmonary rehab that I could join without losing too much time from work. Most of them are in the mornings, the most important time for me at work. Therefore, the exercising at home…and it was really only the treadmill and a stationary bike. Not too impressive but I did work out 5 days a week..for a grand total of one hour a day. That certainly wasn’t going to get me anywhere, was it? Unfortunately, I eventually started slacking off the exercise (in February of ’07); we became very busy at work; I was trying to decide just what to do….so I did…NOTHING!

Fast forward to June or so…I started thinking about retirement. Had a lot of sick days coming so I could actually quit working almost 6 months before an “Official Retirement Date”. At the same time, I realized I could no longer take care of the farm the way it needed to be taken care of and the real estate market was softening at a rather alarming rate so I figured I would sell the house while the selling was still good, move into the RV, and hit the road...south....where it’s warmer.

Now I started researching in earnest new places to have the LVRS done (Baylor in Texas and Duke in NC) and finally settled on Duke Medical Center. NC seemed far enough south that the pipes in the RV wouldn’t freeze yet not really too far away from PA (I’m still a PA girl at heart!) I called Dr. Cooper and asked that my records be forwarded to the pulmonary section at Duke. Submitted my retirement letter to the township citing 12/28/07 as my Official Retirement Date in July. In August I received a letter from Duke advising me of the dates and time to report for (1) pulmonary rehabilitation evaluation and (2) pulmonary function evaluation…. January 9th and 10th of 2008. I told about 3 people that the house was for sale…and it sold in 4 days! Good deal. Even better deal was that we could live in it until December 28th (Retirement Date) if we needed to and the new owners would keep the horse, the cats and the pet turkey!! What a relief that was! It took awhile for the township to find a replacement so I didn’t get to actually leave work until the day before Thanksgiving which didn’t leave a lot of time to sort, store, toss, give away, and pack 23 years of living in a 3 bedroom home and barn! Yes, leaving work was hard. I cried.

Let me tell you….when you’re deciding what to take with you in an RV, you always pack too much and don’t put enough in storage. Why I brought all my “office” stuff (I did computer work for several companies) is beyond me. Why I brought 6 heavy sweaters when we plan to stay in semi-warm climes is beyond me. Why I packed “office” clothes since RV’ing is a very informal way of life is beyond me. Why I packed a kitchen full of pots and pans, silverware and glasses when we already had a complete set of everything in the RV is beyond me. Let me tell you, we left quite a lot of stuff at the various campgrounds we stopped at on the way down and we’re still giving stuff away!

But now we’re here in a really nice park (Spring Hill Park) in North Carolina...about 20 minutes from Duke…very quiet, woodsy, etc. Perfect place for us! Found the nearest Walmart, Lowe’s, grocery store, and drug store so we’re set for the duration, LOL.

2008-01-27T16:57:00.006-05:00

THE STUDY OF CHEST WALL MOTION IN END STAGE LUNG DISEASE
Okay, today is about the research study I've somehow gotten myself into. Went down today and Rebecca and I went way back into the hospital somewhere. Let me tell you, a person could get lost in there and no one would ever find them!! So much different from the hospitals I'm used to!! Anyway, today's test (don't know the name of it; will have to ask Rebecca) is research to see how the different parts of the chest wall (front and back) move either paradoxically or otherwise in a person with emphysema compared to a normal person.

There was a thoracic surgeon there from Brazil, getting some training on this machine and a young female tech (Elena) from Italy who does the testing and the teaching. This machine was first tested and used in Italy to see how leg muscles reacted in certain situations. They've been using it over there for about 15 years. Dr. Cooper wants to get it approved for use here at the U of P because he feels it's a less strenuous way to check a lot of the stuff a PFT shows. It won't show the diffusion but it will show how the lungs and chest are working. As we all know, there are a lot of people who won't or are physically unable to really do the PFT test well and Dr. Cooper thinks this will be the test of choice for those people. Anyway, I rattle.....

They stick 89 little stickers in a pattern on your front and back. The stickers reminded me of that candy you used to get on a strip of paper...little dots. There are 6 cameras (3 front, 3 back) that are hooked to a computer and they're taking pictures of these dots during all the phases of this test. You do each section of the test 3 times. Oh, and I even have a picture of me all "dotted" up! You can't see my face but you CAN see my fat belly and all the dots. They glow, LOL!

That "line" you see along the top of my right arm is tape to hide the O2 tubing because it would cause reflections, too, that the cameras would incorrectly try to pick up. As you can see, I'm wearing a sports bra (yeah, like I'm really into sports!) and they had to tape the straps and the center to make them narrower so the dots would fit.

First of all they have you stand on the treadmill and just "breathe quietly" (normally) for awhile. I guess this is to get a baseline. Then you take a deep inhale and blow it out...not hard...just blow it all out. Between each of the 3 times, you just stand there and breathe quietly. Then you do that "Inhale, now blow, blow, blow, blow hard" part that we're all so familiar with. Finally, you just stand there and when they tell you, you take a big "sniff". Just one sniff then breathe quietly. 3x.

Okay, all the breathing is done. Now we start the treadmill at .5 mph. Man, that's creeping along. 2 minutes of this. Speed it up to 1 mph (2 mins.), 1.5 mph (2 mins) and finally 2 mph (2 mins.) And that's all there is to this test!

I think the hardest part of this test for me was the standing there waiting between sections and such. I have lousy posture and boy, my lower back hurt! They asked if I wanted to sit but there were so many dots and my O2 tubing was so well taped, I surely didn't want to upset anything.

