Renee’s List

No abcesses on liver. We have been told that basically there is nothing to be done about the pain except getting a liver transplant. Not quite sure how he is going to live his life and how it’s going to work when he needs IV pain control every 2 hours. Hopefully things will magically get better on their own. But I think realistically we are dreaming.

Now for the new news. The doctor we spoke with yesterday told us that because Joey is such a common blood type, there is basically no chance that he will get a liver the old fashioned way (through a deceased donor). He said that Joey will tick along and be fine, fine, fine and then suddenly be too sick to transplant and will die.

He strongly feels that we need to cast the net wide, ask our social circle for help, and hope that a good match comes forward to do a living liver (does alliteration make this less scary?) transplant. Yeah. I know. It is possible for a person to donate a portion of their liver to Joey and the donor’s liver will regenerate to approximately 90% of its original capacity. Like a starfish/salamander tail/worm. Obviously this is no small deal and entails both a large commitment on the part of the donor and some risk.

We were not ready to put this out there right away until we had time to think about it. Renee (J-dawg’s momma), on the other hand, was on the phone right away. Note to the citizens of Calgary: exercise caution if you head to her place for Easter dinner.

Today I was running around researching stuff and unfortunately, the original list had been paired down significantly. If you are thinking about donating, here are some of the criteria:

-You need to be commited. That said, you can change your mind at any time. It takes a long time to get assessed, so if they book a medical appointment on a certain day, it is important that you be there. Some of the appointments take months to get and can only be done in Vancouver.  If you start the process and then change your mind, we need to know right away so that the next potential donor can be contacted.

-You must be between 19 and 55 years old.

-Your blood type must be O. (It doesn’t matter if you are O positive or O negative). The good news is about half of all people living in Canada are in the O blood group.

-You need to be healthy, with no pre-existing health conditions. If you have a pre-existing health condition, contact Renee and she will find out whether or not it rules you out as a donor.

-You should lead an active lifestyle (if you don’t now it is still possible to get in shape for this if you start right away).

-You need to have a body mass index between 25 and 30 (25-27 is ideal – this means you will recover from the surgery faster). If you do not know your BMI, they can calculate it for you.

-You can’t carry most of your body weight around your middle (i.e. your gut).

-If you drink, smoke, or use illegal drugs, you need to stop. Even if you have one glass of wine a day after work, that is too much. It is still possible to be a donor if you say, smoke pot every day or have a glass of wine after work every day, but you need to stop doing this now if you want to donate.

-If you are female, you can not be a donor if you are pregnant (obviously) and you can’t get pregnant for 1 year after the surgery.

Other stuff you need to know:

-The biggest risks to the donor include potential bile duct leakage, infection, and pain (obviously). Statistically, there is a 1 in 500 chance that the donor could die, but that has never happened in Canada. The surgeon believes that this is not a risk to be concerned about. However, we think it’s better to have all of the info prior to anyone starting the process.

-We are told that although a female donor will do in a pinch, it is better to have a male donor. This is apparently due to both physiology and the fact that Joey would have less liver function from a female donor after his surgery (smaller liver). That said, a female donor beats the alternative. In a perfect world, it would be from a male donor who is approximately 6′ tall.

-It is estimated that the donor would be in hospital for approximately 10 days after the operation.

If anyone is considering donating a portion of their liver to Joey, please go to www.transplant.bc.ca and search “live liver donor” on the website. If you are still interested, we ask that you please contact Momma R @ reneerose@telus.net, or (403) 764-0616 (home) or (604) 414-5039 (cell). It is only possible to assess 3 people at a time and she is the keeper of the information, so if you ask for it, she will email more detailed info to you so that you can think about it. Then if we have 3 people that meet all of the basic criteria, the medical tests start, some potential donors get ruled out and hopefully we will end up with one that is a match that decides to go ahead with the surgery.

After the transplant (if he gets it), Joey would have an 86-90% chance of survival. That’s pretty freaking good. If he waits on the list in the traditional way however, it sounds like there is a pretty good chance that he will die waiting. This is very hard for me to write, think about, or even throw out there for someone to help.

I started doing the work up today, but if there is a better match than me, that can be put on hold. I asked the doctor whether me having celiac disease would rule me out as a potential donor; he said it is a “consideration”. Who qualifies is decided by the LRD transplant team as a whole, so he couldn’t answer for sure. Another reservation that I have is being separated from Joey and not being in the loop in the loop for the first week. I will do it if I have to, but the thought of not being with him every step of the way is really, really awful to me. But him dying is more awful.

One of the things Joey is finding hard is asking anybody to do this for him. He feels guilty that any of his friends who might not want to do this will feel pressured into donating when they don’t really want to. After years of making transplant related jokes, please don’t think that we’re “trolling” for donors if we give you a call to hang out. Only look into doing this if you really want to.

I am rambling now, so I will leave it at that. Very hard to write this standing up in the hallway beside the main entrance of the hospital. So there it is; we’ve cast it out. Any potential takers?

Love to you all whether considering or not,

Kirstin

9 thoughts on “Renee’s List

  1. Brandy March 31, 2010 / 8:44 am

    Wow guys, this is a big one. I really do admire you for being able to live out so much of your journey in the public eye, in front of all of us. I can only imagine how hard this is to think about, let alone type, let alone share with everyone you know.

    Isn’t it sad I don’t even know my blood type – I’m going to find that out first and then go from there. I do not think this request is too much to at least ask everyone you know. What a gift to be able to give you both. We are all given these choices every day whether we are aware of it or not – I guess some decisions seem more immediate than others – (buying fair trade or sweat shop free items to help ensure people making the stuff we ‘need’ are safe & stay alive maybe seems less immediate in our life whereas offering someone we know part of your liver seems so immediate – I know they seem disparate but these choices aren’t so far off on the scale of ethical decisions for me).

    Maybe that seems out there and maybe I typed that because what else do you say? What I need to say, privately or publicly is “I’ll consider it” that’s the first thing I can say.

    The second thing I can say is, please just say the word and I’ll spread this among everyone I know. If you’re comfortable with extending this beyond your network I’ll be there to help just let me know.

    Thinkning of you both!

    Brandy

  2. mycatisnottoofat March 31, 2010 / 12:57 pm

    This is possible! This is something we can do! Getting a double lung transplant was the hard part, THIS is something that WE can make happen.

    Can I share this post?

    • kirstin March 31, 2010 / 9:57 pm

      Everyone can most definately share this post.

  3. kevin March 31, 2010 / 11:52 pm

    I think I’d be willing to do this….actually I definitely would. Will check blood-type tomorrow.

    I’m a bit skeptical about the quality of my liver, though. It’s processed a drink or two in its time. 😦 But, the last couple months I’ve not had much at all (and could obviously stop entirely now)…so if livers are quick healers, then maybe mine would meet the grade?

    At least, if I’m the right blood-type, you’ll have a name for the list. Probably a better candidate beats me in the “round of 3”, but I’ll at least enter the competition.

  4. chrissy April 1, 2010 / 9:19 am

    Dumb question. What’s the easiest/fastest way to get your blood type checked? I know they can tell you when you donate but do they tell you right away? Is it better to go to the doc and get a blood test?

  5. Brandy April 1, 2010 / 9:33 am

    Chrissy – I just called the Health Line to check. Apparently all you have to do is go to your Dr and they should be able to order the test from a lab. Or if you donate blood at Canadian Blood Services and they will tell you then.

    Has anyone started a Facebook page? I am not linked in with many PR people so I don’t know if I am best to do it however I would gladly take it on – Kirstin – what do you think? (PS I haven’t responded to your email because I stayed up all night to finish my thesis – I’ll write back as soon as I get this thing printed out!)

    Hugs!

  6. mycatisnottoofat April 1, 2010 / 12:16 pm

    I’ll start the Facebook page. Unless it’s already been done???

  7. kevin April 1, 2010 / 4:33 pm

    ahhh.crap. My blood is AB-positive. Compatibility fail 😦

    Some more info for the rest of you: Brandy is correct that your doctor can requisition the lab test, but then you have to pay a user fee. I didn’t ask how much, but it is not free.

    If you have ever donated blood before (in Canada), the Canadian Blood Services should have your blood-type on file. They didn’t seem to have a problem with disclosing the info over the phone, so that’s the quickest/easiest way to find out if you are in their records. And, obviously, free is good. Their number is 1(888)2-DONATE

    Sorry i couldn’t help ya, Joey. But someone will 🙂

  8. Laura April 5, 2010 / 5:31 pm

    Hey guys it’s Laura from Vic…I only just heard earlier this week that Joey is having trouble with his liver. I am so beside myself over this whole thing. I read all the posts and it still never ceases to amaze me how positive you all remain.

    I wish…I wish…I could help. I would do it in a heartbeat (actually faster, but you get the drift). I am already a donor of body stuff (and not blodd…it’s a very long story) so just wish I could help here.

    Not only am I female, only 5’5” tall, but my BMI is only 21 and my blood type is A neg.

    F%#K!!!!!!!

    Please know that all my best is with all of you…I’m going to put my feelers out to my male friends.

    Much love,
    Laura K.

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