For most of my adult life, I’ve been burdened with the knowledge that my kidneys would eventually fail. I was diagnosed at a young age with Polycystic Kidney Disease, a degenerative congenital condition passed from parent to child. On June 5th, 2010 I received a kidney transplant. It was both a blessing and a burden, as my life was suddenly changed. I was alive and my life would continue, but in the process, someone else had fallen. Along with the guilt of my survival in place of theirs, I was blindsided by feelings of remorse and fear.
Before the transplant, I was faced with extremely challenging decisions; such has how to explain to the love of my life that I might not live past 50, or how to tell my children that they were going to lose their father. I had to pursue fervently while I had the opportunity, because my expiration date was quickly approaching.
Around me the world was changing, and medical science was improving. Dialysis, the process of filtering the blood through a mechanical filter was available to most patients, and transplants were becoming a common, nearly routine, procedure. I found myself offered a chance to live my life as I chose, rather than one with the specter of an expiration date. I could begin to plan for my old age, and look forward to watching my children grow, and even to be given the opportunity to care for my grandchildren.
I’ve always been a person that prefers to live life with a plan. I believe that with proper planning, one can get through just about anything, including kidney failure. I set about researching what it was I needed to do, and I sought information from just about anyone I could. Kidney failure runs in my family, so I was fortunate enough to have many resources close at hand, my aunts, uncles, and even my father had dealt with this problem. Now that it was my turn, they were very willing to offer any assistance they could, and I took full advantage.
My father is 77 years old and in possession of a fully functional transplanted kidney. Sticking to his doctor’s orders, maintaining a healthy weight, and with no small amount of help from my mother, he is doing wonderfully. He credits her guidance and persistence with a lot of his success, and in fact, with Mom’s help, they’ve been married for 58 years, longer than he was expected to live! I know that by sticking to my plan and with the help of my family, I can look forward to doing just as well.
My life so far has been centered around preparing myself for receiving a kidney via transplant, and now that I’ve gotten it, making the most of this miraculous second chance. No longer am I bound to a chair for 5 hours while my blood was filtered. I am free to travel, spend time with my family, and live my life as I see fit.
It had been close to 2 years of dialysis and more than 3 years on the transplant waiting list that had passed, before a call came on a Thursday afternoon, my surgeon informing me that I was a backup patient to receive a new kidney. I had to make myself ready for their call to come in, though it did not come that day. Sad that I was not the recipient this time, though still excited to be at the top of the list, I went to work the next day. Much to my surprise, my phone rang again the next day at noon, my surgeon on the line and asking where I was. I informed him I had returned to work, only to be rebuked somewhat firmly.
“I told you to get ready, not go to work!”
The primary patient had an infection, and was not eligible. I found myself bound for the hospital that same hour, and while I was sad for the patient who had lost their spot, I was excited at the same time. I was on my way to get my new kidney!
The surgery was a success, and after a quick weekend recovery, I was well enough to enjoy lunch with my wife. The kidney was working well, and I felt better than I had in years! I soon went back to work, and resumed my work with The Road Back to Life. I was able to see to my hobbies, like drag racing nearly every weekend, and I felt as if I had boundless energy.
A year or so into the surgery, I was blindsided by a profound depression that had settled over me. I had come to think of my new kidney as a magical object, the key to a wonderful new life, the cure to all of my ills. I would do amazing things, go to faraway places, so many things I wanted to do with my second life. But then, I realized with some degree of shock, that I was no different than before, still working and living my days out, not achieving all those magical goals my mind had conjured up. The team who had brought me through in my first year had to move on to new patients, and after a meeting with my nephrologist and a handshake, I was kicked out the door into a brave new world. My social worker, my dietitian, and even my kidney doctor were no longer available- I was suddenly on my own and bereft of their support. I almost cried.
What happened to me must happen to each patient, eventually. Like a child from the nest, I had to live on my own, and they, after finishing the course of treatment had to move on to help other people. I had to live on my own, and use the tools they gave me to make the right decisions and live my life, though at the time I was in no way prepared for the sense of loss. I sought input from my transplant team, who reminded me that I was not alone; social workers, dieticians, and my fellow patients all still remained to help me learn to live my Life After Transplant.
With time, I came to realize that I had been being selfish, thinking that after all of this it was about ‘Me’ and ‘My’ life. While I was not doing all the things I had fantasized about, traveling about the world, achieving monumental tasks, I was able to LIVE my life once more. My wife and family had their father still, and I have been able to watch my lovely grand-children grow and prosper. I am once-more in the workplace, providing for myself and enabling me to help other people. With the support of my community of patients I was able to cope with my losses and grow into my new life and truly appreciate the gift I’ve been given.
I took it upon myself to ask other transplant patients about the feelings they’ve experienced, and learned that it is a very common event. By the end of their first year after receiving their new kidney, most folks begin to experience some form of nagging doubt, whether it be a sense of disconnection and loss after the end of the treatment, or the guilt of receiving an organ at the cost of another’s’ life. I learned that, most importantly of all, I was not alone.
I believe that we as patients are each other’s best resource, able to communicate and commiserate, sharing ones feelings with someone who understands all too well. Sharing our experiences, gained knowledge and confronting our fears together is what keeps transplant patients survivors. I even find that even after 6 or more years of living with my kidney, I still have questions that can only be answered by talking to my more experienced peers.
There will always be a need for information and a community after your operation, which is exactly what the Road Back to Life provides. All we need to be that community is you! If you need a community to be a part of, or if you feel you have something to contribute to your fellow patients, let us know! With your help, we can be a source of information and encouragement for patients and their loved ones when they need it the most.