Desi, welcome to the forum. I am sorry that your brother is so ill and in such a predicament. Medicaid IS insurance and some hospitals accept it. You need to seek out other transplant centers near your brother. One of them should be able to do an evaluation to see if he qualifies for transplant and can be put on the UNOS list. That is the only way to get on it, as far as I know. Perhaps others here who have been through the transplant process can give you more solid suggestions.
Desi, I am sorry Mike is having to go through this, that weeping rash is actually the fluids seeping through his skin. With that much fluid in his body it has to leave some how. It does surprise me the Dr didnt suggest that as the possible reason. My husband had the same thing happen to him and the Drs did a TREAT AND STREET he was out west at the time and the hospital didnt take state insurance so they did what they had to do just to get him at least able to walk from wheelchair to car door. Please get on the phone and call all hospitals you can find that even have a good liver Dr that will take his 2 insurances, you can try to stall his discharge by saying you need to get things in place for him at home to be in a SAFE environment. Medicare will pay for Visiting nurses to come in.....demand them to write the order, maybe even the state insurance will pay, one of them will. Once Hospice comes in they just do comfort measures so you dont want them if there is hope. Will write more later.
Sue, if he has SSI and Medicaid, he doesn't have Medicare. Probably too young and too little work history to qualify.
Desi, I also had the weeping in my calves when I had extreme ascites and edema. The rash is probably just from the irritation of the skin always being wet, particularly if it's in folds of skin. He could try using Desitin Ointment such as used for diaper rash. My fluid problems were handled with diuretics and salt restriction.
I agree that your brother needs to see a hepatologist, and also that you need to start looking for transplant centers in OK. I also agree that Hospice shouldn't be called just yet. Try to get a 2nd and 3rd opinion first, and possibly evaluated for transplant.
Post Edited (hep93) : 1/9/2010 9:31:29 PM (GMT-7)
Desi, I found the post with the transplant regions. Your brother's consists of OK and TX. He may have to travel to TX.
TRANSPLANT REGIONS in the US
The states comprising each region are as follows:
Regarding kidney function, I don't know what else can be done. He may have to undergo a kidney transplant, also.
It seems you are right about hepatologists only being in OKC. That's unbelievable! How far is he from OKC? How about a GI doc where he lives? Just thinking about getting him some ongoing care. I suggest you look into transplant centers in TX and see if there is one that is willing to evaluate him. Then check into Angel Flight for transportation. We have another member (Harpazomeup) who is going through something similar with her brother.
Post Edited (hep93) : 1/10/2010 4:27:10 PM (GMT-7)
Desi, I live in New England and our area it is not unusual for a persons MELD to be as high as 30 before a transplant and along with that number can be some or total kidney failure. So it is not unusual also for them to do a double transplant of a liver and kidney at the same time. I was told this happens when the kidneys are in total failure and person is on dialysis but if transplant is before this the kidneys are sometimes rested with dialysis after liver transplant and they will recover. So I would guess that he is not that bad yet. Stay as positive as possible and keep searching for help...... it may be out there!
Good for you, Desi! Continued prayers.
Sue, do you mean a pulse oximeter? You are right about home health care. Desi, they can get you anything you need, as Sue mentioned. Even a hospital bed if he needs one, and a bedside commode. Anything that makes his care easier.
Sue, that's funny! At least you got the cat's weight!
Sue, I had a cat I had to put down last summer who was 19+ lbs. At one time, he was about 22 lbs. He was 19 1/2 and just old and arthritic; then stopped eating anything but chicken breast. The extra weight is really hard on their bones as they get older. He could no longer jump up on anything--had to be lifted on and off the bed or a chair. He would throw a fit if I withheld food and just bug me to death.