Letter from Jay Lackritz in America. Posted 8th April 2009. DB

I'd like to add my two cents on some of the comments about lung transplant (Lung Tx) 

Note. LVRS means lung volume reduction surgery. This is not a cure fror emphysema, but can significantly improve the patients quality of life 

I was originally recommended for LVRS surgery, but at the time, there were reports of only 80% survival rate, so I was not interested. As the years went by and my COPD got much worse, and LVRS moved out of the 'experimental' category, I went to be evaluated for either lung tx or LVRS. I went through the 3 days of complete testing that was mentioned, and I agree with the people who called this testing highly worthwhile. They do this testing to see if you have any other health problems that would affect your survival rate of the surgery, and also to see if you indeed need lung surgery. In my case, they found a major artery 80% blocked, and this required a stent and a year's worth of blood thinners. I thank the lord that I went through this testing, because otherwise, I would have never known about the problem.

The results of my testing showed that my lungs were way to far gone for LVRS surgery, so they put me on their "inactive" list for transplant, and I was able to spend a year in education sessions about my disease (COPD) and everything you wanted to know (but were afraid to ask) about transplants. Everything from nutrition, transplant meds, exercise, psychology, finances, Medicare, rejection (acute and chronic), bronchoscopies, survival rates, testing, research, Q&A's, etc. etc. etc.) The education is a requirement to be accepted for tx. In my center, you are required to attend 10 sessions/year. During this time, you are also tested regularly, to see how close you are to being moved to the "active" list.

Once on the "active" list, you can be called at any time they find lungs for you. As someone else said, you can refuse the transplant at any time, even when they call you and tell you they have lungs for you. Of course, if you refuse, they may not be able to find lungs for you at a later time. All of this time and education can help to let you know if you indeed are ready (mentally and physically) to have a transplant. In my tx center, they like to say that they will not put you on the active list unless you are not likely to survive for more than a couple of years without a transplant. Of course, you also have to be healthy enough to survive the surgery. The main criteria is that your survival rate will be better with the surgery than without. As for your age, this is not a criteria in the selection process. It is your health, not your age. At least this is true in my tx center.

Practically speaking, if you're well over 70, and have had lung disease for many years, you are less likely to be able to survive the surgery for a few years, and there is a limited supply of lungs that they can give out, so you are less likely to be approved to be listed. We have had people from babies to over 70 receive lung transplants in my tx center. Someone else mentioned the cost of transplant meds. If you have your transplant in a Medicare approved facility, and Medicare pays for your transplant, then your immunosuppressants will be paid for my Medicare Part B for as long as you take them. Of course, this doesn't include prednisolone (also classified as an immunosuppressant), which of course is generic and cheap. As for my transplant, I had 3 "dry runs".

A dry run is when you get called in (normally in the dead of night, since the hospital that has the donor, normally waits until the end of the day before they call your tx center to come over), and when they check out the lungs they turn out to be not suitable. This can happen often. Your transplant team cannot know if the donor's lungs are okay until they actually examine the donor and the donor's records. When I received my first call, I actually was not totally ready to have a transplant. On that day, I felt relatively healthy, and when they told me that the donor's lungs were not suitable, I was happy. My transplant team, actually knew better, however, and knew that I needed the transplant. (My mother died from emphysema in her early 60;s, and both my brothers have lung disease, and even my daughter has asthma, and I was stupid enough to smoke for most of my life, and at this point, my FEV1 was around 11%, and I was on 6 liters of O2 at rest, and I spent most of my time in a wheelchair) Anyway, by the time I got the call and the donor's lungs were fine, I was totally ready for the tx, and knew I needed it badly.

By the way, at the time, I was 58 years old. I definitely know that transplants are not for everyone, and you are trading one disease for possibly many others due to to side effects of all the medications. Kidney disease, diabetes, cancers, etc. are common side effects that many transplant recipients come down with many years after their transplant. I can only tell you that right after the tx, I no longer had COPD, I stopped all the COPD medications, inhalers, etc., did away with my wheelchair and oxygen, and am feeling great. I have had a couple of episodes of acute rejection, which is minor and is fixed with a massive dose of prednisone for 3 days, and have had a few other minor problems that only required switching meds until we found the ones that worked for me.

All along, I have not had any breathing problems. As most of you know, there is nothing like not being able to breathe I consider that the worst! One thing I DID get from the occasional COPD exacerbations was the ability to cope with the idea of dying. For me, when I could not catch a breath, it prepared me for death. Sorry if that sounds morbid, but it was actually good for me mentally. Anyway, I'm feeling great and loving life as never before. I have dozens of new friends who have received transplants, and we have regular picnics and parties. As a matter of fact, at our holiday party this December, we had a transplant recipient who received a double lung tx in 2002, and just a month ago, gave birth to a beautiful new baby boy. What a miracle! Without her tx, she probably would not have even been with us at all, and now she's a new mother.  

Jay Lackritz [Jay says you can write to him on Lackritz@optonline.net]