Posted 8/3/2007 2:35 AM (GMT -6)
I know this news is very upsetting to you but try not to get too upset until all the info is in. I strongly urge you to seek out a hepatologist rather than just a GI guy, because my GI guy was way off base, making things much worse than they were. A hepatologist deals only with diseases of the liver. I don't know if your GI guy is a hepatologist, but the type of biopsy you will be getting is different from the ones I had and is more complex and it would be good for you to have a good hepatologist doing it and looking at the biopsy slides.
The biopsy is somewhat painful and you will need someone to help you in and out of the car when you go home, and please be careful to take somones arm and not to fall. Usually they recommend a day off work but I think three is more appropriate, spending as much time as possible sleeping lying prone so the incisions clot and heal.
PBC means that for some reason bile is backing up due to scarring of your portal ducts, but there can be many reasons for this other than cirrhosis, I think that conclusion is somewhat premature. People due get stones and lesions, and with autoimmune disease, damage can repair itself once the disease is brought under control. There is specific testing for autoimmune hepatitis and they are hopefully doing that for you though pred I believe is one of the standard treatments. Are you quite jaundiced (yellow skin, whites of eyes, yellow under tongue)?
Here is another article and it's important to read to the part about liver transplantation. Unline people with hepatitis and viral diseases, liver transplantation has been successful. Also the progression of this slowly progressing disease is slowed by drugs and by eliminating drugs that are hard on the liver. My dad is 70, has cirrhosis fairly bad among other problems due to glycogen storage disease and he is very active and seldom troubled with anything but occasional fatigue. His labs may be a mess at times, and his liver a mess, but he is very much normal and active and has had this problem for well over twenty years.
I hope you visit the hepatitis site, because those people really know what's up and I hope somehow you can get a second opinion from a good hepatologist in a research facility like Borland-Groover, where they know about the latest techniques, diets, medication trials.
I've had severl GIs telling me I have a year to live, and that has been over several years and it's because they have trouble distinguishing the AI disease from the liver disease. The biopsy will help, People do get things like stones and lesions and inflammatory problems due to medications that can mimic a worse disease. Many times fibrosis is deemed cirrhosis and it is not. Only the biopsy can tell.
I want you to have hope and not be so upset, even though this is rotten news, things can be worse. This PBC, if it is confirmed by biopsy may be mild, and at any rate you will be living with it for a long long time. Thank God they found out. Think of all the old drunks and winos that live forever to ripe old ages and totally trash their livers and have all kinds of really bad problems and they just keep plugging along, probably outliving us all. And alot can happen in medicine in twenty years.
I'm in the 14th year of my twenty years, and though I have liver problems, I'm careful with my medicine, don't drink-- except last year I had one glass of wine for the first time in over 5 years for a special occasion. And I eat what the doc says. Will I have cirrhosis? Yes. Will I have PBC? probably, maybe already do. Will I get liver cancer? 20% chance. I'm just sick of worrying about it and being upset and sad. I've seen so many people live really long with really crappy livers that I just don't take those time frames really seriously.
I don't want to minimize this, but I don't want you to be so upset, at least not yet, because you don't know and it's not good for you to add a lot of stress to the situation. I wish you had a hepatologist that had more experience with liver patients so that he could reassure you more. Liver disease drags on forever, it is slow and you can increase your odds by doing the right things and add time.
I wish so much that this was not happening to you and I can't stress how important it is to find a good hepatologist to help you with this diagnosis, given the AI disease and the possible confusion there. I'm praying that you have only inflammation at this time or maybe just fibrosis that can heal with some changes in your medication and diet and the addition of new medicines to treat the problem. I will pary for you and you are in my thoughts alot. I remember when I heard twenty years, and I was so upset at first, but I got tired of it and decided when someone gave me one year I'd be worried, now if they say that, I just look at my dad and the rest of my relatives that have it that are old as the hills and still very active and relativley healthy and I just take it with a grain of salt.
Welll (((hugs))) and hopes and prayers that somehow you are ok and things are not a tragic and gloomy as the docs are making them out to be. They should be reassuring you, there is treatment, and timeframes are long enough that new advances can be implemented by the timeyou need them. I'm so so sorry you have this and are so upset. You have every right to be. I just feel your pain so much and want so bad for you to feel better. Please take care and relax and have fun if you can. And let us know what is going on with you.
And remember, please have someone help you out of the car and hold their arm until they get you into bed so that you don't fall. I fell after one of my liver biopsies and I fell right on the biopsy site, the edge of the stair smacked it and it was not good. And you give your family a gift by letting them care for you, you are letting them "be family" to you and that is important to them and I'm sure it makes them feel good. Because this autoimmune condition can be genetic, your family members should know about it as well. Its ok to be upset, its just hard for me to hear because i just want to make you well somehow and I can't. Please take care. My thoughts are with you.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments