The other half of Just Jules shares his transplant experience
Julie from Just Jules
Last week, I asked Marty to write a post about his transplant experience and this is what he wrote;
So, there I am one day minding my own business, (Famous last words, Right?) sitting on the couch sipping iced tea blissfully listening to Julie type away on her laptop. Very common in our house except for the fact on this day Julie stops typing and says to me, “Why don’t you write a guest blog for me about your thoughts on your transplant and your donor?” My immediate response, “What is there to say, that you haven’t already mentioned?” I thought about it for a moment and realized everything Julie has written about our journey is from her perspective. Maybe, some of you would like to hear from me? Well, here goes…..
Let me start by sharing a few thoughts about dialysis. For me, renal failure and having to go on dialysis was and still is a lesson in humility. I quickly went from being “The Man” of the house to solely relying on my faith, Julie, my kids and close friends. Dialysis whether it be hemo or peritoneal, quickly drains the strength out of you, both physically and mentally. If you are reading this and know someone who is on dialysis give them encouragement and be strong for them when they are having a difficult day. Having a beautiful wife, family and friends like these are part of what saved my life.
Right now the average wait time for a person in need of a kidney transplant in California is seven years, I waited three. Originally I was told I would only have to wait about a year for transplant due to the fact I was receiving a K/P (Kidney and Pancreas) transplant. Well those of you who have kept up with Julie’s blog know that one year turned into three.
In the middle of my wait time life sort of became mundane for me and my family. Day in and day out, not able to take a vacation or travel since I had to do a dialysis treatment every 2-3 hours. I spent the first two years on dialysis working, remaining on duty at my job. I did this not because I had too but because I needed to keep myself busy instead of feeling sorry for myself. I did not tell anyone I was sick until right before I went out on medical leave three months before the transplant surgery. I did not want anyone feeling sorry for me . If I wasn’t’ going to feel sorry for myself I wouldn’t allow anyone else to. I guess part of why I worked is so the kids wouldn’t have to see me at home sick all the time, at least that’s what I told myself. Conner and Elizabeth were smarter than that though, they knew how I was feeling and felt just as desperate for the transplant call to come as much as Julie and I. It was only towards the end of my wait time when things started getting really bad for me health wise that I became a whirlwind of emotions. Not physically able to work for the last three months of my time on the wait list, I spent my days being tired, worn out, scared and even angry at what was happening in my life. I felt like a prisoner of this disease always on a leash to dialysis treatments. The once reassuring words from the nurses at the dialysis clinic telling me the “Call” would come and that it would be, “Out of the blue” started becoming cliché.
On January 11, 2011, I got the call we had been waiting for, the call that would change my life and wouldn’t you know it; it was out of the blue! All the planning and preparations made by Julie and I flew out the window as we barely had enough time to find friends to watch Conner and Elizabeth before rushing off to Stanford. That evening was spent. On January 12, 2011, after a 9 hour surgery I no longer needed dialysis or insulin injections to live.
I have been asked before what it was like to finally get the call for transplant. The best way for me to describe it is like being a young child going on a roller coaster or thrill ride for the first time. You spend hours waiting in line filled with anticipation and excitement, until it’s actually your turn to get on the ride. It’s at that point, nerves, fear and butterfly’s set in. It wasn’t until they were actually rolling me back to the operating room before I was convinced the transplant was actually going to happen.
After a week in the hospital I was released to go stay at the apartments subsidized by Stanford for extended stay patients. The first day out of the hospital Julie and I ventured to the grocery store to buy food and staples for the apartment. Julie had the grocery cart filling it with meat, vegetables and other wise “healthy” food. While I on the other hand followed in my electric cart filling the attached basket with ice cream, cookies and other sweet morsels of delight. After being Type 1 diabetic for 25+ years, I was literally a kid in a candy store.
A quick side note about the electric carts. I give props to those who depend on those things for mobility. During the first few days out of the hospital I had a chance to test drive a few in a couple different stores. Getting in and out of aisles or racks of clothing is tough in those carts. Let’s just say there is a store with a “Target” as their logo in the bay area that is now short several displays because of an unknown hit and run driver with road rage.
The only other interesting story I have about the transplant process is the Saga of the Catheter and the Stint: What goes in, must come out, but that’s a blog for another time.
This is the hard part about writing this blog, putting into words the bitter sweet joy I have living a renewed life. There is not one day that goes by where I don’t stop to ponder the enormous sacrifice made by a complete stranger and their family. To give me the opportunity to see my kids grow up and see my grandkids being born.
Julie and I have always felt during my time waiting for transplant that when the call came it would be God ordained. We constantly prayed for the person who would become my donor to have a personal relationship with Jesus and that we would some day meet in heaven. I have to admit that during the last few months waiting for transplant I found my self asking God in prayer, “Why me, why have you made this so hard and the wait so long?” I was soon reminded that God is control, I am not and if I was I would screw it all up.
During my time in waiting I have always just assumed the donor would be someone my age if not older. The night before the surgery while the doctors were running their final tests and getting me ready for transplant, Julie and I had the chance to ask Dr. G if there was anything she could tell us about the donor? After a pause to think about the question, she very cautiously said the donor was 18 years old. Julie and I suddenly realized the gravity of what she just told us. When I was questioning God about having to wait way to long ,and why me, why so long actually meant three precious years for a parent to enjoy watching their child grow up. At that moment I thanked God for his timing and his sovereignty.
When I started the whole transplant process Julie and I have always had the intention of meeting the donor family. We were quickly made aware that the sharing of information has to be mutual between donor family and recipient. Julie and I wanted to wait one year after surgery to contact the transplant coordinator expressing our interest in meeting the family of the donor. We wanted in order to let the donor’s family grieve over the holidays spent without their loved one.
It is my hope that some day soon we will celebrate with the donor family the blessing of a gift of love, a life lived and a life living.
So I suppose that’s about it. I can’t think of a better ending to this blog than the last sentence…..Marty
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