June 20, 2013 — 2 Years Beyond my Expected Funeral, Still Alive!

First of all, I want to again express my gratitude for everything that God has arranged to renew my life these last couple of years.  I knew that a lung transplant was not the road for me for a variety of reasons.  I also knew a few years ago, that if I lived long enough, that adult stem cells would be a viable treatment to grow new lung tissue.  I thank God that I lived to see it become a reality.  I also thank all of you who gave so selflessly in financial contributions and prayers to make everything happen.  Many who gave, don’t even know me. I thank my mother who donated bone marrow twice to provide the stem cells that brought me back from the dead. And I thank Dr. Grekos and his team, not only for their expertise to develop these cutting edge procedures, but for continuing to push against the political tide of insanity in this country that attempts to shut down this program that gives life and reduces the need for medications.

 

Progress Update:

By March of 2013, I was getting out of the house and attending up to 4 or 5 business and social events several days a week.  Some weeks, I was out 4 or 5 consecutive days. I was sleeping well, waking up more rested than usual, and ready to take on the day again. After a busy week, I was able to get up early on Saturday to make our service and spend all day with our mishpocah/church family.  Even more amazing is that I was often getting through the day without an oxygen tank!!!  So to my CF doctors who still don’t believe that the stem cells work, my life is living proof. Oh, and prior to the Spring of 2011, I was getting heavy duty IV medications (we call it a tune-up) 4 to 5 times a year just to stay alive. I have not had a tune up since that Spring of 2011.

 

Recent Setback:

In April 2013, I had a pretty serious setback.  My lungs were filling up with more than usual congestion, and my lungs started bleeding again.  May was still a struggle, but better than April.  Here it is, 3rd week in June, and I am getting short of breath walking across the room. I am again dependent on the oxygen tanks, and do not get out of the house very often.  Even showering is again a struggle. It has been just over a year since the second procedure, and I know that I need to have these procedures more frequently for now.

 

Good News on the Horizon:

I have been talking with Kelly Drouin at Regenocyte.  She tells me that they have refined the procedures with amazing results that are even better than before.  They are mixing stem cells from the bone marrow with stem cells from body fat.  The marrow cells are more action oriented. The fat cells are very nourishing, and they nurture the marrow cells into better action.  Then a triple whammy by adding growth hormones to turbocharge the cells. I am really excited about the results and need to get in for a treatment before I loose any more lung function from the recent setbacks.  By sleeping 12 hours a day, and doing more breathing/inhalation treatments, and heavy duty huffing and puffing to clear my lungs of the congestion, I am maintaining for the moment.  Not making any progress, but also not losing any ground for now.  But the struggle to breathe continues.

 

The Need:

At this time, I am not sure of the exact cost of the procudures. Traveling has become too difficult for my mother, so we have to find a clinic inNashvilleto take the stem cells from her marrow and body fat, then chill and ship the cells to meet me in theDominican Republic. I have to research the cost of that procedure and sending the cells by air. My guess at this point is that we need to raise between $40,000 and $50,000 to cover all the costs for the procedures, transportation, travel, facilities, and lodging.  As I learn more info, I will post an update.

 

I covet your prayers, and if you also wish to contribute financially, I am forever grateful. Words cannot adequately express what I feel for the blessings that so many of you have been to me and my wife.  She is not ready to be a widow, and while I am confident in my eternal destiny with my Lord, I am not ready to go home just yet.

 

Thank YOU, Thank YOU, Thank You!!!!!

 

If you wish to make a contribution for any amount, please go to:

http://www.thestemcellalliance.org/

click on “MAKE A DONATION”

In the “Comments” fields, type: “Cystic Fibrosis”

DO NOT TYPE IN MY NAME, AS THAT WILL VIOLATE IRS CODE FOR A 501c3 organization.  But if you type in Cystic Fibrosis, they will now that the money is for my treatment.

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