Simpson character in training ... "Bili Rubin"
I am quite new to the autoimmune hep team ... just two months since I was diagnosed with autoimmune hepatitis. It all seems so new and scary to me, so I am blessed to have found a support group to confide in and am hopeful the support system will lessen my anxiety and confusion on the disease!
Just a little bit about myself: I am 22 and working towards a Masters in Environmental Science at University of Manitoba. I do try to maintain a relatively healthy diet and live an active lifestyle, so I was very shocked to learn that I suffer from autoimmune hepatitis!
My diagnosis took awhile - I had flu-like symptoms for a week early this January (January 12th to January 18th)). I was constantly hungry but couldn't keep any food down. It took an entire week until I finally could keep food down; however, my skin began to turn slightly yellow. I ignored this at first and thought it was my imagination, but finally my family commented on it and suggested I go to the nearest medical clinic for an opinion (January 19th). I was told the flu I had must have been very severe, as most going around this winter season were, and caused me to become extremely jaundice. I was prescribed rest at home and that I would go back to my pale self in no time (heads up to anyone who doesn't already know this - the flu cannot cause jaundice!!!)
I waited only three days after this clinic diagnosis before really becoming concerned with my increasingly yellow, itchy skin and the fact that I had no energy and would sleep 20/24 hours a day. I did not have any severe pain in my stomach and I had quite the appetite still so I wasn't terribly worried, just confused as to why my pigmentation was still yellow (of course I had been self diagnosing myself off of the Mayo Clinic website and was finding out it could be issues with my gallbladder or liver).
On January 22 I was taken to emergency and got loads of blood work done, as well as getting my vitals checked and another ultrasound on my kidneys, liver, gallbladder and spleen. I was told my bile and INR levels were very high but that since my vitals were stable I could go home for a few days (as it was more comfortable than waiting in the hospital) and come back in for followup blood work to compare any changes. I returned for the followup blood work even yellower, with even less energy and even itchier skin (January 29th). At this time I was immediately emitted into the hospital and did not leave for 3 weeks.
The first week at the hospital is a blur. I barely remember anything from it (besides the fact that every meal seemed to have gravy on the meat.. and I loathe gravy!) - I am told I had multiple CT scans, MRI's, ultrasounds, abdomen fluid removal, blood tests, and a liver biopsy. I do not remember the majority of the nurses or doctors, or conversations with my family during this first week at the hospital. I was unresponsive for awahile than responsive with no recollection of anything. I now know that since my liver was beginning to fail the proteins that stop toxins and increased bili/INR levels from circulating in the body were not present, resulting in toxins circulating to my brain, causing confusion and unconsciousness. My likelihood of living was really low the first weekend I spent in the hospital, as no one knew why my liver was failing so fast. Thankfully, I was immediately put on a high dosage of prednisone an it started to slow the liver deterioration. So, it seems I was blessed with some sort of miracle! I was going to be flown out to Toronto for a liver transplant but my liver was actually able to be salvaged (70% is still functioning to all the doctors amazement) due to high doses of steroids (yuck) now controlling and regulating the liver enzymes. The second and third week in the hospital were spent mostly sleeping, eating, and taking my copious amounts of medications, whilst passing the time doing word searches and being spoiled with outside low sodium foods being brought to me.
I lost a lot of muscle mass during these past 2 months (most significantly in the first month), retained a lot of water initially making movement hard, gained a lot of weight due to constantly being hungry and seem to have adult acne (hopefully just due to the steroid).
I am very, very thankful for DR. David Peretz, who is a hepatologist specialist here in Winnipeg and is the head of liver transplants here.
I am also very pleased to announce that after just over two months my skin is back to normal pigmentation and there is only a slight yellow hue in the whites of my eyes left! Hallelujah!