I have been haunting the internet ever since I learned that Willie Nelson had treatment, reportedly from “The Lung Institute”, and I have been unable to find follow up data.
One key challenge to me in considering this type of treatment is the lack of factual data. Lots of testimonials, most a maximum of only a year old, with zero updates on those same patients. The Lung Institute, that I’m tracking, says that it’s done over 1,000 procedures. However, it has no statistical package or data to share which shows treatment types, success or failure rates, which types of conditions were helped, specifically, etc. Even someone with only a high school education in biology and medical science understands that you can make numbers show anything you’d like them to show. When you add in desperate people, seeking alternative solutions, the need for statistical data and analytics becomes critical to making a sound choice vs. an emotional one.
I am running into that same challenge with Willie Nelson and a lack of statistical data. Willie, who had his treatment in early November 2015, wanted his treatment to remain quiet and nothing has been posted of a follow-up nature. While I am respecting his right for privacy as much as my nosiness allows, I really just want to shake him, his sons and his PR team and demand an answer. “Hey, how the heck are you feeling today? Was it worth it?”
Of course, my mother’s ladylike daughter would NEVER be that rude (LOL), so I haunt the internet to see other stories of success while I try and understand my version of the disease.
Granted, I’m not an 82 year old man who smoked marijuana all my life, but his numbers – good or bad – would be very interesting to know.
As part of my research, I came across the story of Ron Delkie on YouTube, and I’m grateful for his family leaving it up. And for advising us about his passing so that other sufferers have a potential timeline in mind, if the treatment works for them.
While Ron Delkie’s timeline is not set in stone for everyone else, it’s FACTUAL information vs. bullsh*t public relations non-answers, and I appreciate that touchstone.
I’ve also found an interesting website, Stem Cell Pioneers, which is run by a patient, Barbara, who had her first treatment in 2007 and is still going strong 9 years later.
Barbara is a great interface for the medical community and people considering stem cell treatments, and she calls us all out on our “lurker” status as sponges who want to know what’s happening, but who don’t give back very much to other folks seeking options.
Having lost some endurance over a Winter spent hiding from the California rainy / damp season, I’m looking forward to the start of the drier weather (yes, despite our drought, I’m being selfish as Winter has already has had its annual nine (9) weeks, thank you very much, and it’s time to go away!). Our water levels are getting much better in the reservoirs, as we are almost back to normal – and that’s before the Sierra Nevada snowpack melts.
and, my favorite fishing spot in Santa Cruz:
Where I had been able to swim at the YMCA for about two (2) hours on some days, but one (1) hour every day, guaranteed, I am currently only able to tolerate about 15 minutes. Sad, but an understandable Winter retardation of progress given the toenail surgery I had to keep me off my feet and out of the pool, plus the time spent hiding in my home, not moving very much during the Winter rains.
COPD is a predatory disease. You have to keep on moving, and faking it out. To keep on moving, you need warm, dry weather and lots of sun. While I can (and do) go out in the rain, the dampness makes my lungs swampier (if that’s a word), and the residual tiredness from the added congestion in my lungs is a challenge to fight.
So, I’m thankful we had a week of sun and dryness before the next round of showers. And, bring on the sun ! Spring needs to debut and stick around, please.