Why on earth?

As you are well aware, SA did an ERCP with stent placement back in July. A month later, Big Bird was in the hospital-in ICU with a Cholangitis Infection.

This morning, they leave a message on the answering machine, they want to schedule another ERCP. WHAT IN THE WORLD ARE THEY THINKING?????????????

Big Bird called his nurse, waiting on a call back, if that doesn't go anywhere, we are calling his local doc and having him call and have a chat. Are they trying to make him sicker?????

SCREAM SCREAM SHOUTING OBSCENE LANGUAGE FROM THE TOP OF MY LUNGS!!!! ARG!!!!!

Follow Up Transplant Clinic Appt.

So Big Bird had a pre-transplant clinic appt. on Wed. He left very frustrated. His MELD score is 21. He is no longer #1 on the list, he is actually #3. Apparently 2 other people got sicker than him. Not that I don't understand this, it is just frustrating. I belong to the PSC Support Group on Yahoo-I really don't know what I would do without that fine bunch of people. I posed a question to the group-asking if the transplant centers kept you updated on your listing status. The general consensus was that no they did not.

I know that if he is to get a liver transplant, it will be when the time is right. I truly believe Heavenly Father's plan is much greater. I am comforted that I know this. It is just a frustrating situation to be in.

We are tethered to an imaginary leash-waiting and wondering. But at least we have humor, sarcastic and dry as it may be-but it is there. We have faith, that things will work out the way they are meant to. We have family-whom we yell at, love, cry with and hug. With all this I say Big Bird has it made for whatever the outcome may be!

Our Aunt Karen

I ask for prayers & good vibes for our Aunt Karen. She has recently been dx with cancer. My Grandma keeps assuring me that she is in good spirits, and I am glad to hear that. Just so you know Aunt Karen-we love you and prayers are being said, good vibes are being sent!!!!

Still Waiting

Big Bird is still waiting. He is doing ok. I think the antibiotics have all left his system, so now he is getting back to his "normal". Big Bird and Mom are heading to San Antonio tomorrow for his clinic follow up. They will redo his blood work, and meet with the hep doc just to keep things up to date. I will post when I know something. I will email his nurse for blood work results since they never seem to know it there.

Feel free to leave comments, we love to hear from everyone.

Poem

One of the members of the PSC group I belong to wrote this poem and posted it today, so I had to share, it is funny and whitty!

Keep Hope in Sight

Yellow eyes, jaundiced skin,

What a lousy shape I'm in,

Swollen ankles, sloshy belly,

Squishy like they're filled with jelly,

Itch and scratch, til it's sore,

Then I itch and scratch some more,

Cramping legs, cramping feet,

Stretch them out and then repeat,

Sleepy days, up at night,

Thinking isn't quite so bright,

Am I tired or am I lazy?

This itching's going to drive me crazy!

Colors seem to fade to grays,

As I'm feeling more malaise,

But keep a future hope in sight,

When yellow eyes will turn to white,

Fluffy ankles will deflate,

Maybe I won't sleep so late,

Surely I won't feel so drained,

Certainly I'll feel less pained,

Thank you Lord, there's hope in sight,

When yellow eyes will turn to white,

By transplant or Your glory bright.

Written by: Darryl Powlison

Who Is Big Bid?

It occurred to me that when I started this blog, it was to keep our family & friends updated on Big Bird's health and progress etc. It is hard to call everyone with all the info. But as time has gone on, it has occurred to me that our family & friends are not the only ones reading and stumbling upon this blog. So, I thought I would let you know a little bit about who Big Bird is.

Big Bird is my wittle brother. I say this as he is my younger brother, but he is actually 6'10" tall. He is also currently sporting a lovely tinge of yellow in his skin & eyes (mostly eyes right now-he is looking ok skin wise currently). Hence the name Big Bird (tall and yellow).

Big Bird has been sick since he was about 15 years old. He broke his leg, and things just spiraled from there. He starting "passing" blood, come to find out he had bleeding ulcers in his colon. He had to have a couple blood transfusions-he is actually surprised to have survived as his blood counts would be extremely low.

When he moved to Austin, and ended up in the ER with a colitis attack, we found his excellent Doctor. He was able to finally after about 5 years of dealing with the colitis, get it under control. Dr. Ziebert continued to keep Big Bird under his wings. In 1999, his liver function tests starting coming back abnormal. They did an ERCP and discovered that Big Bird had PSC. We were told that he would need a liver transplant in about 5 years. As time went on, he would get occasional episodes of UC, and occasional episodes of liver related infections.

In 2005 they did an ERCP and stated that stenting would no longer work that transplant was now an option that had to be considered. Well at this time, Big Bird had to insurance. Since his health was declining, energy fading, labs getting worse, itching becoming unbearable, with consultation from his doc we decided it was time to apply for SSDI. SSDI was granted, but the kicker with that is Medicare takes 2 years to kick in before you are eligible. He got a couple cholangitis attacks, symptom's got worse and we really started to fear.

On February 1, 2007 Big Bird got Medicare. On February 9, we were meeting with the Transplant Clinic. In April 2007 Big Bird was being evaluated for Transplant. In May 2007 Big Bird was listed.

Now we just wait. Big Bird is #1 for his Blood Type (type A) he has been this way for a couple months now. His labs will be redone next week when he has a transplant clinic appointment.

The last couple weeks have been really good actually. But as anyone who knows how PSC works, you NEVER know how long that will last. So you take each day at a time.

Well, that should give everyone who doesn't know Big Bird some background and even a little bit of explanation to his nick name.

Nap Time

After the trip to the dentist this morning to fix falling crown and a yummy breakfast taco breakfast, Big Bird, Aukee & Jasmine decided it was time to cuddle up and watch a movie this morning.

I had to laugh, so I snapped this photo while I was leaving for work. Aukee is such a nerd, doesn't he know yarn is not a pillow??

Caution-falling teeth

Big Bird's crown decided to fall out this afternoon. We had to call in to the dentist, so we are seeing him first thing in the morning. Then, we had to drive all over the place (which I try to avoid shopping on Sundays) looking for an emergency crown repair kit. Oh the joys!!!!