Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hi I'm 42 years old and have pkd. I got diagnosed 3 years ago and recently my GFR fluctuates between 13-20%. Does anyone else have this problem?? It dropped and they had me get a fistula placed for dialysis. Now it's back to 19% and my Dr is questioning my symptoms. I am exhausted and have vomiting/nausea. Some days seems a little better than others. I really have no energy for nothing. Now I'm questioning myself. Is this in my head because he just made me feel really small. I'm just confused. Am I losing my mind? Please any advice is appreciated!
thanks
blessed74
Ik am 44 yrs old and diagnosed in my twenties. My GFR is 34 at the moment. I notice that my energy is declining but try to stay as fit as possible. I try to avoid proteins as it decreases the levels of ureum in your blood. I am a vegetarian, it feels good for me. What also helps for me is that I bought a crosstrainer 5 yrs ago. I workout twice-three times a week. It improves my mental and physical health. I have a hughe liver that prevents other sports unfortunately. Are you anemic? Or does your hemoglobinlevel stay high as in a lot of PKD patients?
PKD is a very heterogeneous disease. You have to find out for yourself what helps you to function as optimal in your circumstances.
Take care!
Regards Nicky
EGfr is calculated by measuring creatinine levels in the blood. Creatinine level is affected by many factors e.g. Dehydration, how much protein you have eaten, whether you've had an infection, muscle mass, weight loss/gain, exercise, etc. There is also a margin of error in the test which can affect readings. My eGfr plummeted after an infection, then recovered to a large extent (for a short while). What you have to look at is a general trend over a period of time to see what's really happening. I've been told that dialysis is usually started between 5 and 10% function, but this varies according to individual symptoms. A fistula takes about 6 months to be ready, I think, so having this at 13% doesn't seem unreasonable. I guess you'll just have to wait and see what your next reading is. The 19% could be a rogue reading, especially since you're feeling so ill. When are you having your next blood tests? Sometimes if a value is queried doctors repeat tests after just a couple of weeks. Let us know how things go.