Living on Steroids

The most self-conscious I’ve ever been was not six months ago when I was yellow, frail, and exhausted. It was ten years ago, at the height of adolescence, a time when self-esteem is often at its lowest. Amidst teenage angst, my Crohn’s disease began to flair up and my stomach began to suffer. Crohn’s can be a debilitating disease causing you to avoid eating, constantly run to the bathroom, and even have accidents. With the social pressures of middle school abundant, any help you can find, you’ll take. Even if that help is Prednisone.

Prednisone is classified as a steroid and is often given as an immuno-suppresent. Its uses are far-reaching from common autoimmune diseases like Crohn’s disease and rheumatoid arthritis to cancers such as Hodgkin’s lymphoma. The drug’s powerful effects and high success rates are the reason for its common use. And yet, prednisone is not without its faults. The side-effects to the drug are just as far-reaching as the problems it solves. Common side effects include weight gain, facial swelling, depression, unusual fatigue, weakness, blurred vision, osteoperosis, and dozens of other fun diagnosis.

I started prednisone in the summer of 1998 with little to no effect. It took around two to three months for my flare-up to subside and I remained on the medicine for a few months after that. Since the side-effects to prednisone are so severe, you must taper off of the medicine over time. In March of 1999 when I was slowly coming off of the meds, I began to eat vociferously. My daily rations went from 1200 calories a day to well over 3000. I ate five meals a day, pizza for a snack, and milkshakes for a breather. I had never been so happy in my life.

Then one morning, I woke up and my vision had gone blurry. My eyes were watery, stinging, and red. I could barely see. The doctor would later tell me that I had developed iritis, which is a common side-effect of not having an immune system. Iritis is itself an inflammatory disease that occurs in the iris of the eye. It is not a major issue, just a shocking and scary one, and was better in a couple of days.

A few weeks later, though, my cheeks began to swell and puff like Violet Beauregarde. Medical texts dub this condition “chipmunk cheeks” but my friends prefered to call me “Garfield”. It was not appreciated. As my acne began to get worse and the insults kept coming, I was beginning to take it badly. Prednisone can cause depression, bad moods, even mania, and I don’t know if any of those directly affected me or if it was just adolescent mood-swings. All I know is that for the first time in my life, I truly felt self-conscious about my appearance.

After that experience, I refused to go on Prednisone ever again…until now. One of the prominent medications post-transplant is prednisone as it acts as an immuno-suppresent. Post-transplant I could never refuse to take a medicine, even something as daunting as prednisone. Once again, as I started the medicine, I had little troubles And since I am already married and can take the insults, suffer from osteopeosis, and am constantly tired from the babies, there isn’t really much else I had to worry about. But as I’m beginning to come off the medicine, there is a bit of concern as to what is in store for me. I have already gained twenty pounds, which might be a result of being healthy versus being drugged. My cheeks are somewhat puffy but better than the gaunt and disheveled look from a few months ago. And finally, I sometimes see myself getting really mad or upset over little things but I try to take solace that it’s drug-related. The truth is, I’m not a teenager anymore and I can handle these things. It just doesn’t mean it’s any easier.

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.”