Tuesday, September 30, 2008

Back to Work

Geoff is back in the office today. Although still sluggish.

We are actively going to pursue UW, the decision has been made. I've got calls into the insurance company to see where we stand. Geoff has also got a call into the transplant team here @ Baylor to discuss being listed out-of-state. Cross your fingers that they're supportive.

I think I will have a glass of wine tonight.

Monday, September 29, 2008

He's not faking it

Not that I thought he was...but for Geoff to stay home from work, that's huge. We heard back from the transplant team and they pretty much think it has something to do with the vaccines he received on Friday. If he does spike a fever we were instructed to go straight to the ER.

It KILLED me today to look at the stats for UW. There is NO ONE in Geoff's blood group waiting for a liver transplant at UW. WTF? Why is everyone so freakin healthy in Washington? I knew I should have breast fed my kids.

Sunday, September 28, 2008

Sunday, Funday

The tube check is complete and Geoff survived yet another one. While he was there they also gave him the flu vaccine as well as the pneumonia vaccine. He seems to be sluggish this weekend...were not sure what that is all about. Liver? Tired? Vaccines? My nagging? The kids crying? USC losing? Maybe a little bit of everything?

We are going to request his blood work from Friday. I want to make sure I am monitoring his numbers too. Just because they went to medical school doesn't make them smarter than me. :) The real reason for that is to just make sure something doesn't go unnoticed for days at a time. If he is eligible for any extra points, I want them ASAP.

I feel like were getting close, one way or another.

Friday, September 26, 2008

Some answers

Question #1 How do you make a proper "flower angel"?

Answer: 3 Mambo Taxis (sangria and a margarita mixed together), 3 Cucumber Martinis, and 8 girlfriends. Find a nice big flower bed in front of a hotel and simply fall into it. Wala! A flower angel (FYI-not one of my proudest moments, but pretty darn funny to spectators).

Question #2 I am confused....why was the request "outside the guidelines"?

Answer: The request was made by the doctors and then denied by the committee. When a committee denies a request there is no explanation given. BUT, if the patient's case falls "outside the guidelines" (which according to his doctors, Geoff's does) then you can petition the request at any time. We were not given exact details of the denial, but it seems as if they will petition. They consider Geoff's case complex. We have heard that before. Typically, they request additional points because a patient is getting much sicker, but in Geoff's case they are really petitioning the points for another reason (the longer he continues to wait, the worse he will get). The goal is to be proactive.

Question #3 Is University of Washington a serious consideration?

Answer: At this point, yes. Obviously, we need to work it from the insurance end. I still have to see what is covered and what is not, but it is not uncommon for patients to be dual listed. I spoke with some at UW yesterday and he was very helpful. The only problem is that the process to get Geoff on their list could take up to 3 months. We initally said if he doesn't get transplanted here by Dec. then we could look elsewhere. The only problem with that is if we wait to go to UW in Dec. it could be March before he is on the list there. So, we are going to speak with his doctors here about possibly getting a referral for UW. If anyone has a connection at UW, please pass it along!

Geoff is currently at his tube check. I will pick him up around 12:30PM. Happy Friday everyone!

Thursday, September 25, 2008

Outside the guidelines

Geoff was denied the extra points. It's all very confusing, but there is a chance for the doctors to petition the committee (which we think is what they will do) because the request was"outside the guidelines".

Were fighting hard to get this moved along. I'm about to return a call to the University of Washington.

Status Update:

#4 Fort Worth
#6 Dallas

Wednesday, September 24, 2008

Got Question?

This may or may not be necessary, but thought I would give it a try. Geoff and I get a lot of questions from friends and family about the transplant, about our situation, about our "plan", about the "call" (and the occasional question about my alcohol intake), etc.

Have anything to ask? All questions accepted (serious and non-serious).

Tuesday, September 23, 2008

The Men are Going to Love this

On October 1, 2008, for the first time ever women of all ages and backgrounds have the opportunity to let it all out and let their true feelings heard. Fabulously40 will allow you to gain freedom and liberation, by bitching about everything and anything, in a safe, protected environment. The day will be full of bitching events. Win prizes, meet women, and most importantly- LET IT ALL OUT! Join now to register for Fabulously40 and participate in the Official bitch Day.

