Well, I've finally decided that it is time to close down this blog (or, more accurately, stop posting -- I'm not going to delete it). Earlier today I was thinking I would continue on for a few more months (so I could blog about the liver walk), but it's been 2+ years now and it is time to move on from this venture.
Thank you to everyone out there for all your support and encouragement. We've met some truly fantastic people through this blog and through our experience in general, and we're really grateful that the blog world introduced us to all of you! And even though we won't be posting anymore, we welcome e-mails and phone calls from people who want to talk about PSC and transplants.
Before I go, I do want to remind everyone to read my post from earlier today about the Portland Liver Life Walk. We would love to have your support and/or participation!
Monday, June 01, 2009
Portland Liver Life Walk update
I'm really looking forward to Portland's upcoming Liver Life Walk! As I mentioned a while ago, Molly and David from the American Liver Foundation's Seattle office asked me to help them coordinate the event -- and it's been great working with them. I'm hoping we get a huge turn out and raise lots of money (money that will go toward finding a cure for liver disease!).
Here are a few facts about the event, as well as some info the team Carl and I are putting together.
1. If you would to join Team Carl, or at least help us reach our goal (as a team we hope to raise $1,500), click here.
2. The walk is scheduled for the morning of Sunday, Sept. 13th at the Oregon Zoo!!! This is an absolutely fabulous location for an event like this. Participants receive free admission for the day of the event!
3. We have also put together a meetup group for the event. Find it here.
4. We really, really need volunteers to help us organize/coordinate the event! The time commitment is minimal (6-10 hours between now and the event date -- is there really anyone out there who can't spare 10 hours over the course of the summer??). Plus, volunteers will get to attend our very cool kick-off party (note: the party is family friendly, and though I can't reveal the details just yet -- trust me -- you won't want to miss it!!). If you would like to help out, let me know!
5. Carl has been asked to be the Walk's honoree, which means he'll be sharing his incredible story with everyone in attendance.
6. If you would like to help out by forming a team of your own, click here.
7. If you live in the Seattle area and want to participate in the Seattle Walk, click here:
8. Thank you to our friends Jennifer N. and Todd D. who have already joined our team, and thanks to our friend Renee for giving us our first donation.
Well, I think that's it for now. Thanks for contributing toward this important cause!!!
Here are a few facts about the event, as well as some info the team Carl and I are putting together.
1. If you would to join Team Carl, or at least help us reach our goal (as a team we hope to raise $1,500), click here.
2. The walk is scheduled for the morning of Sunday, Sept. 13th at the Oregon Zoo!!! This is an absolutely fabulous location for an event like this. Participants receive free admission for the day of the event!
3. We have also put together a meetup group for the event. Find it here.
4. We really, really need volunteers to help us organize/coordinate the event! The time commitment is minimal (6-10 hours between now and the event date -- is there really anyone out there who can't spare 10 hours over the course of the summer??). Plus, volunteers will get to attend our very cool kick-off party (note: the party is family friendly, and though I can't reveal the details just yet -- trust me -- you won't want to miss it!!). If you would like to help out, let me know!
5. Carl has been asked to be the Walk's honoree, which means he'll be sharing his incredible story with everyone in attendance.
6. If you would like to help out by forming a team of your own, click here.
7. If you live in the Seattle area and want to participate in the Seattle Walk, click here:
8. Thank you to our friends Jennifer N. and Todd D. who have already joined our team, and thanks to our friend Renee for giving us our first donation.
Well, I think that's it for now. Thanks for contributing toward this important cause!!!
Tuesday, May 19, 2009
Cold Hands, Warm Heart by Jill Wolfson
A few weeks ago, a publicist sent me a YA novel by author Jill Wolfson called Cold Hands, Warm Heart. I wish I had made a note of the publicist's name so I could call and thank her (I recycled the envelope) because the book was really, really good. Not that it was a literary masterpiece or anything (which to me is a good thing, because I am not really into literary masterpieces). It was just an honest, realistic story about a teen girl who needs -- and ultimately receives -- a heart transplant.
Unlike certain other books I have read about transplants, this one had the facts straight. I could tell the author did her research. She didn't have personal experience with transplants, but she got it right. I think this is so, so important (there are already enough myths out there about organ donation and transplants).
The book simultaneously tells the stories of Dani, the girl who needs the heart, and Amanda, the girl who becomes her donor. Amanda is a gymnast. She is injured in competition, and her parents wind up taking her off life support (doctors declare her braindead with no hope for recovery). The story gets really interesting when Dani and the other people who receive Amanda's organs start writing letters to Amanda's family to thank them for their gift. I won't give it away, but I'll just say that I can completely relate to much of the what went on as Dani went through this process. Dani also developed a relationship with a boy waiting for a new liver (he did not get Amanda's liver, however) while she was in the hospital. And I loved that character, in part because he reminded me of Carl (his humor, in particular) but also because the author really captured what it is like to experience liver failure. Like I mentioned before, she just got it.
Unlike certain other books I have read about transplants, this one had the facts straight. I could tell the author did her research. She didn't have personal experience with transplants, but she got it right. I think this is so, so important (there are already enough myths out there about organ donation and transplants).
The book simultaneously tells the stories of Dani, the girl who needs the heart, and Amanda, the girl who becomes her donor. Amanda is a gymnast. She is injured in competition, and her parents wind up taking her off life support (doctors declare her braindead with no hope for recovery). The story gets really interesting when Dani and the other people who receive Amanda's organs start writing letters to Amanda's family to thank them for their gift. I won't give it away, but I'll just say that I can completely relate to much of the what went on as Dani went through this process. Dani also developed a relationship with a boy waiting for a new liver (he did not get Amanda's liver, however) while she was in the hospital. And I loved that character, in part because he reminded me of Carl (his humor, in particular) but also because the author really captured what it is like to experience liver failure. Like I mentioned before, she just got it.
