My friend Jeff has type 1 diabetes. I've learned that sometimes diabetes takes your eyes or your limbs but in his case it took his kidneys. In 1997 he had a kidney transplant from his oldest sister, which lasted 2 years and rejected. Again in 1999, he received a donated kidney from his youngest sister. When we married in 2003 his kidney was still functioning well and he was leading a pretty normal life. Before we met, his doctor at Vanderbilt Medical Center convinced him to go on a pancreas transplant waiting list. Jeff and I had been married for 2 weeks when he got a phone call from Vanderbilt. We were cooking breakfast on a Sunday morning when his cell phone started ringing. I could tell by his tone that it was an important call but I never dreamed it was his doctor calling to say they had a pancreas waiting for him. He told me if I didn't want him to do it that he wouldn't. Until that statement, I was considering telling him I'd rather he didn't have the procedure done. But something clicked, and I immediately said "are you crazy, you've been waiting for this before you met me and I'm not going to stand in your way". Besides, at the time he was only 40 years old and deserved this chance that could be life changing. We were on a strict time frame so we threw a few things in a duffle bag and headed to Nashville (driving over 90mph I might ad)! The operation was a success and all of the sudden Jeff was no longer a diabetic. No more insulin, no more insulin reactions, no more meter, etc. It was the best 3 years of our lives.
One day he felt funny, checked his glucose level and it was very high. We left to see the doctor immediately, fearing that his pancreas was rejecting. The doctor ran a series of tests and his pancreas was rejecting. He was in the hospital for several days. They tried a number of different medicines some of them made him very sick. The only way to explain it would be to multiply any flu that you've had times 10. It was awful to watch him go through the sickness. None of the anti rejection meds worked and once again he was a diabetic. It took us a while to adjust back to the diabetes lifestyle but we managed. At the end of 2007, Jeff started having trouble breathing one night. I took him to the emergency room and they ran a lot of different tests. We then found out he had congestive heart failure and his kidney was shutting down. This was very hard to hear.
The cardiologist could not operate because the diabetes had caused too much damage to his heart and the loss of kidney function meant dialysis. We went to a heart doctor in Lexington for a 2nd opinion, hoping for the best, but he told us the same thing. Jeff went on dialysis and started declining from then on. We spent what seemed like hundreds of nights at the hospital for his congestive heart failure symptoms and then he started getting pneumonia on a regular basis. Honestly, there was little hope left when the doctor told us he was in end stage heart failure.
I decided that I was not giving up. I started researching heart failure online and came across a site that was talking about stem cells for the heart. My first thought was I bet this is a bunch of bull but went ahead and continued researching it. They were using stem cells from the patients own blood not embryonic. There were actually trials going on here in the states for this exact thing. I contacted all of the participating healthcare centers but nobody would take him in because he had diabetes. Jeff and I talked about it in length and decided to contact Dr. Zannos Grekos who was the one I had originally found when I first started researching. He was located in Florida, so that made us feel a bit better too. I sent all of his medical records there and the doctor contacted us and said he'd be willing to take his case. We finally had some hope again but the money was a big issue. The stem cell procedure was going to cost $64,500 and that wasn't counting any of the travel expenses. We got a loan against the house, his family helped and the church took up donations. We had the money and the hope of a better life. In May of this year (2009) we flew to Florida.
Jeff was very very weak and I honestly didn't know if he'd make the trip but we had to try. We arrived in Florida and the doctor admitted him into the hospital. After about a week, he had him feeling a bit better and ready for the blood drawl that had to be done for the stem cell procedure. The blood was taken in Florida and it took one week to get it back. The procedure itself cannot be done in the US because it is not FDA approved, so we had to fly to the Dominican Republic for the stem cell implantation. After three days in the Dominican we were back home in Kentucky. It takes 6-9 months for the stem cells to work. He's had his 3 month follow-up tests and his heart has improved some.
