Friday, January 30, 2009

As long as there's ice cream.

Any one that's met our daughter knows that the girl is a problem solver. At five, she can work out a solution to what ever might need fixing. It often involves buying a replacement at Target (where, at three, she thought we should buy a new house from). Anyway, she has a deep concern about this whole transplant thing. Often it centers on Ben having to stay in the hospital, or me staying there, or even his incision or pain level. But lately, the big concern has been on the status of ice cream in the hospital cafeteria. See, when Ben was in Methodist hospital, Grandma and Grandpa would take their sweet granddaughter down to the cafeteria every evening while I visited with Ben. One night, it was discovered that they had ice cream. And chocolate sauce. And so, for the next few nights, ice cream was the treat of choice, and frankly some nights it was probably dinner.

The other important thing you need to know is that during his stay, we also watched the people mover that runs between Methodist and the other hospitals. Having stayed in Disney World, to a five year old, the people mover is the next best thing to the Monorail and surely must be just as fun.

So, now that you have the back story, here's how the conversations go . . .

Daughter: "Daddy, do they have ice cream in that hos-ti-pit-al where you're going for your liver transplant?"

Ben: "I'm not sure, maybe."

Daughter: "Well, if they don't, that's ok. I'm just going to have grandpa take me over to that other hos-ti-pit-al to get ice cream. We'll ride the Monorail over."

Ben: "Oh, um, okey."

Daughter: "Cause that ice cream was so good! Yum-meeeee! And then we'll ride the Monorail back to your hos-ti-pit-al."

*"hos-ti-pit-al": The incorrect pronunciation of "hospital" by a five year old. And it sounds pretty darn cute when you hear it.

See, our girl is a problem solver and, as long as there's ice cream somewhere close by, it's all good.

22 . . . 17 . . . .15 . . . .

As of early this afternoon, Ben is on the transplant list. He got the call from his transplant coordinator at 3:20pm and he's set up the whole list of contact phone numbers and which order they'll call which number and they'll be sending a pager too. It should be interesting to see the pile of phones and a pager next to our bed every night.

As for all the medical stuff, his levels actually improved some of the past three weeks so he now has a MELD score of 15, he was at 17 in early January (with an all time personal best of 22 in the hospital at the end of November). And two of his tumor markers came back ok, there's just one that the doctor has to review but the coordinator said that it looks like nothing (hopefully it's just the one that can be elevated by gallstones). Fortunately, if there is a problem, at least it's been caught very, very, very early. I don't think either one of us is too worried about it at this point but it'll be nice to be assured that it really is truely fine.

Next is another doctor appointment next Wednesday. They'll be deciding what to do about his current stent that's in his bile duct. Without a doubt, his MELD score would be higher without it in there. Of course, it's also likely that Ben would not be doing so well without it. Ben's a pro at the ERCP by now though, this will be his forth in five months or so. Maybe they have a "buy three get your next one free"?

So that's all the news we've got for now. We hope everyone has a great weekend!

Wednesday, January 28, 2009

He's approved!

Ben is offically approved for transplant by the transplant committee!!!

His doctor is requesting one more round of blood work Friday morning before he goes on the list (as soon as the blood work results come back), which includes testing for tumor markers. Let's all cross our fingers and hope real hard that those tests come back negative. A transplant seems like a walk in the park compared to cancer.

Tuesday, January 27, 2009


Come on and ring already.

Holding my breath

Today's the day Ben's case is being presented. I keep staring at the phone, willing his coordinator to call. It's going to be a long day . . .

Friday, January 23, 2009

Really, really bad tv

I love bad reality tv. "Real Housewives of the OC," "Tori and Dean", "Flipping Out", even "Bad Girls Club" if no one else is home to catch me. Bring on the drama and craziness. But even my very high tolerence level for rediculous drama didn't prepare me for what we found last night on TLC. Drumroll please . . . . .

"Saw for Hire" A show about a tree service company. Are those crickets I hear? But see, you would be wrong. This is no boring show. No sir. After I was able to stop my laughing fit over the very dramatic opening, I heard the show's tagline "protecing your children, you and your home from the deadliest vegetation on the planet -- trees." Deadliest. Vegetation. On. The. Planet! Who knew! Here all along, I've been worried about the boogie man lurking about when all along I should have been keeping my eyes on that 10 foot pear tree in the front yard. But the very best part, the absolutely gem of the show, is that they do their interviews while sitting in a $5.98 metal lawn chair straight from the lawn and garden department. Ben's favorite part of course was that the owner's last name was Nosak. Pronounced just like you think ;)

I've made up my mind, forget the whole small business owner thing, I'm working on a reality show of my own. How about "Camera for Hire"? Or maybe "the Liver Insider"?

The pressure of the next few days

If what Ben's transplant coordinator said is true, this will be Ben's last weekend not on "THE LIST". I feel like we should make the most of it. Once he's on the list, every thing will be just a bit different. No more walking out of the house without a cell phone teathered to you, no more letting the answering machine (oh yeah, we still have an answering machine - we're old school like that) pick up when we're eating dinner, we'll have a bag packed that will go with us everywhere we go from now on, and every morning we'll wake up knowing that there's a chance that this day could be the big day.

Of course there's also the aspects that I'm not going to dwell on. The reality of the risks involved. That's really where the pressure comes in. To completely and absolutely enjoy these next few days, that's my wish.

