Tony's Double Lung Transplant

Postby TonyinDallas » Thu Nov 01, 2012 9:36 pm

I received the gift of life (single lung) Feb 10, 2001. God Bless you Phillip for my life.
My FEV1 was down to 9% when I got the call. Had two false alarms in the 2 years I waited for a donor. Initally I was scheduled for a double but my lung function got bad enough they put me on both the double and single lists.
I stayed very active even with no lung function. I worked full time servicing Pyxis equipment in hospitals carrying my oxygen and tools. At that time my FEV1 was 17%. After my transpalnt doc saw me one day working at my transplant center my saturation had dropped to 72% and he made me quit working. For the next year I exercised at home. I bought a treadmill, bowflex, exercise bike and free weights and I worked out every day.
Joined every site that had to do anything with lung disease and lung transplants and read everything I could. 
My transplant was pretty rough. My new lung was not getting a good blood supply due to a twisted artery and I was intubated for 14 days waiting for it to straighten out. My worst time was when they first took me off the tube. My body was used to a machine breathing for me for that long that I struggled a lot to breathe for a number of days.
Was in ICU for 31 days and 10 in stepdown. When I got home, I got better quick.
I had wasted away to 158#. I am 6' tall and can carry 200# easily. I was skin and bones.
My wife was working full time so my mom and dad came to stay for two weeks while I went to rehab.
Mom's cooking put the weight back on fast and I forgot to stop and got up to 282 which was not good at all.
I had 3 MSV infections back to back and that had dropped my lung function back down to where I was back on supplemental oxygen in 2008. A pancreatitis (sp) that really set me back. 
I was back down to 25% FEV1 and on 4 1/2 lpm 24/7 with bipap at night.
I had been reading about stem cells for a couple of years and was quite astounded by what I was reading.
I made a decision on my own to get stem cells. I had no where else to look. I was not a candidate for retransplant and there was nothing my transplant team could do.
In July of 2008 I got 5 million progenitor/mesenchymal stem cells taken from donated umbilical cord blood.
Nothing happened. In March of 2009 I got 12 million cells
By Dec of 2009 my FEV1 had increase by 12% and I was off supplemental oxygen and have been since.
I did have to go out of the country to a private hospital to get the stem cells and insurance does not pay since they have not been approved by the FDA for lung problems.
I just turned 65 and am looking forward to another 20 years. Maybe more.
I am back down to a comfortable weight of 182 and I do work out 5 to 6 days a week and still work full time doing tech support from home for the same company.
I take prograf, cellcept, prednisone, methotrexate, valcyte, digoxin, diltiazem, furosemide, cloidine, fosomax, multiple vitamins and some other stuff.