Hi everyone. After several years of avoiding getting involved in support groups for PSC, I've finally decided that I would benefit hugely by connecting to other people in the same headspace that I'm in, trying to make sense of PSC and the many issues that come up along side of this.
I was diagnosed with UC at the age of 3, and 31 years later, at the age of 32 I was told I had PSC. The first few years were very difficult, trying to come to terms with the prognosis and what I wanted to do with the 5-10 years I had left before I would, according to the doctors, need a liver transplant.
Six years later, I have since had a baby and have had a stent inserted between the portal and hepatic veins after portal hypertension set in at 12 weeks pregnant. Apart from that, I had a period of nighttime blindness while breast feeding due to vitamin A deficiency, and had a terrible food poisoning incident that led to encephalopathy and hospitalization. I now take Vit A and D supplements in addition to calcium and laxatives ever day to try to prevent blood poisoning from happening again. Nighttime itching is the most ongoing, severe problem, although I am mildly jaundiced and have general fatigue and mild depression. Lately I seem to be having some kind of hormonal imbalance and am waiting to see an endocrinologist to see if this also may be liver related.
Most importantly, I'm very broody and desperately want to have a second child. I've been told by my hepatologist that I must wait to see if my liver functions stabilize after the last pregnancy (my son is just over a year old and, thank God, healthy) but I realize the risks involved and am torn apart daily by whether or not I should just follow my instinct to go for it, or to wait and get a yay or ney from my doctor. So far all the doctors say that I should wait to see if I will need a liver transplant in the next few years, and if so, to wait until I have a new liver. Sometimes I think that may be a year or two away, other days I can't believe it will ever happen.
Anyway, I hope my experiences can help someone, if you happen to have PSC and experience with pregnancy or multiple pregnancies, I'd be very interested in hearing about that.
Love to you all, Lizzie