Just read hearthurts new post--thank you for responding to my plea for information.

This is worrying news for all of us, myself included. Hoping at least someone out here has been able to halt the injections and maintain considerable improvements. Thanks for the response though. I genuinely appreciate the transparency--now I want to hear from Florida.

Keep in mind -- I am going to be 8 shots in soon, so I will keep you guys posted on every improvement and issue I continue to have. Of course, ideally Dr. Das will figure something out that doesn't require as many repeated trips. Hopefully Steve's upcoming stem cell injection buys even larger swaths of productive and happy quality of life. I will be willing to be hazard full-blown stem cells too in the next year if I am still struggling. I no longer care about quantity of life as much as I do quality. If it takes a big risk, I will be willing to take that risk one day if it affords me the possibility and opportunity to fully live again.

Also, our community gets stronger as we get louder. Keep posting guys. Keep coordinating. The internet allows us to do so. I am contemplating joining Das' facebook soon, but prefer some anonymity and privacy still. 

My status: I am about 5.5 weeks out from my 7th PRP/ACELL (NOTE: I received no other form of surgical or injection-type treatments before these shots). I am doing okay when I am up, out and about. I have been experiencing some trouble sleeping. My breathing also gets worse when I sit. But I have a very positive running update from earlier today.

The past couple days: When I waken in the morning, I don't always feel well-rested (Please note, however, that I have had previous weeklong periods during my entire shot protocol where I do feel well-rested; I imagine this is when my nasal cycle ramps up causing my nerves to coordinate and fire; and also causing my turbinates to engorge, filling up missing space. I used to awaken feeling so ill I wanted to kill myself, and to experience this urge constantly; but now I awaken feeling maybe a 6 or 7 breathing average (versus a 0 or a 0.1 quality of life), which is still more than enough to function. But my condition seems to deteriorate a fair bit throughout the day, especially when I sit down or try to rest, to the point where it gets a stressful. Nothing too bad yet, a couple mild panics where I take Ativan, but obviously I don't want to lose ground, and am concerned I might. Again, this is why I want us to now hear from Florida. I mean isn't that guy/girl an actual professor? They're a valued member of our community. Where are they?

My positive running update: I have now run 2 full laps without stopping, in under 4 minutes and 55 seconds. I did this in a hilly park where the laps are slightly longer (I would imagine) than the standard 400 meter rubber track laps. This might not seem like a big deal to the average person, but it's a big deal to me. My one lap 400 meter time is just over 1 minute and 46 seconds, timed several days ago. I was a very fast runner in high school and these times are embarrassingly slow to anyone who follows the sport. But I can 100% certify that I am doing much better than I was a year ago to this day.

Will keep you guys posted. I will come out with an entry soon delineating my go-to tips for dealing with my scary empty nose flare ups. I don't expect they will work for everyone, or in all cases, or at all times, but if they have helped me, I think they might help the rest of you.

Best regards as always. Our community is filled with smart, friendly, and helpful people across the globe. The more we coordinate, the stronger we get. Speak up and out. Civilly. And let's really get this stem cell movement going.