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.
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How do you balance the unknowns along your PKD journey? |
Very well said. We do not know our future just like everyone else. We can only take it a day at a time and and work with what we have to make it a good one.
Thank you Jennie!
I completely agree with your sentiments!!! 🙂
I love the way you write. You always focus in on what matters most. Keep inspiring others in that wonderful way of yours. 🙂
Thank you so much for your sweet and supportive words of encouragement, Yvonne. Hugs!
Thank you for sharing your inspiring words. I am currently on the transplant waiting list…8 months in with a possibility of a 5 yr wait. Yes there are TONS of questions, but I can’t stress on that now. Focusing on taking care of myself in the meantime!
I hope your wait time is short and you are very smart to make your focus on taking care of yourself. One day at a time my friend!
Trina,
i have been waiting for almost 5 years. I do take one day at a time, sometimes even a half day at a time.
I try to enjoy each day as much as I can.
To help keep me busy, I have immersed myself and have become very actively involved in different kidney patient groups, i mentor others, I speak to soon to be dialysis patients, i’m actively involved with my women’s ministry at my church, I work part time, and still try to socialize with friends.
I encourage you to look into your area’s network. Mines called Heartland Kidney Network and we have a newsletter that features a page called Talk Transplant. HKN is an excellent resource!
Thank you for sharing such wonderful advice, Carmen. I could relate to your second sentence …”even a half day at a time.” So true!
Your words give me comfort. I have been taking care of my liver transplant (12 years ago) and now taking care of myself and waiting list for a kidney. Good attitude and keeping a balance in life.
That makes me happy to hear!
Congratulations on 12 years with your liver and here’s hoping you receive a kidney real soon! Keep that positive spirit of yours. Wishing you the best!
Valen,
I have followed your blog for some time as well as read your book. I have continued to display a positive attitude, although I am saddened at times about my PKD and its inevitable progress, with no cure.
I am now participating in the Tolvaptan study and am more than hopeful that this drug will be approved in the USA soon. I am both honored and excited to be able to participate in a possible “cure” that will benefit others, myself, my children, and my grandchildren. Keep up the inspiration. It means so much to me!
Thank you for following my blog and for reading my biography.
Your emotions are completely understandable and it is good for us to express those sentiments and then focus right back to our positive spirit. 🙂
Thank you for participating in the Tolvaptan study. I am sure it is exciting to be a part of something so huge and I look forward to the day that a treatment is released in the U.S.
Thank you for your kind words and support, which mean so much to me! Wishing you all the best! Hugs!
I always enjoy reading your blog, Valen. I am 8 weeks post transplant, and am currently still in the “getting used to everything” phase. My younger sister donated one of her kidneys to me, so I will do everything I can to honor that gift. I am still learning about all the lifestyle changes, but each day they become more natural. It’s been rather amazing to me that I never really thought about how much I exposed myself to germs every single day. I sometimes think to myself: “That’s gross; I can’t believe I used to do that.”
Please continue sharing your thoughts and experiences. It means a lot to those of us just starting to go through some of those same things.
Take care!
Hi Catherine,
Congratulations on being 8 weeks post-transplant. Yay! A big thank you to your younger sister for giving you a second chance. I am thankful to hear that you are doing well during this adjustment phase and keeping a positive attitude with the desire to honor the gift you have been given.
Thank you very much for reading my blog, for your support and encouragement to keep writing. Wishing you all the very best with your transplant. Hugs!