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