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Lung Volume Reduction Surgery

Note: The below are summaries of individual experiences regarding Lung Volume Reduction Surgery. Readers should always consult their physicians before taking any action (or inaction) which may affect their health or involve decision making.

Lung volume reduction surgery (LVRS) is a surgical method to enhance lung function compromised by emphysema, either acquired or from A1AD. Many A1AD patients experience more diffuse destruction throughout the lungs, the bottom lobes being primarily affected.

The premise of LVRS is simple: by removal of the distended, destroyed lung tissue, the diaphragm is allowed to return to its normal position, whereby its function in the breathing process is restored. There are pros and cons to LVRS. It is major surgery. It does not guarantee profoundly or permanently improved lung function. But for many of us who have actually experienced the “before” and “after” of LVRS, the ability to breathe more effectively overrides the concerns. We can breathe better!

By presenting both the pros and cons of LVRS as evidenced by the following individual’s experiences, we hope this summary gives you hope, knowing that this option is available in your quest for better breathing, touching upon:

Expectations, the Hospital Experience, Recovery, Results and Insights

Nancy, Lynda, Morrie, Bev, David, Kathy, Noreen

Should you have anything to add, have questions, and so forth, please contact Bill Poplett at aatbill@cox.net

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Nancy

Expectations:

My surgeon, Dr. Joel Cooper at Barnes-Jewish, St. Louis, impressed upon me that lung volume reduction surgery is not in itself a permanent solution to better lung function. My decision to undergo this major surgery was twofold: to breathe better for as long as it works and to improve my chances of surviving the wait until transplantation.

The Hospital Experience:

Eighty percent (80%) of my lower left lobe and ninety percent (90%) of my lower right lobe were removed via sternum incision. I was an inpatient for ten days, an outpatient for seven. (I also underwent transplant evaluation prior to surgery, so I was an outpatient nine days before surgery.) In addition to the epidural administering a pain-killer, I was also attached to various life-monitoring devices (I looked like the back of a badly jerry-rigged stereo system), a catheter, a mini-trach (to help with the occasional suctioning) and five drain tubes, which were by far the most uncomfortable and cumbersome of my “accoutrements.” The drain tubes were attached to large multi-liter glass jars which sat on the floor. One of the drain tubes rubbed against a nerve in my upper right chest which caused severe, sharp pain almost undeterred by my pain meds. They were removed one by one, beginning with the catheter the fourth day, followed by two drain tubes on the fifth, the carotid ports and the epidural the sixth, with the last drains and the stitches saved for the ninth day. I was a happy camper to get everything OUT.
        Respiratory therapy was an essential component of my hospital stay. Beginning on the day following surgery, I was positioned on a treadmill and encouraged to walk as much as I could. The first day’s walk was two minutes. Two days later I was shuffling down the hall up to thirty minutes twice a day. I was also given percussive therapy twice a day and nebulizer treatments three times a day. On my fifth day, I actually breathed on room air for the first time since diagnosis almost two years earlier. I literally cried with joy and BREATH while I walked on the treadmill for thirty minutes on room air and sats in the 90s.
        My inpatient days also included a morning and evening visit from Dr. Cooper and his team; a self-monitored breathing exercise routine which I performed eight times a day; the nightly rounds of nurses; and the 4 AM portable X-ray barreling into the room to shoot the day’s photos for the medical team. As an outpatient, I went to the hospital twice a day for treadmill (30 minutes at 2.5 mph on room air) and ergonometer. I had two more PFT sessions and one last six-minute walk before my last meeting with Dr. Cooper and returning home. I had been in St. Louis exactly a month.

