Health

I've had it for nine years, and I sympathize with your daughter. It's nasty disease and extremely hard to cure.

Where are your daughter's wounds located? Mine are on my right ankle, and fairly extensive. It's also quite painful at times.

They say the prednisone has helped in some cases. I am allergic to it. I've had treatments from maggots to take away the dead tissue to two rounds of skin grafts. None of those have worked.

My wound care doctor of seven years retired recently, and I've just started seeing someone new. He plans to do a new kind of skin graft once he gets the insurance approval.

Make sure that your daughter knows that debriding the wounds is he worst thing for them by making them even worse.

Also, throughout the course of my battle with it, I've had numerous infections in the wound. I've had staph, MRSA, cellulitis, and pseudomonas. I had to be hospitalized and in a rehab place for two and three months at a time on IV antibiotics. Those helped for a time, but the more I had them, the less effective they became.

Earlier this year, I started Remicade infusions, and they seem to be helping. I'd had them before with limited improvement. That got interrupted in November of 2020 when I fractured my other ankle and had to have surgery on it. I am fortunate that the manufacturer is paying for the Remicsde because it costs about $12,000

per dose.

I've spent tons of money on bandage supplies, and learned to not let the sight of the wounds run my stomach. I can even change my bandage competently.

I hope that the LTC hospital stay and her treatments there at least help to relieve her pain and start the healing process. I can recall lying awake at night because of the stabbing pain from the pyoderma.

If you want to ask questions, feel free to shoot me a PM and I'll tell you what I can. I'm not a healthcare professional though I've picked up more knowledge about this thing than I ever wanted to know.

Best of luck to you and your daughter.