Ive been posting fairly frequently, either here or on my Facebook page, about what’s been going on with my asthma treatment in the conventional sense, but a lot of people have been asking me what’s up with the lung transplant stuff. Things like, am I still considering it? Am I a potential candidate? Hows the evaluation going?
The short answer to all those questions, is yes. The longer, more accurate answer, is that I wont really know for sure until it happens. Sounds like double talk I know, but there’s never been a case quite like mine where asthma is the primary reason for transplant.
The conversation about the need for possible lung transplant actually began back in 2010 during my first SARP visit with Dr Wenzel, but it would be another 2 years for an initial consult at Stanford and another 4 years before I began the actual evaluation process at UCSF.
There are many reasons why it took so long to get to this point, with the biggest one being that I have Asthma, not CF, not IPPF not Emphysema. The steady and certain decline that you see in these other disease populations, doesn’t usually happen with asthma. And while a lot of people still die of asthma, it’s not considered and ultimately fatal disease in the same way as these other diseases are. Most asthmatics have a relatively mild to moderate form of the disease, which can usually be controlled with medication and trigger avoidance. In between flares most of these individuals live normal lives. A small percentage of us however, have a severe form of the disease that responds poorly to medications and treatments and slowly destroys our lungs. Exacerbations become increasingly more frequent, which causes even more lung damage. The constant breathlessness becomes increasingly debilitating and the chances of actually dying from an asthma attack becomes much greater.
Up to this point, given the progression of my disease, everyone, including myself, had differing opinions as to my long term prospects. It wasn’t until late 2014 when I began experiencing more frequent and retracted exacerbations, along with worsening PFTs, 8 hospital admissions and 5 more intubations in less than a 12 month period, that it was becoming evident that “asthma” diagnosis or not, lung transplant would probably become necessary if I ever hoped to reach my mid 60’s. So, per Dr Wenzel’s recommendation and having exhausted all other treatment options, my primary Pulmonologist in San Francisco referred me locally to the lung transplant dept at UCSF for their thoughts on the matter. After reviewing my medical history and again emphasizing how extremely uncommon it was for asthma to be considered an acceptable medical condition for transplant, they recommended I complete the full medical evaluation.
The evaluation process itself is very rigorous and thorough, and includes dozens of medical tests, meetings with clinicians, psychologists, social workers, dieticians and even financial people. (Here’s an excellent website from a Florida hospital that explains everything about the process).Again,the process is so complex and multi-dimensional that they assign you a transplant coordinator who works with you to keeps things on track. During my first visit I met with the head transplant Pulmonologist, the transplant coordinator, a social worker and completed some of the initial blood tests. Then just as things finally got rolling, the process came to a screeching halt.
A couple weeks later in April, I got really sick and was hospitalized yet again. I had a very rough time during the admission and was not in a good place mentally. Unbeknownst to me, while I was sedated on the ventilator the transplant team came to exam me and apparently had some concerns about the way my diaphragm was working ( or not working) and the de- conditioned state that my upper body muscles appeared to be in ( which resulted in the creation of this post). After I regained conscience and was finally extubated, they had asked if they could stop by and talk with me, but I was so frustrated and depressed from being in the hospital that I told them to go away! Stupid I know, but Intensive care units and high dose steroids do crazy things to one’s head.
It wasnt until early June that I received a call from the transplant coordinator asking me what was going on and if I was planning to continue with the evaluation.I shared some of my fears and concerns with her, mainly over financial and longevity issues. We both agreed that I needed more time to think the whole thing through. I told her I would get back her in July after I had a chance to see the results of my pulmonary function tests.
Well, here are the results of those tests. Of course I aced the walk test, no surprise there. I walked a 3rd of a mile in 6 minutes without desaturating. My O2 sat stayed at 98% the entire walk. My PFTs were not great, but they were a litle better than the spirometry a month earlier. After the pulmonary function tests were completed, I met up with my pulmonologists to get their take on things. In short, the shared view was that here we have a very severe asthmatic (that would be me), who’s been intubated 30 times with several NFAs, and who’s PFTs are bad and getting gradually worse. At the same time though, here we have a severe asthmatic, who because he exercises regularly despite his breathlessness, has build up his endurance to the point where he can still walk at a good pace without desaturating.
