The Kotex King

The transition to Joey’s new pain management plan started today. So far…so much the same, but that’s pretty much what we were expecting. It will take a few days before his long acting dose is switched over to the new med, then it will be a few days after that before we get the sense of whether it is holding him the same or if it needs to be adjusted. Then it will likely take a while so that things can be tinkered with and we know if it’s actually working. Slow, but at least it’s a step in the right direction. And if it ends up being the wrong direction, at least it’s a step and we’re not standing still.

He is doing well, other than still having two tampon-like absorbency tubes stuck up his nose, which are supposed to be removed on Wednesday. I do believe he is pretty excited about that. He’s also been quite tired due to the blood loss post-surgery. Apparently it will take a while before he’s feeling better. However, he did manage to make it out to my new pad for dinner tonight (house sitting for friends and have been making myself quite at home. Might have to buy them some new coconut body lotion upon their return. Or replace it with miracle whip from their refrigerator. Only time will tell). Point is that all in all, things are pretty good down here. And Leslie and Elaine shouldn’t have loaned me their house keys.

Night ya’ll.

Kirstin

Bull Honkey!

All is well considering. The docs are happy with Joey’s results along the sinus surgery front. He’s still pretty uncomfortable; pain from the surgery and packing in his nose to stop the bleeding. That’s gonna hurt coming out. Ouch! He also has one big stitch at the bottom of his nostrils. Kind of makes him look like a bull. Or Emma.

After he woke up he was dismayed to find that he has been moved out of the lounge and into another room on the same ward. Goodbye spaciousness! I find it pretty funny that there is still a no smoking sign on his bathroom door. Just in case he forgets.

Been sleeping at the hospital, on a mattress, on the floor, for the last couple of nights. Was too disturbed to go home the first night with all of the coughing/puking up blood that he was doing. After he coughed up a clot that was the size/consistency of what I imagine 40% of a heart would look like, I decided to stay, even though I was assured that he was doing well. Still not really cool with him being on a normal ward after that. Anyway, all of that subsided around 2:30 am Friday morning and he’s been feeling pretty good considering. A few headaches, but I guess that’s to be expected.

Heading to OJ’s to exercise, shower, and change my clothes now. Good thing leggings can double as PJ’s!

K & J

Garfield Whitford

FYI: the lasagne went over very well.

Not up to too much today. Surgery is booked for tomorrow afternoon. Can’t wait for that to be over. That’s where we’re at.

K & J

Whoops

It seems that we might have unintentionally offended a few folks with our last post. Rest assured, our caution was not meant as a diss to anyone, or to knock the usefulness of the facebook group (posts are usually taken directly from cfsucks and it helps to reach a wider audience than we’ve been able to with our website alone). We love the facebook group; it’s very handy. We just wanted to warn people to be cautious about the conclusions that they draw from either reading or hearing any other info than from cfsucks or from speaking to us directly. Over the past few years, we’ve found that our lives can, at times, come close to approximating a game of telephone, where information can unintentionally be misinterpreted when it’s passed from one person to the next. Basically, we just wanted to convey that in spite of some disappointing circumstances, we are okay. That’s all. No need to send condolences at this point. We’re fine and definitely didn’t mean to offend any members of our support network. You guys are awesome.

Moving on: Elaine made lasagne for dinner. Meat lasagne. Joey is excited.

K & J

We’re Okay.

Okay people, take a deep breath and calm down.

Obviously, I need to provide some more background info to the current situation. Here is a recap: Joey is not on the list for a liver transplant yet. It’s not that he was taken off the list; it’s that he is not on it yet. He just finished his assessment at VGH to see if he would be a suitable candidate for liver transplant. At this point, the liver transplant team has decided that he is not on the basis of two factors:

1) His pain med situation

2) His current liver numbers

When VGH tested his blood, his liver looked like it was doing better. When it was tested the following week at St. Paul’s, his liver sucked again, hence the last ERCP. This is the nature of the disease. Some people in positions of power get hung up on the number; others take the whole picture into account (i.e. number of ERCPs, pain, and quality of life). A decision about whether to list a patient for transplant depends on the consensus of the team as a whole. Transplant is a big deal, especially when you are looking at live donation because it affects the lives of the donors as well.

The door to liver transplantation is not closed forever. Do not panic. As a policy, donor suitability is not assessed until a person is on the list for transplant. So essentially, prior to this point, they were doing us a favour by assessing the suitability of the donors. Things being on hold is disheartening, not catastrophic. All of this switching back and forth is really hard for everyone emotionally. He needs a liver transplant, but not yet; time to be referred for assessment; live donation is the route to go; time to start assessing donor suitability; time to stop assessing suitability for now because things are on hold. All of that takes its toll. That said, in a few weeks, the transplant team is open to looking at Joey’s case again.

