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 […]

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 […]

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 […]