Hi-ho, Hi-ho!

Another quick FYI: just wanted to let everyone know that we are getting your comments, but for some reason they don’t always show up for the public to read. But we still get them and we appreciate all of the warm thoughts, well wishes, and commiseration. We’ll have to speak with Koren and Brandy to find out what their special powers are and why everyone gets to read their comments. As for Lo and To, it seems that you two have lost your mojo. Perhaps this is due to some omniscient power frowning upon the prospect of Joey piling wood to heat your living room upon our return. I’m not saying that’s the case, but let’s consider it a strong possibility. Although I’ve gotta say, with the amount of food and hydro we used at your house as teenagers, I’m pretty sure we both owe you about 20 years or so of manual labour. Hi-ho, hi-ho, a’stacking wood we go!

K & J

Beat it with a Stick

Confirmation that what is likely going on is CF related liver disease. Joey’s enlarged, angry liver is producing gallstones due to his CF. To deal with this, we’re going to keeping going on as is and continue to treat it with ERCPs (as he has been doing for the last 13 years) until things get to the point where he needs a liver transplant. I do not want to be alarmist; we are NOT looking at liver transplantation right now. Eventually he will need one, but not yet. The plan is to go home and wait until Joey is feeling as good as he possibly can be (approximately a few weeks to a month down the road hopefully), have some blood tests done and then re-evaluate the situation at our next appointment with Joey’s liver doc (this will probably happen at some point in November).  

So that is where we’re sitting. Not exactly an ideal situation, but we will see how things go. Apparently Renee and I will have to put the kibosh on our plans to carve me up like a Christmas turkey and take out part of my liver since if it did come to transplant, in Joey’s situation he’d have to go with the “traditional” donor. Damn.

He is out of hospital now at least. We are coping by keeping a low profile at OJ’s tonight, watching movies, and we bought a few new articles of clothing that we don’t need. (Am I too old for skinny jeans? If so, too bad cause it’s too late!)

Last FYI: we’re not really in a chatty mood about the whole situation. By all means, if you have to ask questions, ask – we’d rather that than have rumours started – but both of us are feeling pretty burnt out and done, so we are choosing to bury our heads in the sand until that is no longer productive. I’m not trying to be terse, but that’s where we’re at and we don’t really want to open the flood gates. Hopefully everyone understands. That said, the situation is not hopeless. After all, he’s already had a double lung transplant. As it was explained earlier today: dealing with lungs is like dealing with wet tissue paper, whereas a liver could be beaten with a stick before it’s chucked in. (I am not making this up, I swear). Good to know.

Lucky I’m a chick who digs scars.

Kirstin and Joey

This Sucks

The MRCP showed that there was nothing obstructing the upper bile ducts. Since obstructions are now essentially ruled out, it implies that his jaundice (yellowness) is being caused by something at a cellular level. The docs figure that it is likely being caused by CF related liver disease (CFRLD). We asked what could be done about it; the only answer we have so far is a medication that he has been on for years. He’s already on a really high dosage of that, so basically there isn’t really a plan at this point. Extremely depressing.

Tomorrow morning the GI (=Gastroenterology, which = stomach doctor) team is going to consult Joey’s liver specialist to see if he has any other ideas. Hopefully they are able to get a hold of him. The prospect of Joey going home without a plan for making things better is not sitting well with either of us.

Will post again when and if anything else happens.

This sucks.

K & J

Test was done

Test was done today. Hopefully we will get some results that mean something tomorrow.

 K & J

Golf’s on

Allow me to elaborate. He’s at VGH (they can’t do ERCPs in PR). Nothing was found means that they didn’t find any stones (which are usually the culprit when his liver enzymes are out of whack and he’s yellow). There were also no signs of infection found. Apparently though, you can only see the lower bile ducts with an ERCP, so next week they are going to do a test called an MCRP (we’re told this is kind of like an MRI) to see if anything is visible in the upper ducts. Hopefully that will give some answers about what is actually going on with his liver. He’s out of emergency and on a ward now, but no tests will be happening until sometime next week.

We oscillate between feeling really bad and doing all right. Yesterday was the first day in quite a long time that he seemed to be in okay spirits (not bouncing off the walls, but doing okay). He’s frustrated, but not currently in pain and is feeling like now that we’re here and this is being looked into, we’re finally going to get some answers about what’s going on. Hopefully once we find that out, they can come up with a plan about how to make him feel better. Plus, golf is on today. Yip-freaking-pee. (Seriously though, it makes him happy).

That’s the skinny. Most likely won’t be posting again until late on Monday, if we find anything out by then. Will update as I get new info.

Kirstin

In Hospital

ERCP went, but nothing was found. Joey is being admitted into hospital tonight so that they can investigate what’s going on with his liver. That’s all we know at this point.

 K & J

ERCP tomorrow

ERCP is scheduled for tomorrow afternoon. Fingers are crossed that it will help things, but more likely it will take a while for things to get back on track. At least it’s a step in the right direction.

K & J

Banana-rama

So, you may have noticed that Joey is yellow. His liver is acting up right now (yet another common CF problem), so he hasn’t been feeling well lately. In order to facilitate clear communication about what’s going on, I’m reviving the online updates.

Not sure what the plan is at this point; will likely be yet another ERCP (go down his throat and scoop out the gall stones that his liver seems to be producing with an alarming frequency). No date is set for the procedure yet; will probably be in the next week or two. Until that is done, it is extremely unlikely that he will be feeling better. Symptoms include: jaundice (yellow skin and eyes), stomach pain, extreme chills, sleeplessness or overtiredness, major acid reflux, loss of appetite and lately unbearable itchiness (we’re talking ants in the pants can’t keep still itchiness here). Vomiting usually accompanies this too, but since he was discharged from hospital last time, he’s been lucky enough to avoid it…so far.

If anything changes, I will update the site. Otherwise, just assume that things are the same as when I wrote this post.

Hope everyone else is doing better than we are. Peace.

K & J

J-Dub

FYI for those of you that may be wondering: Joey seems to be doing better. He had a bit of a stint in hospital last week, but was discharged on Saturday. Hopefully things are back on track.

K & J