Hello everyone!
Is it normal to feel anxious, stressed and just freaked out when you've been told you have a living donor kidney coming to you? I am stage 4 and have never done dialysis. Creatinine averages 3.50, GFR averages 18. My concerns are for the quality of life and the side effects of the medications. Right now I am active, but tire easily. I know preemptive is the way to go, but then I ask myself "do I have more time?".
Make yourself a list of the pros and cons on paper but keep in mind you are very fortunate to have a living donor. Yes the medication can cause a disruption in your lifestyle but dialysis can be more disruptive and it can also require medication. If the clinic has a recommended therapist share your concerns before deciding but keep in mind that the living donor probably is giving this gift to save the life of another.
Look into all your options and the potential side effects of each. Transplant is the way to go. If that isn’t an option then look into PD and the pros and cons of it. Lastly dialysis look at its pros and cons, especially what you can eat and do. Good luck and God bless you.
I was in about your place when I got my living donor transplant 2.5: years ago. Creatine over 4, GFR near 15. I tired easily and had brain fog. My biggest stress was asking for someone to be a donor; it's not like borrowing a cup of sugar. I was more ok with the idea of the operation and lifelong meds. I was already doing other lifelong meds. Docs had a list of reasons to prefer a living donor kidney. 1. The transplant lasts longer, statistically. 2. The new kidney gets to work right away. Certainly was true in my case. 3. Living donor kidneys seem to require a lower level of antirejection meds. 4. You get the transplant without the long wait on the transplant list. The median wait time for me at my transplant center would have been three years.
I ended up asking at my church, because they have demonstrated the kind of generosity needed to donate a kidney. Made them all cry when I asked. Made them all cry again when the pastor became my donor and was a match. I guess it was meant to be. I have become a church project, and they have amazing.
Transplant went super. I have PKD, and stuff that had been screwed up for 20 years was better in 4 days. Normal blood pressure, normal creatinine, no more puffy ankles, brain fog cleared up. Simply amazing. Meds have been ok. A little hair loss and minor hand shaking. The med levels get decreased as you get further into the transplant.
My transplant has been such a blessing. Covid-19 has made things tough, but I am doing well. I hope the same for you.
Thank you so much for your reply. I spoke to one of the surgeons and he put me more at ease. I’m working on positive thoughts instead of getting in my head and worrying about all the things to come after.
Understand your concerns. My creatinine was 11.34 prior to scheduled 3/2/20 surgery. Unfortunately covid19 shut down all surgeries at my hospital on 3/1/20. Talk about anxiety! I could not be given a new date until the world tried to understand what was going on. I immediately went on dialysis...more anxiety! My surgery was done on 6/2/20 the first day the hospital opened up for non elective surgery. It was a hell of a ride..... Today my creatinine 1.18 and holding steady. My BP is a solid 120/80, and all my blood work numbers are in the normal range. My energy level is the best it has been years. I walk 2 miles a day, 6 days a week and feel great. Just concentrate on feeling much better after the surgery, and that a kidney transplant is the most successful transplant. I’m now a very healthy 67 years young. 😊
What an inspirational story! So glad for you. So good for you to motivate others to know life can get so much better!
Lol, me too, nearly 9 years ago and I'm nearly 76👩🦯👩🎨
I have PKD and received a kidney from my brother in July. I never had to go on dialysis but my creatinine level and GFR had me clearly meeting criteria for kidney failure. I was apprehensive about the transplant surgery and medication regimen, at first. But when I weighed a lifetime of dialysis and medication, forever, vs. live donor transplant and medications, researched the risks and benefits of each, transplant was the clear winner, for me. I am 55 days post transplant and couldn’t be happier with my decision. I feel great. Energy level is back, I can eat what I want (mostly), brain fog is gone. I am getting my life back. Understand, my life is not perfect. I have developed a donor specific antibody to my new kidney. Low level and not a threat, but something to be watched. I have labs drawn weekly. I take BP, weight, temp. readings daily and am vigilant about self care, keeping my lab and follow up appointments religiously. Transplant requires a commitment to medication adherence and doing your own research so you know what to expect.
I cannot emphasize enough how being informed about the risks and benefits of transplant vs. lifetime dialysis is the best way to calm your nerves. I spent many hours doing my own research and closely questioning my transplant team. I am prepared to accept whatever risks transplant throws at me because at 62, I can’t see myself on dialysis the remainder of my life. I know I made the right choice for myself.
It’s different for everyone. Being as informed as possible will help you feel confident about your decision and prepare you to handle whatever your reality becomes as you go forward. It worked for me and I am happy I chose transplant. Best of luck to you!
I got my living kidney transplant early 2013 at age 68, never dialysis, kidneys destroyed by chemo at age 35. I have always been very proactive in following docs orders and working on my own to self educate for best chance of survival against awful odds. I also stayed off dialysis, veins ruined by harsh chemo, my full torso radiation treatments broke records at Stanford University Medical Center. Don't even think of hesitating, You are young! Perfectly fine age for long life with forever kidney! I have the labs of 25 yrs younger, you too should honor the gift! A preemptive living transplant is only way. Dialysis is life support, a nightmare for most people. You don't know yet, but after a year you'll be a new you🤔❣💃
I received a living donor kidney (from spouse) three years ago. We are both doing great. The medications and side effects are a “normal” part of my life. It is understandable that you are nervous and are weighing your options. For me, I didn’t even contemplate whether I should go through the transplant - it was the only option I considered. You will make the right decision for you!
I am in a very similar situation and have the same concerns. My last GFR was 17, creatinine is stubbornly 4.2. Never had dialysis. I am still waiting to get the go ahead for a kidney transplant. My wife had graciously offered to donate and is a match but still going through some tests. It looks like she will be my living donor. I feel the same as you describe, I'm 52 and am active. But, I tire easily and feel as though I have some brain fog. I am very nervous and scared about the prospect of the surgery and the lifelong meds. Thanks to everyone for sharing their experiences, it helps me put things into perspective.
I am curious about what decision you made. Did you get transplanted ? I am in a similar situatiin with similar doubts.
I got the transplant. It will be a year on October 26th.
My transplant team at the hospital has declined to list me for the time being. They found a partial blockage in a coronary artery. The partial blockage has not had any effects on me or my activity level. But, until that is addressed, I won't be listed. All of my tests have thus far stayed stable and still no dialysis. The plan is now, to keep things as they are until dialysis is needed. Then to take care of the heart issue and see how things proceed from there.
I wish all the best to you.
Be grateful you have a living donor and have dodged dialysis!! It is hard to find someone who is willing to lose an organ to save someone else's life. You are very fortunate. To your question, I think it is normal. If you cant shake it, try to speak to a professional. There is definitely a mental health aspect to the process and your transplant team should have spoken to you about that as well. Best to you!!
so, I am curious about what decision you made. Did you get transplanted ? I am in the dame situation now.
How do you get ESRD Medicare if you get a preemptive kidney transplant (before dialysis has begun).
The whole finding a living donor process is a JOKE!!!
2 months Post Transplant in 2days
Long Life with Transplant