As you can see here, they had to tape the various parts of the bra in order to keep the dots in a nice row without interference.

Gosh, I look round-shouldered. If you get to be in this test and they take a "back" picture, make sure you stand up straight and don't slump!

I guess I was there for about 2 1/2 hours total. Don't get paid a red cent for it...no food, no mileage...just a nice "Thank you". I'll go through this again after rehab, before LVRS, after LVRS, and then 6 mos. after LVRS. That's not half bad. Much better than having to go somewhere every month.

So, if sometime in the future, instead of the full pft, you're asked to step up on the treadmill and have 89 little dots stuck to you, it's 'cause of Dr. Cooper, Rebecca, Elena, and ME! Well, me and a hundred other people that might take part in this research, LOL!I did find out some other stuff, though.

Wow! I just looked at the title of this study: "Opto-Electronic Plethysmography for the Study of Chest Wall Motion in End Stage Lung Disease". Wait a minute...there are those two words again..."End Stage". How are we ever going to get these doctors, even Dr. Cooper, to stop using those words? I'M not End Stage...I'm "Very Serious" but certainly not "End Stage". I'm going to have to call Rebecca and ask if they'll change the title to use the words "Stage IV". Sheesh.

The EASE Trials
Yes, the stent trial part of the bronchus studies. Dr. Cooper's trying to get U of P in on it. A double blind... everyone will get a bronchoscopy but not all will get the stent. This is for people who are NOT eligible for LVRS because their emphysema is scattered all over the place. So, if you've been turned down for LVRS because of scattered emphysema, see if you are eligible for this test EASE Procedure. I know I learned some other stuff, too, but I forgot it already. If I remember, I'll post it later.

2008-01-27T16:20:00.001-05:00

9/13/06
Got the results of the VQ test back today. Although I don't completely understand what they're talking about, I did look on the internet to see the reason for a VQ test and it said "The purpose of this test is to look for evidence of a blood clot in the lungs, called a pulmonary embolus, that lowers oxygen levels, causes shortness of breath, and sometimes is fatal. " The test results said, among other things, that "Low probability for pulmonary embolism". Whew!
My VQ test showed that my left lung got 64.4% of the blood flow and my right lung got 35.6%. It appears my lower third gets most, then my middle third, then finally my upper third. It appears there is decreased perfusion to the upper lobes bilaterally. The left and right upper thirds didn't get much at all. I haven't the foggiest idea of what all this means but it's interesting to read. It does appear to show that my upper lobes are just not doing the job they were hired to do!
The x-rays showed nothing new. The 9mm nodule is still wherever it was in 2003 so that is good, too. Lungs are hyperinflated (which is nothing new).
Okay, onward and upward with more tests on the 20th. I'm interested in seeing just what my PFT shows...especially since I've not had one since my little go-round with pneumonia in 2005.

9/15/06
I've been reading Cathy-MD's reports on her LVRS and I'm sort of having second thoughts about this. She says she's in quite a bit of pain (oh well, I can just moan and groan along with the best of them)...but she DID have a double LVRS operation. And it appears the pain is in the area of the drains...and I think one of those drains was in longer than usual. Bec-Saba said this is normal....so I guess I could manage it...as long as I don't sneeze or cough!
The lady from Dr. Cooper's office called today and he wants to see me at 12:30 next Wednesday instead of 2:00 so now we'll have the great shuffle around of the 4 tests remaining...6-minute walk, abg, ctscan and pft. I SHOULD have called them earlier in the week and told them I was available yesterday and today but.........I wonder if he wants to see me earlier so he can get an earlier start on his weekend??

9/25/06
I've been keeping my eye on Cathy-MD's journal on COPD2. Some of the stuff she said scared me but today she said she's feeling pretty darn good and the pain from the drains is minimizing daily. That is good.

9/26/06
'Tis the night before Dr. Cooper...and I'm nervous as all get out. Not nervous to talk to him but scared of what he's going to say. I am NOT brave enough to go through with this operation even if I am qualified. Chris, Colleen, BJ and Wes have been backing me up so well and right now I feel like I'm falling apart. I'm SCARED. I've just got to sit myself down and remind myself that tomorrow is JUST the talking part...not an operation, for pete's sake. Can't breathe...gotta' go get me an ativan and go to bed. If there was an absolute guarantee that if I go through with the operation, I WILL awake at the end, I don't think I'd be as worried. I'm not afraid of the operation but I sure am working myself into a tizzy worrying about SURVIVING the operation. Gad, and I'm supposed to be the calm one. This is so stupid. I don't think I will include this particular part in my posted journal 'cause it is dumb but it surely helps me to "talk" about it now. I DID start a list of questions to ask if YES and if NO. And I'm sitting here crying. What in the world happened to the "brave Penny" I used to be? Do we lose our courage as we age? No, I don't think so. I think we tend to be a bit afraid of the unknown is all. And, we're more aware of our own mortality. Like I said, if I KNEW I was going to come out of the anesthesia, I wouldn't be bothered at all. Well, now my nose is running so I'd best go play a game on the 'puter and hit the sack.

9/27/06

I have been declared a good candidate for LVRS by the LVRS King, himself...Dr. Cooper!!

So, where do I start? With all the testing done the previous 3 weeks, I finally had an appointment with Dr. Cooper this afternoon. But it was not in his office as I thought it would be...across a desk (you know, like they show on TV); it was in a regular old examination room...just like our docs have.

