Hi Sam, sorry for the delay. I will answer your questions in red below. I am also going to post this on my personal site because others need to know. I will change your name, however, to protect your identity. My comments/answers are in red.
Sent: Tuesday, January 03, 2012 7:10 AM
Subject: Stem Cell Trearment for CF
I hope you don’t mind my contacting you? I was given your email address by Kelly at Regenocyte.
I am a 38 year old cf sufferer and have recently heard about the adult stem cell therapy that Regenocyte is offering.
As one of their patients, would you be able to answer a few questions for me please?
1. How much improvement in your health have you noticed since the treatment?
Pretty amazing results. My FEV1 was below 18% in May of 2011 after the trip to the Dominican Republic. It was 18 when I left Nashville. The travels down to FL, then the flight to the DR almost killed me. I was not able to do any of the driving to FL, had to rest a few days before the flight, then was in a wheel chair to get through the Miami airport. I was so weak by the time we got to the DR, that I rarely left our hotel room, and when I did, my wife had to push me around in a wheelchair. In August, my FEV1 was 32%. Most recently it was in the mid and upper 20’s. and some of the other PFT numbers were more than 50% improved from last year. Here is the real difference. I am driving the car again, and getting out of the house almost every day, on my own power. I have clarity of thought again. Was in a fog for the past year before August 2011, due to lack of oxygenation to the brain. You can read my posts and for more info.
2. Apart from any improvement in your PFT’s, how has your overall well being changed eg. Levels of energy, amount of sputum, amount of coughing etc etc?
see above. also more energy. can do some light chores around the house again. sputum is down a lot, but I am also continuing the use of Pulmozyme and Tobi. However, in 2010 and 1st quarter of 2011, several tune ups did nothing to improve my situation. My doctors gave up on me and were waiting to hear that I was dead. 1st quarter of 2011 I had 3 back to back hospitalizations/tune ups with heavy IV antibiotics which almost killed me, but did nothing to improve my lung function. Then in April, they put me on inhaled Cayston. That almost killed me in 3 days before I quit taking it. In May, just a couple of weeks after the treatment, and before the stem cells produced any noticable changes, I was so weak and undernourished, that my lungs stopped at one point. I was only minutes from death. But it was not my time to go. I beat on my chest a few times and was breathing again. About 6 weeks later, I started seeing/feeling real changes in my lungs.
3. How have your ‘regular’ CF doctors reacted? Do they believe the treatment has helped? Did they have any reservations before you went ahead?
They are in total disbelief. The doctors in Nashville would not even talk to me about it. Now that I am in South Florida, my CF specialists is much more civil and talks to me about it, but he still does not believe it works.
4. Finally, would you recommend others to try it?
I hope you get time to reply.
In the meantime, wishing you all the best of health and a Happy New Year.