Tag Archives: Organ donation

#TGA16CLE

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Derek posing for me just before his 10k.

After a very busy week in Cleveland we have arrived home victorious. Here’s a silly video that provides some highlights, and/or you can read a recap of our events below (click on photos to make them big):

Password: livelifegivelife

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Liver Allocation Changes Concept Paper

When I was in the hospital waiting at the top of the liver transplant list, no one thought it would take three weeks to find an acceptable donor. One surgeon had worked in Florida and told us that in that state, I would have been almost guaranteed a transplant the same day. I found out first hand the geographic discrepancy that exists in liver transplants and am thankful that I was able to survive. Steve Jobs traveled from California to South Carolina to receive his liver transplant because of these allocation differences.

The OPTN/UNOS Liver and Intestinal Organ Transplantation Committee has come out with a concept paper to reduce the geographic variation in liver transplantation. They’re looking for input from the community on their concepts and methods by July 11 and will have a public forum in September.

If you’re interested in reading about liver allocation changes and can provide input, you can access the paper through this link: http://optn.transplant.hrsa.gov/ContentDocuments/Liver_Concepts_2014.pdf

A quick summary from the paper:

“The Liver Committee has investigated a number of approaches to reduce geographic disparity….A leading method under consideration, as an alternative to existing local/regional liver distribution, is distribution based on districts that were mathematically optimized to reduce the variation in the median MELD at transplant….A series of maps have been generated using mathematical optimization techniques designed to decrease geographic disparity based upon criteria identified by the Liver Committee.”

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Support Organ Donation From the Comfort of Your Sofa!

Our friend Jim Dowd is racing for a great cause this August: The Chris Klug Foundation. Here’s a link to his fundraising page and keep reading for all the details!

Jim’s CrowdRise Fundraising Page: Leadville

Somewhere in the neighborhood of 14 years ago, I met our good friends Jim and Sandi. Our mutual friends, Bruce and Mike introduced me to them and we’ve all been friends ever since. I remember thinking more than once in those early days that I wished I could be as fabulous as Sandi, and that I would someday find an amazing man like Jim. In 2006, I was with Jim and Sandi in Cambridge, MA when Derek called to ask me on our first date. I eventually introduced them both to Derek–I think that’s when Derek’s nickname Sheet Rock was born–and Derek developed a massive man crush on Jim, and really, who could blame him?

During the past few years we’ve had the pleasure of cheering Jim on in his many athletic endeavors:

  • We joined a team of supporters to scope out a great spot in Brookline to watch Jim run the Boston Marathon, which he did to support the Rett Syndrome Association of Massachusetts and his sister who has Rett Syndrome. He successfully raised $5245 for RSAM and finished with a time of 4:04:09. Which is crazy impressive considering the 2012 Boston Marathon was the SUPER hot one.

Jim Marathon

 

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Livernalia: The Sequel

Apparently when you write a comprehensive post about mean waiting times for patients with a virtual MELD  score of 40, you get to have a new liver.

At 5:00 am Derek was wheeled into surgery by his surgeon, 12 hours after we were given an inkling that a viable liver was in play. We were told to hang tight, Derek ate a pizza, I settled in for the night. At 8:00 pm the orders came in that he was to have nothing by mouth. By 9:00 pm he was getting blood drawn, a chest X-Ray was ordered and an EKG. Derek drifted in and out of sleep, I stared at the moon outside his window.

EKG squid is attached. Hail Hydra. (I'm punchy. Sorry.)

EKG squid is attached. Hail Hydra. (I’m punchy. Sorry.)

At 4:00 am the nurse called to say she was told he’d be getting a ride down to the OR at 4:45 and Derek needed to scrub up. Which he did. His surgeon showed up on time, gave Derek more papers to sign and assured him it was a fine looking liver. The two of them joked back and forth like old friends. I rode down to the OR with him, the hallways of the hospital were dark and quiet. I was left behind at the doors to the OR and watched as Derek chuckled at some joke his surgeon was telling him.

I said, “Good luck.”

“Luck isn’t really a factor.” He said.

“Right. Force of habit. Good science.”

I heard his surgeon ask what I said, and Derek repeated, “Good science.”

Good science, indeed.

I’ll make a new post when I get updates, and I’ll keep updating it as I get info.

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Yes, It’s Crazy

It’s about 30 hours since a new liver was put inside me – I’m writing this post Tuesday night.  Things were a little crazy.  I’m going to be very brief in this post, but we’re so happy things are going well. Both of us are in a little pain from the stitches and liver mid-sections, so it makes it hard to breathe. Monday night we stayed in the Post anesthetic Care Unit, but were not within eyesight of each other.  It kind of seemed high-school dance-ish when the nurses wheeled Logan’s bed over to me to say hi.  It was this first time I’d seen her after surgery.  We were both very loopy, delirious and don’t remember much of it.  And, although Monday night was relatively quiet, I cat-napped a little and I’m sure Logan didn’t get much sleep either. Yesterday we were trying to catch up on some zzzzz and recover. Logan was the first to make a leap in recovery and moved from the bed to a chair.  I’m told by my the nurse that the same thing will happen to me tonight.  Logan started drinking liquids, and will likely start solid foods shortly once the intestines come out of shock.  I’m still “eating” blood transfusions, plasma, platelets and saline they’re injecting into my arms.

As was stated in an earlier post, the first 24 hours are critical for the graft. Logan’s liver, although perfect in every way, is on the small side for my body. They have been monitoring all fluids entering and leaving my body and periodically monitoring blood levels.  I’m told they spiked initially, as expected, and are now on the downward trend like they expect to see.  The doctor’s seem pleased with Logan and my progress, and Logan’s liver graft inside of me.  There’s a lot more monitoring that will go on to ensure the graft is tracking alongside their expectations, and Logan and I start to participate in our own healing by working the ab muscles they cut through and getting back to eating solid foods and protein to help the liver grow back to 100%.

It’s amazing to be part of this process – these surgeons are the best of the best, and work at the hospital that has done the most live donor transplants in the United States.  We are their experiments; a group of 5 or more doctors crowd around the bottom of the bed and talk about us like we aren’t there. At the end of their intellectual discussion, they allow us to ask any questions and treat us like patients again. It’s a surreal experience – the surgeries and the outpouring of support we’ve seen.

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