Always Something

Exactly two weeks until I'll be at WDW with my family...

and my liver starts acting up. Great.

I've been diagnosed with a liver disease for almost 3 years now. It doesn't effect my day-to-day life, but it's something that I do need to keep an eye on. It's called Primary Sclerosing Cholangitis (PSC) and basically is the scarring of the bile ducts within the liver for unknown reasons.

I see a hepatologist every 6 months, and Dr. Flamm is my most favorite doctor ever. I went through several doctors in my track to diagnosis, and I'm so happy to have found Dr. Flamm. At my appointments we talk about how I've been feeling, he'll check my abdomen and legs for swelling, and then sends me for a slew of blood tests. The blood tests check my enzyme levels as well as other indicators that my liver is working (or not working) correctly. Also, I have an MRI once a year to check for blockages in the ducts.

There's nothing I can do to treat this disease. All I can do is not drink alcohol, and keep having blood tests and MRIs done. Eventually I may need a transplant if the scarring ever gets too bad. I'm really hoping I'll never need one. According to research the average time period between diagnosis and liver failure is 12 years. I'm part of a support group and there are many people that have had the disease well beyond 12 years.

Anyway... back to what's going on today. Sometimes bile will leak into my blood stream when it can't flow easily through the ducts of my liver. When this happens I get VERY itchy. It's hard to describe, but it kinda feels like little pin pricks under the skin. Itching doesn't help, it's mostly in my hands and feet but when really bad covers my entire body, and most often is the worst at night. I have scars on my feet from making myself bleed trying to itch the itchiness away. It's the worst part of having PSC so far.

I started itching 2 days ago and I'm afraid it won't be gone by the time I leave for vacation. Like the disease itself, there's nothing I can do to stop the itching. Heat seems to make it worse, so I'll ice my feet and hands at night so I can get some sleep, but that usually only helps a little. There is a drug I was prescribed last year when I was itching for over a month, but I can only take it once a day and it needs to build up in my system. I took it again in February and it didn't help with that itching spell... which led to my terrible scar on my left foot that looks like an exclamation point.

If things seem to be getting worse, I'll call my doctor and see if he can get me that drug again, but I really just want to be healthy for this trip!! My last family trip to WDW was ruined when my liver disease showed up and I had to miss the last day at the parks because I could barely stand without wanting to vomit. Another lovely thing that PSC does to me from time to time.

So until we leave I'll be drinking lots and lots of water hoping to flush my system out, getting some sun (some people with PSC claim that UV rays help with the itching), and thinking good thoughts.