No transplant for me, but that’s OK.

Posted on Posted in Asthma, Asthma exacerbations, Lung Transplant

If you’ve been following my medical journey, you might recall that last summer I began the evaluation process for lung transplant at UCSF medical center. The conclusion of that evaluation came 6 months later in Dec 2016. At that time I was deemed a suitable candidate for transplant, but that my listing with UNOS would be deferred until my O2 saturation stayed consistently below 90% or until my baseline FEV1 fell below 20% (Im currently at 24%). At around that same time that evaluation began, I approached the makers of a new biologic asthma drug called Dupilumab,asking them that because of the severity of my disease if they would consider providing me with the drug prior to it’s FDA approval. Well, literally within a week of completing the transplant evaluation and preparing for the eventuality of transplant, I received word from the drug’s manufacture Sanofi-Regeneron, that an extended access study was opened up and my request for compassionate use of the drug had been granted. UCSF has now received the drug on my behalf, and pending FDA approval of the IND (Investigational New Drug) application and some other procedural stuff required by the University I hope to start receiving the injections soon. Should there be an delay receiving the Dupilumab, my doctors will prescribe either Mepolizumab ( Nucala) or Reslizumab (Cinqair), as a temporary treatment bridge. Both of these drugs are currently available on the market.

It’s not known yet whether Dupilumab will help with my type of asthma, but just recently and somewhat surprisingly, it was discovered that during my last two hospitalizations, I actually had elevated eosinophil counts (a type of white blood cell). This new finding is actually encouraging because it indicates that my asthma is at least partly Th2 inflammation driven, which is what these drugs are designed to target. It’s also interesting to note that as a young adult my blood eosinophil counts were always high, but for some reason they became almost non detectable for the next 4 decades. It’s thought that perhaps being on steroids all the time might have suppressed them.

In any event, once I begin therapy with this new biologic drug, it will probably take several months and possibly longer to see if there’s a significant change in my asthma or my symptoms. During this wait and see period I would not be eligible for transplant listing anyway. It’s for this reason, and the fact that Im not getting any younger, that Ive decided that it would be best to permanently withdraw from the UCSF transplant program. I say permanently, because even if this new drug doesn’t help or my condition worsens, my probable low allocation score and my age at the time of transplant makes this treatment option less desirable. For example, if I were placed on the national wait with in the next few months approaching my 63rd birthday, it could take another 2 years or more to “get the call”. And while there many people who undergo lung transplant in their mid 60’s and early 70’s, the outcomes for that age group are not that good. Recovery from lung transplant surgery is much harder the older a person is, and the survival rates diminish greatly. There simply comes a point in time when the risks of undergoing transplant outweigh any potential benefits. Well, I think Ive now reached that point in time. And to be completely honest, Im just plain worn out from all the medical intervention Ive had over the years, and Im loosing the desire to begin my life all over again with transplant and everything that goes along with it. I’ll just keep doing what Ive been doing for over 60 years, living with this disease the best I can.

The odds of receiving a lung transplant were actually stacked against me from the very beginning anyway. No matter how severe my condition is, I simply don’t meet the most important criteria for ensuring a viable allocation score, and that is….the need for continuous supplemental oxygen! Despite having permanently damaged airways, literally dozens of NFAs, and a diminishing quality of life because of constant breathlessness, the nature of my airway disease doesn’t greatly affect by ability to oxygenate when Im not actively flaring. But maybe this is a good thing because there’s no way to know if transplant at my age would actually improve my quality of life or my longevity. Eventually I probably will need O2 to keep my sats up, but that’s not likely to happen for a very long time and by then I would be too old for transplant anyway.

Even without achieving the ultimate goal of being asthma free with beautiful new lungs, Im still very grateful for having the opportunity to go through the entire evaluation process. Some of the cardiac tests they did as part of the evaluation revealed that I had moderate to severe atherosclerotic heart disease. Armed with this new information, my doctors were able to tweak my medications, which will hopefully prevent it from getting worse. Had it not been been for the transplant evaluation, I may have never known I had this problem until I had a heart attack.

Regardless of treatment options, at this point in my life what I want more than anything is to minimize the amount of suffering I go through so that I can better enjoy whatever time I’m given. I don’t want to spend more days in hospitals and clinics than I already do, which is a realistic possibility following transplant. Right now I just want be comfortable enough to enjoy life the best I can with this disease. After that Im happy to let mother nature call the shots.

In closing, Id like to thank all the wonderful people who donated to my transplant fund via the NFT. Rest assured that your contributions will still make a worthwhile impact on my life by helping me pay for medications and other medical expenses related to my asthma. For those who have volunteered their time and efforts to this cause, I’m very grateful. Not sure if I will ever beat this disease completely, but I couldnt have come as far as I have without the kindness and support of others.

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One thought on “No transplant for me, but that’s OK.

  1. Thank you Stephen for your blog, which I came across for the first time today when searching for information about air trapping, which is a condition I have. Your experiences have been very interesting and informative and I am grateful that you take the time to share them. Could you send me your email for private non posted follow up?
    Thank you again.

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