Thank you airmiles! I swear, they are how we are able to gain anything of value in our lives (with the exception of love). The only good thing about having CF is the ability to get 7 X airmiles on your prescriptions. When you’re on 18 different medications it tends to add up fast. And then you get a free trip to Mexico!

On the advice of our shrink (sorry Dr. O), we decided to cash in all of our airmiles and go on vacation, while Joey is still able to do it. Don’t want to sound too fatalistic here, but that could be the last time we are ever able to do that, so we wanted to have that memory. After he gets his pager our lives will be very restricted once again (to put it in perspective, we will need to stay within cell phone/pager range at all times so that he doesn’t miss the call. This even means no going up the lake. I know there are worse things in life, but f%*k).

Long story short, we wanted to go away while we still could and so we did. Here’s a summary of our trip to Cancun:

Day 1:

Fly in on the red eye, get settled into our room and nap. Get up for dinner at the buffet (sooooo good) and go back to bed. Aren’t we a barrel of fun?

Day 2:

We are awoken by a phone call asking us to come down to the front desk for a talk. When we arrive downstairs, we are brought into the manager’s office. She states that she doesn’t really know how to say this, but one of the other guests saw Joey at dinner the previous night, is convinced that he has hepatitis, and doesn’t want her or her kids to catch it from him by eating at the same buffet. Welcome to your vacation, hey? We confirm that no, he does not have hepatitis and point out the inaccuracy of this woman’s concern about how it is contracted. Manager is very apologetic, states that the other guest is crazy, and she appreciates our understanding. After we leave the manager’s office, we both wonder: “What if he actually had hepatitis? Would we have been asked to leave?” The rest of the day is spent reclusively in our hotel room. (Who wants to go anywhere when you are already concerned that you look sick and have now received confirmation that other people are disgusted by your presence?) We reluctantly leave the room for dinner again. The entire time is spent speculating on who the complainer might be and fantasizing about ways to confront her. I decide that I should purchase a journal so that Joey doesn’t have to listen to any more of my crazy ranting than is absolutely necessary.

Day 3:

First real day of vacation, in my opinion. Went to the beach, lounged around, had a quick dip in the ocean, ate a lot, danced, watched Joey play beach volleyball, and ping pong. Actually relaxed!

Day 4:

Hung around the resort. Beat out 10 people to win a darts game. Am quietly astounded that with very little prior practice I tend to be better than one would expect at sports involving light weaponry (BB guns in Cuba and now darts in Mexico). Joey naps, I lounge on beach.

Day 5:

Joey has headache and naps for most of the day. I lounge in room and on beach. Go on pub crawl starting at 9 pm. Antics ensue.

Day 6:

Go out on speed boat and go snorkelling. Joey gets out of water after about 5 minutes due to inability to breathe (it was cold), Kirstin snorkels until she is bitten by fish. Unsure of whether it had teeth, she quickly removes herself from the water and hangs out on bow of the boat until it’s time to head back to shore. Notes that the skin on right pinky finger has been broken, but figures it was worth it. Napped, then went to hilarious show at the hotel.

Day 7:

Attend basic Spanish lesson, extensive napping, squeeze in wee bit of beach time. Get talked into purchasing clay sculpture of ourselves [Calling Mr. (& Mrs.)Vain!]. After stuffing our faces yet again, go to another show at the hotel. Kirstin begins to feel sickish.

Day 8:

Last day in Mexico. Kirstin truly feels like garbage now and spends the majority of the day in bed. Joey picks up clay sculpture and speaks with hotel manager. Tells her that in the future, we think that she should not bring other guests into the issues of a complaining guest if there is nothing to be done about it (i.e. the whole hepatitis debacle). Hotel manager confirms that we would not have been asked to leave if Joey actually had hepatitis, but states that she had never encountered another guest quite that crazy before and wanted to put the issue to rest. Joey tells her that it definitely changed the tone of our visit and that he was more self-conscious and less eager to get out and do all of the things the hotel had to offer as a result of being roped into this other woman’s issue. Manager agrees it was a mistake to discuss the issue with us in the first place.

In the late afternoon, Joey plays in a beach soccer tournament while Kirstin lies on beach and watches. More napping, eating, and packing. Reluctantly leave Cancun on the red eye. It was a slice!

Pictures:

We actually had a good weekend. Yeah! No emergencies and it was sunny. Joey felt good enough to golf for the first time since August (with the exception of the Vegas trip) and we got in some Q.T. with friends. That said, he is excited for me to go back to work tomorrow because I make him “do too much shit” on the weekends. “Look! It’s 11:15 and I’m already dressed, showered, and on my way to do something. This sucks!” He can rest when I’m dead. And from Monday – Thursday between 9am and 5pm.

K & J

Yo yo,

Let it be known that this year’s golf tournie will be on Saturday, May 8^th at Myrtle Point golf club in Powell River. It is a 2 pm shotgun start; registration begins at 12:30. This year’s tournie will be 9 holes and as always, you don’t need to know how to golf to play, just how to have a good time (the format is Texas Scramble). Of course there will be a dinner and banquet to follow.

