Much has happened since our last post. We went to Vegas for a few days. Joey made it by the skin of his teeth! He was in hospital for a few days prior to our departure (more stones and sludge in the liver, so he needed another ERCP). He was discharged from hospital 2 hours before his flight and was very happy to be on the plane.
He went down for a golfing trip; I went down because I am neurotic and wanted to be close at hand should something go sideways with his health. So we each did our own thing during the day and would then rendezvous at night. Works for me.
For those of you who weren’t able to see 65_RedRoses on CBC, it is now up on their website so you can watch it online. Here’s the link if you’re interested: http://www.cbc.ca/video/#/Shows/The_Passionate_Eye/ID=1333883430
It is a really good movie about CF and transplant. We highly recommend it.
Kirstin and Joey
Another note on 65_RedRoses. Our home girl Eva (the star of the show) is not having a good time right now. She is experiencing chronic rejection and is back on the transplant list waiting for another chance at life. The whole situation really sucks. She was having trouble breathing and had to be taken into hospital on Wednesday.
Needless to say, the girl could use some cheering up. Remember the cheer wall that you all helped to make for Joey when he was stuck in hospital after his transplant? Eva’s friends and family are creating one for her. Cards make people happy!
Here is your mission angels: please send some cheer to the following address.
217 Third Ave
New Westminster, BC
You don’t have to know her to send a card; she is a shining star in the CF community and our little star needs her days brightened right now. If you’re looking for something to say, consider the following suggestions:
Thinking of you
Wishing you well
Hope you get your transplant soon
This situation sucks
You are an amazing person
Don’t know you, but heard you needed some cheer
Thank you everyone in advance. Remember, her documentary airs on CBC’s the passionate eye tomorrow night. (It will also be repeated on Sunday, November 22nd). Well worth the watch. If you are interested in monitoring her current progress, here’s the link to her live journal: http://65redroses.livejournal.com/
Thanks to everyone again for their ongoing support.
Kirstin and Joey
Just wanted to alert you all to an amazing documentary about CF and waiting for transplant in BC. Click on the thumbnail for details.
Then register to be an organ donor: https://www.transplant.bc.ca/onlinereg/bcts.asp
K & J
Our Vancouver trip was more informative than anticipated. In order to get an idea of when we should start looking at liver transplant as an option, Joey is supposed to do a specific set of blood work every 3-4 months from here on out. Basted on his last set of numbers, it was determined that now is NOT the time to start looking at transplant. Goodish news; nice that he doesn’t have to undertake those risks just yet, crummy that how he’s feeling now is probably the best he’s going to feel. Also discouraging that out lives kind of feel like they’re on hold all over again. Waiting to start waiting…again. We’re trying to get in a more positive mindset, as wallowing is of little benefit and really, we could be much worse off. Thus ends the pity party…for now.
So enough with the medical stuff. We have been making a point to try and have more fun lately. Forced ourselves out for Halloween and had a blast with April and Keith. They all dressed up like vampires and I was a cowgirl, which totally did not fit with the motif, so we splattered on some bite marks and I blended in a touch more. Originally had dressed up like “’80s April”, but then we decided I looked too normal, so we had to switch it up. Wandering around downtown and checking out all of the costumes was pretty entertaining.
Just got back from the couv again. Our plans for the night entail laying in bed, watching trashy TV, and possibly making some new earrings (okay, that last one is just me). Now that’s my idea of a good time.
Hope ya’ll are keeping well.
K & J