Yesterday Derek and I went down to Lahey for check-ups. I was due for my 3 month appointment which included an MRI and some blood work. They scheduled Derek for an appointment too for convenience. My surgeon was doing a live donor surgery so Maria booked Derek and I for the same time with his surgeon. I was sad to miss out on a visit with my doc, but happy that another live donor was saving a life.
The MRI lasted a bit longer than the first time I had one back in November, but it was uneventful and didn’t feel like a lot of time had passed. I got to have my MRI in the newest scanner which is in a large room that has a bright window at the end where my head was. It didn’t feel claustrophobic at all; it was nice to have so much natural light. After my scan we got a snack and then made our way to the clinic. After filling out my questionnaire–I’m part of a research study, so I fill out a questionnaire every time they see me–we both had our vitals checked and were led into an exam room. The nurse who checked our vitals brought us some water and we took a seat.
I have a nurse and Derek has a nurse. Plus the surgeon was there, an admin who wanted to say hi, and my nurse’s boss who I worked with post transplant. We were all stuffed in the exam room, yucking it up for a while.
Surgeon: Hi Guys! Dueling appointments! What are you drinking?
Logan: Water cocktails. The nurse brought them for us.
Surgeon: Really? She brought you water? [Turning to nurses.] This is what we do now?
Logan: We get special treatment now. We’re VIPs.
I’ve decided we must be VIPs. Finally we got down to business and the surgeon pulled up my MRI scans. He only had the photos, not the full report, but he was able to pull up my scans to show me what my liver used to look like, and what it looks like now. Sadly, the regenerated liver is not in the shape of a starfish. My liver now spreads across my entire abdomen and has a tapered end. It has also successfully shoved my stomach aside. It is no longer situated along the left side of my abdomen, it’s been relocated to a lower spot in my abdomen. This explains the wacky pains I used to get in my stomach post surgery. It was getting jabbed by my new super liver, the new bully in town. The surgeon told the nurse several times to make sure that she sent the final report from the MRI to me once it was complete. He knows that I am super interested in all of this, and I really appreciated that he insisted that I get all the information available to me. I’ll try to post that here when I get the results.
I also asked a couple of questions which were apparently hilarious:
Why is there more hair on my stomach around the scar?
Surgeon: Well, I don’t think you look hairy. Maybe they shaved your stomach?
Nurse: We did not shave her stomach.
Logan: Isn’t that an old wives tale?
Surgeon: Well I don’t know, I wasn’t there, remember? I was busy with this guy. Uh, let’s see, sometimes people on anti-rejection meds grow more hair? But you’re not on those. I know! You could get one of those No!-No! hair remover things. Have you seen those on TV? [Laughing]
Logan: Yes, I have seen that thing. And no I am not doing that, just thought I’d ask. Next question…
Surgeon: I don’t even think that thing works, it looks like it just burns the hair off.
Logan: Yes, yes. I agree. Next question.
What is this weird chunk under my scar?
Surgeon: Let me feel. Hmm. Oh yea, it makes a weird clicking noise. Can you feel that? [Laughing.]
Logan: [gagging] Yes, I can feel that!
Surgeon: That is a plastic staple that hasn’t dissolved yet. It’ll go away. Hey, no tattoos today?
Logan: [I’ve been wearing Tattly temporary tattoos to Derek’s appointments, and we gave him and Derek’s nurse a few tattoos a while ago, but I didn’t put one on this morning.] No, I meant to, but we got up too early this morning for tattoos.
Surgeon: But you are wearing a neat anchor necklace.
I explained that the necklace was made by our friends at Beehive Handmade and that the anchor is a symbol of hope. Derek then showed off his anchor and said:
Derek: It’s also the symbol for suicide awareness, I think.
Surgeon: Ah yes, tie an anchor around your feet. That’ll keep you down.
The conversation then moved to a discussion of inappropriate symbols for suicide awareness, including cyanide, which prompted a 15 minute explanation of a Netflix documentary on Whitey Bulger he had watched recently. He gave us a very thorough rundown of the film until Derek finally said:
Derek: Is it time for my appointment now? How do my labs look?
Surgeon: Right! Yes! Let’s take a look. Hmm. Bilirubin is at 4.2.
Logan: What? This is ridiculous. Fix this. Fix this RIGHT NOW!
The surgeon asked Derek if he’d had a fever or chills, which he hasn’t. Then he verified all of Derek’s meds. He decided to try upping his ursodiol to two pills, twice a day to see if that would do the trick. Ursodiol helps prevent gallstones, which it accomplishes by thinning out the bile a bit. The idea is to up the dosage because it’s possible Derek has some leftover ‘sludge’ in his bile ducts. Their word, not mine. The surgeon assured us that it’s completely expected that his bilirubin will fluctuate and that it will stick around the 3-4 mark for a while. All of his other numbers are fine and he has no other symptoms of rejection or infection, so they are really not concerned. But we don’t like it. We want that stupid number to get in line. He told us not to obsess over the number and also told us that there’s a chance it will never be a normal number. Maybe because of Gilbert’s, maybe because that’s just the way it’s going to be. As long as all of the other labs are good, and Derek feels good, it’s not something to get too worked up about.
Derek asked a few more questions, we talked about the surgeon’s new cycling hobby–he’s maybe a little obsessed with telling us about his new fitness regimen–and then his phone went berserk. Lights were flashing, and it was buzzing and chirping. Then his pager went off.
Surgeon: Hey! This is an organ offer. This is what happened when we got your liver.
He answered the phone and put it on speaker, so we could hear it. An automated voice rattled off some numbers, explained that one of his patients was flagged as a potential candidate for a liver, and asked him to confirm that he had received the message. He turned to the nurse and said:
Surgeon: This is probably for [name redacted.]
She nodded and smiled and I looked at Derek and we both smiled big goofy grins. Somebody might be getting a new liver tonight! The surgeon shook our hands and then said he needed to get back to work. Which led me to believe that we really are VIPs and he just enjoys sitting around talking to us. He was so amped about the call, you could tell. Transplant surgeons just want to do what they were born to do, save people’s lives. I think they’re truly happy when they’re all decked out in scrubs, installing new organs, giving people second chances.
I spent the rest of the day thinking about that phone call, hoping that someone is getting their forever liver tonight and will feel just as good as Derek does, very soon.