My Half-Birthday

Today marks six months since my transplant. In such a short amount of time my life has been completely altered. Last year as I began to get progressively sicker and the wait for a liver transplant seemed ages away, I could never imagine sitting here today with fair skin, twenty pounds heavier, feeling strong and healthy for the first time in years. It’s amazing how quickly the body forgets pain as I can barely remember the aching, tiredness I felt such a short time ago.

That doesn’t mean my health has been without setbacks the last few months. My blood clot in my leg was a major issue that still swells up and hurts even now. At six months, my doctors told me I would feel better than I’ve ever felt and to be honest, I don’t think I’m there yet. But everyone’s recovery is different and after such a major surgery, I am happy where I am. I am beginning to come off of some medicines, down from over 30 pills a day to around 20 now. And soon, I’ll be off of the prednisone, the med with the most side-effects.

Everyday I am constantly aware of my gift of life and the foreign object inside my body. My scar has healed a little but still looks raw and fresh. I have bi-weekly blood tests, monthly doctor appointments, and am still in physical therapy to regain my strength. I still have to be careful not to come in contact with people who are sick. And, I am not even allowed to change the babies diapers when they begin getting their vaccinations. So as normal as things have become, there are still some changes that constantly remind you what you’re living with.

Of course, the biggest change in the last six months has been the arrival of the babies. When I was sick during pregnancy, we often used to joke how I stole all the thunder away from Aviva. And so we made a deal after transplant that I would get two months of attention, Aviva would get two months before the birth, and then the babies would get all the attention for the rest of our lives. We are in the last stage and it couldn’t be truer. Sleepless nights, constant crying, changing diapers, and singing them to sleep are all the best parts of our lives now (except the sleepless nights, I still can’t get used to that). It’s also forced me to be more responsible in taking care of myself. X-box bucks, Plasma Points, and whatever other bribing techniques we used to get me to take my medicine have all been thrown out the door. There is no fan-fare needed anymore, you take your meds for your kids, not for a plasma TV. And I have only missed one dose in six months I am proud to announce.

Finally, perhaps the biggest challenge these last few months has been writing for the blog. Pre-transplant I had been living with my disease for so long that it was so easy to write about. Now, everything is new and hard to put in to words. Add to that the added responsibility of twins and it’s not easy to find time to write. I had always imagined that the blog would kind of finish after the babies, a perfect ending to a wonderful story. But I enjoy writing and hopefully you still enjoy reading this. And so, I’m gonna continue with the blog (and now twitter as well) for as long as it seems vibrant and relevant. I thank everyone for reading and look forward to the next six months ahead.

Chopped Liver, Foie Gras, Liverwurst: An Appetite for Destruction

I successfully avoided the freshman fifteen. And despite everyone’s assurances, I didn’t gain any weight my first year of marriage. In fact, I hadn’t gained any weight since I was fourteen. For ten years, I fluctuated between a ghastly 105 and an unhealthy 112. My slim frame was not from lack of trying. After years of my GI badgering me, I tried to supplement my meals with milkshakes, boost, and pasta. And yet, despite eating whatever I wanted, whenever I wanted, I didn’t gain a pound.

My roommate post-transplant was an older woman who had a successful double-lung transplant a few years back. She was back in the hospital for a minor infection but was extremely positive about the post-transplant lifestyle. One day, as I slowly walked the busy hallways, trying to regain my strength, we struck up a conversation. After discussing our surgeries and getting to the topic of recovery, my roommate made a funny joke. “Oh, you are gonna gain some weight now. Let me tell you,” she chuckled in a hearty drawl. “No way,” I protested. “I still have Crohn’s disease so nothing is going to change.” “You wait and see,” she continued, “I gained forty pounds post-transplant. Between the prednisone and your new lease on life, you eat. And believe me, you eat a lot.” I shrugged her off and continued on my walk, slowly recovering.

