Time will tell

We didn't exactly get a hallelujah, but we did get a little relief.

It's all pretty simple. The transplant team feels that it is rare to see the strictures disappear, however, they also feel it could just be a matter of time before they return. BUT, at this point, they are considering him healthy.

The plan is to have his blood drawn every two weeks to check for any signs of disease progression and then after two months if he is still normal, it will move to monthly. They were very clear to Geoff when they said "be sure to watch for any signs of liver trouble" (i.e. yellow eyes, fatigue, etc.). There was no mention of coming off the transplant list nor did they ever use the word 'cured', but everyone was encouraged.

The underlying tone of the visit was time will tell.

We're just thrilled they didn't say it was the wrong chart!

Is it Friday yet?

Tick tock, tick tock.....

My new gig

Patient Advocate Insurance Consultant Extraordinaire

I've got his system down.

We get medical bills on a daily basis and some of them are from almost a year ago. Who screwed that one up? Anyhow, it's crazy how a provider will send us a bill and then I will call BCBS and they will say "Ms. Dunkle, we paid that claim on XYZ date and we show your patient responsibility at $0". So then I call the provider who is trying to scam me for more money and their response is "Oh, Ms. Dunkle, you're correct. That claim was paid in full. Your balance is $0".

WHAT??? How many people just pay their bills and never know if they really even owe it???

Nap time today was spent going through the stack calling BCBS and then calling the providers to see what is really owed and what is not.

My next mission is to start negotiating the bills that we owe. I got my idea from this article. And yes, there is a little sense of guilt because Geoff did have these medical services performed, but the other part of me says it's okay too. At least that's what I tell myself.

I'm here to help if you've got questions.

Is this a God thing?

This is the question I have asked myself 186 times since Thursday.

I have hesitated to blog about this because I really want to hear final confirmation from the doctors this coming Friday.

BUT, I really can't hold back any longer....

When Geoff went for his tube check last Thursday we received some very shocking news, to say the least. The doctor said "it was quite remarkable because Geoff showed no strictures in his bile ducts". When the doctor said that to me, I almost responded with "are you f-ing kidding me"? Instead, I responded with "how"? The doctor had no explanation as to why Geoff's bile ducts looked normal. Keep in mind, the strictures are what cause the need for a transplant!

The doctor even went back to his tube check on Jan 18th (less than 30 days ago) and confirmed that on Jan. 18th he had multiple, multiple strictures and bile pooling within the bile ducts. So bad in fact that he didn't think the tube removal was even going to be possible.

We are UTTERLY confused. So, where do we go from here?

Geoff has liver clinic on Friday with the transplant team. We want to hear what they have to say. Is this a fluke? Did they read the wrong chart? A sick joke? Is this a God thing?

Not sure if this is ironic or not but the same day we received a $5000 medical bill. Whatever it takes.

Tube-less

To be continued....

Hey, it's worth a shot!

Two family friends sent me this today.

I'm in! I haven't told Geoff about it, but he'll be on board....sarcasm......

The ad will read a little something like this:

Got Kidney?

Even though God gave you two, you can totally live with just one! How about helping out a family man in Texas? Blood type A is what I'm lookin for, but if you're O I'll take that too! Beggers can't be choosers, right?

Come on out to Dallas, we'll treat you right and show you a good time. My wife will throw you the best party ever!

Hmmm...I don't think we can offer money-I'm pretty sure that's illegal. I did have a friend tell me she would donate if we paid for her tummy tuck....is that illegal?

Possible tube removal, tomorrow

Geoff is scheduled for a tube check tomorrow as well as a tube removal (if all goes well). Keep your fingers crossed.

I guess now that the tube is coming out it's back to a normal, healthy low-fat diet. No more artery-clogging diet for you, Geoff. Ah, those were the days.

• No more Taco Bell 3 times a week
• No more bacon EVERY morning
• No more vitamin D milk
• No more half and half as a creamer
• No more 3 bags of candy on a Sunday afternoon
• No more bowls of Lucky Charms, Coco Puffs, and Peanut Butter Captain Crunch @ 9:00PM at night
• No more full fat fudge bars
• No more pure unsalted butter on EVERYTHING

The list goes on.....

It's time to switch back to my diet. Bummer for you.

A new plan

We FINALLY got a call back today from one of the other surgeons on the transplant team regarding Geoff's one hundred and fourteen questions.

Not much has changed:

• removing tube in the next couple of weeks
• It's anybodys guess on what will happen?
• Could be months
• Could be weeks
• Could be years
• The tube could be put back in if Geoff has multiple bile duct infections/fevers, which in that case there is "another" rule that could possibly get him his points back (he would basically have to meet a quota over a certain period of time)
• He still recommended that we look into the live donor thing (and, that is still a BIG. FAT. NO.). I honestly think we would consider going to India before we considered that
• He encouraged us to stay open to the option for a split-liver transplant. We're on board.
• He did recommend that we line up a kidney donor "just in case" Geoff finally gets his liver and then needs a kidney transplant. By lining it up now, there will be zero wait time involved. He can have mine. I will get tested immediately. I just hope we can be on the cover on People magazine like George Lopez and his wife.

I'm feeling SUPER iffy about this whole thing. It's like having that security blanket ripped away from you. I mean, now it's really up to God and His plan. I'm EXTREMELY use to the doctors giving direction and believing in that. Now we have to let go of that, a little bit.

If you'd like to give us your kidney, just leave it in the mailbox. We'll keep it on ice.

Sick

Both of us.....

