Shellshocked by statistics

Today has been fairly traumatic for myself and my dad and stepmum. I went to an 'education' session at the hospital today and sat there for 4 hours being told and shown more than I ever wantd to know about transplant. Having driven back to Watford this evening I then shared this with Dad and Carole, and now they're rather shell-shocked too. Its not that its anything completely disturbing, but the reality of it all really hits home.

I hope no-one minds me sharing some of the more scary facts. I think it'll be cathartic. Bear in mind these are for all liver transplant cases, and in some cases my relative good-health and age will improve them for me personally.

Pre-transplant
- Chance of patient dying while waiting for transplant: 10-15%
- Repeated endoscopies/scopes/blood samples X-rays etc. required during wating period
- At risk of brain encephalopathy due to liver failure (impaired function). It seems I was grade 1 encephalopathic a month ago when I was really unwell while in Watford. This has receded now. Symptoms include severe lethargy, jaundice, pruritis (itching), portal hypertension (a blood-flow/vein problem), bleeding from either end, severe water retention, internal infection, sleep reversal (can't sleep at night, can sleep in day), temperature control problems, bleeding/bruising problems, muscle wasting.
- 9 month average waiting time, plus/minus quite a few months

Transplant
- Will be postponed if: I am out of the country, I have a cold, I have any infection.
- Can happen any time day or night - must be contactable 24hrs a day.
- Operation takes 8-12 hours.
- Under sedation and anaesthesia for 24 hours
- Can use livers from brain-dead patients (preferred method, most success). In this case: 90% survival rate after 1 year, 70% after 5 years, 55-60% after 10 years.
- Can use livers from non-heart-beating patients (the old method). In this case 80% after 1 year, 60% after 5 years, 45-50% after 10 years.
- Can use a portion of a healthy liver. In this case 75% after one year, 55% after 5 years, 40-45% after 10 years.

Post-transplant:
- 4-5 days in Intensive care to wean off ventilation, feeding tubes. Monitoring for signs of rejection/malfunction in liver.
Following statistics for brain-stem-death transplants:
- 2% Chance of outright failure intitally
- 2-3% chance of life-threatening clot in hepatic artery (thrombosis)
- up to 10% chance of internal bile leakage into abdomen
- up to 30% chance of bile-duct structure-problems.
- High dosages of immune-system suppressants given.
- 70% of patients experience attack of acute liver-rejection in first week. Controlled by steroidal drugs. 5% chance of chronic (long-term, more serious) rejection in first few weeks.
- Immunosuppressant drugs have side effects such as: temporary diabetes, hair loss, weakness, headaches/blurred vision, muscle tremors, reduced kidney function, mood swings.
- Level of drugs starts high and reduces slowly over first few weeks until the correct level is reached to allow body to keep liver while able to fight off some infection. Immune system will always be at more risk of disease however.
- Increased risk of skin melanoma - sun-exposure to be drastically reduced.
- 2-5% chance of developing liver malignancy

The good part:
- Energy levels will be as good/better than ever before
- No major restrictions on lifestyle (aside from ensuring food cooked properly, taking medication regularly, avoiding some travel vaccines).
- Usually complete cure of problem condition

So... thats the reality. I had to deal with seeing detailed diagrams of the operation procedure, looking at samples of nasal/air/blood tubing they passed around, and lots more detail about the intensive care/post-operative bit. I also know about transplant list prioritisation and liver-donation national sharing in some detail. You can see why we're all a bit shell-shocked, but the reality is that if I'm ill enough to need it, its much better than dying from PSC! And maybe, just maybe, I'll recover enough in the meantime to be taken off the list for a few years...