Moving right along……

Posted on Leave a commentPosted in Asthma, Lung Transplant, pre lung transplant, Pulmonary function tests, Severe asthma

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 […]

Evolving treatment plan

Posted on Leave a commentPosted in Alternative Asthma treatments, Asthma, Asthma treatments, pre lung transplant, Severe asthma, Steroids ( prednisone)

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 […]

No matter how well I take care of myself

Posted on 8 CommentsPosted in Asthma, asthma awareness, Asthma Education, Asthma exacerbations, Asthma hospitalization, Asthma Medications, Intubation, Severe asthma, Ventilator

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 […]

I’m phenotyped

Posted on 2 CommentsPosted in Asthma, asthma phenotypes, Sally Wenzel, SARP, Severe asthma

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 […]

SARP ends, but the research continues

Posted on 1 CommentPosted in Asthma, asthma awareness, Sally Wenzel, SARP, Severe asthma, University of Pittsburgh Asthma Institute

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 […]

Im an A hole when Im sick

Posted on 7 CommentsPosted in Asthma, Dyspnea, Exacerbation Recovery, Hospitals, Recovering from severe asthma attack, Severe asthma, Shortness of Breath

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 […]

Training to walk my 9th marathon

Posted on Leave a commentPosted in Asthma, Marathon Training, Marathon walking, Marathons, People, Places and Events, Portland Marathon, Severe asthma, walking events

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 […]

Not just Asthma, Severe Asthma!

Posted on 2 CommentsPosted in Asthma, asthma phenotypes, Intubation, Severe asthma

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 […]