Hi all. I'm new here. My Mother has Scleroderma, and is suffering with extremely painful, necrotic toes. They have given her everything for the pain, short of anything that needs to be installed, but nothing really works. Her vascular surgeon wants to amputate, but won't do it until she has a heart bypass, and her kidney function is too poor to perform that kind of surgery.
Basically, she is sitting at home, in constant pain. A typical "light" pain day is at about a 4-5 on a scale of 1-10. I am so afraid that she is just going to give up.
She has a general practitioner, a vascular surgeon, a nephrologist, a cardiac surgeon. None of them seem to know anything about scleroderma, so rather than try to learn about it, they just keep giving her different drugs for blood flow, high blood pressure, etc. It's getting frightening. For instance, she takes Lasix, and her general practitioner was having her take potassium. She took it off her drug list after a hospitalization, so my sister asked at one of the appointments whether she should take it. This doctor got offended and rude and said she didn't need it. As per routine, they did blood work at the visit. Later that evening one of the other physicians from the clinic called and ordered her to go to the ER and get an IV potassium drip. She ended up taking mega doses of oral potassium, because she refused to go to the hospital, and had to get it retested first thing in the morning.
I have searched for Doctors in the South Eastern Nebraska/South Western Iowa who know something about Scleroderma and have had no luck. I am hoping someone here may know of a Doctor who specializes in Scleroderma, who would be near that area.
Up until a little over a year ago, she was completely independent, driving, working full time, living a life. She had an ingrown nail trimmed and everything fell apart.