I realize it's been a while. One of my best friends and I caught up with an old high school buddy of mine who is moving out of the area with his family. This was maybe two weeks back. he is a pretty quiet guy and we were in the car driving headed to a DC United game. I still distinctly remember him squeezing my shoulder and saying "Hey man, I read the blog, and appreciate the updates. It doesn't even have to be long winded. Just a short note to let us all know you're ok and what's up".
I'll do my best to hold myself to that, because there is always stuff going on and I would like to keep people better informed.
My MELD was increased from a 29 to a 31 effective on May 18th. It's good that my MELD is higher because it cuts the chances that someone can leapfrog me in my wait-list status. Having said that, I'm still waiting with no new calls or offers. There was no "A" blood type transplants done in the last week. My first transplant coordinator who was out on maternity leave may or may not be back, I'll know more in Mid-July. She's really cool though and it would be nice if she did return. The person who has covered me while my primary coordinator is out, is good too but it would be good to keep all the history.
Lastly, I've had lots of requests for people asking how they can help when the transplant occurs. For the first 2-3 days, I won't be able to talk, will be on ventilator likely, and pretty much a vegetable. There won't be a lot that people can do immediately as I'll be in the hospital for 10 days before home, but in the weeks following, we will. Our good friend Lara has setup a website (http://lotsahelpinghands.com/how-it-works/ ) that you can register with if you might be interested in helping. It will keep people organised so meals don't overlap and also so my immediate family can concentrate on our family unit and don't have to worry about logistics. See below:
If you are interested in helping in some way (having a meal delivered, mowing the grass while I'm not able to, helping Tessa take out the trash, providing money for parking (it's pay parking only which drives me nuts))
Go to our Community web address:
Lastly, I've had lots of requests for people asking how they can help when the transplant occurs. For the first 2-3 days, I won't be able to talk, will be on ventilator likely, and pretty much a vegetable. There won't be a lot that people can do immediately as I'll be in the hospital for 10 days before home, but in the weeks following, we will. Our good friend Lara has setup a website (http://lotsahelpinghands.com/how-it-works/ ) that you can register with if you might be interested in helping. It will keep people organised so meals don't overlap and also so my immediate family can concentrate on our family unit and don't have to worry about logistics. See below:
If you are interested in helping in some way (having a meal delivered, mowing the grass while I'm not able to, helping Tessa take out the trash, providing money for parking (it's pay parking only which drives me nuts))
Go to our Community web address:
- https://www.lotsahelpinghands.
com/c/729068/
Instruct the people you've invited to use the ‘Join this Community’ link to fill out the form which is a Request to Join the Community. Once they've done this, Whitey, Tessa, and Lara will receive emails stating that there are ‘Pending Members’. Members will be automatically notified and provided instructions for signing in to the Community.
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