Bipap trial

It’s too soon to tell if it’s helping, but 4 weeks ago I started on a trial of home Bipap. Essentially Im sleeping hooked up to a non -invasive ventilator. I’ve been using a full face mask which Im gradually getting used to. Right now I’m averaging about 4- 5 hours per night on the […]

I live in the yellow zone

Always trying to figure out why my asthma is so difficult to control, I decided to look at my daily peak flow numbers, neb treatments and symptom data over the last 3 years to see if anything stood out. This is what emerged: Despite being on 1000mcg of inhaled inhaled steroids and a long acting […]

Transplant candidate rules

In addition to a litany of medical tests, UCSF requires all of their lung transplant candidates to follow a strict set of rules, including having a caregiver plan in place during the initial recovery process. They require you to have someone with you around the clock while staying at a local hotel for a period […]

Its what he DIDN’T say

If you’ve been dealing with complicated or persistent asthma for a long time, your doctor has no doubt given you the not so surprising…. “I don’t know what else we can do for you” talk. My doctors ran out of ideas years ago, so Im pretty used to hearing it, but at last weeks hospital […]

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 […]

In other news

And despite all the medical appointments, I still managed to learn a dozen new tunes. Related Posts:104th trip to the slammer for AsthmaNumber 94….a Bad OneMy 133rd hospitalization for asthma23rd time’s a charmNumber 96 Nice try asthma, but I’m still here.

But you look so healthy

How many of you with asthma problems can relate? “But you don’t look sick”, or “Your sats are OK” or ” “Maybe it’s just anxiety” or “If you’re so sick, how are you able to exercise and do normal things?” As a person with very severe lung disease who publicly flaunts his fitness achievements, Ive […]

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 […]

Don’t forget the upper body!

If you’ve spent much time reading my blog, you’ve probably figured out that Im a huge promoter of daily exercise for people with lung disease. My favorite fitness activity of course, is distance walking. Aerobic exercise such as walking, uses large muscle groups to move at a steady, rhythmic pace. It’s an excellent way to […]

Treatment overload

Yes, another update about treatment options. Things seem to be changing at a lightening pace now and it’s making my head explode. Too much for an over-thinker like me to think about. Gotta slow down and literally catch my breath. So my 3rd hospitalization and 5th intubation in just the first 4 months of this […]

Evolving treatment plan

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

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 […]

Im the conundrum, the outlier, the oddball asthmatic

I can’t tell you how many times people have written to me telling me that their doctors can’t figure their asthma out or that they have nothing more to offer them. With over 25 million asthmatics in the US alone, there’s bound to be a few who of us who don’t fit the typical asthma […]