Can someone tell me why no one is responding to my inquiry about having a double nephrectomy. I'm drowning here, Please forgive me if I sound a little angry. I'm reaching out to my fellow kidney patients and there is no one there!!! has anyone ever
had this done. I'm I suffering alone? Do we die after this? I cant get the fluid off. I'm so very swollen and miserable. the more fluid i pull, the lower my blood pressure drops 80/40 or lower. my body is harding in areas it's hard to sit up and its hard to lie down. There must be someone out there that can give me some info, encouragement,thruth...something.

Katrina,

I believe this is quite common..In people who have late ESRD...I can give you two sources here..You can email Gary Peterson this sites moderator directly and he can help you with sites and links...Or you can also contact Baxter Renal at ***-736-2543..They have a wealth of knowledge, educational resources, and they Im sure can direct you to get some questions answered...

Have you contacted your Dr, your RN, or the Drs RN practioner? You should not being going through this type of pain, etc...IF your not getting the answers you need, then for Pete sakes, find another Dr...Where are you located? I will find a Dr for you...Do you stil do PD or Hemodialysis? Im Assuming PD since you postd here...
Why did you have your kidney's removed? What was the Drs rationale? I will help you find a Dr in your area if you want me to ....

To me it sounds as though you are not getting the quality of care that you deserve

Katrina,

I hope you are doing better...I saw that you where in the hospital...There is a Moderator on RenalWeb (Michael Williams) whom I blieve he has had both kidneys removed....I hope this helps

Thank you for responding. I've been back in the hospital, so i just now reading your re-sponse. I'm in Atlanta Ga., My doc is pretty good, they say the best. My hard places are soft tissue calcifications, being in the soft tissue is suppose to be rare. The double nephrectomy was done because the kidneys were consistantly infected, and infecting my bladder and adrenal glands etc.
I'm not sure why i cant get rid of the fluid, I've tried hemo for a week and then back on pd, which is my method for the last 4yrs. The calcifications are so uncomfortable and i understand that they can kill me. I also had my parathyroid glands removed on jan 6th, he may have left one. he'll do a scan and make sure. The calcium levels are with normal range, but not as low as my doc had hoped for. MY phospherous is a 3. I'm home again after being in the hospital for more than a month(except for 2wks) and taking meds to keep my bp for falling to 60/40 which is what put me back in the hospital after my kidneys were removed. I really believe that this is a long hard road to my death. I'm not sure that i can recover from this. the worst part is, i did it to myself. Thank you for listening

katrina