Okay, first things first. Went to the reception area on the 4th floor, Silverstein, at the U of P. This place was packed!! This is the reception area for LOTS of docs. Thankfully, no one was coughing, sneezing or anything and while there were probably about 30 people in there, it was nice and open...not packed in like sardines (like my own pcp's office waiting room!) I got to fill out 3 pages of medical questions....from birth date to drugs to operations in the past to allergies to health of blood-folk and on and on. It honestly sounded as if I was going to go under the knife today! After filling out that stuff, I was taken back to the examination room where an assistant weighed me, took my temp and BP. She left and there I sat...and of course, nothing particularly good to read. Gotta' learn to take my own book on these trips.

After I had read every chart on the wall and twiddled my thumbs for about 10 minutes, Rebecca (Dr. Cooper’s assistant) came in and asked more questions. She is a lovely young lady and quite personable. She got her information and around 1:30 came back with Dr. Cooper. He looks just like his picture (he was glad to hear this)...and has a lovely smile. Felt very comfortable with him immediately. We social-talked for a bit then he listened to my lungs then had Rebecca listen to my lungs. He asked her to listen to left rear upper then lower and asked what she heard. Then she listened to the right upper and lower. She said she could hear inhalation AND expiration in one section but only one or the other (I forget which) in the other. Then he had me go out in the hall and walk down to one end, turn around and walk to the other end (thank goodness it was a short hall ‘cause I forgot to turn my O2 up!) and then into the office where he listened some more and we talked some more. I can’t remember everything so what follows is just what I remembered and in no special order (darn, I wish I had taken that tape recorder along!)

First of all, I must do 3 months of intensive rehab (sound familiar, Colleen? LOL!) 5 days a week. He said treadmill is machine of choice. If I want to add upper arm/body exercise, that’s good but his goal is for me to walk 1 mile at 1 mph. Heck, I can do that now! This is directed to all of us...he said we have our choice...exercise or wheelchair. Well, that’s really putting it out there, huh?
When we’re exercising, we are supposed to increase our O2 to whatever it takes to keep the sats above 88. Exercise won’t kill us (as long as our hearts are okay!); neither will sob (although it sure feels that way sometimes).

8 days is average hospital stay time if all goes as planned...and then recuperation at home for as long as it takes (4or 5 weeks to be feeling well enough to go back to work).

FEV1 might not increase after LVRS but in most cases they do. I told him I didn’t care about the FEV1; I just wanted to stop being so sob.

One thing he said that did make me feel good is that I asked him about having a hysterectomy after this operation and whether, if I had it done at U of P, would he please confer with the surgeon and the anesthesiologist about my lung condition and what anesthesia I should/could have. He said “Most definitely”.

He asked whether I take a bath or shower and whether COPD was the cause of whatever. I said no.

Asked if I’ve had always had short hair or if it’s short because I can’t take care of it long. It’s always been short.

Do I cough? No.

How many times hospitalized? Just once.

He’s done 400 operations and the mortality rate is about 1 in 100. I asked him to let me know when he does the next 100th operation ‘cause I’d like to be in the next group!

Told him all about the 2 COPD boards. And you know what? Just about everything he told me (except for the actual operation) is stuff we already know from frequenting the boards. And yes, Chris, I did try very hard to keep my mouth shut and my mind open.

He tends to his patients after the LVRS. So it’s not a case of operate and forget. He visits each one rather often ‘cause he wants to make sure all is well for them.

He asked me if I would take part in a research thing they’re doing there regarding the movement of the lungs and rib cage during the various parts of sob. They evidently put you on a treadmill (with O2 if you need it) and put 80-some (at least that’s how many he said) sticky pads on you (like an EKG) and you just walk along and the 6 or 8 cameras in the room are recording this, that and the other thing. Obviously I agreed. Was going to do it today but it was getting late so I’ll go down next Wednesday.

I am not a good candidate for the upcoming stent trials they’re going to conduct. I didn’t ask why.

One of the things he had me do was turn my head all the way to the left then the right. Forgot to ask him why.

He asked if my feet swell at all. I told him during hot, humid weather or if I’ve been sitting with my legs crossed way too long. He feels this is a peripheral circulation problem and not a lung problem.

He said the first 90 days are the serious ones. If anyone dies of lung problems during the first 90 days, he would probably attribute it to the LVRS.

This whole session was about 1 hour! It was great. After he left the room, Rebecca took some information to set me up with a research program down here. I asked her how she likes working for him and her whole face lit up. I gather he’s very well respected at U of P. She told me more about the research thingy and told me to wear sneakers and sweatpants. Some woman evidently showed up in heels! I also told Rebecca about some people having quite a bit of pain with the drains and muscle soreness after the vats operation. She said that’s one of the reasons Dr. Cooper does the one down the sternum...there are few nerves and no muscles there. She also said then the drains can be inserted higher and they aren’t as affected by everyday movement.She's also going to try to get me into a rehab program up here...either St. Luke's or Palmerton. I'd rather St. Luke's 'cause it'd be much easier to get to (and closer) during the winter. We'll see.I will continue to add here as I remember bits and pieces of this meeting with Dr. Cooper. On the next pages, I would like to tell you about the research study I got "sweet talked" into, LOL!

What is a VQ Test and What Is It For?

