Thank you soooooo much to everyone who sponsored the Joey’s Angels great strides teams. Thanks to your help, $2462 was raised to help fight CF. It looks like our walkers in Powell River had a great time:
Kimberly and I had a blast in Van too. Looks like Bill’s not the only one with the Eva-red hair:
I cheated though. Mine will wash out. Although it was certainly an attention-grabber for the day! (Thanks as well to Tracy and Graeme for the Starbucks card. It was both fitting and delicious. I mean the coffee. I didn’t eat the card).
Love, love, love.
K & J
Still waiting to see the chronic pain docs at St.Paul’s to have some kind of new plan implemented. At this point, things are still the same on the pain front. The earliest a different pain control strategy would be implemented is early next week. However, last night we saw one of the acute pain docs. He was able to tell us that one of the proposed plans would not be a helpful option for Joey, so I guess that’s good in a way. Frustrating, but at least the options are being whittled down. Not that there were that many to begin with.
Tomorrow is the big walk (Great Strides). I am amazed at the support that my team and I have received and am happy to report that I am only $24 off the $1000 mark. Wow! Seeing that little thermometer grow makes me happy. The original Joey’s Angels team will still be walking in Powell River, starting at Willingdon Beach at 11:00 tomorrow morning. Goooooo team! The Vancouver contingent, “Joey’s Angels: the sequel”, will also be walking tomorrow morning. Still time to sponsor me if you’re interested:
The PR team is very close to achieving their goal (only 2% away!) If anyone wants to make a donation to the PR Joey’s angel’s team to help make this happen here’s the link:
Funds raised help to find a cure for CF.
Speaking of raising money for a cure, Joey, the fam, and I managed to make it out for dinner last night and we were able to meet up with some very special folks:
Janet and Bill; Eva’s parents. Note the color of Bill’s hair – he had just finished getting it coloured Eva-red for the walk tomorrow. This is in honour of Eva so that tomorrow there will be a red army at Great Strides raising both money and awareness for CF. We are all reddy for a cure.
K & J
Didn’t see a pain doc today, but I’ve gotta say: I love being back at the CF clinic where you just make a peep about something and other people are advocating for you. Phew!
Just to give you an idea. Note the absence of a bathroom and sink:
But the view’s pretty sweet
Fake, but still disturbing:
Found the non-smoking sign particularly amusing. Will try to contain myself:
K & J
Joey is finally at St. Paul’s. Success! He is currently residing in the old patient lounge (bed shortages), but at least he has a bed where he needs to be. Even if he has to piss into a carafe (no washroom or sink, but we managed to finagle a hand sanitizer pump), has no cupboards to put his clothes into, and random patients stop by to see if they can come into his room to watch TV (it was the lounge, after all). The pay phone and oxygen canisters in the corner of the room also add some character. Although I must say, it does feel a touch gas-station-esque with the payphone and all. Some photos would be funny, but alas, I’m not on my A-game.
Are anxious to see the new pain doctors. Would love to get the ball rolling on pain management. Will see what tomorrow brings.
Mood: significantly less grumpy. Hurray for the CF clinic!
K & J
Nothing much has been written because nothing much has been happening. Still at VGH; have moved rooms 4 times in 6 days. Waiting to be transferred to St.Paul’s.
In terms of pain control, 3 doctors have agreed on a plan that has yet to be implemented. I don’t think that anyone wants to make any changes with regard to pain control until Joey is moved to a different hospital. So we’re sitting here spinning our wheels. At least there is a plan, but we are really frustrated that things are taking so long to move forward. I would love to walk out the door, go home with Joey, and never need another hospital again. But that’s not going to happen.
This morning we saw a doctor on the transplant team who is quite familiar with Joey. It was reassuring to some degree, which was a nice contrast to the tail end of last week. The first issue that needs to be resolved before Joey can get a transplant is pain control. Without adequate pain control, he will not be able to get a liver transplant. That said, there is a plan at least. Again, you can see why we are feeling frustrated when the plan isn’t moving forward as quickly as we would like.
That’s where we stand. Feeling marginally more encouraged than last week when we were under the impression that transplant was no longer an option. At least we have hope. But we are still tried, frustrated, and exceptionally grumpy.
K & J
The last few days have been interesting to say the least. We have had a few visits from a few doctors, with different opinions. Some of the possible scenarios are pretty scary, but nothing is written in stone yet, so I am not going to speculate about various people’s opinions at this point. What I will say is that as things have gotten more frightening, our team in the Couv has grown correspondingly. Momma R flew in again today (that woman must be rolling in airmiles), Karley and Siarah are here now, April, Emma, and Keith are always here, along with our strong base of friends. We are very, very lucky.
Complex pain services met with us today and had a couple of ideas which could have potential. No miracle solutions, but at least there are some ideas. Unfortunately, nothing much happens over a long weekend, so not too much will be tinkered with until Tuesday. From there things will move slowly, but at least they will be moving. We hope.
Did I mention that we are really, really happy that we have an awesome support network?
K & J
Finally made it to Vancouver, although we are in a different hospital than originally intended. My fingers are crossed that the pain consultants will have some ideas, although I am not really that hopeful. So far the word seems to be: some “discomfort” is inevitable. This is frustrating. We are not expecting miracle cures. More along the lines of reducing the hardcore pain he is currently experiencing down to extreme discomfort. We would settle for that. For those of you with medical backgrounds, we would love for his 8 or 9 on a scale of 1-10 to be reduced to a 5. That would be smashing.
Am going to sign off now. Feeling pretty grumpy and tired. More when anything happens.
Usually I wouldn’t out our potential donors on the internet, but I’m told he did it himself on facebook, so what the hey? In steps Jackson. From what I can garner, the initial intake went okay and he is moving on to blood tests. Should we be concerned that we are entrusting Joey’s future to this guy?
Not a chance. Thanks for looking into whether you will be a match buddy.
As for the appointment on June 24th, it is still being held. Phew. I guess it will just go to whoever looks like they are the most suitable candidate when the time rolls around.
On a moderately amusing side note, the whole facebook thing cracks me up. Confession time: neither Joey or I are actually on facebook, I just hear what happens on there every now and then. Koren started the group so that more people would hear about our situation. I find it funny that people are talking and we have no idea what’s going on until the info is passed on to us. If there are any comments that you want Joey or I to hear for sure, your best bet is to post them on cfsucks because I update it daily. Perhaps we should step into the zeros (what’s this decade called?), but frankly, we enjoy living in the past and are obstinately stubborn. But I guess there are no real surprises there.
Received some disappointing news today. It turns out that our male donor isn’t a match. So we’re back at square one in the dude department. Thank you so, so much for trying. We love you.
This news has come as a bit of a blow. Not sure what will happen to the appointment that was booked for June 24th; whether it has already been given away to somebody else, or if one of our girls can use it. Hopefully I can get an answer on that tomorrow.
In the meantime, our next male volunteer is set to phone the living liver donor coordinator tomorrow. I really hope that things will work out, but honestly, I’m feeling a bit discouraged. After we got the bad news today, we looked through our list of volunteers again and I am shocked at the number of men who have been ruled out based on blood type. And it seems like the ones who remain are likely to be ruled out on the basis of some criteria or another. How is this possible?
We are still in PR, Joey is still in pain, and we are still waiting for a bed to open up at St.Paul’s so that he can see the docs from the pain clinic. All our bags are packed, we’re ready to go…okay, that’s a lie. The room is void of cheer, but we are still disorganized and have junk lying around everywhere. That’s how we roll. A trip’s not a trip unless you’re frantically scrambling to pack at the last minute.
Over and out for now.
Kirstin and Joey