Hard to believe, but this week I began my 8th year as a research subject for the Severe Asthma Research Program (SARP). This is actually the 3rd study (SARP III) in a series of 3 that started back in the early 2000s. Each had a different focus. They stopped recruiting new participants for SARP a […]
So my asthma is acting up again and I feel like I have the proverbial elephant sitting on my chest. I say my asthma is acting up, but in actuality it’s always acting up, so I guess what I really mean is that my symptoms have been ramping up from my norm, getting more intense. […]
Need proof of just how expensive asthma can be? These are my hospital bills for the last two years, coming in at just over 2.1 million and change. 2016 2015 Related Posts:104th trip to the slammer for AsthmaThe Recovery phases of a severe asthma exacerbationNumber 96 Number 95Never trust asthmaIn other news
It’s been a very busy month indeed. When they say a lung transplant evaluation is thorough and exhausting, they’re not kidding. Every time I think Ive completed all the required tests, the transplant coordinator calls to say I still have more to do. In addition, some of these test have to be repeated every few […]
Things seems to be changing by the day. As of March 24th 2016, the latest plan is to put me back on Xolair until I can either obtain the biologic drug, Dupilumab, or until lung transplant becomes the only option left to extend my life. Sanofi/Regeneron, the makers of Dupilumab, need to get FDA permission […]
Not sure what’s going on. Since 2003 when my asthma started to get really bad, it was for the most part, relatively stable and the symptoms tolerable for several months at a time. Even the exacerbations, while still very severe on occasion, were somewhat predictable. Likewise, my lung function, specifically my FEV1 and FVC, though […]
Thanks to the efforts of the SARP researchers and the new era of severe asthma phenotyping, my particular flavor of the disease has finally been described. Drum roll please………………… It’s called “Long duration Th2 low/mast cell high with remodeling“, asthma. It probably sounds like a bunch of googly gob, but about half the people with […]
Though still in operation, the NIH funded Severe Asthma Research Program (SARP), which started 14 years ago, is now officially closed to new enrollees. Sadly, it looks like SARP will be the last large observational study of severe asthmatics, at least for the foreseeable future. The good news, is that there’s still a lot of […]
Most people will tell you Im one of the sweetest, most caring people you’ll ever meet. But make no mistake, when Im recovering from a bad asthma exacerbation, I can become an obnoxious asshole… I get anxious, I get irritable, I get angry and nasty all at the same time. I snap at everyone and […]
Hard to believe that it’s been 3 years since I’ve trained for a race. I came close to doing one last year, but a lot of stuff was happening and I was getting sick too often. Well except for my little dental mishap a couple weeks ago, things have been much better lately and that’s […]
The Severe Asthma Research Program’s first Newsletter. Well worth reading! A Breath of Fresh Air Related Posts:#131Never trust asthmaSally doing her thingAerogen Nebulizer Gets an A+I almost forgot who I am2 years, 2 million dollars
Not to downplay the heartache and suffering that people with milder forms of asthma have to sometimes contend with; obviously it’s a big deal when you can’t breath, but the healthcare establishment needs to stop lumping all asthmatics together under the same general heading of “asthma”.This is a problem because severe asthma is not the […]
Just one of the many joys of taking prednisone. I know chronic steroid use can cause paper thin skin ( what we call “crepe paper” skin in the biz), which then makes you more susceptible to spontaneous bruising, but Ive noticed lately that if I brush up against almost any surface, no matter how gently, […]
