The meeting

Before I begin, let me preface this post by saying that I haven’t made up my mind as to whether I would even want lung transplant surgery, should it ever get to that point. I wanted however, to see what some of my Pulmonologists views were on this subject, and to get a feel for what kind of support I would have in whatever treatment option I pursued.

So last week I got together with 3 of my UCSF Pulmonologists to discuss my SARP evaluation and Dr Wenzel’s recommendation that I consider lung transplant surgery in the future. I began the conversation by bringing up all the wonderful things that the SARP study was accomplishing, which seemed to put a smile on a everyone’s face. But, the minute I mentioned the “T” word, you could sense the tension in the air. You might even say, that tempers were starting to flare…including mine.

No Way! … are you even close to being a candidate for lung transplant surgery, was their general response. After all, you can walk marathons! ( yeah…like I didn’t see that one coming )
Even if my FEV1s were to totally bottom out and I was at the point where I was needing supplemental oxygen 24 hours a day, if I were still able to walk ….even just a 10K, I would not be eligible for new lungs. It just wouldn’t look right.

They went on to reassure me however, that even though I have extremely severe asthma, that my PFTs have been relatively stable over the past 4 years and that there’s no scientific evidence to suggest that people with severe disease plateau at a certain level and then suddenly experience a rapid deterioration . (I’m not an MD or a scientist, but I don’t totally agree with that last statement.)

Beyond whether or not I would meet the actual criteria for acceptance into a transplant program, I think their main concern, was that I somehow didn’t understand all the implications of having this life-altering , can’t- undo-it , type of procedure done . In their view , I would just be exchanging one set of problems for another. Though they agree that I would probably be breathing a lot easier after transplantation, there’s also a good chance that my life would be cut short. This is why they prefer you to be on deaths door before considering such radical treatment. Tissue rejection is still a huge problem in lung transplant recipients, as they haven’t quite figured a way to administer just the right amount of medication to prevent rejection, without killing the patient in the process.

They claim, that while there are a few miracle stories out there of people thriving and living long lives after receiving new lungs, the fact is, the vast majority of lung transplant recipients are not so lucky. The survival rate is still very dismal and pretty much a crap shoot. Only 2 out of 5 people will survive 5 years after transplant, and many of the people who do survive, are plagued with frequent life threatening infections due to weakened immune systems. You have to be on potent anti-rejection drugs for the rest of your life and will need constant medical monitoring. I’m not sure I like the idea of having to be around hospitals, anymore often than I am now.

OK, so I see their point about this being an option of last resort, and I appreciate all the concern . I don’t agree with all of it, but I understand it. I think the real reason I got the response I got, is because I have asthma as a diagnosis. There have only been a few asthmatics that have ever been transplanted. The fact that I don’t require supplemental oxygen ( yet) is a huge factor too. In every other way, my lungs are trashed, but Im able to oxygenate.

I guess I should be relieved that I’m not considered sick enough to warrant transplant surgery, but at the same time, when one of the most respected asthma doctors in the world, tells you that you should seriously consider it, I think it’s worth learning as much as you can about it , so that you’re better prepared if the time should come. And while my current feeling is that I wouldn’t want the surgery done, who knows how I’ll feel about it a year from now, or if I get to the point where I’m struggling for every breath.

That bit about “being able to walk marathons” really got me to thinking about just how misunderstood I am and how misinformed people can be. It felt as those they were using my incredible physical fitness achievements, against me. For some reason there’s this crazy notion, even among lung doctors, that people with severe lung disease are supposed to fit a certain mold.
My response to that would be… why would I even want to.

They agreed that we should revisit this issue again in 6 months. Maybe things will be different then.

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14 Comments

  1. Danielle says:

    Hi Steve, have you checked out all the lung transplant blogs out there? A lot of CFers and other lungers who are waiting for or have had transplant have great blogs which give insight into what it's like to be on the list or to live after transplantation. Might be useful to you should you get closer to having to make that decision. I've never come across an asthma transplant blog though.