Another thing to consider is that the transplant team is responsible for making life and death decisions for several people and they need to prioritize who is the sickest. If Joey was the sickest and someone who was healthier had the testing on their donors done before him when there was an option to do it another way, I’d be pretty pissed. It’s tough, but I am trying to keep that in mind. I feel really bad for the donors with all of the changes in plans though. It’s pretty hard to take.

Now for some frustration that we have been experiencing with policy. The narcotics are an issue for the transplant team, especially the IV narcotics, which is unfortunate because that’s how Joey’s pain is being controlled at this point. The reason that the transplant team has this policy is because there is a critical shortage of organs in BC, so they need to prioritize not just who is the sickest, but who will look after their new organ the best and take the fullest advantage of their second chance at life. Unfortunately, many people who abuse drugs can end up needing liver transplants. So policies about narcotics, particularly IV narcotics, have been developed by the transplant team to ensure that the people who are receiving liver transplants are very serious about looking after their new organ. Frankly, lots of people die waiting for transplants, so the transplant teams need to look at each case carefully when they are prioritizing people. If you want to register to be an organ donor and give others a second chance at life, please register at: www.transplant.bc.ca (you can check your registration status on this site too).

Obviously, Joey is on pain meds because he is in pain and it is necessary. However, the team wants to adhere to the policies they have in place to safeguard the distribution of organs. The pain specialists Joey is seeing are confident that after his sinus surgery, they will be able to sort out a pain regime that is closer at falling within the guidelines of the transplant team. Good. There are lots of options to try. Good. If we get to the end of all of those options and none of them work and they attempt to deny Joey based on policy, then we will kick up a huge-ass stink. That said, Joey has some strong and reasonable advocates both on the team who is making the decision and outside of the liver transplant team, so I don’t think it will come to that. Hence the lack of panic on our parts. We are frustrated by the situation, but not panicking. We also do not want to do anything to jeopardize the support we have from the medical personnel who are currently in favour of him getting a transplant.

In spite of the frustration of things being on hold, we are actually doing all right. Now that the pain team is involved, Joey is feeling better than he has since he went into hospital at the end of March. We went to a comedy show last night and have been doing a lot of visiting with some friends who we haven’t seen for a while. His room is actually bigger than our living room at home. It is quite hilarious. April, Keith, and Emma brought in a few games, so we are able to host in style. The management of his pain is improving, but the type of pain med he is on will need to be switched after his sinus surgery, so that will set things back a bit. Basically, he will be starting from scratch on a new med. Frustrating, but we are trying to make the best of things. We’re good at that.

Gadzooks this is a long post! (this is taken from my parents’ list of acceptable swear words). The shitty thing is that we’re not done yet (oops, I regressed). We also wanted to urge people to be wary of what they take away from facebook. Although it is very useful in some instances, it also seems to be a place where people can vent freely and it’s really easy to get freaked out and riled up when you read stuff like that. For first hand info, please check www.cfsucks.com I am told that it is usually obvious by the tone of our posts when it is time to panic.

That was long. Here’s a summary:

1) Joey is not on the list…yet. That is something we are working towards.

2) Sinus surgery is on Thursday.

3) New pain management strategy will start after Joey is stabilized after his sinus surgery. It will likely be a while before his dose is stabilized, but the pain team is confident that this will be possible.

4) We will contact the transplant team and ask them to decide whether he is a candidate for liver transplant after his new pain med is stabilized.

5) Depending on what they say we will go from there.

6) We are okay.

7) I talk like a sailor.

8) Beware the evils of facebook.

9) We love you all. Mwah!

K & J

On Hold

Yesterday we had some disheartening news, but we think that things are going to be okay…eventually. The liver transplant team has decided to put Joey’s file on hold. At this point he is not on the list for liver transplant and all testing on potential donors has been stopped for the time being. Their reasoning for this is based on the type of pain meds he is currently taking. It is a decision based on policy, not on the feasibility of actually being able to perform the transplant.

Obviously, we are disappointed by this, but after talking to the pain doctors here, we have hope that some type of acceptable pain control method can be sorted out. And if not, we will get our ducks in a row to make our case against this policy. But our hope is that it doesn’t come to that.

So the course of events over the next few weeks will be: #1) sinus surgery (new pain regime will not be able to be started until after the surgery on June 10th), #2) try to sort out pain control issues (this will likely take quite a while – minimum 1 week, maximum – after every possible option has been tried), #3) request that the liver transplant team reassess Joey’s case (they are open to doing this once the pain control issue has been sorted out). Hopefully things will go smoothly from there but if not, #4) kick up a hellofa fuss/get Momma R in the hizzy!

I guess we live in Vancouver now.

K & J