Heading Back to PR…Or Not

Today has been yet another overwhelming blur. Most of Joey’s transplant work up was done, but we don’t have our meeting with the the liver transplant team until May 10th. After that it will still take some time for him to get on the list, but at least most of the testing for him has been done.

He is still in pain and we are told that there is nothing that can be done about that except a liver transplant. Right now the plan is for him to head back to PR hospital because the doctor down here figures that pain can be managed in PR and there is nothing left for them to do in Vancouver at this point.

Joey was supposed to be air ambulanced home tonight, but we just found out that the plan is now that he will go to PR hospital in the morning. I guess we’ll see what tomorrow holds; things seem to change pretty fast.

I’m chilling with OJ tonight. Can’t wait to sleep on a good old fashioned pull out couch instead of one of those fold out hospital chairs. What a relaxing evening!


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,


Pause for Thought

ERCP was done yesterday afternoon. Still having pain; they might do an ultrasound today to check for abcesses on his liver and then drain them if they are there.

Got an opinion yesterday from one of the liver transplant surgeons that is giving us pause for thought. Not quite ready to cast it out on the website yet; we are still processing and getting information before any decisions are made. So that’s what today will consist of.

Gotta get the boy some breakie and do some scurrying around. Peace ya’ll.


In Van

Transfusion went fine, INR is down enough for them to do the ERCP. Joey was air ambulanced out to Vancouver this morning, I was denied transport and have to drive down and meet him. Hopefully they are able to get him in for the ERCP this morning.


Blood Transfusion

The plan is for Joey to be air ambulanced to Vancouver either tonight or in the wee hours of tomorrow. They did some blood work this morning and his INR is high (which apparently means his blood is too thin right now for them to do an ERCP). They are giving him a blood transfusion today to try and correct this. (Plasma only, he thought it was important to mention that it isn’t whole blood…that makes a difference to everyone reading this, right?) Hopefully that will get sorted out today and they can go ahead and get the stones out tomorrow morning.

I’ll be updating the website as things develop and as I am able. Will keep everyone posted.


Sad News

Our friend Eva Markvoort passed away yesterday morning. Eva was waiting for her second double lung transplant; she had been experiencing chronic rejection for the past several months and had to be relisted for transplant. She died waiting on the list in BC.

Eva was a force in the CF community and a recent recipient of the Summerhayes award for her exceptional commitment to the CF cause. She was brave enough to open up her life to the world, both through her award winning documentary 65_redroses (in which cameras follow her through her wait and recovery from her first transplant) and through her no bars held blog: http://65redroses.livejournal.com/ She let the world into her life so openly and so thougoughly, helping those outside of the CF community come closer to understanding what it is like living with and dying from this disease; prompting  them to care about CF and transplant awareness. For this we will be forever grateful. We will miss her a lot. Her spirit lives on in the hearts of those who knew her and in the amazing work that she did for the Canadian Cystic Firbrosis Foundation. Our hearts are with her family and friends.

And now Joey. Another blockage and back in hospital again. He is expected to be air ambulanced out to Vancouver for another ERCP in the morning tomorrow. I’m about 80% sure that he has me talked into not going down with him this time (worried about missing work), but that could change at any time depending on how he’s doing. Right now he is in pain, but they seem to have it controlled at a bearable level. Momma R is on standby for phone calls with doctors tomorrow.

That’s where I’m leaving it for now because I came home to sleep and pack some stuff for him and I don’t want the helicopter to take off with him in it when I have his meds with me. Later.


For more info, or if you would like to make a donation to the CF cause, please visit: http://www.ccff.ca/

Joe “Camel” Whitford

Clarification for those of you who are wondering: Joey isn’t on the list yet. The first step in the process is for him to get assessed – i.e. have a bunch of medical tests done. We are still waiting to hear when those tests have been booked for.

In the meantime, Joey is trying to find creative new ways to disguise his jaundice. I asked him yesterday if he felt like whitening his teeth with me. He declined because he thought that if his teeth matched his eyes, his liver dysfunction would be less obvious. He is also considering taking up smoking so that his fingers match his teeth and eyes.

Still waiting to hear about a date for the sinus surgery as well. Last we checked, they hope for it to be booked for sometime in either April or May.

K & J

Free Trip to Mexico!

