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
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
It’s not just from them poking around in there; he needs another ERCP. The plan is for this to happen on Friday. All right! Another IV! (I am trying the tactic of adding the exclamation points to undesirable news in the hopes it will make it appear positive). At this point, he should be getting close to breaking 50 ERCPs over his life! What a hero.
Enough with the cynicism for now. Happy Tuesday!
K & J
Sinus doc went okay today. Still no firm date for the surgery; should be sometime between March and May.
Went to Clearwater for the weekend to do some visiting. It was fun, but we’re pretty tired, so we’re just chillaxing tonight. Also, Joey seems to be more yellow post-ERCP than he was before. Not quite sure what is up with that, so he went for some blood work today and we’re hoping to get more info on that tomorrow. Maybe it’s just from them poking around in there? Who knows.
That’s the score for now.
K & J
We have been having a horrible time lately, to say the least. Joey’s sister Janeen passed away suddenly on the January 15th. The whole family misses her very much. We are also grateful for all of the support we have received during this extremely difficult time. I don’t know what else to say about it. We are stunned; we are devastated.
Joey is so-so health wise. Went in for another ERCP yesterday to have some more stones scooped from his liver and is heading back into the sinus doc on Monday. And so it goes.
That’s it for now. Apologies for not posting sooner; was trying to find the words. That’s the best I can do.
K & J
Hello out there,
Good news! Our friend Ryan Bentson and his family have finally made it to Toronto. He received his pager today and is now on the transplant list. Our fingers are crossed that he gets his call soon. (Ryan is our friend who we are donating last year’s proceeds from Chad’s golf tournament to). For those of you who want to help, donations are still very much appreciated. Ryan’s new address is:
- #901 77 Gerrard Street West
- Toronto, Ontario
- M5G 2A1
Not sure what’s up with the bullets, but you get the idea.
On a related note, I spoke with one of our good friends from Toronto yesterday. It’s been quite a while since we talked and she was out of the loop on what’s been going on with Joey’s liver. Hers was definitely the funniest reaction I’ve received when I said that it looks like things are heading towards Joey needing a transplant (reminder: this is not happening just yet). She got quite excited and asked if we would be moving back to Toronto soon. She then quickly followed this up by informing me that her new boyfriend was just a touch too short to be an eligible donor. Yes, we are demented.
In response to the whole us going back to Toronto, we haven’t thoroughly investigated that yet, but I assume we would be staying in BC this time. Sorry Ontario, your loss!
And on that note…K & J out!
