The LVRS (Lung Volume Reduction Surgery) Information Page


The information contained on this page includes diaries of an LVRS recipient and also personal experiences of those that have had LVRS. It gives their account of receiving and living with this surgery.  It has been provided as information only for those seeking information from a patients' standpoint.

The information herein is not meant to be anything but personal experience, It should not be interpreted as medical advice. For medical advice, you should always consult your physician.

Personal Experiences  |  Diary of an LVRS Recipient (Richard)
LVRS Journal (Joe)  |  Personal NETT Experiences

 

Personal Experiences
 

Surgical removal of bullae, whether by resection or by laser, is called bullectomy. This procedure helps only a select group of people -- those with very large bullae localized in one part of one or both lungs. When the NIH decided to suspend payment for LVRS except for a controlled study (NETT), many surgeons continued doing the LVRS but called it "bullectomy" in order to bill it to Medicare. As a result, Medicare discontinued payment for bullectomy. Further, most surgeons now believe that stapled resection is a better approach than laser, as lasers can treat only the surface of the lung, nothing deep within. Not withstanding both of these things, laser surgery bullectomy is still available for private pay, or, perhaps for some private insurers. I believe it is still practiced by some surgeons, including the founder of the technique, Dr Akio Wakabayashi, at the Wakabayashi Institute, Irvine Medical Center, 16300 Sand Canyon Ave, Suite100, Irvine, CA 92718. You can read Dr Wakabayashi's introductory discussion of bullectomy at http://www.wakabayashi-clinic.com/chapter3.cfm  Frank NV

I have been reading the conversations going on about LVRS. I had mine done in 1985 and I am still here today at 80 years. It saved my life and my doctor or surgeon was wonderful. He wasn't a specialist and all I had was a cats can and four different doctors gave their opinion. It lasted me over 10 years and still to this day I still drive ,my car and live along. My heart acted up about two years ago and they put me on oxygen and a pacemaker. I still think it did good for my lungs if only my heart had behaved itself. And I had it done in our only hospital, no rushing to a big hospital. Our town is small but I think we have the best doctors in this country. We are connected to the Hershey Hospital and a Harrisburg one. But when I had it done I didn't want to go anywhere else. Carlisle Hospital was good enough for me. So this is my long story...........
God Bless Us All......Ginny 


I just had a LVRS at the University of Pittsburgh on April 8th.   I am not sure what you would like to know.      I was told it takes anywhere from 6 months for a year to really feel the difference but I started the first day I was fully awake.  I felt like I had lungs.  I noticed  that although I still have sob that it is different its not because my lungs are to full anymore.   I don't have to rush for a puffer so I can breathe now I just do my slow breathing and I am fine.   Before the surgery I was using O2 at 2L 24/7 and at 3L for exercising and 4L on the treadmill.  Now it is 1L or none at rest  1L to exercise and still 4L on the treadmill. I am starting to gain my strength back it takes awhile to heal they said probably 6 months to fully heal.  I feel I will be off the O2 by my 6 month check up..  I was hospitalized for 15 days I had a couple of air leaks.  From what I see that is a big problem.  I could of went home in 5 days but the leaks wouldn't close up.  They were going to send me home with a drain but thank goodness they closed...I am not sure what else I could tell you now.  I am going to start rehab again this week I am to start slow and work my way back to where I was before.   If you have any questions I would be more than happy to answer them.  Feel free to ask...Best of luck with your LVRS...Keep us posted on your progress etc....Sandi in Ohio  

UPMC may not be doing laser any more when I was just there for my LVRS and I was told the results they had with laser was not to promising. They do one called VAT which I had where they only make 3 holes and use a camera....  I will see if I can find out for sure this afternoon. The VAT surgery only has 6 incisions.  I had two small and one larger on each side.   I had the top of the right lung removed and parts of center on the left. In all I had 30% of my lungs removed.... Sandi in Ohio.  We are sorry to report Sandi's passing on 8/16/2000 