Recovery:

My O2 intake temporarily increased because I still retained quite a bit of fluid around my lungs, which made it harder to breathe. Gradual absorption of the fluid took about three months. Having never had surgery of any kind prior to this, I had no idea how extreme the effects would be afterward; i.e., taking three or four rests on the way up the stairs the first days home. My legs were like overcooked spaghetti. Because of the sternum incision, I was forbidden from driving for six weeks. I slept propped on three pillows; a month later I found my way back to my favorite side sleeping position.
        I began 30 minutes of stationary biking every other day, increasing to 45 minutes at 25 mph. By Christmas I felt hearty enough to cook a multi-course, Martha-Stewart-would-be-jealous Christmas dinner for 18 people—a three day preparation affair. My niece at one point noted that “Aunt Nancy’s not wearing her nose oxygen.” I realized I had been doing the sous chef thing all day with no supplemental oxygen. It was the best Christmas present I could ever want!

Results:

From 16% FEV1 pre-surgery, 2 l. at rest and 4 l. while exercising, my FEV1 improved to 25%, less than hoped but with noticeable improvement in my breathing. Within six months I could spend most of the day off O2 and 2 ½ l. while exercising, 1 l. while sleeping. I continued improvement in daily quality of life the next six months. My FEV1 did not change, but mobility, energy and ease of breathing did.
        Semi-yearly checkups at Barnes-Jewish showed peak lung function a year after surgery. Even though I have avoided any severe illness and have maintained a regular exercise regimen, my lung function has slowly declined after 1 ½ years. I was encouraged to now go on transplant list, which I was accepted on 4-28-00.

Insights:

Overall, my situation was less successful than many, more than some, but seems to be not unexpected for alphas undergoing the surgery. I would still do it again in a minute, as I had the all-too-brief but beautiful gift of unaided breath, as well as a “bridge” between diagnosis and transplantation. Even though my numbers have now leveled, I still am more mobile and robust in many respects. The extent of my lungs’ destruction was such that I basically needed this surgery to survive until my transplant.
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Lynda

Expectations:

I did not do lung reduction for a bridge for transplant later on, as I do not feel I could do a transplant because of the medications involved afterwards. But I am peace with my decision. I might add, people have asked me didn’t it bother me that I was number three for lung reduction at UAB, and I could only reply no, someone had to be number three, and I am so thrilled it was me.
        In December of 1991, at fifty-one years, I went to UAB Medical Center in Birmingham AL. My doctor thought it was time for me to have an evaluation for transplant. My FEV1 was at 21%, and I really did not feel bad, only shortness of breath and I was still working, though they felt I had about 18 months left for life. Several weeks after the testing we received a letter saying that because I still had very good quality of life, that I would not be considered at the time, but would be in the computer. In ‘94 when the articles on lung volume reduction came out, I was positive that I would be a very good candidate for the surgery. I took the articles to Dr. Zorn. He told me they were not doing it at UAB, but he would look into it and get back to me. He did say they would never do the laser kind there, as he felt that was not a good way for anyone to have surgery. They went to Barnes and worked with Cooper for several months. Dr. Zorn looked at all my paperwork, blood work, PFTs and rehab papers, and said okay, we can do it! He looked me straight in the eyes, and said Lynda this could kill you. It is a very difficult surgery. Minimum recovery is 6 months. Can you handle that? My reply to him was yes, sir, I can do this.

The Hospital Experience:

Dr. Zorn said I needed to get into rehab ASAP. It was grueling—everyday, the treadmill, the bikes, and hand machines, over and over; and it was a very positive experience. I had problems with the treadmill, but was able to do many miles on the bike. At the end of the six weeks, I was able to walk that 1000' by pushing a wheel chair with my O2 in the seat. I was so excited I finished the 1000' with flying colors.
        I would be in the hospital about ten to twelve days and would have to remain in the townhouse in Birmingham for another two weeks or so to have my dressings changed daily. He said they would be sure I had good pain medication. At no time did I ever feel I would not come back from surgery. There was a peace within my heart, and a general overall feeling of calmness.
        Surgery went great. They removed the entire left lobe, and ½ of the right one—this is where the bulla were. Only one person in twenty qualifies for lung reduction; and because I was not a smoker, my damage was only on the bottom of my lungs where alpha1 had destroyed them. My incision was done under the breast line, all the way across.
        I came right off the vent, and was back in my room in record time. From the time I returned to my room, which was about five o’clock on Monday until late Wednesday afternoon, no one remembered I was on inhalers! I was grumbling and mentioned to one of the doctors by my bedside for someone to please get my purse so I could get my inhalers, because I had not used them since shortly before surgery. He jumped up and called respira-tory, and they did a nebulizer treatment! And I was on the road to recovery, my old self.

