Sickle Cell Anemia/Kidney Issues...

[ambitiongirl]

Hello Everyone,

I have suffered for a long time struggling with Sickle Cell Crisis to the point it is affecting my Kidney. When I was a child I was diagnosed with protein in my urine and Kidneys. I had a biopsy done but I was never given a reason of what caused it. I was handed some medicine called Vasotec 10mg and was told to take that and that I would never be able to have children.

Forward to years later once I became old enough to know more about my health. I had no one to talk to my mom had passed away when I was young. She was the only one there throughout the Doctor office visits and hospital stays so I felt she would've been the best one to know about my issues. Therefore, now I feel I need to open up and start asking questions about this scary process.

Furthermore, I got married and had two wonderful children. Still taking the same medication all those years ago they gave me although which it hasn't been any significant change for the better in my situation. If anything its worst the doctors are telling me I have chronic kidney failure due to sickle cell which was never had confirmed all those years ago when I had my biopsy done.

However, now I'm being told that I may have to start dialysis soon while waiting to find a kidney for transplant. What I would like to know if they telling me I have this kidney issue because I have sickle cell anemia? It's mind boggling because no one has test me thoroughly to see what's actually causing the issues. I was at a research hospital all those years ago and they didn't know what caused it. By the way my kidney levels keep fluctuating one minute it'll be functioning at 11% then the next minute it'll be almost at 20%. Is that normal for people who have kidney disease? I would also like to know if I get a kidney transplant will the new kidney be attacked by the protein I'm producing and it will affect the new kidney? My last question for now is what are some ways to stop the protein from affecting my kidneys or is it too late?

Best Regards,

[kidneystories]

Hi. I have PKD, so I don't have the same underlying issues as you, but I can say for a period of years my kidney function fluctuated greatly. I don't know if this is normal, but that was my experience too.

Here is an article I found on sickle cell and kidney failure: emedicine.medscape.com/arti...

Hope that helps. As always consult your nephrologist with these important questions. Knowledge is power with kidney disease.

[ambitiongirl in reply to kidneystories]

I've had several nephrologists and I feel they are all saying the same thing due to reading my medical records from what the last doctor have stated. I get no where talking to them that's why I've started to be my own advocate as bad as it may sound but it's true. Thank you for the information.

[kidneystories in reply to ambitiongirl]

No, I agree with what you hsve said. You are always your own best advocate. Good luck seeking a solution.

[marcyc NKF Peer Mentor NKF Ambassador]

It is very easy to get angry or frustrated by something in the past. The best course is definitely to learn as much as you can and be your own strong advocate. Write down all your questions prior to any doctor visit. Realize that sometimes they may not have an answer. Stay strong, prayers are with you. Best of luck finding a donor.

[ambitiongirl]

Hello MarcyC, I have wrote down questions and talked with several doctors and it's always been the same story no matter where I go And i wouldn't necessarily call it the past if its an ongoing situation but my next step is to see a kidney dietitian/nutritionist...thank you...

I have a question hopefully you or someone else may know the answer. Can a person produce too much protein in the kidneys and urine from being diagnosed with Gastroparesis? It's basically a condition in which the stomach cannot empty itself of food in a normal fashion. I also learned that it could be caused by damaging of the vagus nerve. Which regulate the digestive system... I've just been diagnosed with that and was wondering if anyone was familiar with it.