A Place Where Everyone Knows Your Name

Twice a month I attend a support group for post-transplant liver patients. I am not much of a support group kind of guy. I never attended any of the pre-transplant workshops. I thought that I was a lot younger and going through a very different situation than most of the people there. And to be honest, I wasn’t as prepared for the surgery and the subsequent recovery than I might have been if I had attended those meetings. And so, on my third week home post-transplant I went to Columbia to attend the support group.

My first impression was not a positive one. During the meeting, several of the patients complained of the hardships facing them. Some had a hard time financially post-transplant while others still had subsequent health issues after their upgrade like diabetes or kidney damage. Still in shock from the surgery and the sudden change in my life, I listened to these stories scared for the future. And yet, I was compelled to go back another time.

The next time I attended the meeting, the topic was completely different, focusing on going back to normal life even when you’re not the same person anymore. This time I was fascinated by the stories, listening intently to these tales of hardship and triumph. During that meeting, I also began to feel as if I was a part of the group, engaging in the conversation and sharing my own stories. Before that, I felt like an intruder, not truly a part of the group yet.

I now look forward to the Thursdays I can attend the meetings. Often you can feel alone in your struggles and triumphs post-transplant. We are all changed, whether we choose to acknowledge it or not. The support-group understands this, knows what it’s like not to sleep, to take twenty pills a day, to schedule your life around doctor appointments. And more than that, they know the miraculous change in strength, mind, and health that I now feel. They have all rallied around me like a second family, giving me helpful advice, looking forward to the twins, and celebrating in our shared gift of life. I might not be a support group guy, but sometimes you just want to go to a place where everyone knows your name.

Shiver My Liver

As the snow continues falling in New York City and the wind chill hits below zero, I’m starting to worry about my immune system. Granted, I’m feeling better now than I have in months. I’m more energized, I feel stronger, and I finally feel like I’m on the road to recovery. Still, it’s cold outside, no one feels good during the winter, and my feet are freezing. Add to that my bad luck and I’m a little nervous about my compromised self.

New York City is a brutal place during the winter. Despite what you may have seen on Miracle at 34^th Street, the snow here is not white. It is a slushy mix of grey, yellow, and acid rain. The streets are strewn with tourists who walk slowly and window shop. The subways are packed with coughers, snifflers, and various other communicable disease-givers. I’ve recently received permission to take the subway from my doctor. But I’m still not so keen on getting punched and prodded while I have no defense mechanism. And with Swine Flu on the prowl for poor, defenseless people like me, chances of getting sick are everywhere.

Last year I got the flu shot. So did Aviva. And we both got the flu anyway. This year I wasn’t allowed to get the shot. Because my immune system was so fragile after the surgery they told me not to bother. I couldn’t get the H1N1 shot either. The truth is you can drive yourself crazy worrying about all these diseases. With a new liver, though, you just need to be more careful, like a flight marshal constantly on the lookout for anything suspicious. And so I’m bundled up in three layers, a bottle of purell in one hand, gloves and a mask in the other. I’m ready to head out in the cold, bitter winter. Wish me luck, I'm gonna need it.

Calling All Livers

Don’t bother to call me. I rarely answer my phone. A worse idea would be to leave me a message. I still haven’t checked a few since the transplant. But text me and I’ll most likely respond in kind. It’s not that I don’t like staying in touch or that I’m extremely lazy. I just don’t handle the phone so well. But with texts, you say what you need to quick and easy.

And so you can imagine my excitement when I found out doctors will now text you. In a recent study, teenage transplant patients who got regular texts from their doctors were less likely to go through rejection. It’s not that the new liver prefers texts over phone calls. Rather patients just remembered to take their medicine more often if they got a text reminding them. And so just two people out of the 41 participants experienced rejection, compared with 12 out of 41 the year before.

It’s as easy as ever to get in contact with your doctor nowadays. If texts aren’t your favorite form of communication, there’s always email. Columbia Presbyterian health care providers use RelayHeath, a non-emergency contact site, to stay in touch with their patients. You can schedule appointments, talk with your provider, even link your pharmacy to the system (for a transplant patient, that’s a lot more exciting than it sounds).

People might argue that this all dulls the doctor-patient relationship in some way. Of course, the argument can be said about all technology. No matter how connected it makes us, it inevitably feels less sincere. And so an occasional phone call might be good. A visit once in a while even better. At the end of the day, it’s whatever makes us feel better. Even if it’s 160 characters or less.