Recovery:

Recovery was slow, the first time walking was tough. They hooked all the machines up on this contraption that I could lean on to walk. Even though I didn’t get far that day, I was able to do a little better each day and my appetite was okay, and I do not remember being on solumedron. And that one thing I could do was breathe! It was so wonderful. Pain was very minimum. In the townhouse as outpatient, during my first shower, I could not believe I had washed my hair and was not out of breath. In two weeks we went home.
        After a month I developed a terrible infection in the incision line, and I had to return to the hospital for ten days, on very strong antibiotics, and outpatient for another week. They were able to clear the infection and I returned home feeling much better.

Results:

My first PFT after lung reduction was fantastic, it was 34% and 1.05 and I knew I could live with that. It was a very emotional time for me returning to our home. I was so overwhelmed to be able to just move around, I slept a lot, many hours resting. I only sleep with oxygen at night and now use a b-pap machine also, to help remove the CO2 that I retain. I will know in a few weeks if there is a possibility of having the bulla, that has decided to make its home on what is left of the right lobe, removed. I have resumed O2 at 1 ¾ l. at rest and 4l. exercising. Just got back from yearly checkup (12/00) and still doing fine with the fev1 at 31%.

Insights:

Lung reduction saved my life. From that day to today I have never looked back on the surgery. It was one of the best things I ever did. There will never ever be all the answers people would like to have about this, but it gave me my life back. I will be sixty-one in two weeks, and if I had it to do again, I would do it in a heartbeat. Also, in ‘95 Blue Cross Federal was primary for me; in ‘96 Medicare became primary for me. Medicare didn’t pay after that and I think now this is why they are doing the (NETT) study.
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Morrie

Expectations:

I am sixty-one now and had LVRS in March 1998. I am one of the original Prolastin protocol NIH patients in 1985. Having talked to doctors and other LVRS Alphas that have had the lower lobes removed it has not done for them as well as the upper lobe LVRS surgery. Most of the upper lobe Alphas were heavy smokers and had the surgery earlier in life than most lower lobe LVRS Alphas to date.

Recovery:

At first it served as a mild increase, but has since degenerated to not having done much to help me. My upper lobes were in great condition and the bottom third was removed because that is where the emphysema was. Most of the upper lobe LVRS patients do very well.

Results:

I am oxygen 1 ½ to 3 l. depending on activity most of the time, about 18/7 on the average. My FEV1 is less than 19% of predicted and I am now going through the process of getting on the transplant list.

Insights:

At this point in my life I am sorry that I went through the operation. However, I have a lower lobe LVRS patient (NETT Study) in my pulmonary rehab group (not an Alpha) doing very well and not on oxygen. My advise to any Alpha thinking about LVRS is to find out, if they can, if it is a lower or upper lobe removal and go for only the upper one. For some reason lower lobe Alpha LVRS has a very low rate of success as far as long-term improvement of lung function.
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Bev

Expectations:

I feel that it is very important to have a good attitude, to be willing to do as you are advised, and to have faith in your doctors. I was so determined to do well, that things were a breeze.

The Hospital Experience:

I was in the hospital for six days, and I really didn’t have any problems. The worst part of the hospital stay for me was that the morphine made me sick to my stomach, and I couldn’t stand the sight or smell of any kind of food. But it didn’t take long for that to subside, and now I am on a strict diet, because I have gained. My scar itches alot but has healed up great.

Recovery:

I went from 17% lung function to 43% and it has made a world of difference in my life. I was not for one second concerned about the surgery, and I feel that my confidence in my doctor and and my outlook on things played a huge part in my recovery.