Wednesday, May 06, 2009
Liver Life Walk: Register today!
Registration is now open for the 2009 Portland Liver Walk! Click here to get your team registered.
We still need lots more volunteers, too, so if you would like to help let me know!
We still need lots more volunteers, too, so if you would like to help let me know!
Wednesday, April 29, 2009
Swine flu updates from the CDC
If you would like to stay up to date on the swine flu situation, check out the CDC on Twitter. Here's the link: http://twitter.com/cdcemergency
I do not advocate panic or fear (who knows, maybe this will all be over next week or even tomorrow), but we need to smart and cautious!
I do not advocate panic or fear (who knows, maybe this will all be over next week or even tomorrow), but we need to smart and cautious!
Tuesday, April 28, 2009
Should we worry about the swine flu?
I'm not even sure what to say about the swine flu. In some ways, I am concerned. But then again, things are often blown out of proportion. So, I'm not sure what to believe or how much to worry.
One thing I do know, though -- I wish the transplant center would contact patients by phone, mail or e-mail with a what-to-do guide. Should we stock up on masks? Get an anti-viral prescription just in case? Cancel trips? It would be really, really nice to get some feedback from our own health care providers on the topic (I know we could call them, and I might -- but what I am saying here is that if I were the person working at the clinic I would be sure to contact all patients because I know that would ease their concerns and it would also help avoid a huge number of panicked phone calls to the clinic).
For now, Carl and I are just continuing on with our normal ultra-cautious behavior and monitoring developments. Lots of hand washing, avoiding people who are sick, etc. Carl does work with a lot of people from Mexico, so if any of them come into town he'll have to stay away from them. We will also avoid anyone who has traveled to Mexico lately, and if things don't improve within the next few weeks we'll have to review our own upcoming travel plans (we're not going to Mexico -- just Denver -- but at this point we have no idea what could happen). And, I do have a friend I see frequently who is traveling to L.A. at the end of the week. I'll have be absolutely certain she is 100% healthy before I see her after her trip. So, in other words, there is not much we can do.
Admittedly, I waver between "this will pass" and "ugh, I am worried, what if Carl gets the swine flu and can't recover?" Ultimately, though, God is in control of all of this so we shouldn't really worry at all.
One thing I do know, though -- I wish the transplant center would contact patients by phone, mail or e-mail with a what-to-do guide. Should we stock up on masks? Get an anti-viral prescription just in case? Cancel trips? It would be really, really nice to get some feedback from our own health care providers on the topic (I know we could call them, and I might -- but what I am saying here is that if I were the person working at the clinic I would be sure to contact all patients because I know that would ease their concerns and it would also help avoid a huge number of panicked phone calls to the clinic).
For now, Carl and I are just continuing on with our normal ultra-cautious behavior and monitoring developments. Lots of hand washing, avoiding people who are sick, etc. Carl does work with a lot of people from Mexico, so if any of them come into town he'll have to stay away from them. We will also avoid anyone who has traveled to Mexico lately, and if things don't improve within the next few weeks we'll have to review our own upcoming travel plans (we're not going to Mexico -- just Denver -- but at this point we have no idea what could happen). And, I do have a friend I see frequently who is traveling to L.A. at the end of the week. I'll have be absolutely certain she is 100% healthy before I see her after her trip. So, in other words, there is not much we can do.
Admittedly, I waver between "this will pass" and "ugh, I am worried, what if Carl gets the swine flu and can't recover?" Ultimately, though, God is in control of all of this so we shouldn't really worry at all.
Wednesday, April 22, 2009
Coming this fall: The Portland Liver Life Walk
So, I have some pretty cool news to share! You know all my recent posts about the Seattle Liver Walk? Well, a couple of weeks ago I found out that the American Liver Foundation's Pacific Northwest Chapter decided to do a Portland Liver Life Walk this year (the first ever!) and they have asked me to serve as the event co-chair.
I am really looking forward to helping out with this fun and meaningful event. We needs lots of volunteers, so if you live in the Portland area and want to join in please let me know. Our first committee meeting is tomorrow at 4:30pm. Contact me, and I can give you details on the location (if you can't make it to this meeting, no worries -- you can still volunteer).
The date for the walk is still TBD, but I'll post the details as soon as everything is confirmed. And obviously this means that I personally won't be participating in the Seattle walk on Sept. 20th, but I would still LOVE to have our friends in that area team up and do the walk anyway (or, you can come down to Portland and walk with us here).
Also, hello to our new followers and all those who have e-mailed me in the past few days! I'm working on getting back to everyone.
UPDATE: Just found out the walk is Sunday, September 13th at Forest Park. Mark your calendar now! I am counting on all of my local friends to walk on our team.
UPDATE 2: I found out this isn't the first walk ever. It is the first walk in a few years.
I am really looking forward to helping out with this fun and meaningful event. We needs lots of volunteers, so if you live in the Portland area and want to join in please let me know. Our first committee meeting is tomorrow at 4:30pm. Contact me, and I can give you details on the location (if you can't make it to this meeting, no worries -- you can still volunteer).
The date for the walk is still TBD, but I'll post the details as soon as everything is confirmed. And obviously this means that I personally won't be participating in the Seattle walk on Sept. 20th, but I would still LOVE to have our friends in that area team up and do the walk anyway (or, you can come down to Portland and walk with us here).
Also, hello to our new followers and all those who have e-mailed me in the past few days! I'm working on getting back to everyone.
UPDATE: Just found out the walk is Sunday, September 13th at Forest Park. Mark your calendar now! I am counting on all of my local friends to walk on our team.
UPDATE 2: I found out this isn't the first walk ever. It is the first walk in a few years.
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