One more test

The Last of the evaluation process!!!!!


OK, so on Monday April 30, Big Bird gets to go in for an MRCP & blood work. This is the last of his evaluation tests before listing. Woo Hoo! We are getting closer. He has been feeling a little wonky this week. Side pains, chills & hot flashes (if I didn't know better I would scream menopause-hehehe). Just something else to watch. Found out that his RX plan doesn't want to pay for URSO-to expensive go figure. Talked to his doc about that, so he is gonna try and go without for a couple weeks and see how he reacts, if not guess we will begin the pleading process again from Axacan for assistance.

The lactulose doesn't seem to be doing anything for the loopiness (or if you want the medical terminology-encephalopathy). The Tourette's (no he doesn't really have Tourerret's just something we can say that explains the bizarre things that spew from his mouth), and the "picking" is still there. So he is upping that to 4x a day.

But on a fun note, for us gamers in the house....Yes all three of us, Big Bird, cousin & me all play the addictive game of World of Warcraft. Silly we know, but it is our "family time". For those who play will know, Darkmoon Faire is coming to town this weekend, http://entertainment.upperdeck.com/wow/en/ , so we will be exploring the Card game version of WOW. They also have RL quests, so we will be able to take some goofy pics around town. And since we are guild leaders we think we need to participate in this silliness. You can learn about our guild at www.kktwow.net, Knights of Kirin Tor, we play on the Farstriders server.


Other than that all seems to be well-considering in our household. I will be needing to get in touch with our Bishop from Church so that we have some contacts in San Antonio-I have been putting that off until we were closer to having him listed. We will have to have someone that can come and give Blessings when he is in the hospital in San Antonio.

Laugh

Laugh!!!!!
Laugh out loud!

So, we had a comment today (Thanks Buck!) I just had to laugh. I totally forgot to mention the pee test.

This was SOOOOOO gross! First you have to pee in a wonderful orange jug for a full 24 hours. They tell you to store your pee in the fridge or on ice. Could someone please tell me who would be sick enough to store your pee in the fridge in which you keep your food & drinks. That is gross.

We made the Big Bird keep his on ice in an ice chest, kept in the bathtub with the curtain drawn. It just grosses you out to think about it being there.

But let me remind you that you have to do the TWICE. One week apart. They want to make sure your kidneys are functioning. Nothing like coke colored pee to warm the gag reflux!

This is why you must always remember to LAUGH!!!!! We have a twisted sense of humor in our house, but you have to when you are going through something like this. You have to remember to laugh, cause sometimes it just gets to be too much. Faith, love & laughter are the things you have to hold onto.

One week of evals...

A week of evaluations entails.....

If you have every been sick enough to garner a week worth of intensive testing to see if you qualify to be put on the UNOS list for an ogran-then you know what that is like. If you are not, here is what a week worths of testing is schedule is like

Tuesday, March 27, 2007
8:00AM Dental Consult-Please report to the hospital 3o minutes early. Also, you are given a perscription for 4 horse pills to prevent infection for the 2 hours of x-rays and poking and prodding they will do to clear your mouth for any possible infections that may be looming.

1:00PM, CT Scan-please starve yourself! Nothing to eat or drink for 4 hours prior to the CT Scan.

2:30PM Clinic Appointment-Here we met with a less than personable Hep doc. He just didn't give me the warm fuzzies. One would think if you are there under going testing, you would think the doc would acknowledge you are sick-but instead leaves you feeling he would rather treat the disease (as if we haven't been doing that for the last 6 years).

4:40PM-FINALLY We get to go home (well hotel anyways) Exhausting and we are only on Day 1!

Wednesday, March 28, 2007.

7:00AM, EKG & ECHO-Have to be there 30 mins early (yeah cause 7 am isn't early enough-heck the sun isnt' even shinning yet!)
8:15AM Stress Test-yeah so they pumped him full of chemicals to stress his heart. Left a most lovely taste of metallic in his mouth. This test lasted until noon.

Mom & I sneak away and let him sleep for a couple hours. His lack of naps is not a happy scenario.

Thursday, March 29, 2007

9:15AM-Admissions-I still don't get what the purpose of this was, we got there showed them the letter, and they told us to just wait.

10:00AM-PFT's-His lungs are healthy-unfortunately he appears to not be using the full function of his lungs due to the enlargement of his liver. This is common in Liver Disease. Which does help explain the shortness of breath and dizziness.

11:00AM-Chest X-Ray-well they actually went ahead and did that when they did the CT Scan.
Woo Hoo we are done a wee bit early. Too bad it is raining cats & dogs so that really just doesn't leave us many options. We went and had lunch-then headed back to the hotel. Where we all napped. I really can't believe how exhausting all this is on everyone!

Friday, March 30, 2007

9:45AM-Cardiologist-Clear bill of health! His heart is healthy & normal. He has free cardio clearance for surgery-wooohooo

1:00PM-Nurse Clinic Appointment-well since they failed to administer the TB test, we cancelled this appt.

2:30PM-Social Work-We met with a social worker at the hospital. She talked to us about transplant patients. What to expect. About after care and medications that patients are on etc. She was impressed by his support-and was happy to see us there and him through this week.

His nurse coordinator-which is a super sweet lady-hopes to have the rest of his files & tests together to present his case to the transplant board this month.

If all goes well, by end of April he should be listed. They are putting him with a MELD score of 19.