New-Old Game Plan

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Been a busy couple of weeks. As a follow up to my last post, the plan to try me on one of the new biologics has been scrapped. Because Im on steroids so often, it’s too difficult to tell if I have the type of TH2 response that most of these drugs were designed to target. Factor in the cost (up to $3,000 per dose on some of them), the logistics of obtaining the drugs ( all, but one of the drugs are still in clinical trials) and the questionable benefits, if any, that might be derived) was enough to put this plan on the back burner, at least until more data is available on the treatment outcomes from these drugs.

There are 2 other options they want me to consider. These are not new, but rather a reconsideration of previous treatments plans. The first involves re-starting me back on the one of more proven biologics, omalizumab (Xolair). I was on it for 12 months back in 2008 when the drug first came on the market. Combing through my medical records for that year, it’s difficult to tell if I had fewer exacerbations while on it, but I think it did help with my allergies, which can sometimes trigger exacerbations bad enough to put me in the hospital. Of course, it could also be that my asthma was less severe at the time. My gut feeling is that the drug probably wont do a heck of a lot for me in terms of daily symptoms, but if it saved me from just one bad exacerbation or hospitalization per year, it would be totally worth it. But as usual, there’s always a financial catch to these hi tech wonder drugs. Like other biologics, Xolair is still relatively expensive at almost $1,000 per dose, and with a large co-pay, this treatment option might be a non-starter from the get-go. I wont be able to afford the drug unless I get considerable help from the manufactures co- payment assistance program. I hope know within in a couple of weeks.

Another avenue we discussed, and obviously a path of last resort, is lung transplant. Ive been down this road before when I was referred to Stanford for a preliminary evaluation. At the time I was deemed to healthy for the risks involved. Following that evaluation 4 years ago, and after lot’s of education and soul searching, I decided that if I was lucky enough to reach the age of 60, that I would leave well enough alone and live the best I could with the lungs I was born with. Well, Im 61 years old now and my sentiments haven’t changed all that much, but Im human and with my asthma becoming ever more precarious and increasingly debilitating, and with family’s desire to not see me suffer, I have agreed to talk with the transplant folks at UCSF to get their opinion.

Obviously, mine is an unusual case. But asthma, even very severe asthma, is an extremely uncommon primary indication for lung transplant. There’s very little medical precedence for it, so even if Im approved for transplant, no one really knows what my life would be like afterwards. They’re pretty sure Id breath a heck of lot better at first, but would my PFTs improve 100% or only marginally? Would my asthma symptoms come back? No one can say for sure.

As with all potential lung transplant candidates, timing is everything. Regardless of the reason for seeking transplant, the transplant team always has to grapple with the question…Will the person live longer with a lung transplant than without one? It’s an extremely fine line. You have to be close to death,usually 2 years of less, but at the same time deemded healthy enough to survive the surgery and subsequent recovery. With most fatal lung diseases, such as CF or pulmonary fibrosis, that answer is fairly easy to determine, with asthma it’s not. Again, no one can really predict how long a severe asthmatic with very low lung function will live, so they have to come up with other criteria to determine mortality. Personally, I don’t think Im at the point of no return with this disease quite yet, but perhaps the transplant people know something I dont . Im hoping that they will at least tell me what clinical indicators they’ll be looking for in order to actually place me on the transplant wait list.

In semi-related news, earlier this week I had an echo cardiogram done. Because I suffer from orthopnea, it was thought that part of my dyspnea might be a result of heart failure instead of just asthma. Because they didnt see any tricuspid valve regurgitation, they weren’t able to measure my pulmonary artery pressures. So while not definitive, it doesn’t look like I have any significant cardiac abnormalities. On a CT scan done a couple weeks earlier, they did discover mod-severe atherosclerosis, for which they started me on baby aspirin. All of these and many more tests will have be done as part of the transplant evaluation process. If they discover any organ failure or malignancies, it would preclude me from moving forward with transplant.

So that’s the latest. I have several other medical appts in the coming weeks, so hopefully I’ll have a better idea what the game plan is going forward.

http://breathinstephen.com/