So once again the dilemena that my doctors are facing, is how do you reconcile the need for something as radical as lung transplant, when someone’s O2 sat is basically normal? For most other respiratory conditions, you really cant. But the pathology of asthma is different, in that asthma is disease of the airways, not the alveoli where the exchange of oxygen and CO2 takes place. Asthmatics, no matter how severe, rarely desaturate unless they’re actively flaring and in respiratory failure. That doesn’t mean their lives are not severely impacted or that they wont die prematurely from the condition, it just means that O2 saturation is not an accurate gauge of disease severity or mortality. Therefore, less importance should be placed on O2 sat values and more importance on other contributing factors. To complicate matters further, severe asthma flare ups tend to be cyclic in nature. In between the really bad exacerbations most people will often have periods of relatively good breathing, of which Im currently experiencing. Then there’s the question of whether asthma will reemerge after transplant. Because so few asthmatics have been transplanted, there’s not much data on that. However, my personal Pulmonologists seem to think it would not.
Having taken all of that into account , we all agreed that because I’m currently “stable”, no one(including myself) would want the surgery if the call came today, but because in all likelihood my condition will get only worse, that I should indeed complete the transplant evaluation so that when the time comes I can be listed without delay.
Here’s a list of those things that weigh in my favor for transplant:
1)My lungs are scarred and my airways narrow.
2)My lung function ( ie FEV1, is now in the 20 to low 30 % range).
3)Multiple intubations ( 30 at last count), which in itself is a huge predictor of fatal asthma.
4)Ive had both a respiratory arrest and a cardiac arrest because of asthma.
5)Im at a much higher risk of dying during an asthma attack because of the above.
6)Ive been hospitalized a 120 times and consumed millions of healthcare dollars.
7)A diminishing quality of life, Im breathless almost all the time now.
Here are the things that make me a less likely candidate:
1)My diagnosis is Asthma.
2)I dont’ desaturate unless Im flaring. On a good day, my O2 sats are in the high 90s. Transplant surgeons have a hard time reconciling this mismatch.
3) I can walk farther than most people with equivalent or better lung function.( 6 min walk test)
4) Ive managed to live almost 62 years despite the severity of my disease.
So that’s pretty much where things stand at the moment. I totally understand the hesitation to transplant asthmatics, or anyone for that matter. It’s an option of last resort and the last thing I want. It’s in effect, trading one set of problems for a different set of problems. It’s super risky, comes with a million potentially life threatening side effects, requires the person to take potent anti rejection drugs for the rest of their lives and has dismal survival rates compared with other organ transplants. Then there’s the question of whether you’ll actually be strong enough to survive the surgery itself? And assuming you survive ( as most do), will you make a full recovery?
Im scheduled to meet the transplant doctors again in early Aug to see what their concerns were when they examined me that time on the ventilator, and whether or not they think I should finish the evaluation. If the recommendation is to proceed, then I have to a cardiac catherization to make sure I don’t have any blocked arteries and to see what my PA pressures are, followed by upper and and lower GI tests, as small GI problems tend to turn into big GI problems after transplant because of the immune suppressing anti rejection meds. Lastly, I have to have a repeat echo cardiogram , abdominal ultrasound and another dexascan. After that a final determination would be made and a lung allocation score assigned if transplant is recommended. Depending on my allocation and the availability of suitable donor lungs, the wait time on the list in the San Francisco area can range from one day to more than 2 years. Without getting into all of the depressing statistics, currently the predicted post-transplant survival rate for someone my age and medical condition is only about 2-3 years. Some will live longer, some will live less. And this is why timing of transplant is so crucial. If they transplant you prematurely, you’re life could actually be shortened. The goal is to add years, not subtract them. So again.. timing is everything.
Lastly, there are financial and logistical requirements that have to be ironed out before a person can be put on the wait list. The reality, is that the gift of live is also very expense. Lung transplant surgery and the required life long maintenance care costs a small fortune. Even though I have pretty good medical insurance, I live on a very limited and fixed income and will probably need to fund raise to pay for expenses not covered by insurance.
Whether or not I end up with new lungs remains to be seen, but clearly new rules have to be written for determining acceptable transplant criteria as it applies to asthmatics. This wont happen easy. Until more is understood about organ rejection or until lungs can be clowned in the lab, asthmatics will remain on the bottom of the list for lung transplant eligibility. By then hopefully the researchers will have found a way to eliminate the need for transplant all together.