Thursday, January 22, 2009

We've got financial backing

This letter showed up last Friday. Do you see that bold sentence? "The patient meets generally accepted guidelines for a medically necessary liver transplant and he is appropriate for listing with UNOS." It's like even the insurance company is saying "yep, even we can tell that your liver is screwed buddy." It's funny how when you get in to this process, you get excited to get letters telling you that your loved one is sick because that's progress towards something. It's the days with no movement forward where everyone starts to get stir crazy.

I find it very funny that they haven't approved a hospital stay along with the transplant approval. You'd kind of think the two would go hand in hand. Drive through transplant anyone? Sorry there big guy, looks like this has to be done as an outpatient. Knowing Ben he'd be ok with that. Anything to get home sooner and back to his big screen tv and comfy couch.

Wednesday, January 21, 2009

More Cowbell!

Lisa are you reading this? Cause this still cracks me up so I'm going to share the cowbell story.

Towards the end of November, Ben had a fever and was in a lot of pain. (This is not the part that cracks me up just so we're all clear on that.) We knew he had gallstones and the surgery for removing his gallbladder had been scheduled and was coming up in just a few days. One morning before leaving for work (cause Ben NEVER misses work, he could cut an arm off and he'd probably still show up at work), he wrote on our wipeoff board, "I have a fever and the only prescription is more cowbell." For those of you that haven't seen the Will Ferrel/Christopher Walken Cowbell skit on SNL, find it. It's soooo worth watching again, and again.

Anyway, a week later, Ben was in the hospital because that pain was not gallstones but rather a nasty bile duct infection. My sister came over to listen to me freat and worry and basically keep me from losing my mind that day and she saw the cowbell comment on the wipeoff board. A few days later, guess what shows up in the mail box? Yep! A real genuine cowbell! Just for Ben! Lisa went to the Tractor Supply store and bought it. And our nasty little secret? Our daughter knows nothing about this cowbell. Because the noise level she would make with it would shatter a brick wall.

And our lesson today boys and girls is that we all need more cowbell in our lives. Go out there, make someone laugh. It truely is the best medicine :)

The magic number

The MELD score that is. For those of you that haven't listened to us drone on and on about MELD scores, MELD stands for "Model for End Stage Liver Disease". End Stage. Yep, that's a fun phrase. No good comes from End Stage anything. Unless it's End Stage Mortgage Payment or End Stage Lice Treatment maybe. Now, if you're really in to math, and want to google a bunch of things, here's the formula for calculating a MELD score

MELD = 3.78[Ln serum bilirubin (mg/dL)] + 11.2[Ln INR] + 9.57[Ln serum creatinine (mg/dL)] + 6.43

Fun right?

Sorry, back on topic. When we first heard this lovely MELD phrase, Ben's score was 8. That was in mid November. When he was in the hospital a week and a half later, it was hovering between 20-22. Way to go Ben! That'll get you on the transplant list for sure! (And oh how one of his doctors was pushing to get him evaluated for transplant while he was at that high number.) Now with Ben's latest labs, he's calculated that he's down to 17. Absolutely still in the transplant range. But, it just goes to show how often the numbers can change. And as they change, the patient moves in and out of catagories on the UNOS list (United Network for Organ Sharing). You can see the UNOS listings for your region or state by visiting their site

The really interesting part in all of this is that two people with the same MELD scores can be functioning at totally different levels. I've read some stories with people having a MELD score of 11 or 12 and they're very sick. Fortunately, even at 17, Ben is still working full time, still chasing our sweet girl around and still making me crazy. I'm so thankful that as sick as he is on paper, we still get a lot of normal life. My goal is to help him stay at this quality of life up until the day of his transplant. I know that having a great support system will help so much in this goal. And I know that Ben deserves a lot of credit for never having let any of this get him down. (If you're reading this, you're my hero Ben :) )

Tuesday, January 20, 2009

Check it off!

Check mark another part of the evaluation process off the list. Today we attended Ben's required transplant education class. That leaves only his remaining dental work (easy fillings) to be done and you know what happens then? Yep, he's free and clear to be listed. One of his transplant coordinators taught the class - she's so sweet and yes, we're claiming her as one of "his", goodness knows, we need all the good people we can get behind us. (It's like we've got our own little expensive version of the Verizon Network.) We got to chat with her a bit after class. She said that she would be presenting his case to the transplant team next Tuesday and then she would call to let us know when he's been put on the list. I can't believe it's here already. As of today, it's only been 103 days since Ben's PSC diagnosis. On the other hand, it's been 15 years since his Autoimmune Hepatitis diagnosis so we've known for a long time this day would come, it just takes a while to get used to "someday" turning in to "this year".

The story behind the name

Eleven27 otherwise known as November 27, 2008, (which also happened to be Thanksgiving Day). The day we were sitting on Ben's hospital bed and were officially informed that Ben would be having a liver transplant much, much sooner than any of us had thought. It was a morning of tears, fear and worry, one of those moments in your life where time seems to stop and everything gets quiet and still. I can remember exactly where everyone was in Ben's tiny portion of the Progressive Care Unit, the smell of the hospital linens, the sound of the doctor's voice as he changed our lives. And then thankfully, the words of the nurse that brought us back to reality as she explained things from a human perspective and calmed our fears.

Eleven27 - our journey begins.