Hello all, my name is Brian and I am a 40 year old male in South Carolina. My mother is 62 years old and was diagnosed with TTP in December, 2008. It is currently in remission (after she spent nearly 5 months in the hospital and 9 additional hospital stays this year), however it damaged her kidneys and heart greatly prior to them determining what her illness was. She's currently undergoing dialysis 3x weekly, due to almost complete kidney failure, and she now how congestive heart failure. The combination of these ailments has made it very difficult for her to have ANY times where she is not exhausted and nauseated. The 3 doctors she has - kidney doc, TTP doc, and cardiologist, cannot seem to get on the same page - and my mother is suffering for it. They've not been able to find the right treatment or combination of medications to even make her less miserable. She's told us that if she doesn't see some improvement by Christmas 2009, she doesn't want to live like this and will no longer do dialysis, which will of course cause her to die. I'm looking for some help or some recommendations on doctors - I wonder if getting a second opinion on her overall care and the coordination of it would help. I believe the doctors she has are doing all they can, but I can't help wondering if someone else more qualified or experienced with this type of scenario could more effectively help her. We only have weeks left before she is going to give up. If anyone has any thoughts, recommendations, information on support groups, etc. I would greatly appreciate it. Thank you in advance for your help. |
"What MD Junction means to me is a place where i can feel like im not alone. As someone with something as rare as hydrocephalus, it feels like im the only one in the world with it. When i came to MD, its like everyone has it. It doesnt feel like im alone. And that people need to hold up a sign to say what i have, because people know. And they understand. I can get questions answered from people who have been through it rather than from doctors or people who only can tell you from a physical standpoint. THat is what MD junction means to me." (tomboykimi)
