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 […]

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 […]

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.

Moving right along……

It’s been a very busy month indeed. When they say a lung transplant evaluation is thorough and exhausting, they’re not kidding. Every time I think Ive completed all the required tests, the transplant coordinator calls to say I still have more to do. In addition, some of these test have to be repeated every few […]

What’s up with the lung transplant eval?

Ive been posting fairly frequently, either here or on my Facebook page, about what’s been going on with my asthma treatment in the conventional sense, but a lot of people have been asking me what’s up with the lung transplant stuff. Things like, am I still considering it? Am I a potential candidate? Hows the […]

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 […]

Temporary Reprieve

Earlier this week I had my long awaited lung transplant evaluation at Stanford University. Dr Weill and the other team members were awesome. I learned a lot and am satisfied with the outcome. In fact I think everyone involved in my care to this point has learned something. Very few asthmatics are ever referred for […]

The OTHER Breathinsteven

His human name is Steve Ferkau, and his story is truly amazing. Related Posts:Its what he DIDN’T sayWhat’s up with the lung transplant eval?Treatment overloadEvolving treatment planThe meetingThe SARP experience

The meeting

Before I begin, let me preface this post by saying that I haven’t made up my mind as to whether I would even want lung transplant surgery, should it ever get to that point. I wanted however, to see what some of my Pulmonologists views were on this subject, and to get a feel for […]