I am posting this to the group in case some of our newbies might  be interested.    I have had laser surgery on both lungs.  It was done at the Wakabayashi Institute in Irvine California.  They only do one lung at a time and even though it is laser it is still major surgery.  They require you to check in and start tests 10 days prior to surgery so that if a heart condition is revealed, the it hopefully can be taken care of before your surgery date.  The surgery is referred to as Laser Bullectomy, however they have another name for it now...pnuemoplasty something...Never did get that  right!   Wakabayashi Institute  16300 Sand Canyon Ave, site 100   Irvine Calif. 92618  800-500-2535   714-753-2333 Ask them to send you a video. It is located in the Irvine Medical Center, so    everything is right there.  That is where the surgery takes place and that is   where you recover.  Have you checked to see if your insurance company will   pay for it?  It is very .expensive.  My first surgery was very successful and my capacity went from 23-25% to 37%,  which is a huge difference.  I was able to do things that I hadn't been able  to do for a few years prior to surgery.   Just to get up in the morning and  feel great and take a shower and get dressed for work and make the bed...And  to have energy! .Things that normal people take for granted.  It was a joy to me...then two years later I caught a terrible pneumonia bug... a long recovery and it set me back to where I was before my surgery.     The second surgery did not have the same wonderful results...I don't know why, but it was very little improvement.  I think it depends on what kind of Bullea you have.  If you have large you are a perfect candidate. Mine are diffuse and throughout  the lungs..  One of our members, Lois Dickson had the same surgery at Wakabayashi and she is still doing great,   .Different people, different lungs... This is not a miracle cure.  I think the technology in itself is a miracle....But the lung disease continues and so the effects do not last forever.  One woman I met was having her third Bullectomy...Every two years or so she returns, she must have great insurance.
I hope this helps anyone who is looking into this...Any other questions, just post to me privately.  Susan in NM

They do just about the same procedure as Chapman Institute in Orange, California. But that is most stapling and lung reduction.  Wakabayashi is mostly laser with some stapling.    Actually, the surgeon makes a total of 8 incisions. He makes two incisions in one area. one is for the camera and the other is for the laser, so he is using both hands.    Both of my surgeries covered four different areas of the lung. The surgery takes anywhere between 2-4 hours.  Susan in NM


The University of Pittsburgh Medical Center (UPMC) had a great web site showing how they do that.  Instead of separating your sternum (breastbone), they make little slits between ribs.  Then they go in with tiny TV cameras to look around, take the cameras out and put scalpels in, and Snip! Snip! Snip! Recovery is faster than with the median sternotomy, they say, and the results are comparable.  The article is, "Laser/Stapled Bullectomy for Emphysema," and be sure to see Figure 1 which shows what emphysema is doing to our lungs.     It's at:  http://www.upmc.edu/clc/LRS.htm Hope this helps. Jack Peterson Atlanta
medjep@emory.edu
 


I am in the NETT program, but, unfortunately, have been randomized to the medical arm of the trial (no surgery).  But I did go through and pass all the tests for LVRS.    As to the heart condition, they use an echocardiogram to estimate pulmonary tension (blood pressure in the lungs). If that test is marginal, they would ask for a heart catherization to actually measure that pressure. I think that means that congestive heart failure is not automatically a disqualified, - it depends on the degree of congestive failure. The NETT surgeon told me that the generally accepted practice now is bilateral stapled lung volume reduction surgery, done either via median sternotomy or through a video assisted thoracoscopic technique (VATS). However, the laser surgery was initially widely practiced. It's chief developer and proponent is Dr Akio Wakabayashi, and he may still be using that technique.    His address is (was) Dr Wakabayashi The Wakabayashi Institute Irvine Medical Center 16300 Sand Canyon Ave, Suite 100 Irvine, CA  92718. I do have a reference to a paper written by DR Wakabayashi in the 1995 Annals of Thoracic Surgery: http://198.76.172.231/cgi-bin/bio/con/annals/atseq/60/936/1995 Hope this helps, Frank NV


I had LVRS 3 years ago. It was done thoroscopically and I was stapled.  It's really improved my life style and was off oxygen for about 21/2 years   after the healing period of about 6 mos. I was in the hospital 7 days and went home. I had bullae emphysema. Surgery was done at Medical City
in Dallas, Texas by a Dr. Michael Mack. I was at a breathing seminar recently and some doctors were explaining about albuterol and Atrovent. The albuterol helps open the airway and the Atrovent relaxes the muscle around the airways, that is why we often follow up with Atrovent, it allows the airways to expand easier. I found Xopenex on the internet. It's medical name is levalbuteral. It's stronger than plain albuterol. Since albuterol increases heart rate slightly, some doctors are
concerned about it's side effects. I'm really amazed at the info that can be found by going to search mode. Go to Bi-Pap, C-Pap, nebulizer and etc. it's there. Well, guess I have ran off at the mouth long enough. All of you take care and God bless, Doug Clark

Additional comments:

I had LVRS in June of 96 at Medical City in Dallas, Texas. Both sides were done thoroscopically (sorry about the spelling).
Didn't have to open up my chest, just two small holes on each side where they went in between the ribs into the lungs.. I was in the hospital one week and went home.
 After the healing period, 2 or 3 months I was able to get off oxygen and do a lot more. The year before I had LVRS and was
in the hospital 3 times, each one month, with pneumonia. Since I had the surgery I haven't been in the hospital and no colds or flu.  I went to Rehab before and after the surgery. My lifestyle was improved  I think I peaked out after about 2 1/2 years, going down hill slowly now. I don't regret my decision to have the surgery, it gave me a lot. My friend had LVRS at the same time and they had to open up his chest cavity and go in that way. He had a hard time, was in the hosp. 3 months. He is ok now but he doesn't know if it helped him or not.
Well. thought I would pass this along to those that are interested. By the way, my doctor suggested I go back to rehab. I'm lazy and don't get enough exercise at home. I start a moth of rehab next week. I have always used 02 while sleeping and recently went back on 02 6 or 8 hrs during the day.
Have a good air day
Doug Clark
Denton, Texas  (As information, Doug passed on Friday, August 27th, 1999, he posted this to help others and it will remain here in his honor.)


Hi Joni and others. My LVRS was in March 99---median sternotomy, at U C Davis, not at NETT study. Before I was VERY limited, on 02-2L-24-7...and a bi-pap at night. Now none of those. I am much more active---people tell me how good I look...and how bad I looked....It's a hard surgery w. is why they want intensive pre-surg. re-hab--to get us in the best shape they can---the extensive pre testing is to rule out any problems that may get in the way during surgery. It appears that the centers are very thorough and cautious. If they think you are a good candidate you probably are. I jumped thru lots of hoops for they before they agreed to do surgery. And YES, I would do it again, and advice anyone who's physicians approved to be brave and DO IT. They were careful to tell me they couldn't make me well, but a lot better and that was true.
Hope I don't get a noodle for this, but get asked the same questions often...Good luck--being scared is normal---talk to us when you need to....Barb in Or barbsk@ccountry.net 


To Recap: On 9/18/00 I had an LVRS done at Stanford Univ. Medical Center by Dr. Richard Whyte. It was a smashing success <inject humor here they went in through the sternum :-) >. Came out of recovery w/ no trach; tubes were out on the 2nd day. Had a little trouble keeping oxy levels up higher than 91. Thankfully you guys taught me to PLB, so every time the machine sounded off, I'd start PLB and within 30 seconds or so, all would return to normal.

To tell you the truth, I don't remember the first 2 days. Thankfully.

I have brief memories of my son and a beloved friend arriving. And there was the comfort of my husband being by my side. On the 3rd day I came-to and started noticing things.

BTW, the pain is not at all bad. I was very frightened of the pain factor, but it wasn't at all what I had imagined. The Stanford nursing staff was magnificent. By the 5th day I was eating fairly well. Got thrown out on the 6th day.

Dr. Whyte (surgeon) and Dr. Newman (my pulmonary doctor) were wonderful.

Great senses of humor -- I couldn't have asked for better care. Dr.

Whyte's nurse-coordinator, Pat Grant, is an amazing woman. Never hurried, always supportive. What a team!

I had a slight problem with some psychotic stuff (sp?): I kept hearing children running up and down the halls and Sesame Street on a TV somewhere. Everyone denied that either were present. The weirdest part was that the kids really annoyed me. I love kids. I can't wait for grandkids. I love the sound of children's voices. Go figure :-)

THE RESULTS: Okay, I don't have any PFTs to measure this yet, but...

I CAN BREATHE AGAIN!!

I noticed that going up and down the stairs was easier right away. That was a miracle in itself. When Charley and I resumed our dog walking (we are walked by a 100 lb. German Shepherd) I really got a feel for the improvement. There is a hill at the beginning of our walk. Before I did pulmonary rehab it was really tough going. After rehab it wasn't fun, but was do-able. And now? <trumpet blows here> I'm not even winded! Woo-hoo!

The most important reason for this note is to express a huge thank you to all of you who said prayers and sent good thoughts my way. I am absolutely convinced that things went so well because of the prayers I was blessed to receive from friends. Words can't express my thankfulness. You guys are the best! Gotta go run off all those wonderful digests and get home to cook.

Good night and breathe easily.. I love you all.