2008-01-27T15:56:00.000-05:00

Nuclear scanning tests use a special camera to take pictures of certain tissues in the body after a radioactive tracer accumulates in the tissues to make them visible.Two types of lung scans will be done:

Ventilation scan (VQ Test)
During a ventilation scan, a tracer gas is inhaled into the lungs. Pictures from this scan can show areas of the lungs that are not receiving enough air or that retain too much air. For the ventilation scan, a mask will be placed over your mouth and nose. You will inhale the tracer gas through the mask by taking a deep breath and then holding it. The camera will start scanning for radiation released by the tracer and then will produce pictures of its distribution in your lungs. You may be asked to breathe the gas in and out through your mouth into a bag for several minutes. You may then be asked to hold your breath for short periods (about 10 seconds. The camera will be moved so your lungs can be viewed from other angles. You need to remain very still during the scans to avoid blurring the pictures.Afterward, the radioactive gas will clear from your lungs as you breathe. The ventilation scan takes about 30 minutes.

Perfusion scan
During a perfusion scan, the tracer is injected into a vein in the arm. It travels through the bloodstream and into the lungs. Pictures from this scan can show areas of the lungs that are not receiving enough blood. The tracer is absorbed in areas of the lung where the blood flow is normal. For the perfusion scan, the injection site on your arm will be cleaned and an elastic band will be p laced around your upper arm. Then a small amount of the radioactive tracer is injected, usually into a vein on the inside of your elbow. After the injection, the camera will start scanning for radiation released by the tracer and will produce pictures of its distribution in your lungs. The camera will be moved so your lungs can be viewed from other angles. You need to remain very still during the scans to avoid blurring the pictures. The perfusion scan takes about 30 minutes.

Testing - PFT, 6-min. Walk, VQ and X-Rays

2008-01-27T15:49:00.000-05:00

9/8/06 TEST DAY!!!
Home, tired, alive, survived...but only got 2 of the 6 tests done!! What a day. I'm pooped! Such a rigamaroling around. Left here at 8:00 and got down there at 10:00. Easy drive but a lot of traffic. Down the expressway to South Street (exit left), turn right, go to second light, turn left and there you are. Went for the valet parking. $14.50.
The lady from scheduling came down (Artifia) around 10:45, gave us all the paperwork and told us where to go and how to get there.

Test #1 - VQ - Went up to 3 Silverstein and got the VQ test done. Failed that! I was sob to start with and lying on my back without my O2 sure didn't help. They put that mask on and said I would be getting O2 and gas. Well, let me tell you, I breathed and I breathed and I surely couldn't find any O2 coming into that mask! Within a minute, I was close to panicking... "Please, I can't breathe!!". I think it would have been better if they had allowed me to sit up while I was inhaling the mixture and then have me lie down while they took the pics. I was supposed to keep the mask on for 2 minutes but I couldn't even get very far past 1 minute. They said that it was okay; that it had been on long enough for them to get a reading so then they did the dye (or whatever) in the arm and they took a bunch of pics that way and that went okay. The two techs were so very nice about it. Like Colleen said, everyone down there is so helpful and friendly. You feel like you've been their patient for years.
The purpose of the VQ test (*see VQ Test*) is to show how the air and blood are traveling through the various parts of your lungs and where the air might be trapped. My test showed that there is non-uniform air flow with some "tracer" in the left mid and upper lung zones as well as in the right mid lung zone. That's where the air is being trapped. This test also can show if perhaps a pulmonary embolism maybe causing the shortness of breath. How they do it (at least at U of P) is that you lie on a table (like a ctscan table) and they put a mask on you. There's supposed to be O2 in the mask along with some type of gas but I, for sure, did not feel like I was getting any O2. Now, just to show what a woose I can be sometimes, there was a little old lady, aged 79 I believe she said, who had just completed this test and she did a great job! Boy, tail between the legs and head bowed time here, Penny, LOL! The shot in the arm is to show how the blood flows through the lungs. One thing about all this...you sure get a good lung physical!
Then we had to go across the street (through an elevated covered walkway) to the Penn Towers to get the x-ray done. Okay; pretty far, (for me), sob, rest a couple of times but finally got there at 12:15 for 12:30 appt. which didn't get done 'til 1:15. And we were supposed to be at the Presbyterian Hospital, 5 blocks away, at 1:00 for the rest of the testing!
After the x-ray was done, went to admissions to get a blue card that was SUPPOSED to let me use the bus (LUCY) for 50 cents instead of $2. Then no one knew where to get the bus.....so, by the time we finally found the bus stop, it was late and it felt like we had already walked 10 miles! Man, my chest was hurting and I was pooped. It sure felt good to sit on that bus!!
Didn't get to the Presby Center 'til 2:30 and they wouldn't do any of the tests. I asked if they could at least do the 6-min walk test but they said that takes about an hour! LOL! Just how DO they do that walk test anyway, that it takes an hour? As it was, it was now 2:30 and I hadn't had any meds since 6:30 a.m. so I was really sucking in on my O2 so it's just as good they didn't do it.
So, back on LUCY, back to Silverstein, into the records department to ask them to send results of VQ and x-ray to me, too, then finally hit the road for home. Scheduled for 9/20 to get the rest of the tests done and to see Dr. Cooper. I asked why Colleen had a MUGA test and they didn't even schedule one for me and they said that perhaps the latest stress test I had done showed enough. Personally, I'm thinking he already has decided I don't qualify (from the stuff I sent him) and figures there's no sense in the MUGA.
So that's my story. I won't even begin to go into the story of our trip home, going from the expressway to the NE Extension (didn't get an "on" ticket!)....but it all worked out okay and we're home, tired, and will I sleep well tonight. More news to follow....after the next Great Trip on the 20th.

