On The List!

It looks like the transplant team’s answer is yes, they will transplant Joey. However, there are some pretty major strings attached. And when I say strings I mean ropes with nooses.

He is now officially on the liver transplant waiting list. Testing on potential live liver donors has once again been resumed. The donor testing is a major positive. I am trying to make that my key focus to will myself happy.

The catch is that the team is still unhappy with his pain regime and would like to see a drastic drop in pain meds. This will be monitored and if Joey’s progress isn’t seen as satisfactory, they can take him off the list. That scares me. Basically he spent the last 5 months in hospital struggling to find something that works for pain control, finally did, but now he is being told that he has to reduce it significantly to receive a transplant. They say this is necessary for them to be able to help him post-transplant. Other docs feel differently.

So that’s where we’re at right now. Like I said, resuming testing to find a donor (or at least rule more out) is a huge positive. But I feel like I should be happier than I actually am, I guess. My big fear is that Joey isn’t going to be able to reduce stuff enough to both make the team happy enough to transplant him and to keep him out of excruciating pain. That’s what the hold up was in the first place. Joey, on the other hand, is finding me to be a Debbie Downer. His “it’ll work out” mentality towards everything is being cramped by my point of view. So I am trying to shut up.

There’s the info; you can decide how you feel about it yourselves. Hopefully positive to some degree.

After digesting the news (with enzymes, of course), we had a fun afternoon close to the home base:

Obligatory feet in sand shot (See? We attempting to relax! Well, I am. Even on a good day Joey barely has a pulse. From being too relaxed. Not cause he’s almost dead). Thanks for doing my toes Cream & Sugar!

The next series is based on mocking some folks we saw when we went to Mexico. There was this set of 4 guys who were switching back and forth taking muscly topless photos of each other on rocks close to shore. Just when you thought they were done, the model of the moment would request more pictures of himself in contrived poses:

Here’s Joey rescuing a jellyfish. There we go, tampering with nature again!

Here we are getting our hoop on. Joey was literally getting his hoop on…his fanny pack. After he made some minor adjustments things flowed much more easily for him.

You’re a tiger…on a swing!

K & J

Sushi and Hot Chocolate: A Losing Combination

Met with the liver surgeon today; no groundbreaking news yet. With any luck that will come at the end of this week or early next week, but the surgeon seemed caring enough. As far as we know, we have now finished all of the talks we need to have and Joey has completed all of the required tests. Now it’s up to the team to talk things over and decide whether they will transplant him.

The rest of our time in Vancouver was good. Spent the majority of the weekend watching Joey nap. (Can you still call it a nap if you are asleep for most of the day? Joey says yes!) Managed to do a little more visiting. Discovered today that sushi and hot chocolate are a repulsive combination for a second tasting (I’ll take his word for it on that one). Met with the surgeon immediately after this revelation, came back to PR, said happy birthday to my momma, went home, and passed out (realize that this hasn’t actually happened yet, but am anticipating its occurrence the instant we shut off the computer).

We love our own bed. It is good to be home. Novelty still hasn’t worn off.

K & J

You Know You’re Special When…

Looks like we are hanging out in Vancouver until our appointment with the liver surgeon on Monday. We were supposed to meet with him and a few other BC transplant peeps last Monday to finish up Joey’s assessment, but he was called into surgery, so we had to reschedule for the following Monday. At least we got to meet with everyone else. Then the liver team has to meet to discuss Joey and come to a consensus on whether or not they will transplant him. This meeting should take place on September 30^th if all goes well. Hopefully we can find out then, but I guess we’ll see how things go.

The rest of the trip has been going okay for the most part. Joey’s pretty tired with all of the running around for medical appointments. At home he usually rests for most of the day, so coordinating things has been a touch challenging. The good thing is that we’ve been able to visit with a few of our Vancouver peeps, which is always fun. This includes the delivery guy from Thailicious, whom we became quite chummy with during our stay. You know you’re special when the restaurant is closed to the general public, but they’ll still take an order from “Joey from St. Paul’s” without hesitation. Seriously, Thialicious makes really good food. Drool.

K & J

No News Yet

Met with some of the liver transplant people today. Still no news; not sure exactly when we will find out whether or not they will list Joey for transplant. Will update when we know anything.

K & J

Move Over Jack Handy

Deep Thoughts, by Joey Whitford:

“I think the reason that I drink so much iced tea is that it tastes okay when it comes back up.”

Nausea has been pretty bad lately. Other than that we’re just chillin. Still love being home. Looking forward to Kimberly’s sewing studio being totally set up; complete with napping/DVD watching corner for Joey. Who loves Raspberry Ann? We do, we do!

Did I mention it’s good to be home? There’s nothing like throwing up in your own toilet!

K & J

Repo Men

Joey is currently watching “Repo Men”, starring Jude Law and Forrest Whitaker. Premise: people buy man-made organs for exorbitant sums of money and adopt a payment plan, similar to a car or a mortgage. The catch? If the purchaser misses 3 consecutive months of payments, Jude and Forrest come to repossess the organ and put it in another person.

Anyone else think this is an interesting choice for a Wednesday morning film?

K & J

Life on the Homefront

Being at home is going okay so far, though it is taking some getting used to. Organizing meds, homecare, prescription coverage, and just adjusting to our new routine requires some…adjustment. Joey’s energy level is still quite low (pretty much the same as when he was in hospital), but we were able to make it out for a much needed fun night with some friends a couple of days ago. All told, we are still ecstatic to be home, though he spends much of the day sleeping. Hey, at least the cats are happy.
K & J

Denial Ain’t Just a River in Egypt

A lot of people have been wondering what the next step is with Joey’s liver transplant. Recap: looking for potential live liver donor matches was put on hold a few months back until an effective plan for managing Joey’s current pain had been worked out. One of the key docs who was pushing for the transplant to happen quickly had told us that Joey should be off of IV pain meds. Unfortunately, that is essentially what he has gone home on, since none of the other pain control options worked for him. Major bummer. We have been told that the liver transplant team’s biggest concern is their ability to control his pain post-operatively. Some doctors figure that this won’t be a problem, other doctors figure that it will.

As it stands now, donor testing is still on hold. We have an appointment with BC Transplant at the end of the month. Our hope is that shortly after this appointment, we will have an answer as to whether or not the BC Transplant team is willing to perform Joey’s liver transplant. That is a big question mark that quite frankly, is extremely stressful.

In the meantime, we are trying to burry our heads in the sand and live in denial. So far this is going nicely. We are happy that he’s home and that we get a break from the majority of the in your face hospital stuff for the next little while. Thank you to everyone who keeps themselves in the loop by checking cfsucks. We appreciate that you keep yourselves in the know, so that we don’t have to keep on rehashing this information with everyone we see. That in itself can be extremely mentally draining.  We love being at home, having the chance to get outside and breathe some fresh air while it is still warm, and do some low key visiting. Oh, and speaking of heavy denial – do not talk to us about fall either. It’s still summer until we say it ain’t. Even if Momma R did the Christmas draw last week. Damn her eager-beaverishness!

K & J