Introducing Myself :)

[JoEllenLentz]

Hi! I'm a 63 year old woman with my second kidney transplant. I found out I inherited polycystic kidney disease 20 years ago and received my first transplant a couple years later. That transplant eventually failed and I was on dialysis 5-1/2 years before I received this transplant 5 years ago. It's working well and I'm so thankful every day!

[ScoobyDoo910]

I'm so glad to hear you are doing so well that's great. Makes me feel good knowing that people do well with a second transplant. As my son will eventually need one again. My son was born with pkd. Transplant done at age 3yrs old now 16yrs old . Does have stage3 right now. I hope next time his transplant they will do bone marrow transplant to and won't put a kidney in him with kidney stones or cyst pockets allready. But even with all those problems we just keep fighting and deal with what comes. You are an incredible person 5 and half years dialysis wow. Take care you.

[JoEllenLentz in reply to ScoobyDoo910]

Thank you so much! I have type O+ blood and had high antibodies because of the first transplant. I was put back on the waiting list when kidney transplant function was at 20%. Ended up on 2 waiting lists and was eventually accepted into a desensitization program to eliminate antibodies. It worked, and then I had my new transplant in less than a year! If your son has antibodies, keep that in mind. The dialysis was very hard, but I was just very careful with fluids and my dialysis diet and did everything I was told. Each of my transplants came with a small kidney stone, which never caused problems. I think at some point after waiting, you just take what you can get. If it's from a live donor, then the donor keeps the best kidney. Keep fighting, stay strong. Things can get better. Wishing your son better, healthier times ahead.

[ScoobyDoo910 in reply to JoEllenLentz]

Now every 4months he does treatments of ivig to keep the antibodys low. I'm hugely greatful for how many years with this kidney so far and even though the kidney stones continue to get larger one is 8mm in size now. He keeps fighting and we do your best to keep kidney function. I'm am beyond words 12yrs now and counting. Not without ups and downs though like soo many. But ever once in a while it's nice to hear goods things on this site. Take care you and we shall talk again.

[patmcm129 in reply to ScoobyDoo910]

Did the donor have PKD?

[ScoobyDoo910]

No as far as I know he did not but that being said does run in on his side of the family and at this stage of what the kidney looks like it looks like pkd in the transplanted kidney. I was going to donate but since I have type 1 diabetes they wouldn't even consider me no matter how much I pleaded with them. It doesn't run in my family nor does diabetes as we all know diabetes isn't inherited. That being said though the nephrologist did NOt notify me of the cyst or the kidney stones until 2 yrs after transplant when I saw on ultrasound somethings that didn't seem right and asked. Let me know if you have any other questions. Thanks I'll try to help in anyway from my experiences.