9/20/06
Left here at 8:00 again...down there just in time to catch the 10:05 Lucy to Presbyterian for the PFT, ABG, and 6-min walk. Let’s see....my FEV1 went from .63 liters in Feb of 05 to .52. BUT, I’m still at 20%. Tadaa! Shows the difference in predicted as you age. And my DLCO continues to sink, from 5.6 liters to 4.76. So those are my numbers...those and a bunch of others that continue a downhill slide. Oh well. BUT, today was the first time I’ve ever gotten the bronchodilator via nebulizer AND today was the first time I’ve ever been in “The Box”! That’s where they did the diffusion tests.
Jodi (who did the PFT) kept asking if I was tired. She said some people get tired when they’re doing the test. AND, the lady who did my ABG was most excellent! It didn’t hurt any more than a regular needle stick. If anyone goes to the U of P in Philadelphia (actually to the Presbyterian Hospital which is part of U of P) for an ABG, ask for Gloria...and a butterfly needle. She was goooood!!
After the PFT and ABG (which showed good numbers except for the PaO2 which was 68) off we traipsed for the 6-min walk test. Dr. Cooper wanted me to do it first on room air where I desatted to 81% in 1 min 20 sec and my heart rate went to 122. So we stopped, rested, and then took off on 2 liters of O2. HAH! Sats went no lower than 91%, HR to 133 at 6 mins, and I went 1116 feet, about 92% of what would be normal. BP was 170/68 at 6 mins but dropped back to 110/62 while heart rate went back to 94. Again, they kept asking how tired I was or how SOB I was. I figured my SOB was about a 6.5 (very severe) at 6 mins back to nil about 3 or 4 minutes post test.
So there we are. Back to Penn Towers for the ctscan. They did it somewhat differently than how I’ve had it done at the Stroudsburg radiology center. They did the usual “Breathe in, hold” bit (to show expanded lungs) but then they also did a “Breathe in, breathe out, hold your breath” session (to show somewhat empty lungs). They also did a 3rd way but darn, I can’t remember what it is now. What WAS nice is that they only had you hold your breath for 5 seconds. I could do that just fine. And, do you know what I found out? That voice that tells you when to breathe and when to hold, etc. is RECORDED!! All this time, I thought it was the tech in the other room saying that. Gee. Are we humans well trained or not...obeying a computer! Sheesh.I finally get to see Dr. Cooper next Wednesday. Almost done.

August - Contact with U of P and Scheduled for Tests (Plus Some Second Thoughts)

2008-01-27T15:23:00.001-05:00

8/1/06
Called Dr. Cooper's office today; I spoke with Rebecca this time. She said the girl that's been handling my file (Sarah) is no longer with them. It appears they are waiting for my scans and x-rays and Sarah never told anyone about me. Rebecca said it didn't indicate who was supposed to be calling for those so I said I would do that. So, this is good news, so far. At least I've not been relegated to the “circular file” yet! Then she went on to say that if I don't qualify for the LVRS, Dr. Cooper is going to be one of the doctors doing the new stent procedure...it's approved overseas and will be going into trials over here in the fall. I said, “Oh, the valves” and she said, no, it's different...much like a stent they put in clogged arteries to open them up. Now, this would be good IF my problems were in the medium/large airways but I have a feeling all my problems are in the teeny tiny airways but we will see. So there's the old good news/bad news bit. Good news that I haven't gotten lost in the shuffle nor have I been turned down yet but bad news that it's still going to take a bit longer. Oh well, I've waited this long (since January when Dr. Zasik first suggested LVRS); I can wait a little longer. I just don't want Dr. Cooper to turn me down for the LVRS because he wants to try the stent on me instead. How will I know? I then asked about a guy named Wes from NC. She said yes, he's applied, too. I asked if we could get a group rate, LOL!
Step 4 - ACTUAL CONTACT WITH REBECCA- completed

8/2/06
Contacted Advanced Radiology for scans (they lost my previous HIPPA release so had to fax me another one), St. Luke's (x-rays - they faxed a HIPPA release), Gnaden Huetton (ditto) and Palmerton Hospital (ditto). Signed and sent all those back. Now it's back to the waiting game. I'm sure this HIPPA thing is good for some people but it sure is a pain in the butt. If insurance companies can get all my information and the govt. can get all my information without me having to sign a HIPPA each time, you'd think another hospital could do it too. Oh well. Government strikes again.

8/7/06
Rebecca from Dr. Cooper's office called today to let me know they got my CTscans. However, she is going on vacation and won't be able to review them with Dr. Cooper until after 8/16/06. I told her no problem; I was happy to hear they got them. She's going to Russia. How neat! Anyway, once again, hurry up and wait.

8/28/06
Well, hadn't heard anything from anyone for such a long time so I called Rebecca again today. She had a nice trip to Russia. Said Dr. Cooper was in surgery but she would talk to him when he got out...if not today, then Thursday or early next week. What I really don't understand is how Colleen got her stuff back so fast and it's been so long for me. I guess part of the holdup was the films they wanted. She did say they have them now.
Wes has posted about the stent requirements. Heck, I'm no where's near in those numbers!! It sounds like you have to be almost dead for the stent. Whew. RV and TLC (I think those are the numbers) must be double what mine are...or at least what mine were at the last pft. Come to think of it, I probably SHOULD get another pft since I haven't had one since the bout with pneumonia last year. Of course, I haven't been moving around much (exercising) so.................I just hope working and taking care of animals counts!

