#131

I haven’t written about an asthma hospitalization since my 104th admission back in May of 2011, which by my calculations makes a total of 27 more severe exacerbations requiring hospitalization in just a 6 year period. That’s just plain crazy, which is why Im writing about this topic again. So here goes #131 This particular … Read more#131

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 … Read moreSally doing her thing

It follows me everywhere, even into my dreams.

I swear you cant escape this shit, it follows you everywhere…. even into your sleep! Not that Im able to sleep that much anyway, when I do it’s usually from pure exhaustion. But when I do fall asleep it sure would be nice not to be interrupted by a terrifying nightmare involving an acute severe … Read moreIt follows me everywhere, even into my dreams.

My asthma has changed again

I’m not talking about the disease itself, I still have the classic text book definition of asthma, maybe even to a greater degree than many. What I’m referring to is the changing ways in which my asthma manifests itself. Like many inflammatory diseases, asthma symptoms tends to be cyclic in nature, where you have periods … Read moreMy asthma has changed again

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

No transplant for me, but that’s OK.

If you’ve been following my medical journey, you might recall that last summer I began the evaluation process for lung transplant at UCSF medical center. The conclusion of that evaluation came 6 months later in Dec 2016. At that time I was deemed a suitable candidate for transplant, but that my listing with UNOS would … Read moreNo transplant for me, but that’s OK.

Aerogen Nebulizer Gets an A+

Last week I was in the hospital again for my asthma resulting in yet another intubation. As sometimes happens, a few hours after coming off the ventilator I began to tire out and get tight again. The re-started interval neb treatments weren’t cutting it anymore, so they decided to put me back on continuous nebs. … Read moreAerogen Nebulizer Gets an A+

Those damn stickers

Things get lost or disappear in a busy hospital,so I totally understand the need to properly identify a patients personal belongs. On plastic bags, documents, even on clothing is fine. But seriously, don’t put them on my phone or favorite leather wallet that you’ve now ruined and will have to pay for. If it hasn’t … Read moreThose damn stickers

I almost forgot who I am

I’m so much more than just the quirky little dude with bad lungs. I’m the original badass asthmatic. I made the words “fitness” and “lung disease” sound cool together. Im the first and only person with really severe asthma ever to finish the Boston marathon. Not once…but 3 times. Im also one who doesn’t gets … Read moreI almost forgot who I am

Prelude to an asthma flare

So my asthma is acting up again and I feel like I have the proverbial elephant sitting on my chest. I say my asthma is acting up, but in actuality it’s always acting up. So I guess what I really mean is that my symptoms are ramping up from my norm, getting more intense by … Read morePrelude to an asthma flare

2 years, 2 million dollars

Need proof of just how expensive asthma can be? These are my hospital bills for the last two years, coming in at just over 2.1 million and change. 2016 2015 Related Posts:A common cold with not so common asthma104th trip to the slammer for AsthmaThe Recovery phases of a severe asthma exacerbationNumber 96 Number 95My … Read more2 years, 2 million dollars

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 … Read moreBipap trial