I didn’t have time to prepare and worry about my kidney transplant. Things happened quickly and my focus was surviving each individual day. My cysts would not stop bleeding and my football-sized kidneys had to be removed. I was too sick to be placed on the transplant waiting list. I was on daily dialysis and needed a kidney to survive. I don’t know if it was because I was 19 years old, but I did not fear the transplant or what life would be like post-transplant. I knew it needed to happen to extend my life and I was going to do what had to be done. It was that simple.
I think when one slowly watches their kidney function diminish, they have time to prepare, worry and stress about what life will be like post-transplant. This can be good and bad. It is good to become knowledgeable in order to take the best care of yourself post-transplant, but don’t let the questions and worries consume you. Enjoy your healthy days now and look forward to even healthier days to come.
I have a friend who is working toward, whether she realizes it or not, being the most prepared pre-transplant patient I have met. Here are some of the questions she has asked me:
- Besides being careful with germs/sanitation post-transplant, especially the first 6 months, when do you accept your kidney as a part of you?
- When is it normal to feel it’s just another great day and it’s not about fear of kidney rejection?
- When do we feel confident we can eat out at a restaurant and not die?
- Get on an airplane and not ruin our kidney?
- Assuming one does well with a transplant, do you remember anything about the first year or were you too young to really question everything?
- If I receive the gift of life, will I find my carefree self back?
These are honest and valid thoughts/questions. I accepted my kidney as part of me the moment I opened my eyes post-transplant and felt the best I had felt in a long time. Once I got used to my medicine regimen and was a few months along and able to be around more people, I believe things started to feel more ‘normal.’ Every day feels like a great day. I don’t fear rejection as much, knowing that I take my medicine on time and do all I can to take the best care of myself. I think it was six or so months until I ate out. I am very cautious with germs while traveling and never feel like it will ‘ruin my kidney.’ I remember the first year. It was learning about all of my medicines, staying away from large crowds, protecting myself as much as possible and being oh-so grateful for the gift of life and the opportunity to get back to living. Receiving my transplant led me to learning who I am and what I am capable of as a woman. There should be no reason that you lose the part of you that you love along this journey. Don’t lose sight of who you are. Receiving a transplant won’t change who you are at the core, it will give you a better quality of life to be the best you as possible.
After people learn that I received a kidney transplant, they say, “So you’re good now.” Yes, we are good, but a transplant comes with a lot of responsibility and it is not a cure. However, we all know it is better than the alternative. Like everything in life, it is a balancing act. We learn as we go. It saddens me when I hear people who are afraid they will not be able to do things that they love after receiving a kidney. Rather, it will give you a better quality of life and you should be able to do everything that you love. Yes, there are a lot of unknowns. You will have to take pills to prevent your body from rejecting the kidney, however it is way better than dialysis. We have a whole other set of issues with the meds we take and the possible long-term effects, but none of us can predict our future. We all need to enjoy this beautiful day we have been given, and keep our balance.
|How do you balance the unknowns along your PKD journey?