Lyn - CA Lyn.Sims@ENG.SUN.COM 


Update 11/5/00

Hi all Up date on trying to wean me of oxygen. It has been put on hold for now until they get the extra fluid off and do some more testing on my heart. So for now I am back up to five liters for exercise and three liters for movement and 2 liters for rest and sleeping.

I will let you all know as soon as I hear something one way or the other if they will try again to lower the flow rate.

9/6/00
Hello everyone.

There are so many of you that I need to respond to that it will take me a while. I received over 200 cards while in the hospital from people on this list and on COPD list.

First of all thank you all for the prayers and for the cards and letters.

My surgery went very well and with great results. I had one night on the third day after surgery that was a really bad night. They had a hard time controlling my heart rate it would jump back and forth from about 80 beats a minute to 170 beats a minute. Plus I had an enormous amount of phlegm stuck in my throat that wouldn't come up. They injected a solution into my throat that made me throw up and that brought this ball of phlegm about the size of a baseball up.

Other than that one bad night the rest of it went really good and they kept telling me I was way ahead of normal in recovery from the surgery.

At this point I am still on oxygen 2 liter at rest 3 liter at any movement at all and 5 liter for exercise. They tell me that I should be able to get off oxygen completely in a couple of months.

The pulmonary function test taken after surgery shows a 64 % improvement on the amount of air I can take in and exhale. But they say that much improvement is almost unheard of and it may not last at that rate anyway.

Doctor Joel Cooper is truly a fantastic surgeon whom I would highly recommend to anyone. The care I received at Barnes Jewish hospital at Saint Louis was simple the best I could have hoped for.

I am still fairly stiff and sore and cant stay at the computer for long at a time but I did want to say Thank you for your prayers and let you know I am doing great.
Love ya all
Virgil from Kansas

10/18/00

Hi everyone.

Its been just over two months sense my LVRS was done. Thought I would give an update on how I am doing.

My breathing is far better than prior to surgery. I have not had a serious SOB sense surgery. I feel better than I had in the last ten years.

I am going to rehab 3 days a week. I walk 45 minutes on treadmill at 2.0 mph - 2.2 mph. And then on the days I don't go to rehab I walk at home on treadmill for 30 minutes at 1.5 mph to 1.8 mph.

They had me on oxygen at 5 litters for exercise and 2 litters at rest. This week I got the go a head from all my Doctors to begin tapering off oxygen. They plan to cut back one litter a week for exercise. If this goes OK they will cut my at rest oxygen down to one litter in a couple of weeks and then be clear off it in six weeks. If all goes right.

I also have right side congestive heart failure. My lungs are doing great however I am still having some problems related to my heart condition. My normal heart rate before surgery was around 104 at rest. Now most of the time it is around 127. And I have had three cases where it has went as high as 160 the first few weeks after surgery. During exercise at rehab it has went high enough they stopped me once and two times they have had to slow me down.

I am also having a lot of trouble with fluid build up in my ankles and legs. They have raised my diuretics to twice as much as I was on before surgery and looks as though it will have to be raised even more.

I have had two case of becoming dizzy during rehab, but each time my heart rate and o2 stats were fine. They are not sure what has caused that.

But even with the concern about my heart I feel fantastic compared to before LVRS.
Virgil From Kansas LVRS 08-14-2000
vir.com@PRODIGY.NET  


I had it in April of 96 at St. Lukes in Kansas City Mo. Dr Jeffery Piehler was the surgeon.

The surgery went very well thought I would get out in a week but ended up there for 14days because of one little leak that would not close off.
I was able to do a lot more after the surgery without becoming to sob.

I was able to golf more for awhile, I was off the o2 for about six months during the day, then slowly things started to go downhill again.

I would go through it again if I could, right now waiting on the tx list at Barnes.

My fev1 just went from 15%to 27% so it wasn't all that much but , it was enough to give me a couple of good years . I have never been really sick with the pneumonia cold or infections that all seem to get, I am basically a very healthy person.

I am very sob now when I do anything really have to use pob all the time, as long as I just sit I do very well.

I still do most of all my own house work grocery shop things like that takes me longer then it used to, but it eventually will get done. Vicki in Kansas vamas2@OZ-ONLINE.NET


I'm writing for my husband, Pat, who had LVRS in May: His condition has improved to an extent we hadn't dared hope for. Before the surgery, he was on oxygen 24 hours a day, whether moving around or resting. Even with that, he was so short of breath, he couldn't walk a block without stopping to rest. Any stairs or inclines were great problems, even two or three steps up causing him to become seriously breathless. Almost any physical activity resulted in the same necessity to stop before he could recover his breath.