Slow Week

Haven't asked for a status update this week. The number of people waiting for a liver in our region seems to climb higher every week. What is it with Texans and their livers (I have a few ideas....)? Geoff has a tube check on Friday. I think this is #6?

Sunday, September 21, 2008

GNO (Girls night out)

I will not be talking about this on my blog because that would embarass the hell out of Geoff, but that doesn't mean that my fellow blogging mommy friends will not.

Thursday, September 18, 2008

He's brilliant

video

Wednesday, September 17, 2008

Fellow blog readers and supporters

I'm a little embarrassed that I haven't thanked you earlier. The support from friends and family (and people we don't even know) has been overwhelming to say the least. The fact that you take time out of your day to inquire about our lives is truly a special thing.

We never get sick of telling our story because we know that you care. Hopefully we are inspiring other families who are going through hard times as well. Were definitely not the experts on how to deal, but we do try to have some fun in between (sometimes with the help of my friend Kendall Jackson).

Thank-you, thank-you, thank-you from the bottom of our livers for supporting my family through this diffiult time. The ride isn't quite over, but it's nice to know we have people like you to get us through to the end.

Tuesday, September 16, 2008

Status

#5 in Fort Worth
#8 in Dallas

Hmmmm.

Hot Damn!

Geoff went down to the hospital today basically seeking out anyone that would hear his case!

He was able to find and sit down with the transplant coordinator (who has been VERY supportive) throughout the process) and plead his case (with 3 pages of notes in hand). She interupted him halfway through the first page of notes and went immediately to speak with one of the transplant surgeons. Geoff was then called into the office with both of them (I think I would have peed myself at that point) and the Dr. AGREED that it was a knee-jerk reaction on Friday to take Geoff off the list and that he would be put back on the list today!!!

We should get a status update today.Yay Geoff!

Monday, September 15, 2008

It's time to take charge

Geoff and I are fired up!

First things first though-Happy Anniversary, Geoff! It was our 5th wedding anniversary on Saturday. We had a GREAT weekend despite the shitty, shitty news on Friday. Thank-you Tim and Jenny.

Back to being fired up! After the call on Friday it was clear that in order for Geoff to get the treatment he needs (and highly deserves) we can't just sit in the back seat and let the doctors drive this whole thing. Don't get me wrong, we LOVE the doctors and do trust them, but Geoff is one of many patients. One of the surgeons called on Friday and made it very clear that Geoff is NOT eligible for a dual transplant (because the risk is too great considering he is a re-transplant). Well, that eliminates one of the options. As of now, it seems as if the only option is for Geoff to past the kidney test. So, my question to all of you...can I steal your pee? It will be just like high school when you borrowed your friend's pee to past the drug test (which I NEVER did-but have heard of it). Kidding. That won't work.

Fast forward to today. Geoff received a call from the kidney specialist and low and behold the kidney specialist really didn't think it was a big deal that Geoff scored low on test. Really? Okay, here's a genius idea-how about you doctors communicate with each other??? The truth is we already know that Geoff's kidneys are not that great and we know that the liver transplant could be risky as far as the kidneys go, but what's the other option? Nothing. So, we take the risk and move ahead because not getting a liver transplant for fear that the kidneys won't make it IS NOT an option.

The plan seems pretty straight forward in our minds. Getting the doctors to follow suit is another thing. We have some plans for the week to get things moving in the right direction.
  • Kidney specialist appt. with Dr. T tomorrow. Geoff is going to get Dr. T on his side so that he can go to bat for him with the transplant team.
  • Geoff is going to stop a medication that we think is throwing the test off (which my genius husband figured out on his own).
  • Retake the kidney test on Friday and pray that he receives a "passing score"
  • Research other transplant centers out of state just in case it comes to this and the doctors are not willing to move forward with us.