I can shake mine, but not so sure about Geoff. When he says "I have the chills" it usually means hospital. Damnit.

Love your Liver

Happy Valentine's Day

Love, Geoff and Erin

EGD

And no, that doesn't stand for Erin-Gets-Diamonds. Bummer

Geoff will be having an EGD tomorrow.

Check another one off the list for Seattle!

Dinner with a little Jesus

Tonight dinner started out like any other "normal" night...Conner screaming, Ava asking for dessert, Geoff oblivious to all noise, and me gulping down my 2nd glass of wine (my mom was out).

I'm was just about to take my second bite and Ava says, "We have to say our prayer"!!!

Um...Geoff and I were a little surprised. We don't usually pray at dinner, so I knew this must have come from school. Regardless, we were thrilled.

She went on with her prayer and we were s-p-e-e-c-h-l-e-s-s. It was really the sweetest thing I have ever seen. If you can remember back when Ava started school I had very few requests. Adding "a little Jesus" to the mix was one of them. I'm happy to report it has been accomplished.

24 Hour Urine Collection

How do you explain that one to a three year old?

Heaven help me if I find Ava peeing in her teapot this week.

Sidenote: The test is for Seattle.

Friday Funk @ 7:41PM

How does that happen? I go the entire day being in a great mood and then BAM 7:41PM hits and some funk comes on. I wonder if it has anything to do with the bottle of wine a la screw top that I've been drinking? I bet that's it.

OR it could be the fact that I'm not so sure about Seattle anymore.

They called today with his evaluation schedule. They want him to go back to Seattle to complete his evaluations in order to officially list him there. I know it's probably a GREAT back-up plan, but I kinda feel like a dog treading water right now. And yes, I know this isn't about me, but sometimes I honestly think in my warped head that I'm the one on the transplant list. Again, maybe it's the screw top wine.

My thoughts are this:

• waste of time?
• will he see McSteamy?
• waste of money?
• does everyone still wear those cute boots there?
• do I need to go?
• is it worth it?
• what about work?
• I wonder if Nordstrom Rack is having a sale?

It's been a little like Ground Hog's day this past week. We have been going at this for over a year and now I feel as if we were just told yesterday that Geoff needs a transplant.

Note to self: only buy wine with corks.

Status MELD 20

#7 in Fort Worth

#8 in Dallas

And this is all with a MELD 20....technically he is still registered with that score until the details are figured out. He dropped, not because there were more people added to the list, but because the people that were once behind him are now getting sicker.

Clearly it pays to be sick.

Information Overload

Clinic is over and we definitely got some information.

Let me just start off by saying how SURREAL this whole decision-making thing is. It's not like saying "hey, turkey or ham for lunch today"? Instead, it's like "hey, would you like to live 3 years and remain healthy or maybe just ride it out and see what happens"?

Here are some of the answers:

Tube in or out?-the tube is going to come out. There is the option of leaving it in, but the doctors feel that not only are we prolonging the inevitable, but we also risk completely damaging the kidneys. And, there does come a point that if the kidneys become too weak Geoff will not be eligible for a transplant, ever. I think the Dr. said something like, "sure you can leave the tube in indefinitely (especially if you don't want to go the transplant route) and just ride it out as long as the tube is willing to last". Um, no. Us Dunkles are risk takers, but even that's a little much for us.

So, the tube comes out. With the tube coming out the doctors feel that we should see a significant change to the liver. We didn't get the impression that they felt years would go by without seeing any damage. They stated quite a few times that "there are multiple strictures" in the bile ducts, so they would definitely expect to see "a jump in Geoff's bilirubin" (simply put, that means the liver would be having a hard time). This risk we are willing to take. The plan going forward is for Geoff to stay as healthy as possible, have weekly blood draws, and to help fight off infection he will be on a constant dose of antibiotics. Over time his MELD score should increase and he will be eligible for a normal transplant.

Donor criteria-something new that we learned today. Every pre-transplant patient has a certain criteria that the donor liver must meet in order for the transplant to happen. For example, Geoff''s donor would have to be on the smaller end (because he is a re-transplant and because he isn't a huge guy), preferably younger in age, etc. If time goes on and Geoff is still not transplanted we may have to look into widening our criteria. I. KID. YOU. NOT. when I say that the Dr. mentioned "donors that were in prison, past drug users...". I think I passed out at that point. Obviously, that is a ways down the road, but I tell ya, these doctors have contingency plan after contingency plan. Unreal.

Split-liver transplant-yes, I still think we are considering it, but right now there is not a lot of information on the entire process. We will continue to find out more as we move forward.

Here we go, ready or not. It will probably be a few weeks or so before the tube comes out. The transplant coordinators want to make sure the "new rule" has already gone into effect before removing.

Very Smart Friend Award

The Very Smart Friend Award goes to our super smart friend, Greg.

Greg is a co-worker of Geoff (although he is really more than just a co-worker). Greg and the rest of the team at Pro Pac have been nothing short of supportive rockstars.

The entire weekend was spent trying to decide the best options are for Geoff:

• remove tube, get sick?
• keep tube because it's working?
• Drop Seattle?
• Stay with Seattle?
• how much risk are we taking?
• how much risk are we willing to take?
• Find a center that specializes in split liver transplants?

The questions/thoughts/concerns were never-ending this weekend.

Anyhow, Greg had some really great insight and questions that we feel we can approach the doctors with tomorrow. Sometimes Geoff and I can't always see the big picture, so it's really nice to have friends that are watching out for us.