8/31/06
Rebecca from Dr. Cooper's office called this afternoon. Dr. Cooper wants to get some testing done (PFT, CTScan, VQ test, ABG and 6-min. walk) down there. She also asked if I'd like to be considered for a TX and I said, "No, thank you; not at this point in the game." Plus, TX cutoff is 65 and I'm only 1 1/2 months from there so it may be a moot point whether or not I want it. So anyway, tentatively scheduled for Day 1 of testing for LVRS on Friday, 9/8 and then more testing and interview on 9/13 at 11:00 a.m. They also want to do a 6-minute walk test but I know I'm going to die during that so they might as well schedule that first then we won't have to worry about the rest of the testing! I'm not afraid of the testing but right now I AM afraid of the LVRS 'cause my sob has been so horrible lately (even though the sats stay pretty good)...and I don't know what I'll do if they say 'Okay, let's go for it' 'cause I have to think of what I'm going to do for "after-care". Chris (COPD Support) told me she didn't have anyone for "after-care" either but she got a visiting nurse in to help. Hmmm, wonder if such is available up here? Gotta' check into that.
Step 5 completed - SETUP FOR TESTING, FINALLY!.

Oh well. I am scared, just wanted to say that. Funny thing is, I don't think I'm scared of the LVRS, really, even if I just said I was in the previous sentence, LOL. I think I'm more scared of people telling me (docs) that I should consider having a TX and me not wanting a TX. Does that mean I'm going to die soon if I don't have the TX? Is that ridiculous or not? I'm also scared of not having someone I can lean on. I'm scared I don't have anyone to tell my scares to...someone in person. I'm too old for this stuff, ya' know! I wonder if I should mention the ovary problem to them while I'm down there. I could take the test results along with me, just in case. I mean, it'd be dumb to have the LVRS and then die of ovarian cancer, huh? And I've not had a really good heart test done recently. I guess they'll think of that. Boy, talk about being a worry-wart!!

9/1/06
Realized today that my testing and interview on the 13th conflicted with Karen H's vacation (and Karen R's day off) so I called to change it to the 20th. That's a bit of a bummer but Dr. Cooper is only available for interviews on Wednesdays. Oh well.

9/6/06
Called to check on appt. at U of P. Well, heck, they didn't even have me scheduled!! The scheduling lady said she'd call me back.

9/7/06
Well, she never called the 6th so I called again this morning from work. The only way they can schedule me for tomorrow is if I first meet her and then go about 5 blocks down the street to get the tests done. ???? This doesn't sound too organized at all. Sort of scarey right now. I really am getting second thoughts about this (first of all they never got back to me after the FIRST contact then they can't find my records and now this scheduling thing. Colleen said all her tests were done in the same building). Oh well, I might as well at least get the testing done and then, IF I qualify, I can decide if I want U of P or Temple. I mean, this has been dragging on since June and it's always U of P that's dragging their feet. That just doesn't give me good vibes.
Chris is keeping in touch to keep my spirits up and BJ-TX called this evening to see how I'm doing. I've also been reading Cathy-MD's LVRS Journal. It's both encouraging and scarey but it IS good reading.
Today was NOT a good day emotionally at all. After work, I went to get my hair done (cut and color) then to Walmart to get cat and dog food. Got out to the truck and I couldn't load the dog food into the truck!!! I tried and tried but got so sob (with O2), I thought I might as well die on the spot! Finally swallowed my pride enough to flag a nice young man who came by and I asked him if he could load it. He was very nice about it but it made me feel sooooooo bad. I came home, told Bob he could unload the whole damn truck and I went into bed and curled up into a fetal ball and cried! I COULDN'T LOAD THE DAMN DOG FOOD!! What the hell am I doing here then? What the heck good am I anymore!? I'm going to bed.

Organizing Records and Contact with University of PA

2008-01-27T14:42:00.003-05:00

6/19/06
Took the day off from work today (Monday) to call the University of Pennsylvania lung center. Talked to Sara of Dr. Cooper's office and told her my pulmonary doctor had recommended I get evaluated for LVRS. I have been thinking about this since my visit with him last fall and, with the encouragement of Chris, Wes and Colleen from the copd support board , I have finally gotten my rear in gear!
I'm not sure I'm going to like this trip but I also don't like getting sob all the time (except when I'm not doing much) and if this relieves that sob, I'm all for it. Plus, Chris and several others said it really helped them and they'd do it again if they could. Colleen (from Effort, right down the road from me) is REALLY brave and testing out for a transplant. Nope, that's not for me. I'm not that brave at all. Plus I'll be too old in a couple of months...which may be a good or bad thing, depending on how one views it.
Anyway, I am to send copies of ALL my tests down to him and have all CTScans and x-rays sent to him. I called Advanced Radiology in Stroudsburg for my CTscans. They said I would have to sign another HIPPA release form to include either U of P or Dr. Cooper so they're going to fax it to the office and I'll get it tomorrow and fax it back.

So, Step 1...THE PHONE CALL ...completed.

Started getting all my testing results and other medical records together to take to work tomorrow to copy. I've got reports going back to 1994 so this will be interesting. Gonna' be a semi-large packet. I've sorted them all in order...all Pulmonary Function Tests (PFTs) together, all CTscans together, all x-rays together, my hospital stay (2005 - pneumonia) in one packet, my 2 6-min. walks and the bicycle stress test together, and then miscellaneous stuff (dubotamine stress test and an echocardiogram from way back). Probably sending too much but he can throw out what he doesn't want.

