I am in Florida for the winter and a lung institute is just in the next city over. I called them and they explained they do two types of stem cell treatments. One is using the stem cells from the blood and the other is from the bone marrow. Price was around $6000 for blood and &12,000 for the bone. No guarantees on it, except they’ll take your money for sure. I have IPF and am looking for that cure all too, however, if it’s to good to be true………….At this juncture I am hesitant to embark on this journey as my Pulmonologist (Cleveland Clinic) is a skeptic because of the lack of research out there. That’s what I have found out from talking with the lung institute. It’s a tough decision.
Sorry to hear of your diagnosis, I had a tough time carrying around an oxygen bottle where ever I went, but you get use to it (and usually glad you did). I still play golf, judo’s for your softball cause it calls for running which I miss very much. I do rigorous weight training WITH my oxygen bottle with me and it helps me recover quicker. If I get to winded I start coughing like there is no tomorrow (a well brand name cough suppressant helps sooth my throat and the coughing and on the wrappers it has little quips that motivate me to push harder). I watched the video of lung transplant from Mayo and it was interesting, but not necessarily for everybody I found out. I’m 68 and won’t let “it” define me either. Keep on keeping on and stay positive.
Liked by jms7
My doctor and I were trying to figure out why I cough so often and violently with my IPF. The acid reflux avenue was a shot in the dark hoping “it” was the cause of my coughing. Nah, that was a bust. I didn’t know that a person “could have acid reflux and not know it though. On to more trial and error on my coughing, hopefully we’ll run across something that helps.
Hey Shann and Steve,
Did you know that there is a new Sleep Health group on Connect. You may interested in checking out the discussions there. Steve, I bet you’d have some relevant and useful contributions to make to the CPAP discussions. See the Sleep Health group here https://connect.mayoclinic.org/group/sleep-health/
Liked by Linda, alumna mentor
you can investigate sites like this but the bottom line is that there is currently no cure for iPF. There is a lot of drug trials going on that look promising. there is a weekly IPF newsletter that list current and proposed drug trials. The government has a listing of all current and proposed studies and drug trials. do a search for government drug trials to get the url. this site won’t all me to post it.
I am taking the drug for over a year now. there is no way to tell if it is doing anything. it is very expensive and i have to take 9 caps a day. the only thing i can say is that it sees to have slowed down the progression. I was dx in 2008 and am still alive. the main things i have found useful is exercise, treadmill 15 or 20 minutes a day. I have recently stated on 02 which helps quite a bit when excepting.
@llwortman
Good for you! Keep up the great work you are an inspiration!HugsLw