Being sick for long periods like this, often has me thinking about lung transplant surgery and how wonderful it would be, at least in my mind, to not have to struggle to breath all the time. This month also marks the one year anniversary of my initial SARP work up, and the infamous meeting of the minds over at UCSF. At that time we had all decided that my disease wasn’t severe enough to be considered for transplant, and even if I did meet the criteria, I had pretty much made up my mind at that time, that transplant surgery was something that I wasn’t interested in. Well that was then, this is now.
Here I am a year later, getting more breathless everyday and starting to seriously re-think my earlier decision. But wait… even if I were to change my mind and actively pursue lung transplant surgery as a treatment option, my current baseline FEV1 of 35% is still too high to qualify. And if I’m suffering this much in the mid 30′s, I can’t even imagine how bad it must feel to be even lower.
The fact is, most people on the transplant waiting list have FEV1′s in the 20′s and sometimes in the teens. The majority are also on supplemental oxygen 24/7, and some of the sickest people are even on ventilators while they wait for donor lungs. I only require oxygen when I’m actively flaring and my FEV1 rarely drops into the 20′s unless I’m really really sick and Ive always managed to bounce back. [This whole oxygen criteria thing shouldn't even apply to an asthmatic waiting for transplant. The pathology of asthma is much different that Cystic Fibrosis or COPD. Asthma is a disease of the airways, not the alveoli. Most asthmatics don't require supplemental O2 unless they're actively flaring].
I suppose I should thank my lucky stars that my FEV1 readings are still in the mid 30′s, and occasionally even into the 40′s, but as good as I have it in comparison to those waiting for new lungs, life in the the 30′s is not exactly a picnic. And the fact that my lung function has dropped almost 30% in 6 years, tells me that my numbers will only continue on that downward path. It’s not a matter of if they will drop into the 20′s, but when .
Living in the 30 percent range is like living in a kind of breathless purgatory. Your days are filled with this bothersome low-level breathlessness which doesn’t get too severe unless you’re flaring, but nevertheless is always there in the background effecting everything you do and making you miserable. In the 30′s percent range your lung disease becomes so advanced that most conventional therapies or medications no longer work, yet you’re not quite sick enough to qualify for transplant. Now, if I had emphysema and had lots of air-trapping, I would be a perfect candidate for LVRS or airway stents. But, I don’t have emphysema, nor do I have the type of hyperinflation or air-trapping that could be helped with airway stents. I have severe asthma with fixed obstruction and there’s very little that science can do for people like me.
There’s another criteria for lung transplant surgery that creeps me out a little, is the longevity issue. How long can I be expected to live if I do nothing? Ive had doctors give me predictions of as much 10 years all the way down to one year. In order to be a transplant candidate at centers you have to have a life expectancy of less than 18 months. Most transplant centers base that prediction on a BODE score of 5 or more.Currently, my BODE score is a 4. The problem is that these mortality indexes don’t really apply to asthmatics. Since asthma is a disease of the airways and not necessarily the alveoli, a severe asthmatic, even with extensive lung scarring, can linger on indefinitely. The question really becomes then, will a severe attack kill me before the natural progression of the disease and/or old age does?
I know I should be grateful for all Ive achieved through fitness and pure stubbornness, but sometimes I feel like I’m being penalized for doing the right thing and staying in shape. Had I not done all these healthy things, my FEV1 would have surely declined faster, putting me in a position where Id probably be eligible for transplant by now. Let’s face it, not too many people with an FEV1 of 35% have completed 7 marathons. What’s really ironic though, is that potential lung transplant candidates are scored on their level of physical fitness. Transplant centers want people who will be healthy enough to survive the wait time, ( up to 2 years in some cases), the surgery and the recovery. The stronger you are going in, the better the results. How that’s possible with an FEV1 in the 20′s or teens is be beyond me, but that’s the way it is. I have the required physical and mental stamina now, but will I still have them when my other numbers finally catch up? And even if I do meet all the criteria, will it happen in time?
So as I’m getting ready to finish the closing paragraph of this post, the “But” part of the title hits me in the head like a ton of bricks. Life sucks with an FEV1′s in the 30′s, but I’m not to the point yet where I dread waking up everyday. I’m not to the point where everything I do is a total struggle. I still have the occasional “good breathing day” (or “not so bad breathing day”, whichever way you want to look at it). I’m not ready yet to trade my lungs in for a pair that may, or may not give me more of those precious “good breathing days”. But most importantly, and regardless of all the other criteria, I know I’m not ready for a lung transplant, because I’m still questioning whether I can live without one. I’ll know Ive hit my rock bottom when life is no longer worth living…it’s as simple as that! I can see now why they set the transplant bar so high. It’s meant as a last resort, not a treatment option. So on that note, I’ll stop crying poor me and get on with life.
UPDATE: On April 18th, 2011, I did indeed finish my 3rd Boston marathon in a row.
Also, on Aug 15th 2012, I was re-evaluated for lung transplant. I’m still too healthy to be listed, but am now being followed in the pre transplant program at Stanford University. My FEV1 is holding in the low 30s. Im no longer able to do marathons, but I still walk 2-3 miles everyday when I’m feeling well enough.