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 in order to provide me the drug on a compassionate use basis, as it has not yet been approved to treat asthma.

In preparation for the latter, I’m currently working my way through the pre- transplant program at UCSF. My asthma is much worse now than it was back in 2012 when I was pre-evaluated at Stanford, but during this current eval there are new questions regarding the integrity of my upper airway. If there are signs of scarring or damage from the asthma or all the intubations, then transplant is not an option. You need a healthy upper airway(the part of your windpipe that extends from the back of the throat, through the vocal cords, down the main bronchus to the carina where the airway splits off to the right and left lungs.) Even if an eventual recommendation for transplant is made, I’ll undoubtedly have a low UNOS allocation score, which means a potentially and significantly longer wait time on the list and a lower chance of long term survival. There’s no precedence, at least that my doctors could find, for performing a lung transplant on a person with a primary diagnosis of asthma, so if it ever happens it will be a first.

On the fitness front, given that my lung disease is getting worse, people have been asking me …Do you still walk everyday? Because I consider daily exercise an important part of any treatment plan, the answer is, and hopefully always will be, YES!, though obviously I can’t walk as much as I used to. This most recent exacerbation which started a few weeks back, wiped me out physically and I was unable to resume with my routine walks for almost a month. This is the longest break from my daily walking that Ive had in over 10 years. I was only in the hospital for 9 days, but I spent 6 of those days on and off a ventilator. My leg muscles were so weak from the all drugs ( propfol and solumedrol are leg killers) and from being bed bound, that I basically had to re-learn to walk all over again. For the first time ever, I had to leave the hospital with a walker… talk about an ego buster. It’s now been 2 weeks since I was discharged from the hospital and Im back up to 1.5 miles with a break at the halfway point. Im also a bit slower with it taking me about 32 minutes to complete the walk. That’s about half the pace and about 1/3 the distance I was walking just a year ago. I attribute that decline to the almost monthly hospitalizations I had this past year. Seems like once I get back to baseline after a bad flare , I get sick again and the recovery cycle starts all over.

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3 thoughts on “Evolving treatment plan

  1. I recently found your blog, during one of my many hospital stays.
    In two weeks I am starting Nucala, they will alternate with Xolair.
    I am just looking for your thoughts on this drug.

      1. I strongly urge people with breathing or lung problems to take A high strength Triglycerate Magnesium supplement, as it is helping me with my Emphysema.

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