Waiting for Miracles

[pholifield]

Polycystic kidney disease has been in my family forever. My Grand father, Uncle Mother, all died from the disease. I have plenty of cysts and my GFR is still high but I am doing pretty good. One sister has had a transplant and is doing well. I have another sister who has been on hemodialysis for 8 years and I have watched the difficulties she continues to experience. I am amazed at how little the general public know about their kidneys and how important they are for survival.

We have come quite a way since I lost my mother in 1973. The miracles I have seen have been blessings to me. I am still waiting for miracles though, as my grandchildren already have been diagnosed with the disease.

[leeper]

my prays are with you and your family

[cs65 NKF Ambassador]

Hi, I also have polycystic kidney disease, as does my brother. He has already received a transplant 3 years ago and is generally doing well, despite a couple infections that landed him in the hospital. I started dialysis last October and it has been challenging. Currently I'm using emlen cream to numb my fistula before they put the needles in. That seems to help a lot! I was lucky to have 15 years since i found out I had PKD before I had to start dialysis. I'm also on the transplant list. You just have to take things a day at a time to get through it! Good luck to you and your family!

[mingmiley in reply to cs65]

Hi, cs65, glad to read your posts, I do my own needle and it avoided a lot of pains.i'm glad you're going to get a kidney.The last transplant i got it lasted 16 years, and then something happened, then i lost it. now I'm back on dialysis for the 8th years now.I don't want to get into second transplant because i will have to take prenisone (due to high antibody),that messed up my mental condition during my first transplant, besides they had me consented to less desirabled kidneys.not to say a nuclered meded heart test.........., those are the reasons I can't do a second transplant. but glad that you are ok to do it.Sorry for the wrong spelling, Best wishes.

[cs65 NKF Ambassador]

Dear mingmiley, thanks for your kind thoughts! Right now I am temporarily off the transplant list because I had a cardiac catheterization in Sept. after I had a mild heart attack and cardiomyopathy while I was having dialysis! I started cardiac rehab (exercises and education) last week and I will see my cardiologist next week. Hopefully he will ok me for the transplant list soon! Now my fistula is giving problems again - I had my 4th fistula gram in August and may need another one soon! I'm just taking everything one day at a time. You're very brave to put in your own needles! I couldn't do that, I don't even look when they put them in. Take care!