Post Edited (FinnstersMom) : 3/30/2009 1:22:22 PM (GMT-6)
Finnster's mom, welcome to the forum! I know we have members dealing with autoimmune hepatitis, but I don't recall anyone with PBC.
Which Mayo location are you going to? I'm being seen and treated by Mayo Jax. They literally saved my life after I was diagnosed with liver cancer (nearly 2 yrs. cancer free now.) I know you can totally trust them. Is there any indication of how long you will be on the Prednisone?
Post Edited (hep93) : 3/30/2009 6:08:02 PM (GMT-6)
I have autoimmune hepatitis, too. I have had treatment for two years so far. Thinks move slowly, the liver has to heal, so be patient. Ask us any "little" question, even if it's "gross", because we all have the same kinds of problems. (See the Chron's disease site for some grossouts--I post there, too....)
The only advise I have is to take good care of yourself in the simple things--sleep, good food, lessened stress, exercise--these things are very important in healing. And do what the doctor says without alot of "second guessing". You will not find much with your research, and medicine is more art than science, so try to follow the routine.
Keep posting and asking questions. I hope you do well...
Post Edited (FinnstersMom) : 3/31/2009 7:36:02 AM (GMT-6)
Finnstersmom, I'm glad that you live close enough to access treatment at Mayo. I am about 4 miles from the clinic/hospital. I expect to move to the beach by the end of summer/beginning of autumn, so that will put me even closer. I would move to the Gulf Coast, but stay here because of Mayo. They also did a 2nd revision of my left hip replacement...such a great job that it's almost like having my real hip. I had bilateral replacements and one revision at Shands and they made a mess of all of it.
I'll be at Mayo all day tomorrow for testing (I'm sure you've probably been through that.) On Thurs., I return to see my hepatologist, Dr. Denise Harnois. She is absolutely tops. All their doctors are, though. I've loved my surgeons, P.A.s, everyone there. I've been going for about 3 1/2 years, and have even stayed in the new hospital (for my last incisional hernia repair), which is an amazing place.
If you think that autoimmune disease is a catch-all phrase like fibromyalgia...that's incorrect. It is a very real disease and needs to be followed closely. It appears to me that you are getting plenty of exercise just taking care of your baby, husband, and career. (Been there, done that.)
Please take care of yourself and I hope you will post often!
No, not really, nothing gross. I guess what I meant was that there was no question that you couldn't ask. I was on prednisone 40 mgm each day for about a year, and I got acne, too. Plus just about every other side effect, too. Taking it is no fun, is it....
I agree with you wholeheartedly. I myself am basically a vegetarian, and I eat properly most of the time. I am a big exercise fanatic and I am a personal trainer, too. I know from my own experience that food/exercise make a big difference in how I feel, even if I am struggling with illness symptoms or medication side effects. The message of my post was that it isn't your fault if you get sicker, no matter what you eat or don't eat. I have seen my friends really torture themselves with the thought that they "caused" their illness or their problem because they did or ate something that was "wrong". It sounds to me that you are taking good care of yourself without giving yourself any additional hassles. You might want to test the vegan diet after you have been stable, and see just what is influencing what. (Sometimes a steak is good for you, too!!!)
Good luck for the long haul, fellow liver-buddy!