Naomi,
Thanks so much for your reply. I thought that I was right and my rheumie's nurse was wrong, but I just wanted to make sure. I didn't want to correct a nurse! One of the very first things I wanted to find out was whether or not AIH was contagious and I was very relieved to learn it is not. I have systemic lupus, which is another autoimmune disorder. Until now the lupus has basically been mild and treated only with plaquenil. I have been greatly relieved that I have never had to be on long term steriods for the treatment of lupus.
Today was good until this evening. I'm kind of having a pity party. I talked to my internal med doc about a port a cath because no one can draw blood from me. He said he didn't know if the insurance would pay for the port a cath unless I was going to need it for IV meds. Prior to having the PICC line put in, I had 5 people try 10 times to get blood. They finally got it from my ankle on the 10th try. The next time I had an attack of the severe RUQ abdominal pain, nausea, and vomiting, they put in the PICC line. It has been wonderful but I've already had two cases of cellulitis and I think I am getting a third. It was very tender this evening, so I had my husband change the dressing. The dressing was stuck to one of the stitches and the skin around the stitch was very inflamed. It hurt so bad when he took the dressing off and when he cleaned it with the alcohol. I just broke down in tears, which upset him because he didn't want to hurt me. I thought I could handle leaving the PICC line in til I see my rheumie again on Feb 7th, but my arm is so sore I can't stand to touch it. I called the rheumie's office this afternoon and told the receptionist I need to know what she wants to do. The choices are (1) leave the PICC line in; (2) put in a port a cath; or (3) they can forget drawing blood because I will NOT allow them to stick me 10 times or try to get blood from my ankles.
Right now it's not so much that I feel bad. It's just that I am scared and feel so overwhelmed with so many unanswered questions. Already from just one day of prednisone, I have more fluid retention in my legs than usual. I have lost over 100 lbs in the last year and am at a normal weight for the first time in about 15 years or so. I have so enjoyed the health benefits of getting the weight off, along with the cosmetic aspect. I know I'm being stupid but I hate the thoughts of gaining weight. I am normally very upbeat about my health issues. I have so many blessings in my life but this is not something I ever dreamed I'd have to deal with.
I have been under the care of my gastroenterologist since Nov 2000. He is supposed to be the most qualified for pancreas problems in the state of Alabama. He is the one that did the liver biopsy but I think he intends to let my rheumatologist oversee my care and consult with him as needed. I don't even know if there are any hepatologists in Alabama.
I am sure that once I can get all my questions answered, I'll be better able to deal with all of this.
Thanks for your quick response and understanding.
Karen
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