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 … Read moreMy 8th year in the SARP
Having documented a significant, but relatively slow decline in my lung function over the past decade, Ive often wondered what life must be like for other asthmatics who have a baseline FEV1 below 25%. Well, now I know. According to the last spirometry results, which I did for my annual SARP follow up visit last … Read moreHow low can it go?
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 … Read moreI’m phenotyped
After a 4 year break, Im back to doing monthly visits over at the UCSF severe asthma clinic. Im super lucky, because my doctor there is John Fahy MD, a colleague of Dr Wenzel and one of the principal investigators for the SARP program, for which I’m also patient research subject. To get right to … Read moreJumping back into the ring
For those interested, here are my latest spirometry results from last weeks SARP follow-up visit at UCSF last week. It’s kind of a bad-good-bad then good-good-bad story. Starting with the not so good news… my initial FEV1 was only 28% (.83 liters) this time. That’s down 4 percentage points from last years visit. The good … Read morePFTs Du Jour
Well, almost. The study actually lasts for 3 years, but the bulk of the testing can usually be completed in 4 half day visits. After that, it’s annual follow ups and the occasional online questionnaire. Because I had a separate clinic appointment with Dr Wenzel, and because there has to be a 3 week space … Read moreSARP III complete
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 … Read moreNot just Asthma, Severe Asthma!
I thought this was so clever. A few months ago a good friend of mine from Toronto, asked me if I could she use one of the images I had of some mast cells and lung tissue that was collected from my airways during an earlier bronchoscopy. She was going to somehow use them for … Read moreLung Art
Physician researchers at the University of Pittsburgh Asthma Institute at UPMC are now using molecular and genetic information to identify asthma phenotypes and customize therapies in order to improve patient outcomes. If you have asthma and would like to contribute to this on going research, please consider volunteering for
Had the great fortune of having lunch last week with one of my most favorite people in the whole world. Dr Wenzel was in town for the annual AAAAI convention in San Francisco and managed to squeeze in some private time with me in between her busy presentation schedule. Although we keep in close contact … Read moreLunch with Sally
Wow, has it been an entire year already? I guess so, because I just completed my one year follow-up interview for SARP. This time it was just a phone interview. One of the researchers called me last weekend and asked me a bunch of follow-up questions. Most of the questions had to do with whether … Read moreSARP Follow-up
Just got my lung biopsy report back from SARP study, are starting to paint a clearer picture of why my asthma is so severe. If there’s any good news in all this, it’s that there’s a new drug in the pipeline that could possibly help people like me who have this cellular abnormality. Dr Wenzel … Read moreAnother piece of the asthma puzzle