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Old Dec 6, 2007, 04:10 PM
Marisa Marisa is offline
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Biliary Atresia: Marisa's Story

Biliary Atresia
Marisa's Story

I was jaundice at birth but healthy or so they thought. Shortly after my birth we traveled to Wisconsin to visit my Grandma. While we were there my big sister became sick. My mom took my sister to the clinic and took me along. There wasn't a reason for my mom to have taken me along as my Grandma could have watched me, but she did. After the doctor treated my sister she asked my mom if she could look at me. The doctor looked at me, left the room, and returned with a colleague. The doctor told my mom that something might be wrong and that I might need surgery. My mom wasn't alarmed by this and when we left, the doctor told her to have me seen by my pediatrician as soon as we returned home.

We did go to the pediatrician and we were sent straight to Children's Hospital-St. Paul. I was then diagnosed with biliary atresia and had the kasai on March 9, 1977. I was in and out of the hospital for a few months after being diagnosed with biliary atresia, but things stabilized and I got better. From then on I experienced only a few side effects due to biliary atresia. My spleen was huge and I itched constantly. I had blood drawn and saw the doctor every 6 months to follow how biliary atresia was affecting my liver. I was doing quite well.

When I was about 7 years old and in 1st grade things changed. I returned home from school unusually tired. After eating dinner, I laid down in my parents bed for a nap. A while later I woke up with blood every where. I had bleeding varices which is caused by biliary atresia and liver disease. My mom called 911 and I was whisked away to the hospital. After some time in the hospital I was sent home and things went back to what they were before.

My spleen continued to grow, another side effect of biliary atresia and liver disease, and finally when I was 10 yrs old the decision was made to try and relieve me of the spleen and all its complications. My surgeon tried, I believe for the first time, a procedure in which they tried to shrink(embolize) my spleen. The goal was to make it smaller so the pressure and size would go down. The first attempt was unsuccessful as the vein they needed to use kept having spasms and they were unable to get up into the spleen. A few weeks later they made a 2nd attempt. The procedure was, they were going to shoot some kind of styrofoam into the spleen to kill part of it. When they did this they shot too much and killed almost the whole spleen. They had no choice but to remove my spleen because too much damage was done.

I was discharged from the hospital but when I returned for my follow up appointment with my surgeon it was realized I was getting sicker. I was readmitted to the hospital. I still remember being so tired I could barely walk. Fatigue like this is also associated with biliary atresia and liver disease. I had to stop to rest many times as we walked across the street to the hospital. I would take a few steps and then sit down to rest. Once admitted it was realized that I was in liver failure due to biliary atresia. I was put into the PICU and then the decision came that I needed to be transferred to another hospital. I was not happy about that but my only hope was a liver transplant which could only take place at the University of Minnesota. Biliary Atresia was slowly taking my life.

So, I was transferred and the waiting began. I was plagued with unexplained fevers, ascites, pancreatitis, and varices as I waited. My varices were so bad I was not able to eat by mouth at all. I was fed through my central line. My name could not stay on the transplant list until I was fever free for at least 2 days. Every time I made it 2 days with no fever, they would put my name back on the list but shortly after the fever would return. My name was on and off the list several times. After lots of research on my doctor’s part I was finally diagnosed with CMV. I was put on an experimental drug (I did not fit the study criteria so the only way we could get the drug was for my doctor to fill out piles of paperwork) and finally my name was on the list to stay.

In early April there was a liver available for me. A few hours later we were told the devastating news that the parent had changed their mind about donating. There was no transplant that day and the waiting continued. The end of April was my mom's friend's birthday and I was getting out on a day pass to go to the party. Before we were to leave the transplant surgeon came into my room and told us there was a liver available. I asked right away if I could still go to the party but of course the answer was NO. I thought we could go and come back and then have surgery. I went into surgery later that night to get rid of biliary atresia and receive a new liver. I received my liver in the very early hours of May 1, 1988.

I was in the PICU for about a week. I battled CMV again along with other minor infections. That first year I was in and out of the hospital a lot for various things but each year got better. My recovery was slow and bumpy but I got through it. My life was saved, life got better and my biliary atresia was gone.

About one week after my ten year transplant check-up things took a slight turn. I began itching uncontrollably and my eyes turned slightly yellow. I was living in Iowa at the time so I went to the ER and had labs done. I was devastated when my LFT's came back in the 600 and 700's. I was immediately sent home and admitted into the my transplant hospital the next morning. Lots of blood work, 1 med change, and 3 biopsies later I was diagnosed with choleostasis. We were told it isn't that uncommon for it to happen after being post transplant so long. I got my first PICC line and returned home and too work on 2 IV meds and one oral med. Three months after the first set of devastating labs things were returning too normal and my PICC line was removed.

I have been able to meet and get to know my donor family. Jeremiah is always with me and I continue to correspond with his family to let them know how much I appreciate the decision they made. I am fortunate to have been given Jeremiah's gift.
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