I Would If I Could But I Can't

I re-did my second bedroom into a gym.  We have a bow flex and an elliptical in there, along with a Wii and some other exercise equipment.  I have an exercise ball, thera-bands, etc.  When I was in there doing that I cleaned the closet too.  While in the closet I found some paperwork on three research studies I was asked to participate in before I got the transplant.  The first one is the Ex-vivo Lung Perfusion study that I joined.   I explained this study in one of my pages if you are interested in what it is about.  The other two however I was never entered into.

The first one was to see if overall health can help identify suitability for lung transplantation.  This involved taking fat and muscle measurements throughout the body.  Every three to six months they wanted measurements like weight, height, hip size, waist size, grip strength and thickness of a fold of skin on the arm.  A short set of questions would be asked about life and health, a 15 foot walking test, a blood draw, muscle strength in the legs and a physical performance test to test balance, ability to stand and ability to get in and out of a chair.  During the first visit only they wanted a Dual Energy X-ray Absorptiometry (DXA) to measure total body fat, lean tissue mass and body bone density.  They would continue to do this for 10 years

The second one was to investigate the way the body responds to a lung transplant by measuring certain genes in the blood.  They are studying a complication called Primary Graft Dysfunction (PGD) that occurs after lung transplantation.  This is when the lung or lungs fill up with fluid.  It is believed that impaired function of the regulatory T cell plays a role in the development of this complication.  Even if the person does not get this complication it may help to assist in finding out why others do.  They wanted some blood at the next pre-transplant clinic visit.  On the day of transplant more blood will be taken before the lungs are transplanted and then immediately after the transplant operation occurs.  They draw more blood at the end of the day and then three days later.  Then they want another blood draw three months later and every three months thereafter.  They also wanted to collect BAL fluid from the lungs right after transplant and during the next two bronchs.  The BAL fluid is to measure proteins and other markers of inflammation and injury.  They also wanted the excess tissue that is trimmed away from the donor lungs.  If nothing is needed to be trimmed they want a small piece of lung trimmed out.  This is to examine proteins and genetic material (RNA) that might help them understand why complications occur after transplant.

I was very interested in becoming a part of both those studies.  Neither study was that invasive.  The invasive things the second study wanted were going to happen to me during transplant while I was knocked out anyway.  I wasn’t too sure about letting them trim my lung if it didn’t need it to be.  They were welcome to the excess if it was trimmed, but I did not want them to cut it if it was not necessary.  I was told I could still participate with the rest and not check that part of the study.  Sadly, I was not able to do either.  .   I was given the paperwork on my last visit to NYP before my transplant.  They told me to sign it and bring it back to my next appointment if I was interested.  I was interested and planning on joining however, I never came back for another pre-transplant clinic visit.  The next time I was in the hospital was the day I got the call.    

Reading these over gave me a feeling of regret.  I by no means wish I got the call later. I just wish they had given me the paperwork sooner so I could have participated.  I know there are plenty of others that have enrolled and I am only one more participant, but I am really big on research.  I understand the importance of it and I love to help in any way I can.  I have done many studies for CF and I do some research studies for UB.  In order for medicine to advance they need people willing to participate in studies like these.  I would have loved to be one of them.