Earlier this week I had my long awaited lung transplant evaluation at Stanford University. Dr Weill and the other team members were awesome. I learned a lot and am satisfied with the outcome. In fact I think everyone involved in my care to this point has learned something. Very few asthmatics are ever referred for transplant, so I’m sure this was new territory for the evaluators as well.
So , what was the decision?
Because my diagnosis is asthma, the main question the transplant evaluators had to grapple was this; if I didn’t receive a transplant now, what is the likelihood that my next severe exacerbation would kill me? After pouring through my medical records and spending nearly 3 hours interviewing me, it was finally decided that because I had not suffered what they consider a “near fatal” asthma episode in the last 13 months, that it would be in my best interest to hold off on transplant for now and in the interim be followed in the pre-transplant program where they would re-evaluate me every 3-6 months. It’s their believe (and I totally agree) that though I have a life long history of severe and frequent exacerbations and intubations, the majority of them Ive somehow managed to turn around rapidly without any lasting complications. Therefore its reasonable to assume, that at least for now, the odds of me surviving the next “big one” are in my favor. That being the case, transplant now would be premature and might actually shorten my life. If however my lung function continues to decline or I don’t do so well with the next “big one”, then transplant option tilts back in my favor.
I should point out, that the term “Near Fatal Attack” is open to interpretation, but in this case I think they mean a severe exacerbation resulting in resp failure, impending or actual resp arrest and/or cardiac arrest, intubation, complications on ventilator, difficulty weaning from the ventilator… that sort of thing. All of these things have happened to me many times, but not in the past year or so. I think one of the reasons for that (knock on wood), is because I’m getting much better at identifying potential life threatening exacerbations before they get out of control and then seeking hospital treatment sooner rather than later.
So anyway, my immediate response to their decision was actually a sigh of relief. Knowing that I wont have to face transplant in my immediate future feels like a huge weight has been lifted . At the same time though, I find myself in kind of a mental fog. I don’t know if it’s due to some deep seated anxiety I have about facing my own mortality, or if it’s just fatigue from lack of sleep and stress over the the evaluation, but whatever it is I feel like Ive been put through the ringer. I hate to use a sports metaphor, but it’s kind of like that feeling you get after completing your first marathon. You’ve just tackled one of the most difficult physical and mental challenges of your life and you’re left wondering, what’s next? Where do I go from here? What’s the next big challenge for me ? How can anything top this? Sounds crazy I know, but finding out that you’re not ready for transplant, in a strange way kind of invalidates the way you perceive the severity of your illness. You start thinking to yourself, well maybe Im not that sick as I thought I was if I didn’t qualify for transplant. Of course the rational part of me knows that’s not the case at all, but still, it leaves you wondering about the what comes next, if anything. Am I gonna feel like this every time I get re-evaluated?
So I guess what Ive taken away from this experience, is that in order to be considered for lung transplant, the team has to be convinced that you will die within a year if you don’t have one. Plain and simple. But of course with asthma that’s very difficult to say. I also found out, much to my surprise, that quality of life issues such as worsening dyspnea plays virtually no role in determining eligibility for transplant. It’s all about the hard numbers and whether they believe that you will live longer with transplant, than without it. And just a bit of sad irony, out of the small handful of asthmatic candidates that this team had knowledge of, most of them died of asthma attacks while on the waiting list. Ive read about a few other individuals who survived the surgery, but survived less than 3 years. On the positive side, out of those asthmatics who were successfully transplanted, none of them had a re-occurrence of asthma. That to me is totally amazing. Can you imagine waking up without asthma? The thought blows my mind.
Finally for my friend Steve Ferkau, I just wanna say thanks for always emphasizing the positive aspects of transplant. Per my own transplant evaluation physician “don’t believe half of what you read on the web about transplant statistics”. According to him, a lot of the neg stuff simply isn’t true or is often exaggerated. There are of course side effects to all the anti rejection drugs, but the fact is, almost all transplant recipients experience a dramatic improvement in their breathing and with their lives in general. The improvement in lung function however, is for a finite amount of time. But isn’t that the way life is anyway?
Of course, none of us would have a 2nd chance at all if it weren’t for organ donors. Thank you.