He was using four inhalers, including the "rescue" one, to which he had to resort often.

After the operation, he didn't immediately leap out of bed and run marathons, but showed a gradual, steady improvement. The first few weeks were rocky--he was exhausted a lot of the time, but he slowly increased his activities and was able to do more. He continued on the daytime oxygen for about two months; at that point, his stats showed he no longer needed it during the day for most activities. He still uses it at night and for more strenuous exercise, but it's now only occasional.

The change in his stamina and ability to do physical things is just incredible. We have a large property with a lot of trees and plants and he has spent weeks now in clearing out underbrush, blowing and raking the leaves to the street, and storing things away for the winter. Far from having to stop and rest every few minutes, he is able to work, slowly but steadily, at his own pace, ALL DAY. He single-handedly fixed up the basement to use as a mini-gym, having his treadmill, exercise bike, weights, and a TV. down there. We plan to fly to California to our daughter's for Christmas, a venture he couldn't even have considered before LVRS. Pat no longer uses the rescue inhaler at all and has been able to cut down on some of his other medications (sorry, I'm not sure what he's on).

Pat had the surgery at University of Pennsylvania Hospital, paid for by the Veteran's Administration. Later, he went to a local hospital for pulmonary rehab, which Medicare paid for. He got the very best of care and we are eternally grateful to his surgeons, pulmonary doctors, nurses, therapists, and other healthcare people for their dedicated and constant help. He follows a steady routine of exercise, is very careful about his diet, and is otherwise determined to do all he can to enhance his condition.

Was it worth it? Oh, baby, it was SO worth it, as the kids would say. It just gave him back his life, that's all.

Rosemary and Pat Molloy, N.J.  paem@WORLDNET.ATT.NET


Peggy Boggess, 1-5-98, Jousha Sonett, Univ of Md. Medical Center.
Thoracoscopy, 30% of both lungs. Preaton1@AOL.COM


I had my LVRS on July 14, 1997. Last year was my best year. I was able to go without 02 most of the day, but used it for exercise and sleep. I also used it to play golf (18 holes), swim and ride a bike. When I did use it, it was set on .75 L.

It has been over 3 years now, and I am not doing as well. When we go back to Colorado, I will be on 2, 2 1/2 L. I can tell I have lost capacity. I can't help but feel the traveling from high elevation to low elevation, then back up have taken their toll on my lungs. I asked Mark on time if the elevation could do it. Apparently, he did not think so. But I really do feel it has.

I exercise faithfully, but I realize deterioration is the nature of this disease.

Peg DeAngelo/ CO via AZ PDean69005@aol.com 


I would like to share parts of a letter that was sent to my Primary doctor after seeing the Pulmonary doctor at UM, who supervised my LVRS five years ago.

"I had the pleasure of seeing Marlene Evans in follow-up here. She is doing quite well, although gradually becoming more breathless. She has not been hospitalized nor has she had any severe exacerbations. (he means this past two years.).

On exam, she looks quite well. Her weight is 133 compared to 142 last May. Her vital signs are otherwise stable. Head and neck exam is unremarkable. Chest continues to reveal decreased breath sounds with prolonged expiratory phase. Heart sounds are distant but normal. There is o clubbing, cyanosis, or edema.

Overall, Mrs. Evans is a bit worse than a year ago. This is not surprising as there is a deterioration in pulmonary function after LVRS noted in a large proportion of patients.  Interestingly, the 6 minute walk appears to be preserved for much longer.

He goes on to talk about my hoarseness, which he feels is caused by Flovent and possibly sinus drainage.

I had this great surgery 5 years and 3 months ago, and have never regretted it for a minute.  I was on 02 24/7 and have not used it since except for a short time two years ago, when I had an exacerbation. I do notice it changing, but they said, at the time of surgery, that they anticipated it would last from 2 to 5 years. I am one of the lucky ones, and I attribute it to quitting smoking when I found out about the E and exercising as much as possible. Also, keep a positive attitude. I thank God everyday, that I had this second chance at a more normal kind of life.

Marlene Evans marnie65@EARTHLINK.NET 


I had this done in 1995 With staples. I'm still able to set up & take nourishment every day. I will say I expected more, but had both lungs done at Chapman by Dr. McKenna. The hospital & staff were super, but I'm not.

