Living With Medullary Sponge Kidneys

I was working at a hospital for over 23 years. I sympathize and totally agree with psontgirl! I have been living with this close to 4 years now. I was let go from my job because they felt that I could not perform my duties totally. I do get some understanding from my doctor, although he doesn't seem to understand the full implications of how I feel on a day-to day basis. I have pain EVERY day, some good days and many bad.....when I say good days that doesn't mean that I don't have pain! I have had 5 lithotripsies but continue to produce stones due to having 2 medullary kidneys. Emergency rooms were visited numerous times, but all they can do is "numb" the pain with morphine drips. I am so happy and relieved that I found this site because now I know I am not alone! I am unable to lift, do housework, etc. etc. I am very tired all the time...how can you not be when you are dealing with pain all the time? I wish everyone luck and hope you have a great support system like I do! All I can say is hang in there, it's not easy to live with!
tsenta tsenta
46-50
1 Response Jan 23, 2012

Oh I SO get it!! I have known that I have MSK for about 9 years now and I think the longer I have it, the more frustrated I get. It's so frustrating!! E.R. trips are awful and after awhile they start treating you like a druggie regardless if you have a huge kidney stone that would knock anyone to their knees. So I stopped going. It's too scary wondering if I will get a decent doctor and nurse. When I'm in that much pain, the last thing I want to deal with is an ignorant nurse! I have noticed for about the last year, I am so tired. Almost not functioning tired. I have five little kids and being tired and depressed is not really an option. I am terrified of doctors now, mostly because of my past experience of them either not knowing about MSK or not thinking it's a real issue. I wonder if there is a way to find out about a MSK specialist in my area Salt Lake, Utah? Has your nephrologist been helpful?