Tag Archives: Thankful

#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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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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General Thanks

The past two days are the best I’ve felt in a while. There are and have been a lot of ups and downs over the past 24+ days. There will be more crappy days coming up for sure, and it’s no easy ride. On the good days I can manage through the day, but still have muscle soreness, pinching in odd places and general discomfort. I’ve been trying to get my laps in around the hospital corridors and not sit in the same position all day. The calorie counting is a good little challenge to keep me occupied throughout the day. I still have a short attention span, so getting any long term tasks done is extremely difficult.

For everyone that’s posted on the blog, sent me text messages, email, carrier pigeons, etc., I’m very appreciative. I may not be responding, but I am definitely keeping up and enjoy the messages. These little reminders really help on the good days and the bad days. I realize just how many people truly care about what’s going on and want to help in some form or fashion. The messages are my motivation. I know of no other way people can help out or make this process any easier. I’m in a little time loop where my current liver is relatively stable and trying hard to get better, but still needs hospital support to get me to be fully functional. At the same time, it’s a waiting game for the surgeons to hear about “the perfect liver” and perform the operation. There is no timetable; it is out of our hands and impossible to predict. This is the hardest part: knowing that there is a solution out there but having no idea whether it will be today, tomorrow, next week, next month, or never. I’m fortunate to be in a stable condition at the moment so time is less critical. But, it still is a very hard concept to grasp, comprehend, and accept. I’m bound to this hospital until further notice.

Reading the comments on the blog, seeing an email or text, or knowing that all of you are participating in this journey through the blog is very touching to me. It helps me stay positive and allows me to look forward to our lives post transplant. Thank you all.

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Sunday Adventure

Yesterday, I asked my parents to bring me a b.good burger and a vanilla milkshake for lunch. I made the assumption they would be down at 1:00, it may have been wishful thinking since I was napping in bed and it was past 12:30. I roused myself out of a deep slumber, and felt exhaustion in my body. The covers were way too heavy. It really takes effort to roll to the side of the bed and sit up, but I needed to; I was expecting visitors. As I started to make these movements, the nurse knocked at the door, opened it and said that my parents already dropped off the milkshake in the fridge, and the b.good was on the table next to me. Dag-nab-it, I was late. I struggled to collect myself, and realized that I needed to make it through this day. I wasn’t as sore yesterday as I was the day prior, so I can’t be that sore today, right? Wrong. Still sore, but I need to move slowly to build muscle and rid my body of soreness. Sunday would prove to be another adventure.

We ate lunch, or rather, my parents watched me pick at the burger, making it about 1/3 of the way though the patty. I also used the  leftover chocolate shake as Carnation instant liquid, and added two packages to make it 350 calories of tasty-goodness. Then it was time to change the wound-dressing for the big adventure to the lobby and fresh air!

They disconnected me from ALL the tubes and wires and set me free for a bit! I climbed aboard the wheelchair, and got to experience going fast, i.e. normal walking pace, again. Then, a trip down the elevator where I really wondered whether I would feel a wave of vertigo, and then over a series of uneven carpets that jostled me even when they must have seemed minor to everyone else. Logan, I don’t look forward to the car-rides!

We made it outside!

FirstOutside2

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T-Minus 1

Tomorrow is a big day.  You can follow along with this website to get information on both our statuses, or doesderekhaveanewliver.com will give you the one word answer. Thank you everyone for the kind words, encouragement, and thoughts so far. Tomorrow, take some time out of your day to enjoy the sun and fantastic temperature for us.

Today is a day of reflection and anticipation. There are a lot of feelings swirling around in both our heads; the journey into the future that we both have chosen, and memories of the past with this disease. We both have said we’ve been training for this moment our whole lives and we truly believe what we say. It hasn’t just been since Logan’s transplant approval, or my transplant listing, or the initial diagnosis, but really and truly for all our lives. Continue reading

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