You Have No Proof!

July 25, 2014

My current cystic fibrosis doctor has been treating me for about three years now. I started seeing him after my first adult stem-cell treatment. We moved to South Florida in July of 2011, so I had to find a new specialist doctor, and I chose Doctor Hadeh at the Cleveland Clinic in Weston, Florida. He was formerly head of the CF Clinic in Philadelphia, so I was comfortable with his cystic fibrosis experience.

I was honest right away about the stem cell treatment. I wanted to be able to have open discussions about my health. Something I was not able to do with my doctors in Nashville. I shared my recent history with Doctor Hadeh, and told him that I was virtually brought back from the dead because of the adult stem-cell treatment performed by Doctor Zannos Grekos and Regenocyte. Doctor Hadeh was interested and willing to discuss anything with me without branding me as a non-compliant patient, but he did not believe that the stem cells accomplished anything.

He said, “You have no proof.”

I said, “I am the proof.”

He was looking for something akin to clinical trials or some other clinical proof.  I can understand that, but over then next three years, he sounded just a little less convicted in his assertion that the stem cells did not work. He saw my medical records that showed how often I was getting IV tune-ups–four times a year. And from December 2010 to February 2011, I had three back-to-back tune-ups, but my health continued to decline. Right after the first stem cell treatment, I had my last tune-up. That was May of 2011. I have not needed a tune-up since then. And Doctor Hadeh is very aware that I have not needed a tune-up since then. It is unheard of for a cystic fibrosis patient to go from end stage and needing four tune-ups a year to being more healthy and not needing any tune-ups at all.

I asked Doctor Hadeh what he would need for proof. He said a comprehensive set of pulmonary functions test before the treatment, then again after the treatment. Yesterday I went in for the “before” test. and here are the results.  The primary indicator of lung function for cystic fibrosis is the FEV1 number. That was 20% yesterday. It is down from a year ago, because I really need to get the treatments at least once a year. It has been two years since my last treatment and I have lost some function. I have highlighted some of the key numbers. Forced Vital Capicity (just above FEV1 on the page–see below) is 45%. Total Lung Capacity is 131%, and Diffusing Capacity is 61%. We will do the same tests again in three months, and then in six months.

Here I am doing the tests:

IMG_0622 IMG_0625

I want to thank all those who have made this possible. Many of you have been praying on a regular basis. When times are at the most difficult, I can sometimes feel the power of your prayers. That was the case last week when all the stuff hit the fan at the same time. We got the nose bleed under control with an intense cauterization. I got new eye glasses. Got the car fixed, the A/C fixed. Got a new oxygen concentrator. The day after I made my last post about all the stuff happening at the same time, I had a great peace come over me and I knew that you were praying.

I also want to thank Vital Flight for donating the flights for our trip. And thank you to those who contributed financially. A donor who wishes to remain anonymous contributed a huge amount to cover the entire medical procedure. God is so Good…All the time. Thanks to my sister and brother-in-law for paying for the hotel and other costs while we are in the Dominican Republic, and especially thanks to my sister, Dorothy Thompson for agreeing to be the donor for the upcoming treatment. Stem cells from your bone marrow will be growing new tissue in my lungs.

This continues to be an amazing journey, and I hope that my experience is paving the way for other cystic fibrosis patients to get these life-saving treatments. I really would like to get media coverage, so if any of you have any connections in the mainstream media, please let me know. I have not had any success getting media attention, and I think this is a very news-worthy story.

Here is the copy of yesterday’s Pulmonary Functions Test:

IMG_0630

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