6/22/06
Back to work. Got the FAXed form to sign from Advanced Radiology giving them permission to release CTscans to U of P AND Dr. Joel Cooper. Also copied results of all my PFTs, xrays, ABGs, and scans plus the stress test, the 6-minute walk tests, and the report of my hospital stay last year. I hope this is enough...and not too much! Off in the mail with that, tomorrow.

Step 2 - ORGANIZATION - completed

6/23/06
So, off all my reports went to U of P today! I also included an "introductory/background" memo to Dr. Cooper so he could read a little about me that doesn't show up on the reports. I think I still have to call St. Luke's 'cause I probably have to sign a release form for the x-rays. Guess that will have to wait 'til Monday.

Step 3 - MAILING OF STUFF - completed. Next comes Step 4 - "Wait and See".

6/27/06
We got sent home from work early today because there has been so much rain the last week, creeks are flooding and closing roads. The pond down the road went over the road this morning so I drove through about a foot of water. Anyway, haven't heard anything from U of P and I'm not sure if I'm happy or not. I will be disappointed if they say I DON'T qualify but I'll be scared if they say I DO qualify. Very scared, I think. You know, when you're having a "good breathing day", you sort of think "Why go through with this; why rock the boat?" but then on the "bad breathing days", you figure you'd better get this operation and soon! Humans, at least THIS human, can be a little weird sometimes!

7/4/06
Well, nothing's happening as of this holiday time. I haven't called down there yet because of all the serious flooding we had (and they had) last week but I think I will call this Thursday. I should also call the ctscan place and see if U of P called them for the scans or not. If not, I will ask that they send them down.
Isn't it funny? First you DON'T want to hear and then when you don't hear, you WANT to hear from them. I have a feeling they looked at my file and decided I was way too far gone to even think of LVRS.

7/5/06
Well, got a little nervous so finally called. They said they just got the files on Friday (??) and Sarah (assistant) is going to look through them and see if they need anything else. She is going to call for the scans and I shall call St. Luke's and Palmerton and ask them to forward any x-rays down to U of P. This certainly isn't the prompt response Colleen got but at least I've not been turned down...yet!

7/8/06
STILL haven't heard back from U of P. I just doubled checked and I sent all that information on 6/23...and Sara at U of P said they didn't have any flooding....so how come Colleen got a response in 3 days and it's taken ... oh, I just looked...it's only been 2 weeks. My, how time seems to drag when you're anxiously waiting for something!
I've wondered what I will do if I get turned down. I think I will be very disappointed, to say the least, and then I think I might look into getting the TTO system. I'm so tired of this nose hose. Only trouble with the TTO is that when I'm at work and have to get up to go to the files or wait on a customer or something, I just take the cannula off and go do whatever then put it back on when I get back to my desk. Won't be able to do that with the TTO. Plus, here at home I use the concentrator and when I go out in the barn, I use the portable. I wonder how hard it would be to switch between the two.
As far as a transplant, I don't think I'd want to go that route...at least not at this point. That is a VERY SERIOUS operation and there are too many complications that could arise. I think I'd rather not do that at all. Of course, I'm not at the stage where it's "tx or die" (at least I don't THINK I am) and when I DO get to that stage, I think I'll be too old for the tx anyway so worrying about it might be a moot point. Oh, if only I knew then (back in 1985 when I was first dx'd) what I know now, I'd be in much better shape. If only I had quit smoking THEN! Oh well, can't waste time on the "if onlys"....got to work on the here-and-now and the future. Too soon old; too late smart.

7/14/06
Still haven't heard back from U of P. This is getting scarey. I mean, they could at least call to let me know if they're even reviewing my file. If I don't hear from them by Monday afternoon, I'll call Tuesday from work. IF I'm accepted, I KNOW they're going to tell me to get some rehab under my belt so then I'll have to figure out how to handle that. I guess I'd have to be in a regular rehab program so there'd be proof that I had completed one so I guess that means Palmerton Hospital again. I f so, I'm going to go to the Pulmo Rehab this time and not the Cardiac Rehab. I really don't like (and haven't heard good things about) Palmerton since the two local hospitals merged into the Blue Mountain Health System. Heck, this is the hospital where I took my 6 min. walk tests and they had me walk for the full 6 mins. even though my sats dropped to 74! That doesn't bode good, ya' know.

7/21/06
Well, here it is, Friday the 21st, and I STILL haven't made that second call to U of P. What is going on in my mind? Why am I afraid to call them? Either they're going to say "yes" (if it was "yes", I figure they would have called) or they're going to say "no"....easy as that. Oh, there is the 3rd alternative..."Please come in for more testing". I wish I could be like others on the board that just take the bulls by the horns and keep on going, pushing...until a problem is solved or a solution is reached. Me? I just wish-wash along.
I think I'm going to join the St. Luke's Center across from Kattner's and start exercising more. AND, Bob is going to go with me...come hell or high water. He's overweight and his back hurts...hmmm, those two tend to go together. It'll also help his depression.

O2?? Second Pulmonary Doctor & First Mention of LVRS

2008-01-27T14:06:00.001-05:00

Even though I fired my first pulmo doc, I knew I needed pulmonary rehab even though I still led a rather active life. Basically, I needed 'disease specific exercise'. After asking around, I finally went to the Palmerton Hospital, the only hospital in the area offering pulmo rehab.