Are you fired up with us? Good, glad to hear it. :)

Friday, September 12, 2008

Not the call we were expecting

Geoff just received a phone call from the transplant team informing him that he has been taken off the list. Unfortunately, he failed his kidney test and now he is considered ineligible. We are awaiting a call from the surgeon to help answer questions and talk about the next steps.

Questions are swirling in our heads. What happens next? What if he doesn't get back on? How long will the tube last? Is he eligible for a dual transplant?

We did hear from the transplant coordinator about a 1/2 hour ago and she said that this really isn't that uncommon. She told us that as long as he passes the test he can be re-listed. He just has to pass. Not sure when he can take the next test-that will be up to the transplant team.

It's seems like such a glitch in the system. He's been eligible for the past 5 months and now that he has waited so long, the kidneys have worsened. Where is the fairness in all of this?

Happy Birthday Liver!


Geoff and I almost forgot to say HAPPY BIRTHDAY to his liver. It was 9 years ago either yesterday or today (Tim/Jenny maybe you can help us with the date) that Geoff received his current liver. 9 fabulous years....a wife, 2 great kids, friends, great family, and the chance at life.




Thursday, September 11, 2008

10 Year Reunion

Tomorrow is my 10 year reunion back home in California. 10 years!!! Seems unbelievable to me that I actually ever wore that outfit. Clearly dark lipstick and a really bad layered haircut was "in". Is that a side part or a middle part?

Go Mustangs! Class of 98'

Bad Dream

I had this horrible dream last night that Geoff got called for the transplant and we couldn't remember the directions to the hospital. At the time, it really was an awful dream.

I'm psycho about the appts. tomorrow. Geoff is cool as a cucumber. He's such a show-off.

Wednesday, September 10, 2008

3 year old for sale

  • The price is negoitable
  • She is in fairly good condition*
  • Has really nice hair (like her mom)
  • A slight attitude problem
  • Will repeat anything, like a parrot (this is actually really fun)
  • Comes with all accessories including clothes, barrettes, bows, and toys
  • Loves to eat
  • Loves to share a bed (kicks horribly)
  • Can be so lovable and sweet

*pictures are available upon request

I would like to sell her for about a week (possibly less).

Tuesday, September 9, 2008

Kidney gossip: part 2

Geoff recieved a call today from the transplant coordinator. The transplant team has requested that Geoff repeat the kidney test that was done back in July. Apparently, his kidney levels are elevated (1.8). The number really isn't that "elevated" for Geoff, but it is higher than it has been all year. It's a political game. Every 3 months Geoff has to be re-evaluated in order to remain on the tranplant list. The kidneys have to be strong enough to receive a liver, but liver can't be too sick or you can't remain on the list. Makes sense, right?

His test is scheduled for Friday. Last time he basically had to sleep with the nurse to get the "un-official" results that day (instead of waiting through the weekend). Geoff, I highly encourage that behavior again on Friday.

The transplant team has also asked him to begin attending liver clinic every two weeks. Good news or bad news? Depends on how you look at it....he's obviously not getting healthier so they want to monitor him more closely, but the upside is that if he does get sicker then he may move up the list, quicker.

Monday, September 8, 2008

Here we go again

#4 in Fort Worth
#7 in Dallas

Couldn't say it better even if I tried

Thank-you LISA!

Monday Stat

A little stat for all my fellow blog readers:

Back in April when this journey started there were roughly 1900 people waiting for a liver transplant in Region 4 (Texas and Oklahoma). Currently, there are approximently 1700 waiting in region 4.

So, at least they are doing transplants. I was beginning to think that the doctors were still on their fabulous summer vacations.

Friday, September 5, 2008

The Good Life

I couldn't resist the cute little jars of peas at Target yesterday. It may be a bit premature, but I'm pretty sure he'll survive. I was careful. I only let him have 1 piece of chicken and 1/2 of a baked potato with it.






Tuesday, September 2, 2008

A few more







Where's my lunch box?

That's all I've heard for the past 24 hours.
Ava started "school" this morning! She was super excited (and Conner couldn't believe his ears when I told him that Ava would be gone for 5 hours). Here are the photos to prove it.