After the 1st cold it was all down hill I'm on 02 all the time, which I wasn't & on all kinds of puffers & steriods. Of course it was all experimental  back then, I'm sure it has much improved since. Thanks for the input - Marie Groat  norcnty1@klink.net 


Lynde Morgan 7/19/96 Dr. Joel Cooper Barnes Jewish Hospital St. Louis, MO Angelwings4333@WEBTV.NET 


One lung done, right side 1994  VATS procedure. Lois Dickson peaceful@PRODIGY.NET 


Hi Efforts, Had a treadmill test at Cooperstown today and for all intents and purposes I am oxygen free. I did 17 minutes reached 2.3 mph with a 3% upgrade and stayed above 91 o2. Now I do drop below 88 at home but that perhaps is a reflection of the air in my house? I don't know. Also wore my efforts t-shirt and left flyers. One of the rrt's said she has heard of us.

Keep walking and eat an apple!
6/5/00 Columbia Pres
Linda W in NY  seand@WARWICK.NET


I had LVRS on 9/18/00 at Brigham and Women's Hospital in Boston, MA. The surgeon was Dr. Steven Mentzer.

I am in the finishing stages of editing an LVRS journal that I kept of the procedure. If you interested in putting it on EFFORTS I can send it to you when I'm done.

Joe- CT
JoeKoMarKa@cs.com


I had my LVRS May 21.1996. I did great for 2 years. No more oxygen. I could walk over 1mile without getting winded.  After 2 years I started going back downhill. The doctor had told me the surgery was good forapproximately 2 years. It is
5 1/2 yrs now. I have been back on 02 since 1998. I am still going downhill. I get winded even with 02. Can't clean my own home or go shopping.

All in all I would do it again just to have those 2 good years again.  Hope it lasts longer for all who are having it done now.
God Bless all of you and have many good breathing days.

Irene Bertels
gogogramms@OCTM.COM


Anne McDowell
04/10/00 Chapman Medical Center, Orange, CA.
Deteriorated some after six months, but had stopped all meds after surgery and asthma was out of control.  Will await one year follow-up before drawing additional conclusions.  Continue to feel wonderful and do most anything I want.
ALMBWM@AOL.COM


Since there are  new members to our group and not many  who have had LVRS, I would like to share my experience , if I may.

 It all began in 1996  when I was 50 years old and  having trouble breathing.  My Doctor sent me to a Pulmonologist where tests were run and it was discovered that  I had Emphysema with 41% lung capacity.  I was told that I would not need oxygen at this time since I recovered so quickly from exercise.   I had always been aware of the warning on the ciggie packs but never paid any attention to it. I didn't have any idea of what Emphysema  was,  what it would do,  or what I could do about it, if anything.

 My pulmonologist insisted I join a rehab program.  He immediately started talking to me about LVRS and told me I needed to be tested.  He said the tests  could be done here in town to see if the major part of the disease was isolated in the upper lobes - which is where it needs to be to have LVRS. The results would then be sent to Barnes-Jewish Hospital.  They would know from these results whether or not I was a candidate.  If it came back that I was - - then I could make some decisions and if not, that would be the end of it.

Knowing I had smoked for over 30 years, I was sure the emphysema  was all over my lungs and  would not be considered.  So, I declined the tests,  joined the rehab program and continued on for the next 4 years.

I was approached again in 2000 about LVRS. My doctors were telling me they thought I just might be a good candidate and thought my "E" was more isolated  in the upper lobes - - which is what is necessary for this procedure.  I was still not on oxygen and at 54,  I decided maybe  I should check into this, so I proceeded with the tests.

Imagine my total surprise when the tests came back that the disease was more isolated in the upper lobes and everything looked good enough that Barnes-Jewish accepted me for further testing.

The dates were set and my husband and I left for St. Louis for two days of tests.  After testing I talked to the head pulmonologist and was  told I was an excellent candidate for this procedure but they would not do it because of my age - - they told me I was too young!!  According to Barnes-Jewish, I was at 41% lung capacity and they wanted to wait until I was having more difficulty.

I left his office, went out into the halls of the facility, sat down and cried.

When I got home, I continued on with my rehab for another four years. But, things were beginning to change.  I noticed I was getting worse. I had been told I would get worse over time with age - - if nothing else--- but over the course of these four years I had gone from doing 2.8 mph  on the treadmill down to 2.0 and having trouble doing that. I also had pneumonia once.  But, I still was not on oxygen, although I probably should have been.  I had learned how to hide my breathlessness.

