Sally doing her thing

Im referring to Dr Sally Wenzel of course. I never get tired of listening to her speak and educating others on the subject of asthma, particularly severe asthma. So here’s a full hour of Sally goodness! The audience in the video are physicians, but even if you’re not a medical person, if you’ve lived with […]

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 […]

Dupilumab

3 and half years ago I wrote about the exciting news regarding a game changing drug called Dupilumab. Dr Wenzel and others believed that this drug was going to revolutionize the way certain forms of severe asthma are treated. Well, very soon now I’ll get to try it out myself! This past week I received […]

How low can it go?

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 […]

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 […]

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 […]

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 […]

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 […]

SARP Newsletter

The Severe Asthma Research Program’s first Newsletter. Well worth reading! A Breath of Fresh Air Related Posts:The do- another- race verdict is in.Steroids, less is always betterA common cold with not so common asthmaMy first 7 weeks on DupilumabMy 133rd hospitalization for asthmaFlavor of the month

SARP III complete

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 […]

Not just Asthma, 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 […]

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 […]

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 […]