I now look back at that conversation as a heralded warning, a voice to the future that I should have been paying attention to. I’ve gained twenty pounds since transplant and slowly upping that total daily. Between the prednisone and my new rigorous appetite, my once foul-proof metabolism seems to be slowing down. Of course, I’m still a healthy weight but for some transplant patients, weight gain can become another obstacle to overcome. Transplant patients are at high risk for diabetes and high cholesterol. The dual impact of immuno-suppressive drugs and weight gain can create a cascading effect that ultimately puts the new organ in danger.

In a few weeks, I’ll be taken off of the prednisone, the biggest culprit to my increased appetite. Between physical therapy and holding the babies, I now work out a few times a week. My diet of fried food, ice cream, and Jelly Belly’s isn’t going to change though. And so I’m hoping I can turn this weight into something good, a sign of health for the first time in ten years. As my GI so shrewdly put it, “I love a chubby IBD patient.”

An Olympic Liver

A few years ago, Aviva tried to teach me to ski in New Jersey. I know this sounds oxymoronic as Jersey is not known for its snow-top mountains. Mountain Creek is as flat as a runway with mountains more fit for sledding than skiing. And yet, this didn’t really help me avoid falling flat on my face dozens of times. Aviva blames my legs, which are bow-legged and not properly designed for the pizza wheel stop. Whatever my handicap may have been, it ultimately led to a concussion. After defeating the bunny slope and finally coming down the green diamond after many falls and crashes, we decided to have lunch and relax. I subsequently threw up, got a horrible headache, and then passed out on the bench. Needless to say, we don’t go skiing anymore.

This ill-fated attempt at a winter sport only magnified my respect for the Olympic athletes. Their grace, strength, and patriotism is rarely matched in sports. Perhaps the most impressive of these athletes is Chris Klug, who in 2002 became the first transplant patient to win an Olympic Medal. Klug captured a bronze medal in the snowboarding event, the parallel giant slalom. His victory was a great PR opportunity for transplant awareness and Chris continues to speak about his experiences through his foundation, The Chris Klug Foundation.

Chris Klug makes us all look lazy. In 2000 he had his transplant after suffering for PSC for nine years. Four days later he was out of the hospital and within a week he was back riding on a stationary bike. Five months post-transplant and I still get tired walking up the three flights of stairs to my apartment. To avoid the risk of abdominal hernia, Chris avoided abdominal exercise for a whole month. Yesterday, I tried to do a sit-up, got tired, and ate a candy bar instead. Two months post-upgrade, Chris was back on the mountain, skiing and snowboarding. A mere four months after surgery, Chris was back on the snowboarding circuit, competing regularly. And the rest, as they say, is all history.

Mazal Tov

This has been the hardest post I’ve ever had to write. I’ve written and rewritten this paragraph over and over and yet it still does not feel right. The problem is there are no words to accurately describe how I feel. The last few weeks have been amazing, life-altering, a blur. In this case, words can do no justice for what I’m feeling.

On January 19^th, Aviva and I gave birth to two beautiful babies, a boy and a girl. Thankfully, both Oscar and Hindy are healthy, beautiful babies. Oscar was born first, weighing 6 pounds and 8 ounces. He looks like his father, a thin face, bright eyes, a nice Jewish nose. Two minutes later, his adorable sister was born, an exact image of her mother. Hindy was 6 pounds 1 ounce, a healthy round face with a full head of hair.

Aviva quickly added motherhood to the many talents and jobs she does amazingly. I’m blown away by the knowledge and ease she has in taking care of her two babies. Me, I’m still learning on the job but loving every minute of it. Nine months ago we weren’t even sure where I would be by the time the babies were born. We joked that we would each be wheeled out of the hospital carrying a baby. Instead, we were blessed to have Hindy and Oscar come four months after my transplant, just when I am starting to feel like my old self. Their birth culminates the most amazing year of my life with another life-altering experience that will hopefully usher in a life of health and happiness for all of us.

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.