With all of this I was getting  tired of going to rehab 3 days a week - - after all - - I'd been doing this for 7years and I deserved some time away from all this hassle.  So, last July, I decided enough of this - - and I took a small vacation from going to the health club.  What started out as a "couple of  weeks off" turned into 5 months!!!  I had an appointment with my pulmonologist in August 03 and he began telling me about all the progress that had been made in the last 4 years concerning LVRS and he thought I should go back and be tested again - - after all it had been four years.  He wanted to know how I was doing with my rehab and I told him I was tired of going and had taken some time off - - he wasn't happy but said he understood but wanted me to "get back to it ASAP".  He made the arrangements for Barnes and in December I was on my way back for more tests.  But, this time, I told myself I would NOT get my hopes up for any surgery.

To my utmost surprise, I was accepted as a surgical candidate but was told I WOULD go home and get back into the rehab program - - which meant I had to start the program all over from the beginning.  They told me they wanted weekly progress reports sent to them and when all that was finished, they would talk to me about making an appointment for surgery. They also told me I needed to be on oxygen --  2L at rest and 4L for exercise.    So, I came home, went back through re-hab and kept up with all the exercises.

When I had finished the program, Barnes scheduled my surgery for 31 March 04.  At Barnes, they require you to be there one week before surgery for more tests and more rehab. You also have to stay one week after for more testing and more rehab. Depending on the amount of time you are in the hospital, you need to plan on being gone from home  at least three weeks if not four.

By the time I was ready for the surgery, I had gone down to 31% lung capacity which was a 10% drop in eight years.  I WAS READY!!!  I had worked really hard in the rehab program to try to prove I was ready.

I mention all of this rehab and exercise to try to stress the importance of a rehab and maintenance  program both pre and post-operative.  From the time I started in Aug of 96 until now,  much progress has been made in rehab knowledge.  With this disease, it is the single most important thing you can do.

My surgery only lasted about 2 hours.  It was a very painful surgery and a very painful and slow recovery but I would gladly do it all again to have the results I've had.  My surgeon told me he removed two "pillows" from my chest.  The right lobe he removed was  taking up 80- 90% of that side of  my chest cavity and the left lobe was taking  up 40-50% of the chest cavity.  I had become very "barrel-chested" and having to wear "bra extenders".  Within two days of the surgery, my rib cage had decreased enough that I could feel a difference.  By the time I was able to wear a bra, I no longer needed the "extenders".   Before the surgery, my lungs were so hyperinflated, eating an apple would fill me up to the point that I was uncomfortable and having difficulty breathing.  After I got out of the hospital, we went out to eat and I had a hamberger and fries and desert!!!!  And I COULD BREATHE!!!!

I was tested one week after surgery and  had gone from 31% lung capacity to 55% and they hope that will improve.  It normally takes 3-6 months to see the full results of this procedure.

My stay in the hospital was only 6 days - - they told me they had never had a patient be able to do what I was able to do so soon after surgery.  I was able to walk farther and faster on the treadmill  than any patient they had ever had. No one had been released in only 6 days.  Again, I tell you this because I firmly believe it was all due to the rehab program prior to my surgery.

Now,  4 months out from the surgery, I am not on oxygen or any inhalers. The heat and the humidity don't bother me hardly at all.  I can carry the laundry up the stairs.  I can get MYSELF up the stairs!  I can walk the neighborhood with my husband - - and talk and breathe at the same time!!!  I can carry the groceries in the house.  I can hang the laundry on the line.  I can shop at the mall - and carry packages. I can pick up and carry my kitties around. I go up and down the stairs now without a thought.  I can do all the things I used to do before this dreaded disease hit me.  I have my life back!!!

I am continuing to go to rehab 3 times a week where  I'm now doing chair aerobics for 40 minutes, walking the track for 30-40 minutes and doing weights and stretches.

The great people at Barnes-Jewish may not have added years to my life, but they have definitely added life to my years.

Update: 3/3/05
Just wanted to say that I had this surgery done one year ago and would recommend this to anyone whose doctor recommends it. It has totally changed my whole life. I went from 36% lung capacity before the surgery to 67% 6 months later. It normally takes about 6 months to get the full benefits of this procedure. Mine was done at Barnes in St. Louis by Dr. Joel Cooper and my life is totally changed. No oxygen -- can climb my stairs and not be SOB - - was only doing 2.3 on the treadmill before the surgery -- now doing 3.3. (I also have a bad ankle) And, as far as I am concerned, there is no rehab program that could ever do what this surgery has done. I'm thankful everyday of my life that I was able to have this done. Good luck to you!!! Mary - OKLAHOMA LVRS 31 March 04; shooz63549@aol.com


Charlotte Kelley 3/3/05
I am one of the many here who have had the LVRS. I had mine in October last year and it has been absolutely wonderful. I am no longer on o2 and really feel good. If you would like to e-mail me at home I would be happy to answer questions.