Results:

We went Trick-or-Treating with some friends and their kids last night for two hours, up and down hills in a neighborhood, and I only had to stop twice on a good sized hill to catch my breath. It wasn’t even that bad, but I can feel when I am getting really winded. I just want to say that I was so excited about that hill! I kept up with everyone and they were so proud of what I have achieved.
        It has given me more time to do the things that I like and to actually live as a pretty much “normal” person. Whatever the heck normal is. I hope that this will give you some insight on how happy I am with the LVRS.

Insights:

I would do it again in a heartbeat. I would recommend the surgery to anyone that is a candidate. BUT, I believe with all my heart that you have to be willing to put all your confidence into your doctors. You have to believe in them and have faith.
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David

Recovery:

It took about a month for me to fully recover from LVRS. They went straight in through my sternum, which isn’t always the case. I was forbidden from driving after surgery so that the bone could grow back together well. Other than that, just building up slowly on the treadmill, eating healthy foods (lots of fruit and veggies), and just having a positive attitude was a big factor.

Results:

Off oxygen. Not full lung function. Still disabled. I can walk around the mall, treadmill, and so on, without oxygen. I look and feel much healthier. I’ve gained weight and have a good appetite.

Insights:

(From the audacious Nancy aka Cleo). “I so joyfully recall reading David’s posts after he was out of the hospital and recovering. At a school function with his son, David told us that at one point his son told him to ‘Slow down, Dad. You’re walking so fast!’ Another post recounts the freedom and vitality he experienced with his son on a fishing vacation—things he could not have done before the surgery. LVRS seems to have factored directly into David’s enhanced quality of enjoying life with his son. " NM
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Kathy

The Hospital Experience:

I had my surgery in Orange County, CA., at Chapman Medical Center Hospital Lung Center. My doctor was Richard Fischel.
        I was depressed that I didn’t die on the table....didn’t even have a life after death experience. Severe depression lasted for about one and a half to two years after LVRS. The pain meds weren’t attached correctly into my spine so all the good stuff ran onto the table and under me, so I literally had no pain medication when I came out of surgery. Lungs hurt. After the pain meds that the nurses gave me kicked in, they helped me sit up. I couldn’t believe that it was so EASY to breathe! Then I was able to walk around under the doctor’s watchful eye, . . . and I could still breathe with ease! I healed quickly so I wasn’t in the hospital for a full week.

Recovery:

The next week we, my husband and I, went to Knott’s Berry Farm, where I walked all around with no problem. Oh, I took my time, but no problem taking a breath! How wonderful it was to be free! I felt like a free spirit! I ran that week!!!!!!! Literally ran, in the hospital with the respiratory therapist at my side. Yep, made him run, too. It felt GREAT!

Results:

I still walk between one and three miles a day and work out at the local gym to build up my upper body. I still feel GREAT! Don’t get me wrong, there are off days too, but nothing like before LVRS. The key is to walk everyday, even if it’s just ten minutes a day. Don’t give up.
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Noreen

(Note: Noreen is the latest LVRS recipient and is still recouping at home. Her journal on the A1A website describes in detail her hospital experience, highlighted by photos and a journal from her husband/caregiver’s point of view. Since she is still in the first stages after surgery, the following is a summary of recovery to date.)

Recovery Bumps:

1. Numbness around ribcage muscles
2. Tightness and tenderness near and on the incision area
3. Nausea due to pain
4. Hheadaches due to pain
5. Constipation due to pain pills
6. Not being able to lay in any other position but on my back due to incision
7. Feeling tired and worn out
8. Depression due to the length of healing time and when housebound
9. Sneezing is painful due to incision and LVR.

Recovery Perks:

1. No pressure on ribcage
2. Feeling less winded
3. Able to climb stairs
4. Chronic coughing has stopped
5. Feeling of “fullness” is gone when I eat; lungs aren’t pressing on my stomach
6. Sleeping through the night without breathing attacks
7. Pressure of lungs on bladder is gone
8. Less “popping” noises from my lungs when I breathe
9. Increased energy when I’m feeling less pain.

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Updated May 25, 2005