Update(s) from 's CaringBridge site (sorry, missed a few)

[Guest guest]

TUESDAY, JANUARY 22, 2008 02:46 PM, CST

It was brought to my attention that I haven't yet posted about what it feels like to have a new liver. I can't believe I forgot to cover that large detail. As I've told everyone I've spoken to, the only " liver pain " I felt was for about 15 min. in ICU. The rest of the pain I've been feeling is surgical pain. Even though my liver functions are still elevated, my liver has not caused me the discomfort that it has for the better part of this disease - 24 years.

In the observation unit I was given a mini psych test, to test memory and I did perfect! I cried - even got teary eyed. It was amazing. I no longer am forced to take the brain fog medicine, Xifaxin, which saves me $200 a week!!!

Currently, I am also enjoying life without Urso, Rifampin, Azulfadine, and a few others. I went from 48 pills per day to 16, not including enzymes when I eat. No liver pain, and a LOT less meds -- I'm getting used this REAL quick!!!

Tomorrow, in clinic, I'll address the painful eating issue as well as the mishap I had yesterday. My nose began to bleed and 20 min. later it was still gushing. It was horrible. About the time that my coordinator told me to go to the ER, it started slacking off and a few minutes later stopped. They say it has nothing to do with the meds I'm on, and my INR is only slightly above normal at 1.1. They want to discuss it before they raise my coumadin dose. I think, now, that it was just a fluke. Yesterday, I wasn't sure I wasn't going to need a transfusion. :0)

I will try to post tomorrow after my appointment with updates. I think that once we get the painful eating issue resolved, I'll be completely free of pain meds. Yea! I don't believe that this issue is related to my pancreas, because the enzymes don't help, but I pray that I'm right. I'm hoping its my stomach rebelling for having to suffer for the bad behavior of my liver. :0)

I'll write soon.

MONDAY, JANUARY 21, 2008 04:45 AM, CST

Yesterday, was a good day overall. I didn't have to take any pain medication until late evening when I found it difficult to get comfortable due to terrible back pain. I've suffered with back pain, due to PSC, for 24 years and it got worse after I fractured my spine in 1999. So, I don't find this back pain alarming. I will, however, be celebrating when it's gone! Yes, I do think it'll go away as my body continues to heal and I get more mobile.

I think I really need to find a way to walk a bit more. This condo just isn't big enough to do much other than walk up and down the hall. On my trip to on Wed. I'm going to try to make the long trek without a wheel chair. Last week, that was NOT an option, but I hope to pull it off this week!

I must tell you, it has been so exciting to see how others are genuinely excited that I'm post transplant. The people that have come to visit just smile from ear to ear! It is so good for my soul! My friend Terry, who took her life last April, has a daughter Danni that I am very, very close to. (She introduces me as Mom all the time!) She came by to see me Friday night and she must have said two dozen times, " I'm so glad you got your liver. " Every time she said it she had a bigger smile than the time before. It reminded me of this book I have about a teacher who was transplanted. The title is, " I'm Glad You're Not Dead, " because that's what her students kept saying to her upon her return to the classroom. That IS what Danni was saying to me. She hugged me. She cried. She told me, " I Loves You " repeatedly. Then she called her new boyfriend and asked him if he would be willing to come by my house and meet me, but that he should remember I'm basically her mom. By the time he got there he was a nervous wreck about meeting me; it was so cute. We had a great time visiting and watching movies!

Sat. I had a great friend stop by, whose son lost his battle with PSC nearly 6 years ago. She is so down to earth genuine, funny, and great fun to be around. I had so much fun visiting with her like old friends - talking about anything and everything - so normal! Before she left she rubbed my feet using her reflexology magic! Ahhh, hurt so good!!! What a sweetheart!

Sorry that this has gone on, but it feels so good to share good things. It's also wonderful that my brain is so full of so many good, promising thoughts for a future I was uncertain I would have! Life is amazing and God continues to bless me!!!

Love and hugs,

SATURDAY, JANUARY 19, 2008 11:13 PM, CST

I'll try to make this quick in hopes that I can get some sleep, but long enough that no one will be concerned about me since I haven't posted. I'm hanging in there, doing pretty well, actually. Although, I have had some serious pain associated with eating, and it doesn't seem to be my pancreas. I have been taking enzymes with my meals, but it has not prevented terrible pain on my left side.

Since they had to do a Roux en Y, due to the fact that they had to split the liver, things are a tad rearranged. My stomach, I know, has either shrunk or is squished (now that's a word) by my new liver. Either way, it only holds about 4-5 bites of food without feeling as if I've had a ten course meal. So it could by my stomach, different pancreas issues, or perhaps some strange heartburn or esophageal problem. It hurts my chest (BAD) to swallow most solid foods and then the left side begins to ache with ever increasing magnitude.

I'm not worried, as my body has been through the ringer, however, I will get a hold of my coordinator to see what she thinks. They may just have me back off of solid foods for awhile and stick to softer, easier to chew/swallow things.

Aside from the strangeness with eating and my left side, I'm improving. I am getting around easier and showers no longer completely wipe me out. Yea!!! I'm gaining strength, and I think it's just a matter of time before all the little quirks get worked out. As Ali has to keep reminding me I've just been through a HUGE operation and I'm not going to get well immediately...it takes time to recover from any major surgery, but especially when they've removed and replaced a vital organ. OK, she's right, I shouldn't be so hard on myself and let my body heal as it needs to.

Monday will be my first day home alone, so I intend to rest up tomorrow and make sure that I have easy access to all things pertinent. My hairdresser, Todd, agreed to come by my house for a cut on Tuesday and I'm elated! My hair is scary!!!

I'm gradually getting more visitors and it's been fun. I'm glad I waited a bit before trying to talk to too many people. Now, when I have company I can actually talk and enjoy them. I sure wish more of you lived close - I'd love to see your smiling faces.

I guess I'll sign off for now and try to get some shut eye. I'll post again soon.

Love,