I read a lot about the surgery both here on Efforts and some of the medical journals. I had my surgery at Cedars Sinai Medical Center in Los Angeles and I will be forever grateful to my doctor and his group. They were great! Cedars has a good web site on the surgery that would probably answer a lot of your questions, so does Efforts. My Pilmo doctor has a patient who had the surgery seven years ago and is still doing great. I understand it really helps to exercise just as much as you can to prolong the good results and thats what I'm doing.  ckelley29291@juno.com


Linda Watson
Had mine in 2000. Quality of life improved 500% at least, On oxygen at night before, 24/7 for six months after, but that awful weight was gone. Many have had trouble also, see what your doctor says. Gave me at least five years of better health, able to be more active. I was 24%fev1 pre surgery. I reached a high of 38%, my last test in April, I was down to 28%; but I don't feel it. i still have much more energy and mobility than I did before surgery. I think just having less lung tissue to compress in order to breath is a big boost. It's hard to measure that lack of constant fatigue. I gained about 35 lbs (i was 90 lbs) I can eat, still tons more functional. it wasn't easy, lots of rehab and twelve days in hospital. had a hard time healing. They are probably better at getting it done when it's appropriate now, I would head for an experienced surgeon though. Linda W in NY lwatson@hvc.rr.com LVRS 6/2000


Helen in Chiang Mai 3/2/05
I had uni-lateral LVRS almost four years ago. It is major surgery but my pulmo team took every measure to make it as safe as possible and I had no problems. I had a morphine catheter for just two days and after that they gave me Tylenol when I needed it (about two days). I felt a lot better and was no longer SOB at all. My FEV1 improved, but not dramatically, my sats improved but I have never been able to ditch the 02 completely. I am very glad I had it done and have been thinking lately that I might ask about the possibility of doing my right lung....just thinking. I am a long way away so I cannot comment on best hospitals or best states but Dr.Joel Cooper is very experienced for LVRS. Good luck, Helen in Chiang Mai(TH)

Lee Vogel
My name is Lee Vogel and I am the survior of an LVRS surgery. My open chest operation occurred on 10/08/2002 at the Seattle VA. The surgery was performed by doctors from the Univ. of Washington Medical school. It is the best thing that has happened to me since I got this lousy disease!!

If you are a candidate for that surgery - TAKE IT!! There are two forms of the surgery - Laser (reasonably simple procedure - home in 2 days) and Open Chest (like open heart surgery - home in 1-2 weeks). The laser form of surgery is like a walk in the park compared to the open chest form.

Only the top 1% of candidates for the surgery ever fully qualify for and get the open chest surgery! When I say the top, I am referring to COPD patients who are in good physical shape in spite of their disease. That is what I had - they removed 1/3 of both lungs. (I have since met guys with as much as 60% of their lungs removed and doing GREAT!) And, I got it inspite of the fact that I had gained 40 pounds during the process!

John, I had never been sick one day in my life before I got this disease, so it was a shock to me - let alone consider someone cutting into my chest! So, I followed the pulmonologist's advice and got myself prepared.

You are in charge of your health. It is up to you, my friend. You must learn how to manage your disease, learn your meds, be careful of your environments, be prepared for emergencies and set-backs, maintain a positive attitude, take pulmonary rehab after the surgery and then maintain an active (exercising) lifestyle after the operation. If you will do that, you can have a pretty good life for another 25-45 years!!

John, along with all of that is the stress of all the things you must do and learn. You need a way to release that stress for yourself. I chose to write about it so other COPD patients could learn from my experiences - good and bad. Part of that was learning to write poetry about COPD. (I had never written poetry before.) You can read a few samples at my poetry web site: www.livingpoetssociety.com/profiles/grinalot 

After I did all of that, I found support sites like EFFORTS and COPD- International.com. These support and activist sites (plus all the others I belong to) are a god-send. They really do help, educate and encourage.

I surely hope this will help you. Sorry it turned into such a long letter. If you have any questions at all, please feel free to write to me and I will gladly give you access to everything I know.

Lee Vogel grinalot@cablespeed.com

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