    I hope you have all the support you need around you. But never forget that our little blogging family will be behind you whatever you need to do, 100%.

    • Thanks Danielle, Actually ,there have only been a couple of asthmatics that have ever been transplanted. Right now, Im leaning towards no, but that could change in the future.
      Hope your lungs are behaving!

  2. kerri says:

    Hey Steve,

    Tough call, especially when you’ve got two different perspectives from different doctors–and its a decision that nobody can make except for you. Like Danielle said, we’re all behind you, whatever decision you make in the future.

    Hugs,
    –Kerri

    PS. LOVE the new blog temp. I was waiting for the reveal :).

  3. Stephen says:

    Thanks Kerri, The blog make over is a work in progress,. Got lots of tweaking to do yet.

  4. Amy says:

    Wow, so much to respond to–now I understand your previous post better. Absolutely, I think I'd be doing the same thing in your shoes–why WOULDN'T you learn as much as possible about transplants now, when it's not an emergency and you have plenty of time to think and read? Even if you're never a candidate or never choose to do it, at least you have all the information you need.

    The racewalking weighing against you is a bit of a mixed message, isn't it? The medical and non-profit communities spend a lot of time and money telling asthmatics they can still live active, healthy lives, exercise, and participate in all kinds of sports, but in your case I guess the willingness to persist in spite of severe asthma means you're not sick "enough." I do get that the side effects and meds for organ rejection make transplantation a last-ditch option, but still!

    Finally, I love your new header! Great image.

  5. Hi Amy, Yeah, the medical community said that exercise was important, but I dont think they ever imagined that someone like me would come along.

  6. gaylemyrna says:

    Hi Stephen:
    Not an easy decision…and only one you can make. But, as others have noted, gathering info now makes sense for down the line…Whatever you do..I wish you all the best. Meanwhile, my lungs are flaring up again and I’m back on a lovely prednisone taper and goodbye to what little sleep this insomniac gets :( !

  7. MARSH says:

    stephen one ????? i didn’t see or have you thought about it how much prednsone do you always everyday day after day do you have to take so you don’t reject the transplant i have a close friend that had kidney trans plant and he takes 100 and he’s mean and swollen and not happy to be here any more!!!!! said he would never do it again!!! said life was better maybe just not as long only difference is now he pees fine??? think hard on this one cuz you know steriods give you the meanies just a thought thinkin about you??? did you see barry on jay leno the other night???
    do you ever go to graveyardmall.com thay have some barry manilow cd for good price just got mine yesterday it was xmas to my self pretty good well have a good day marsh

  8. Elisheva says:

    First off I like your new header! Really nice!

    Uch, I hate that. My lungs are larger and stronger than they should be for my height, thus resulting in a higher personal best PEF than would be expected. When I'm not breathing well, what would be in the yellow for me is still in the green for the expected for my height. My new pulmo totally doesn't take me seriously because of this. And I'm like "What? Don't you want me to be as healthy as possible?" Not the same story as you, but, it's like they're using your relative health and abilities against you…. Arghh.

  9. BeckyG says:

    It may be different in the USA, but here in UK they tend not to transplant asthmatics unless there is significant damage to the lungs. I'm a severe brittle asthmatic and had this conversation with my consultant several years ago. Part of the reasoning is that there's more to asthma than 'just' the lungs – it's an immune system thing too – so transplanting the lungs wouldn't necessarily cure the asthma. It's interesting that it's been suggested to you though, and completely understandable that you'd want to look into it and find out about it at this stage.

    • Stephen says:

      Actually, the criteria for lung transplant here in the USA is no different for asthmatics, then it is for any other lung disease. There are quite a few asthmatics on the transplant list right now. Btw, asthma is not always considered an immune disorder ,and those asthmatics who have been transplanted and wrote about their experiences, have had no problems with the asthma returning.

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