Living Donor: It’s Been A While

This is an outrageously long post, and I’m sorry about that, but I had a lot to share and this blog is as much for me as it is for all of you. So snuggle up with a warm beverage and I’ll tell you the tale of my hernia repair.

Long time readers of the blog may remember that I mentioned back in April, after my 1 year checkup and CT scan, that the surgeons discovered a wild incisional hernia had appeared. This was revealed to me thusly:

“Ok, here’s the CT scan, everything looks good…” *scrolls through my body scan* “Oh hey! Look at that! You’ve got a little hernia!”

“What? No. No I don’t.”

“Yes you do, it’s right there.”

“But I don’t want a hernia.”

“Well you’ve got one. I’ll fix it. We’ll put a little patch in there, I’ll fix you right up. It’s small. Which is good and bad. Easy to fix, but not so good if you manage to push your intestines out of that little hole.”

It was all laughs and yucks like most of our appointments with the band of merry medical professionals that saved Derek’s life. But it was slowly sinking in for me that a hernia meant another surgery. One year out from the liver transplant and I had mostly forgotten the pain of major abdominal surgery, but the memory of not liking the pain was still pretty fresh. This would be different. A little incision to put the patch in, no intubating, a day surgery. I’d leave with an ice pack and binder which is kind of like a dumpy looking corset with velcro. No. Big. Deal.

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Sixteen (and Fifteen) Months Post Transplant Status

It’s been 16 months (April 14, 2014) since I received a partial liver from Logan, and 15 months (May 13, 2014) since my second transplant.

A few milestones:

  • I ran my fastest 5K on August 13, 2015: Thanks to encouragement from my running companion and co-worker, Greg, I finished in a time of 22:38.3, which put me in the top 10% of finishers in the race. My pre-transplant (1998-era) personal record time was 23:41, so I am now on record as being faster post-transplant than I was pre-transplant!

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  • Lahey Hospital made an awesome video about our transplant story for their #PowerofTransplant video series: 
  • I have hiked 14 of the 48 four thousand footers in New Hampshire: Flume, Isolation, Jackson, Jefferson, Lafayette, Liberty, Lincoln, Osceola, Osceola (East Peak), Passaconaway, Tecumseh, Whiteface, Wildcat A, Wildcat D!  Our recent hike up Mt. Jackson was on August 8th:

https://www.strava.com/activities/364618941/embed/88f900f66508178ede1d089f208d65dd7c5d3fb3

Pre-transplant, I had doubts that it was possible to feel better post-transplant, but I keep feeling better and better every month. On one hand, the surgeries feel like so long ago, but on the other hand, it’s only been 15 months since my life was last saved!

Checkity Check-up

Derek and I went to Lahey yesterday for his check-up. All of his numbers look good, his bilirubin is at 4.2 (3 months ago it was 4.9), but again, all of his other numbers are a-ok so no worries there. Now that he is a little more than a year out from his 2nd transplant they’re starting to step-down his immunosupressants. This is a slow process and so they’re dropping his dose of Prograf from 4 pills, twice daily to 3 pills twice daily. He’ll go in and get blood work in a month to make sure his levels of immunosupression are still good. This is good news because immunosupressants are processed through the kidneys, and long term use of these drugs has been known to have a negative effect on the kidneys. So less is more!

The appointment went so well, Derek doesn’t have to go back for 6 months! Huzzah!

I also met with the chair of transplantation about my hernia surgery. I told her about an odd tender spot near the top of my scar (the hernia is down by the belly button.) She put me on the exam table and felt around a bit and then consulted the CT scan from April. She said there’s a chance I have another hernia up there, but it also might just be a thin spot in the fascia. The plan is to mark the hernia and that spot and then when I’m zonked out she can feel the spot more easily (muscles fully relaxed) and determine if it is indeed a hole that has formed up there. In which case I will get two small incisions along my scar. No hole? Just one incision and we’ll hope that the thin spot doesn’t turn into a hernia. She reminded me that I will be out of commission for a while; a week or so of recovery and no lifting for about 6 weeks. I am going to try very hard to be a good patient and not do anything stupid.

I’m planning on having the surgery in October, so Derek will be able to give everyone the report while I’m under the knife. Stay tuned for that!

We also went to the 6th floor to see our nurses and our PA. Hugs and smiles all around. We still marvel at how amazing the men and women who work on the transplant floor are. It’s so fun to see them while we’re healthy and happy and they seem genuinely thrilled to see how amazing Derek looks.

Vans Warped Tour and Organ Donation is #NotATrap

We were at the Vans Warped Tour on Tuesday discussing Organ Donation and generally talking to anyone that wanted to stop by the booth sponsored by Donor Dudes, the Chris Klug Foundation, and New England Organ Bank.

I brought along Admiral Ackbar, a gift from our friend Sean after his parents cleaned out his toys. We also had the game Operation to allow people to try their hand at surgery.

Organ Donation is #NotAtrap. @organ_ize

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I located most of the Star Wars themed T-shirts at the tour, and made sure Admiral Ackbar was reunited with the brand.

Thanks @loganpass & @derekjaniak and the whole team of DonorDudes volunteers at #warpedtour2015 in Boston! #lookingood

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More Admiral Ackbar at the @vanswarpedtour. Good showing of the Star Wars Tees.

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You can also see additional photos of Admiral Ackbar in our twitter feeds at the bottom of the page!

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