Wednesday I have a pulmonary follow up visit at the UCSF chest clinic. What makes this appointment different, other than the fact that I will be breaking in a new Pulmonary fellow, is that we will be discussing some future treatments options, including bronchial Thermoplasty and Endobronchial Valve therapy (EBV) . At the present time, both of these procedures are still considered investigational,but both are in the process of seeking FDA approval . The latter (EBV), has never been done on an asthmatic, but because I have severe air -trapping, similar to that seen in emphysemic patients, it might be an option. I’ll go into more details about these specific treatments options in a future post.
I’m also requesting a referral to be seen at the University of Pittsburgh Asthma Institute in Pittsburgh Pennsylvania . World renowned Pulmonologist and severe asthma researcher, Sally Wenzel who’s part of the SARP team, has agreed to take me on as a patient. Dr Wenzel takes care of some of the most severe asthmatics on the planet and has done some fascinating research in the field. While she may not have much new to offer to my current care plan, there’s a lot that she and her team might be able to learn from me as a research subject, which might then get me in the door for future experimental therapies.
Don’t get me wrong, I have some of the best Pulmonologists in the world taking care of me right here, right now, in San Francisco, but UCSF doesn’t really specialize in the treatment and/or research of the more severe forms of this disease. If you have severe asthma that doesn’t respond to conventional therapies, I think it’s crucial that you seek out alternative treatment options, even if they’re considered risky. Never settle for the status quo. If it turns out that nothing more can be done for me, that’s fine , but at least I’ll know I gave it my best shot…..right?
I’ve heard a bit about the bronchial thermoplasty, but not about the lung stents. Sound like interesting procedures–not that it’d be any fun having stuff put in your lungs, but if it helps, that’s awesome.
It’s also cool that you might get to see Dr. Wenzel. Goin to someone who regularly deals with severe asthma might be an interesting experience.
I kind of get what you’re saying about Dr. Wenzel compared to your other pulmonologists. I’m finally going to see a respirologist at the end of October, and going to see someone who specializes in lungs will probably be a lot more effective than seeing my regular GP for my asthma. I’m hoping he’ll have some ideas for me–being a hard to control mild asthmatic is a weird thing. Still, it will be interesting.
Best of luck with this, Steve, I’m looking forward to updates (and, hopefully progress made!)!
Sounds like a very good plan. Good luck.
Cool Steve, way to be an example and make it happen for yourself (hopefully with the best results). I look forward to hearing about your appointment.