Liver disease at a glance
Remembering the horrific details are mind boggling. So many exhausting trips to see specialists; waiting long, long hours in emergency waiting rooms all the while holding my daughter in my arms, watching her bent over in pain, with nothing more that I could do, except wipe the tears away from her eyes ..and mine, feeling helpless but thankful that I could be there, with her, and praying that this would all just go away!
This started when Lisa was 16 years old and she’s 28 now, so I’ll try to tell you in laymans terms about liver disease and Lisa’s history. It began with stomach pain and was eventually found to be ulcerative colitis. She lived with this, having colonoscopys often but I remember, clearly, when her gastrologist perfomed the last one before her surgery. The doctor said that the intestine was so inflamed that she couldn’t even chance taking a biopsy, as it could easily go right through. She showed me the pictures and it was a mushy mess. So Lisa began her treks to Calgary. There they removed her large bowel and replaced it with a J pouch which is a small piece of the sick bowel that is left behind to create a pouch that attaches to small intestine and the rectum. Because of the ulcerative colitis the J pouch was always inflamed (pouchitis). This is an autoimmune condition and therefore the immune system turned on itself and started to attack the liver. The PSC in her liver overlapped now with autoimmune hepatitis, which is really rare. Unfortunately the inflammation was irreversible for Lisa and the J pouch had to come out and she was given an illiostomy. She went home and was found to have a soft ball sized abscess in her gut. She had a drain put in and went back and forth to the hospital to be monitored once again.
Every time the liver becomes inflamed it creates scar tissue which is hard. As the liver becomes more and more scarred it blocks the blood from flowing through. Toxins build up as well as fluid. Often times patients have to have the fluid drained weekly. It causes high blood pressure as blood is backed up into veins etc. Vericose veins in the esophagus need constant monitoring and if they begin to appear they have to be banded. If they are left they can burst and be fatal. Lisa’s ileostomy was bleeding due to the pressure inside her abdomen and she had 5 blood transfusions and platelets by IV. Her Drs decided to do a TIPS procedure. They placed a stent into the liver to relieve the pressure and the blood would get through. But the blood doesn’t get filtered so with the pressure released all of the toxins that had been building up rushed straight to her brain. It’s a terrible feeling sitting there for days in the hospital watching your daughter, go into what seemed to be a coma but still be awake. A normal conversation would take an hour instead of ten minutes because of these breaks in in her consciousness. It was the way the body handled the toxins. Now, between Benji and herself they have learned to administer heparin shots daily, as a blood clot could also be fatal. This is where Lisa is today.
HEPRIN SHOTS AT HOME
Canadian Liver Foundation
For more on liver donation