Before enrolling in rehab, I had to have a stress test...on a bicycle...breathing tube in my mouth, wires hanging all over. Final decision of pulmo doctor attending.... “Severe exercise limitation due to both cardiac and respiratory compromise.” Also saw the statement...”Vertical axis and p. pulmonale at rest.” P Pulmonale?? That’s my heart!! Hit the COPD boards, almost in tears ‘cause I was sure I was going to die within a year, and got reassured by Larry/GA, Wes, and a couple of others that the end wasn’t as near as I thought. Whew! Another great fear alleviated by the people on the boards.
Asked the rehab staff who they’d recommend as a pulmo doctor and they said a Dr. Zasik from the Bethlehem Pulmonary Associates. He comes up to Palmerton once a month (did I tell you we're in a rather rural area of Pennsylvania?) so I made an appointment with Dr. Zasik. He “hmmmm’d” and “ahhhh’d” and listened and probed and said he would get me into rehab but I would have to wear O2. O2??? Did he say O2??
Back to the boards I went. I’m too young for O2! I’m not sick enough for O2! HELP!! Again, gently (well, sometimes not so gently) I was told that O2 was good for my heart, my lungs, my liver, my kidneys, and all those other little organs living inside my body so off I went to rehab...wearing O2. My pcp must have been doing something right for me, though (except I SHOULD have been on O2 much sooner) because Dr. Zasik didn’t change a single med.
The status quo stayed pretty even for the next year or two. One bout of pneumonia landed me in the hospital for 2 weeks in January of 2005 but, contrary to what pulmo doc #1 said, I did come out!
Several times during my visits with Dr. Zasik he asked if I’d consider a transplant. Nope; no way, thank you. I was quite happy with the way things were going. Then in November of 2005, he suggested I look into LVRS. He gave me the name of a doctor at Temple University in Philadelphia but around that time, Dr. Cooper, THE doctor in LVRS, moved to the University of Pennsylvania. Heck, I figured if I was going to be turned down, I might as well be turned down by the best! So, gang, sit tight.....here we go!!

I Get Diagnosed with COPD

2008-01-27T13:48:00.002-05:00

I was first dx’d (diagnosed) with emphysema in 1985 when I took myself to the local ER because I was just getting short of breath for some reason. I KNEW the air was going in and out but it just didn't feel like it was "doing" anything in there. The doctor on duty that night was very astute in that he ordered some nuclear tests plus a few others...that same night! He even called in a specialist to perform the one test. I guess it was a slow night in the ER.

After reading all the results, he came back to my little curtained off cubicle and told me “You have emphysema. If you don’t stop smoking now, you probably won’t live for 10 years.” “Well”, thought I, “what does this doctor know. I’m only 44 and only ‘old’ people get emphysema.” So I thanked him very much and went on home and continued to live my life as before...giving riding lessons, traveling, taking care of 15 horses, hiking, fishing.....and smoking. 1994 came and went. I was still alive!! See, I didn’t have emphysema after all. Sure, I got a little sob doing certain heavy work but what the heck, I was getting older (54, now) and it was to be expected, right?

I started working for the township as zoning officer and was still able to go out and do property inspections and the other physical stuff that was part of my duties. And each time I had my yearly doctor’s visit, he would ask me ”Have you quit smoking yet?” “Nope, not quite.” I had quit a couple of times....once for a couple of months; another time for a whole year...but then something would happen and I’d reach for those cigarettes. Or my boyfriend would nag and nag me to quit and I’d just keep on smoking...just to spite him!! Little did I know, huh? My Mom would have told me I was “cutting off my nose to spite my face”....whatever the heck THAT means.

Lesson Forwarded ... If you find yourself getting short of breath on exertion ... walking, carrying groceries, playing with the kids or grandkids ... get your doctor to order a Pulmonary Function Test!!!

I Meet My First Pulmonary Doctor

2008-01-27T13:48:00.001-05:00

Fast forward to 2002. Hmmmm, can’t get out and about for work as well as I used to be able to. Hmmmm, it takes me twice as long to clean a horse stall now. Hmmmmm, those 50-lb. bags of feed sure seem to be getting heavier. Hmmmm, better look into this.

That’s about when I found the COPD-Support and COPD International boards. Holy cow, you’re supposed to be seeing a pulmo doc, not just a pcp. Holy cow, you’re supposed to get a 6-min walk test (to see if you should be on supplemental oxygen) and you should go to pulmonary rehab. Wow! Blink, blink....light bulb going on.

And so started my education on COPD. I learned you usually cannot get into rehab unless you’re not smoking...so I quit smoking. Just tossed them out the window one day and said “That’s that. I am not a smoker.” So easy to say; so difficult to do, sometimes. Whenever the urge to have a cigarette hit, I’d clean some part of the house. I had the cleanest house in the area for awhile there! Luckily, we couldn’t smoke at work so there really wasn’t a temptation there. Another thing I did was stop going into the store where I usually bought my cigarettes. I even took a different road to work so I wouldn’t even go past that store. And that was that!

Found a respected pulmo doctor in Stroudsburg...who told me during my second visit to him that if I ever went into the hospital, I probably wouldn’t come out!! SCARY!!! Cried all the way home; called my kids; called friends....and eventually fired the doc! He was going just on my numbers, not on ME...and that’s what counts in the long run. He saw that my FEV1 was .61 liters...very severe. He didn’t notice that it had been at that very same number since 1994. Nah, I surely didn’t need someone quite so blunt, thank you very much, no matter how good people said he was.

Lesson Forwarded .... If you smoke, STOP