Proceeds from this year’s event will be split between our friend Ryan Bentson, who is currently in Toronto waiting for his new lungs and…us. It will help us with all of the medical expenses we have been incurring with everything that’s been going on: trips to Vancouver to get Joey’s liver assessed; and for after his transplant, when we will have move to Vancouver for a few months. Here we go again. Hur-freakin’-ray.

That said, we know it will be a fun event as always. More details to follow, but for now, save the date!

K & J

We’ve been back home for a few days and it seems to be sticking. Joey is in much less pain than he was while he was waiting for his ERCP. That said, he still has pain pretty much every day, in addition to his chronic pain. This comes from various sources: liver, bowel, and headaches with a variety of causes. He is doing so-so and will not get better (as in for real better) until he has the sinus surgery he needs (hopefully this will only leave him with his migraines and liver-caused headaches) and until he has a liver transplant. He is not listed for transplant yet; we hope that the assessment tests can be done by April, but we are still waiting to hear about dates.

Speaking of dates, we had a great double with Richard and Caroline on Saturday night. Went to Yuk Yuk’s and all three of the comedians were actually funny. It was so nice to get out and do something semi-normal. We miss semi-normal. But home and as-normal-as-we-can-be-for-now is pretty good too.

Kirstin and Joey

So this is what I have been reduced to: writing medical information on the backs of the sugar packets that come with “meal” trays because I can’t get it together to remember a piece of paper for when the doctor comes in to talk to us. The stints were both pulled and some sludge has been removed. No more stints were put in; it seems that they caused more problems than they solved and given the state of Joey’s liver, would continue to do so if they were reinserted. So out they will stay.

The doc said that if Joey gets more pain it is likely intrahepatic. Basically, what this means in normal-people language is that he needs a liver transplant. No surprises there.

He is reluctant to do more ERCPs, both because he figures that they won’t actaully solve anything if there are no blockages and because they can actually lead to infection (foreign objects inserted into someone who’s immunosurpressed – not good).

So what if Joey gets pain again? His first move would be to check for abcesses in the liver and then drain them if they are present. Can’t wait.

The plan right now is for Joey to be sprung today. He is in less pain than he’s been for the past week and he actually has an appetite! I am out forraging for food as we speak. (For some reason the cold, soggy waffles that came on his breakfast tray did not appeal to him. What a picky SOB). Hope everyone’s enjoying their Saturday brunch!

Kirstin

Greetings all,

Another ERCP was done this afternoon. We haven’t got a chance to talk to the doctors yet, but from what I hear the stints were removed. Can’t really tell if Joey’s pain is reduced yet though – he’s still pretty doped up.

Sleeping at the hospital tonight; hoping to catch the docs during morning rounds. Richard is in Vancouver right now, so we might be in for a good time tomorrow. Maybe he’ll cut down a tree in the heart of the city and we can have a fire pit beside the hospital. You never know. (By the way, I am completely serious).

And on that note, I’m heading upstairs to go to bed. More news when there is news.

Kirstin

Heading back to Van. Sigh. Joey needs another ERCP tomorrow. So we’re planted in Gibsons for the night and are catching the first boat over to the city to go and wait in emergency. Another day, another hospital. Hopefully they will be able to get him in and get it done quickly.

Not really sure why he needs another one so soon. Maybe the stints? Maybe something else; we don’t really know. Will post after the ERCP when we have more news.

In the meantime, we are enjoying the dusty rose curtains and pond-scum green walls of the motel we are in. Classy.

K & J

We are home. Hurray!

K & J

The ERCP came and went this afternoon. No stones or sludge this time. A couple of stints to help with drainage have been inserted. These haven’t really helped the problem in the past, but our fingers are crossed they will help now. But they probably won’t.

Apparently, the reason Joey is still having livery symptoms indicates infection and more widespread liver disease. He is on antibiotics for the infection. As for the liver disease, that’s why he’s being assessed for transplant. We hope that they can start booking the assessment appointments in March so that he can be listed for transplant shortly afterwards.

Hopefully we can head back to PR in the morn. Tonight we’re going to chill with a friend. Do a little laundry, eat a little dinner, play a little cards.

On a hilarious side note, it turns out that Joey basically will have a giant “J” carved into his chest/stomach. We learned today that the scar for liver transplants are in the shape of a big hockey stick. So couple that with the horizontal one from his lung transplant and you have some hilarious body modification.

Have a good weekend!

Kirstin and Joey

Talked to the liver doc today; he agrees that it is time to start looking at a liver transplant. He started filling out the paperwork today. In about two months we should get a package in the mail which details what tests Joey needs to do to see if he qualifies to be listed for transplant. If he does qualify (which he should), we start waiting again. And here we are.

Joey pointed out that after he gets this operation, he will have scars in the shape of a giant “T” on his chest and abdomen. He was thinking about trying to talk the doctors into doing one little extra slice to turn the scar into a “J”. Somehow I don’t think they’ll go for that.

I am going on a walk around the city to chill out. Mr. T is going to have a nap.

Peace out.

K & J