Ready for this journey

[Rory2083]

Hello everyone, Like many I've been visiting the site at various times over the past year or so but this is my first post. My situation is quite unique and I'm hoping to get some information.

About 6 years ago I was diagnosed with bronchiectasis/COPD due to severe smoke inhalation from a house fire. As such, I do not have any degenerative diseases, yet my PFT have been anything but promising. FEV1 has remained stable at 12-14% over the past 4 years, 2-3 liters O2 24hrs per day, and evaluated and listed for double lung transplant 2 years ago. On top of this I am 26 years old and the prospect of transplant is not something I'm quite ready to "give in to" just yet.

While transplant may be my only real option, I am determined to search out every last viable alternative. The most promising has been adult stem cell therapy/ regenerative medicine. I've read so many uplifting stories here and on other forums, I'd like to get as much information as I can and possibly try this therapy. A major problem that I find is the requirement of flying to another country for the procedure. My doctors have advised me not to fly, so many of these destinations are out of the question. Has anyone else dealt with this? Are there any doctors in Canada, Mexico? How reliable are these procedures? So many questions... PLEASE email me with any information or evn simply chatter on the subject. I'll get whatever I can take.

Good luck to every one of you, I hope to continue reading success stories and updates as the field of stem cell therapy advances.

Rory

 

[barbara]

Rory - I have replied to you privately, but many of us are in the same boat as far as flying anywhere. That is one reason I am fighting so hard for ASCTA. While treatment overseas for some people is not a difficult option, for many of us it is an impossible hurdle. I urge each and every one of you to join ASCTA today and e-mail the FDA and your legislators. They are hanging us out to die folks and I for one refuse to roll over and play dead for them because the reality is that it isn't a game. www.safestemcells.org

 

[Jim]

Hi Rory

I might be able to help with the flying details. I not only have dealt with them many times, but I'm also a 37 year veteran of a major airline (now retired / disabled). As soon as the FAA and the airlines starting approving portable oxygen concentrators (POC's) I actually went and bought one new (most people rent, and the prices are pretty outrageous, but then I have better flying opportunities than most people). I got an Airsep Freestyle which is the smallest and the lightest but it has its limits, the max is 3L/m pulse. For me, so far at least, it's worked just fine. I'm guessing you might need a better flow rate and there are other options available. You can explore on the Internet a bit ... just Google "portable oxygen concentrators". The airlines require you have a doctor's certification in order to use it on board (it does not count against your carry-on quota) and most airlines have their own specific form (I wish they'd come up with a generic one). That's just a formality, most doctors recognize them on sight now and just sign them without question. Perhaps the biggest considerations are (a) getting a unit that meets your needs and (b) having MORE than enough battery time available for your flight. There's plenty of info about this online, but I'll be glad to answer any questions that I can.

Wishing you all the best,

- Jim

 

[barbara]

Jim - My biggest problem with air travel is the air quality on board the aircraft. I got a major respiratory ailment after the last few flights I took. My last trip resulted in pneumonia. That is my main reason for avoiding flying, not to mention the nightmare one endures at Denver International Airport. I simply cannot put myself at such risk. The airlines, to the best of my knowledge, have really done nothing other than to ban smoking to clean up the air on board.