I'm not quite sure where to start with this one folks. My plan was to use my next post to into greater detail on the study i keep referring to. Explain how it was different from a traditional transplant, why I chose to go with this option instead of the traditional route, and what an unbelievable opportunity I have been given. After today that would be a waste of time. The phone call I never wanted to come came at around 1:40 today.
“Hey Kerry. Hey Ryan, do you have a few minutes to talk? i have an update.” Again, silly me for getting my hopes up. “its not the news we were hoping for. The committee looking into the study has decided to close it and not move forward with doing any more patients.” Seriously?? 2 years or putting my life on hold and 5 months of dialysis to get that news on what has been one of my best feeling weeks in a long time. I think that Kerry felt worse than I did at first. If she said sorry once she said it 10 times. She is only the messenger so I couldn’t get mad at her. One thing that she said that made me feel a little better was that everyone involved with the study at MGH was quite upset by this decision. Obviously no one wants to be told their idea or way of doing something was a failure, but also because they had a while list of candidates that were lined up to be in the next round of patients done.
My first, and obvious question was why? She said they deemed the fact that all the patients done had a spike in their creatnin (a level that measures kidney function) which in all the cases went back down with no serious side affects. To my understanding out of the 10 patients done in my grouping, 8 were a complete success, 1 had to go the traditional route, and 1 had a rejection episode but his levels have gone back down (so we will count that as only .5 as far as I am concerned). Traditional transplants have a success rate (success is marked by the patient keeping the kidney and not going into failure again) in the upper 90% range, and if my math is correct, the study had a success rate in the 80-85% range. yes that is lower than the traditional but I wouldn’t say it warrants shutting it down. i thought that were going to have to make changes to the way they did things to try to avoid that spike form happening. Needless to say, I was a little shocked and upset at the same time. After with talking with Kerry about where to go from here, the call was over and I now had the daunting task of calling those closest to me to break the news. Before I did that, I put the phone by my side and let out a loud FUUUUUUUDGE, Only I didn't say Fudge. I said THE word, the big one, the queen-mother of dirty words, the F-dash-dash-dash word, then I started my calls. As one one expect, I was answered with disbelief, frustration and questions. Questions of what’s next, what do you do now?
Hope is not lost to live drug free after the transplant (that was the big selling point of the study approach to not be on anti rejection drugs the rest of my life). A couple weeks ago I got a call from a Marian who does the same job as Kerry just with a different research group. She called because she plan to roll out a study protocol soon that would have the same outcome (drug free) but a different approach to get there than the other study. Everything on hers isn’t approved net so I am not sure of all the details of it, but I will update you all as soon as I know more. I am hoping that when they do get the green light that I will be able to cash in my 2 years of waiting to be placed at the top of the list.
There has only been 2 instances since i started looking at this hole process with positive eyes and chose to go the study route that I have struggled to stay positive. The first one was when I was told that i had to start dialysis and got admitted to the hospital to do so, and the other was today. As I mentioned, i have had a great week. It started with seeing both my sister and Lauren cross the finish line in their races on Sunday, then I came in lighter on Monday to dialysis than I usually do after a weekend. I played well at bball Tuesday night, had a great time with Lauren last night and it was sunny out while I was talking to Kerry this afternoon. Then all of a sudden, I got blindsided. With the help of Lauren (seriously if you haven’t met her yet, call me we will set something up) and my family I have started to find the good in this situation. Trust me, this has been the hardest situation to look at with positive eyes but that appears to be something I have been blessed with the ability to do and has become one of the foundations of this process for me. I would be remiss if I didn’t thank all of you for your continued support, so thank you.
I will end this post with a couple of quotes that have helped me today and on days that I feel down. They are both ones I haven’t talked about before and both come from my grandmother who taught me and all my other cousins quite a bit. the first one is everything happens for a reason, so there is a reason that the study i have been waiting for got shut down. The other one is god only selects those strong enough to handle adversity to deal with it. Two great quotes and words that really calm you down and help to look at a situation objectively when its not an outcome you want.