Thank you airmiles! I swear, they are how we are able to gain anything of value in our lives (with the exception of love). The only good thing about having CF is the ability to get 7 X airmiles on your prescriptions. When you’re on 18 different medications it tends to add up fast. And then you get a free trip to Mexico!

On the advice of our shrink (sorry Dr. O), we decided to cash in all of our airmiles and go on vacation, while Joey is still able to do it. Don’t want to sound too fatalistic here, but that could be the last time we are ever able to do that, so we wanted to have that memory. After he gets his pager our lives will be very restricted once again (to put it in perspective, we will need to stay within cell phone/pager range at all times so that he doesn’t miss the call. This even means no going up the lake. I know there are worse things in life, but f%*k).

Long story short, we wanted to go away while we still could and so we did. Here’s a summary of our trip to Cancun:

Day 1:

Fly in on the red eye, get settled into our room and nap. Get up for dinner at the buffet (sooooo good) and go back to bed. Aren’t we a barrel of fun?

Day 2:

We are awoken by a phone call asking us to come down to the front desk for a talk. When we arrive downstairs, we are brought into the manager’s office. She states that she doesn’t really know how to say this, but one of the other guests saw Joey at dinner the previous night, is convinced that he has hepatitis, and doesn’t want her or her kids to catch it from him by eating at the same buffet. Welcome to your vacation, hey? We confirm that no, he does not have hepatitis and point out the inaccuracy of this woman’s concern about how it is contracted. Manager is very apologetic, states that the other guest is crazy, and she appreciates our understanding. After we leave the manager’s office, we both wonder: “What if he actually had hepatitis? Would we have been asked to leave?” The rest of the day is spent reclusively in our hotel room. (Who wants to go anywhere when you are already concerned that you look sick and have now received confirmation that other people are disgusted by your presence?) We reluctantly leave the room for dinner again. The entire time is spent speculating on who the complainer might be and fantasizing about ways to confront her. I decide that I should purchase a journal so that Joey doesn’t have to listen to any more of my crazy ranting than is absolutely necessary.

Day 3:

First real day of vacation, in my opinion. Went to the beach, lounged around, had a quick dip in the ocean, ate a lot, danced, watched Joey play beach volleyball, and ping pong. Actually relaxed!

Day 4:

Hung around the resort. Beat out 10 people to win a darts game. Am quietly astounded that with very little prior practice I tend to be better than one would expect at sports involving light weaponry (BB guns in Cuba and now darts in Mexico). Joey naps, I lounge on beach.

Day 5:

Joey has headache and naps for most of the day. I lounge in room and on beach. Go on pub crawl starting at 9 pm. Antics ensue.

Day 6:

Go out on speed boat and go snorkelling. Joey gets out of water after about 5 minutes due to inability to breathe (it was cold), Kirstin snorkels until she is bitten by fish. Unsure of whether it had teeth, she quickly removes herself from the water and hangs out on bow of the boat until it’s time to head back to shore. Notes that the skin on right pinky finger has been broken, but figures it was worth it. Napped, then went to hilarious show at the hotel.

Day 7:

Attend basic Spanish lesson, extensive napping, squeeze in wee bit of beach time. Get talked into purchasing clay sculpture of ourselves [Calling Mr. (& Mrs.)Vain!]. After stuffing our faces yet again, go to another show at the hotel. Kirstin begins to feel sickish.

Day 8:

Last day in Mexico. Kirstin truly feels like garbage now and spends the majority of the day in bed. Joey picks up clay sculpture and speaks with hotel manager. Tells her that in the future, we think that she should not bring other guests into the issues of a complaining guest if there is nothing to be done about it (i.e. the whole hepatitis debacle). Hotel manager confirms that we would not have been asked to leave if Joey actually had hepatitis, but states that she had never encountered another guest quite that crazy before and wanted to put the issue to rest. Joey tells her that it definitely changed the tone of our visit and that he was more self-conscious and less eager to get out and do all of the things the hotel had to offer as a result of being roped into this other woman’s issue. Manager agrees it was a mistake to discuss the issue with us in the first place.

In the late afternoon, Joey plays in a beach soccer tournament while Kirstin lies on beach and watches. More napping, eating, and packing. Reluctantly leave Cancun on the red eye. It was a slice!