We are anxiously waiting to see if the stem cells will improve his heart enough for him to qualify for a kidney transplant and get off of dialysis. The dialysis is taking a toll on his heart but they will not put him on a heart transplant list due to his diabetes and they won't put him on a kidney transplant list due to his poor heart function, so this is our only shot!
My final thoughts: For those of you out there with type 1 or type 2 diabetes or who may be at risk, please take care of yourselves. Get checked and do what the doctors tell you to do. Unfortunately, there will come a time in the life of most diabetics where they will be faced with life or death decisions. My husband would be the first to tell you that he wished he had taken better care of himself and managed his diabetes more carefully. There is helpful information at http://www.LifeOrDeathWithDiabetes.com
One day he felt funny, checked his glucose level and it was very high. We left to see the doctor immediately, fearing that his pancreas was rejecting. The doctor ran a series of tests and his pancreas was rejecting. He was in the hospital for several days. They tried a number of different medicines some of them made him very sick. The only way to explain it would be to multiply any flu that you've had times 10. It was awful to watch him go through the sickness. None of the anti rejection meds worked and once again he was a diabetic. It took us a while to adjust back to the diabetes lifestyle but we managed. At the end of 2007, Jeff started having trouble breathing one night. I took him to the emergency room and they ran a lot of different tests. We then found out he had congestive heart failure and his kidney was shutting down. This was very hard to hear.
The cardiologist could not operate because the diabetes had caused too much damage to his heart and the loss of kidney function meant dialysis. We went to a heart doctor in Lexington for a 2nd opinion, hoping for the best, but he told us the same thing. Jeff went on dialysis and started declining from then on. We spent what seemed like hundreds of nights at the hospital for his congestive heart failure symptoms and then he started getting pneumonia on a regular basis. Honestly, there was little hope left when the doctor told us he was in end stage heart failure.
I decided that I was not giving up. I started researching heart failure online and came across a site that was talking about stem cells for the heart. My first thought was I bet this is a bunch of bull but went ahead and continued researching it. They were using stem cells from the patients own blood not embryonic. There were actually trials going on here in the states for this exact thing. I contacted all of the participating healthcare centers but nobody would take him in because he had diabetes. Jeff and I talked about it in length and decided to contact Dr. Zannos Grekos who was the one I had originally found when I first started researching. He was located in Florida, so that made us feel a bit better too. I sent all of his medical records there and the doctor contacted us and said he'd be willing to take his case. We finally had some hope again but the money was a big issue. The stem cell procedure was going to cost $64,500 and that wasn't counting any of the travel expenses. We got a loan against the house, his family helped and the church took up donations. We had the money and the hope of a better life. In May of this year (2009) we flew to Florida.
Jeff was very very weak and I honestly didn't know if he'd make the trip but we had to try. We arrived in Florida and the doctor admitted him into the hospital. After about a week, he had him feeling a bit better and ready for the blood drawl that had to be done for the stem cell procedure. The blood was taken in Florida and it took one week to get it back. The procedure itself cannot be done in the US because it is not FDA approved, so we had to fly to the Dominican Republic for the stem cell implantation. After three days in the Dominican we were back home in Kentucky. It takes 6-9 months for the stem cells to work. He's had his 3 month follow-up tests and his heart has improved some.
We are anxiously waiting to see if the stem cells will improve his heart enough for him to qualify for a kidney transplant and get off of dialysis. The dialysis is taking a toll on his heart but they will not put him on a heart transplant list due to his diabetes and they won't put him on a kidney transplant list due to his poor heart function, so this is our only shot!
My final thoughts: For those of you out there with type 1 or type 2 diabetes or who may be at risk, please take care of yourselves. Get checked and do what the doctors tell you to do. Unfortunately, there will come a time in the life of most diabetics where they will be faced with life or death decisions. My husband would be the first to tell you that he wished he had taken better care of himself and managed his diabetes more carefully. There is helpful information at http://www.LifeOrDeathWithDiabetes.com
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