Polycystic kidney disease - Kidney Disorders Message Board

fief · 06-18-2003, 04:13 AM

I am 30 years old and was diagnosed when I was 19 with high blood pressure and polycystic kidney disease. This is a heritary disease passed down. My Mother and Grandmother both had this. I have seen my grandmother do home dialysis before she died. My mother has done both hemo dialysis and home dialysis. (CAPD and CCPD)Since, she has had 2 kidney transplants, and her last one is starting to fail again. I struggle with the thought of following them in health. Although it is heritary, I opted to have children on my own and can only pray that they don't get it also. I have no questions about this disease right now but thought that if someone else reads they might be in my same situation. I have pains in my kidney's so bad sometimes it takes my breath away. But I pray everyday that my kidneys do not lose their function. I have seen the wear and tear of dialysis and do not want to go through this. I wouldn't mind talking to someone that is in the same situation as me. Living with kidney disease. Sometimes it just helps to have a friend.

Harry · 06-18-2003, 08:00 AM

Sorry about your problems

I just found out in the last several months that I am passing protein in my urine. I don't have anything that I know of like diabetes, lupus, poly cystic disease, high B/P or any immune sytem problems that I know of.
It took me over a month to get an appointment with a Kidney Doctor. But, during that time I have been doing alot of reading about kidney diseases and problems. Now I'm being tested.

I do have problems with my adrenal glands. A problem that causes me to lose potassium ---alot more than normal.

The supplements that I have read about to improve kidney function are:

L-Arginine ---500 mgms 4 times daily for kidney disease and L-methionine on an empty stomach to improve kidney circulation ---both are amino acids.

Probiotic supplement if taking antiobiotics.

Vitamin C---2000 mgms, B-6, choline and Insoitol(IP-6) for acifing your urine, healing and reduce fluid retention.

Vitamin A ---25,000 IUs daily, multi mineral complex, including calcium and magnesium. Vitamins B-50, E---800 IUs, Zinc and copper to promote immune functions and healing.

As you know Doctors want to treat you with Drugs and no one mentions what a person with your problems should eat and the vitamins, minerals and supplements you should be taking???

I wish you well---Harry

MaryAnn · 06-20-2003, 04:46 PM

I also have polycystic kidneys. My dad had a transplant and died from complications. My brother also has PKD. We both have good kidney function. He is 50, I am 41. I also have children and hope that if they have this disease and ever have problems, there will have been medical advances. Other then high blood pressure, I have been symptom free. I wish you the best!

bellsa · 07-16-2003, 04:49 PM

Hello to all,

I am a 43 year old male and I suffered from end stage renal disease due to polycystic kidneys. I spent 2 years on hemo-dialysis. I just received a cadaveric kidney transplant this past September. It is important to see a nephrologist regularly so that he can help keep your kidneys functioning as long as possible. Dialysis was an inconvenience for sure but I never missed a treatment and I continued to work full time. My mother had PKD and a transplant as well. Her new kidney was still working for 17 years until she passed away last year of blood clots at 73. I hope that it does not cause you or your family any problems but if it does, it is not the end of the world.