I finally got around to registering our domain name so you can now point your browser to: pragmatichepatic.com. If you go to the old address it will redirect so it’s all good.
Happy Independence Day! Here’s the latest from Lahey. Derek and I arrived and immediately ran into all sorts of old pals from the hepatobiliary department in the hall. We said our hellos, exchanged hugs, everyone said Derek looked amazing, which he does. We went for his blood work and one of the phlebotomists told him he looked great. That’s one of the best parts of being at Lahey for so long, people we don’t remember, remember us! Blood was drawn, second breakfast was consumed and then we made our way to the clinic. After filling out the standard paper work–Derek is now at 90% according to the questionnaire he filled out–and getting weighed–155lbs!–we went to an exam room to wait for the surgeon. The transplant nurse came in and chatted with us for a bit and then went off to find the doc. He arrived and we talked about how Derek was feeling. Derek said good and then asked:
Derek: Can I do crunches now?
Doc: Do you want to do crunches?
Derek: Um. Well. No, I guess not.
Doc: How long has it been since your last surgery?
Derek: 7 weeks.
Doc: Hmm. Well. Have you ever heard of T25?
He then launched into a sales pitch (not really) for the exercise ‘system’ T25. He prefers it to P90X because, as he said, “That guy in the P90X video talks way too much. Plus this you only have to do for 25 minutes!” He told Derek to work up to crunches, do some easy stuff first and build up to something more intense. He also recommended walking and riding a bike, all good things that will get Derek back in working order in no time. 7 weeks also means that Derek was in the window to have his last remaining tube yanked out. I say yanked, because that’s exactly what the surgeon did. A little snip of the tiny stitch that was holding it in place on the outside and then: yank! Or as he said, “Just like a bird pulling a worm out of the ground!” Bleh. The last remaining non-biological vestige of Derek’s time in the hospital is now gone. All that remains is the wicked bad-ass scar.
After that, he looked at the numbers. “Why is your bilirubin 3.4?” This is the surgeon that always asks these rhetorical questions when the numbers are not quite right. I say rhetorical, because, I don’t know Doc, why is the bilirubin 3.4? He asked if Derek felt good. Yes. Had he been sick in the last two weeks? No. He asked about the meds and we explained that the other surgeon was tapering him off of prednisone. He thought for a second and said, “Well. That could be it. Sometimes when you go off the prednisone the bilirubin will jump and then go back down. What else?” I asked if it was possible that Derek’s new liver had Gilbert’s Syndrome. Gilbert’s is a common and harmless condition in which the liver has a hard time breaking down bilirubin. “Huh. Maybe, I guess it could be Gilbert’s. We could check the donor’s files. It could also be nothing. We could check you next week and it might be 2. How about you get labs every week, we’ll keep an eye on it, and we’ll see you in a month.”
All of Derek’s other levels look spectacular, and his surgeon did not seem to be concerned, so we’ll just have to wait and see. Which is hard. We both really want his bilirubin to be normal and it’s hard to hear that it went back up, though in the grand scheme of things, it’s a pretty slight increase. Next week, Derek will head over to his local blood lab here in Manchester and they will run some tests and send them to Lahey. Then we left and had lunch at a new restaurant in Burlington called The Bancroft and it was de-freaking-licious. We highly recommend it.
In other news, the tumblr of goodness designed to amuse Derek is still going strong, but I realize that many of you may have maxed out on your social networking or whatever, so I’ve decided to compile a little best of recap on a weekly basis. Enjoy!
Week of June 30th – Best of Liver Lovers Unite
1. Derek really enjoys Hashtag the Panda
2. This was posted back in April, but we were just given the original drawings and I was reminded of how much I love this comic.
3. I really love the way this video explains the immune system in a very simplified way.
4. The tallest water slide in the WORLD is being built in my home town of Kansas City, KS. I’m intrigued and freaked out.
5. Science is just AMAZING!
The Derek Janiak Hepatobiliary Forum 