My 8th year in the SARP

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

I’m phenotyped

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

Jumping back into the ring

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

PFTs Du Jour

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

SARP ends, but the research continues

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 … Read moreSARP ends, but the research continues

Lung Art

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

A SARP’in we will go…….

In a few weeks I’m off to Pittsburgh again to participate in SARP III. The focus of SARP III is to study the stability of clinical and molecular phenotypes of severe Asthma. Basically they’re looking for the bio signature of certain mast cells in the serum and plasma and whether they are maintained over the … Read moreA SARP’in we will go…….

Asthma Phenotypes

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

Lunch with Sally

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

SARP Follow-up

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

Another piece of the asthma puzzle

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

Back to Life

[Not lookin too bad for someone who was on a ventilator just 11 days earlier..eh?] I’m not totally out of the woods yet and I don’t want to jinx myself, but for the first time in 2 weeks, I actually feel like a human being again. I can breath! To celebrate, I went ahead and … Read moreBack to Life