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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Hiking Wildcat Mountain(s)

After hiking the Franconia Ridge Trail a few weeks ago, I have been looking at longer hikes in the White Mountains to get more miles and build up more hiking endurance. On Monday and again on Wednesday, I ran 5 miles at ~8:20/mi pace and I could still feel some residual soreness before my hike Friday.

Even with soreness going into the day, I opted for the Wildcat Ridge Trail, which traverses up the 5 peaks (A through E) and is known as a “steep rocky hike.” My original plan was a little loose: either up and back to Wildcat A (9 miles, 3400′) or continuing on to Carter Mountain, and then returning the same way for ~12 miles (5000′?). It’s a grueling hike. Following the ascent, the Wildcat-to-Carter section is a quick 1000′ downhill followed by a steep hike up Carter mountain, just to turn around and hike the down-up to Wildcat and head back out.

I deviated from both plans. I got a late start (10AM) and parked at Glen Ellis Falls, crossed the road and started the ascent on the Wildcat Mountain Ridge, which is part of the Appalachian Trail. This section of trail was immediately an uphill grind. I had poles, but ended up carrying them in one hand instead of using them to hike. The AMC White Mountain Guidebook calls the Wildcat Ridge Trail steep and says it’s deceptively slow due to the rocky ascent. They weren’t kidding. Sections of the trail had 4×4 pieces of wood that were anchored into rock to provide steps since the granite provided no grip. This was additionally tricky because of the morning rain. This is definitely not a trail I would entertain in the winter – ice, rocks, and hiking don’t mix. Actually, thinking back on it, it’s not a trail I would like to do again in any kind of weather.

After around 2000′ vertical, I reached the intial mountain (Wildcat E) peak, and had a good view out to Mount Washington from the top of the Wildcat Ski resort. The rain clouds from the early morning were on their way out and the nice puffy cumulus clouds were hanging around the mountain peaks. I took a few pictures and slogged on. At this point it occurred to me how awful the descent down all those rocks were going to be at the end of the day. Hiking on, there were a few cols between the peaks of the mountains, providing additional opportunity to practice going up and down rocks. Somewhere in this section I passed two other hikers and I heard one ask the other: “Thru hiker?” And then a quick response of: “No”. I laughed at the thought of my day pack and relatively clean-shaven look being confused for someone who was on an end-to-end trek of the Appalachian Trail.

After almost 4 hours, I made it to the final Wildcat mountain (Wildcat A) and had climbed 3400′. I took time to eat a late lunch, and declared the view the best of the White Mountains so far. Some hikers really enjoy the Franconia Ridge Trail and corresponding views, but looking off the backside of Wildcat A was superior. It’s a partially limited view, but includes a very steep decline, with Carter Mountain on the opposite side of the notch. At the base of the notch resides the Carter Hut and a lake. I had a feeling like I really was standing on top of the world, with Carter Hut below my feet, and Carter Mountain and the untouched mountains to the South at my fingertips.

At this point, I was left with a decision: hike the 3-4 hours back the way I came over the rocks and down the steep sections or continue down the AT and out the 19 Mile River Trail to the road and traverse the 4+ additional miles on the road back to the car. Hiking up Carter Mountain was out of the question. Although it was only 2pm, I started getting concerned about getting home at a reasonable time. I decided on hiking down the AT, followed by a hike out the 19 Mile River Trail for a few reasons:

  1. I was not looking forward to going down steep rocks.
  2. Although it was longer and involved hiking along the road, it was an easier hike.
  3. The trail was also unknown – that appeals to my sense of adventure.
  4. I could always hitchhike back to the car if all else failed in the last 4 miles.
  5. Finally, I was on a portion of the Appalachian Trail. I checked off this section from my imaginary list, and eventually I would have to hike the steep descent or ascent if I were to complete the AT (someday). Continuing on the trail was saving my future self from repeating the Wildcat Ridge hike or requiring a hike up the steep section to my current peak.

And so I continued down, down, down. The remaining hike was uneventful. It was a peaceful hike along the river down to the road. After the 9 mile hike, I continued the last 4+ miles back to the car, passing the Mount Washington Auto Road and stopping for a brief moment at the Pinkham Notch Visitor Center to rest my weary legs. I finally made it back to the car after 7 hours and a few minutes. Total distance: 13+ miles (I think), and 3800+ vertical feet. Although the road was extremely boring, I’m certain I made the right choice on the hike down.

Saturday and Sunday, my legs were very, very tired. My glutes were still sore, and I started feeling shin splints. This hike was brutal – I was surprised that I have more sore muscles after this hike than I did after the 9-ish mile Franconia Ridge Trail. Or, maybe it’s the same, but time heals all wounds.