Saturday, July 14, 2012

My Current Relationship with Liver Disease

I have a liver disease. When I tell people that, I get The Look. So right away I say, I didn’t get it from drinking too much alcohol. The Look remains. I have something called Primary Sclerosing Cholangitis. PSC. It’s rare, it’s subtle, sometimes not subtle at all, it’s cruel, it’s like being part of a cruel science experiment. There is no treatment. (I'm on the transplant list, and am looking for a live donor now - again.) But they do know it is these things:
1.     an autoimmune disorder
2.     of the bile ducts (which carry away toxins and by-products from your liver
3.     the bile ducts harden on the outside and get inflamed on the inside
4.     sometimes they get completely blocked and they have to go in and open them
5.     hopefully
6.     sometimes they put in stents to keep the ducts open for while, 3 months at the longest
7.     then the stents have to be removed or they cause infections
8.     you get infections anyway, called cholangitis
9.     which quickly turn to blood sepsis. Real fast.
10. You either stay in the hospital and get IV antibiotics or
11. You can stay home and take a couple powerful antibiotics which
12. Wipe your gut flora out
13. Then you have to take A LOT of probiotics, and now I’ve found out
14. Prebiotics (chicory root, raw asparagus – uck, and a few other things like that)
15. And they promote the growth of probiotics in your gut
16. And then you feel better

I read a lot about PSC. In spurts. Lately, since my last bout of cholangitis I have a new symptom. I can’t sleep. The doctor prescribed Ambien (worked for 3 weeks), Lunesta (worked 2 nights) and now Restoril (temazpam). The most sleep I was getting at night was 6 hours. This sounds okay to most people – "Oh, that’s all I ever get!" But I’m sick, I’m fatigued, I am one hurtin’ gator. I need a lot of sleep. About 10 hours a day. So, 6 hours is just a little over half of what I need.

Last night I took two Restoril at 9:15 pm and didn’t wake up till 6:15 am. Nine hours. I feel better, but what I’m looking forward to is a repeat performance. Many of them.

When I visited my hepatologist, Lisa Forman, an awesome, smart, caring physician, last Monday she talked and questioned and listened to me a lot. Then she said, I think you have the early stages of hepatic encephalopathy, the sleep disturbance part. She prescribed Xifaxan 550 mg for me, the preferred and the best treatment. HE is not something you get and then keep from that point on. But it can recur and Xifaxan helps suppress those recurrences. But it’s a very expensive drug. $1393/month retail. Oh, the pharma gives you a $100 coupon good for 6 months. Whoopee. Right now I’m waiting for authorization and pricing from my Medicare Advantage insurance, Anthem Blue Cross-Blue Shield. So far, they’ve been complete assholes with me on just about everything I try to talk to them about. I don’t have much hope of getting this drug.

So I read this article in the scientific journal Nature. I’m not a member so my cousin Vann, a med researcher at Duke, emailed it to me. Says that prebiotics and probiotics work well at treating HE. Better than Lactulose. This morning I’m going to a health food store that carries chicory root in bulk for $1.58/bag and add that to my smoothie in the morning.

When I can’t sleep for this long, I begin to worry about having a seizure. I do have a long-standing seizure disorder which is controlled by meds. But the last time I had one was when I had an internal bleed and basically lost all my meds. The medical staff was too busy saving my life to worry about a little ol’ seizure. I was in ICU when I had it, so that was good. I didn’t end up on the floor. That was about 4 years ago. The one before that was 10 years prior to the one in 2008. And they can be caused by a combo of lack of sleep (prolonged) and stress. BUT, I think I’m going to be okay now.

If you've never read it, go look up The Spoon Theory on the website of a woman with lupus. It’s really good. Oh, her URL is . The Spoon Theory is in her menu bar.

I get so many spoons per day. I think yesterday I had about 3 or 4 or 5. I like it when I have 20.Today I think I’ve got about 10. I will use them all up. You know why? Life is good. It’s the only game in town. I want it and I want a good one. I want more people to write to me – or

Or call me – 303-596-0316. Just say hi. I get way too many calls from bill collectors. I need some real laughs! And I need your love. I need it from anywhere I can get it. I am a Love Hog.

You’ll have to look up those terms I threw at you above. I get tired of explaining scientific shit. But if you don’t want to know about it, that’s okay, too. I completely understand.

I love reading your comments here. Not on FB, okay? And please, please, please subscribe. You'll get a blog post from me in your inbox. Easy peasy.

Just don’t give me The Look, okay? Deal.


  1. I am posting this comment as a test for others.

  2. Hey Dana,
    I followed you here from Jeff Goin's post on breaking the rules. I think it's great that you are writing this blog about your experience. I've known a lot of people who are sick or disabled, and the system is just no help in understand what it is like and what you have to do. The only real help is someone who has been there and can show you the ropes. Good luck with your insurance (and thank God (or Obama) that they can't kick you off for being sick anymore!)

    1. Hey Jessica,
      Thanks for writing. I love Jeff Goins. And Ollin Morales (Courage2Create). They're real people and so kind. I just signed up for Jeff's free course to better blogging - and getting more subscribers. I didn't realize till yesterday I have just 4. On Blogspot I thought the thing to do was to ask for Followers. Have a bunch of those. I hope you will subscribe. I won't disappoint you! You are so right about being sick and needing someone who has actually been there. And I want to be that person who can show people who are sick and disabled (with anything) how to get through the system. It certainly has taken me a lot of wrong turns and moves to find out what I need to know now. Yes, thank God AND Obama that you can't get kicked off insurance for being sick. Duh! You have a great day. If you're living with spoons per day, I hope you have an abundance of them today!

  3. My name is Alex, I am from Ukraine, I am 32 years old man. I don't smoke cigarettes and don't drink alcohol. My blood is O+ and I have a good health. If you need liver transplant I am ready to give part of my liver, but I want to receive a big compensation for that...

    1. Dear Alex, thanks for writing and for your offer to be a live donor. However, I don't have money for a "big compensation," as you put it. I also believe that it is considered illegal to pay for organ donation in the US. That's why it's called donation - a gift. At any rate, maybe someone else will take you up on your offer.