Body Image

8 or 9 years old

April, 1995: 15 years and using a lot of red
lipstick to cover up my purple lips.

January 14, 1996: exactly 5 months pre-
transplant and you can see how thin I was.

Growing up, I was always skinny. In fact, when I was in fourth grade, I was called “Slim Kim.” I hated being called that. When I was being evaluated for my transplant, I was nearly 15 years old, still thin but certainly not emaciated. My last pre-transplant weight was eighty-eight pounds. By the time my one year anniversary rolled around, I had gained nearly twenty-five pounds. I was up to 112 lbs. During the first year post transplant, I admit that I used the excuse of being on Prednisone (and gaining that increased appetite) to eat whatever (and however) I wanted! Looking back I think Oh. My. God! Sadly, that would not be my heaviest weight.

I abused the increased appetite side affect from Prednisone. I had a valid excuse during that first year; I had no idea how powerful that drug would be or how many milligrams I’d be on would influence how much I would eat. By the time I was nearly 10 years post-transplant, I was up to 142 lbs. and I had no reason not to curb my cravings. (Keep in mind that I’m only 4’8.5”) In 2006, to combat the rejection I was experiencing, my doctors pumped a big dose of steroids into my body so I was now overweight and bloated. In fact, while at the 2006 U.S. Transplant Games I walked around like a penguin! The skin on my legs was stretched, my feet were puffy and had grown, and my toes were so swollen that I couldn’t wiggle them! To say that it was painful would be the understatement of the year. Thankfully, I picked a fight with my doctors and had them prescribe a water retention pill to help with the swelling. Soon after, the lower half of my body started to look more normal.

June, 2006: when I was smack in the
middle of battling rejection in my lungs.
This probably the heaviest I've ever been
in my life.

After fighting rejection I decided to finally get serious about my health and weight. It has taken me a good few years (of figuring out what works for me and what doesn’t) but I’m getting close to my goal. I'm now at around 118 and I need to lose (roughly) less than 10-15 lbs. I'm trying but it's not easy. I'm always going to have days where I'm frustrated at my "Prednisone Buddha belly" or I snack more than I should (especially after dinner!) but I try to take things one day, even one meal, at a time.

March, 1996: my hair was long,
thin, and straight!

Another "lovely" side-affect I gained was the change of my face. I remember a few weeks after my transplant (once I'd been released from the hospital) where I was washing my face and noticed--for the first time--my Prednisone-induced moon face. I was in the bathroom at the time and I actually pulled a Home Alone (with my hands placed on my cheeks). I freaked out and started wailing to my mother about how my face looked. I actually tried to push my cheeks back in but, of course, that didn't work.

Soon after, I realized what a blessing it was to have “chipmunk cheeks.” Before the transplant, my face was long and shaped like an oval; I'd either smile too big and my face would look "horsey" or I'd smile too little and it looked like I was trying not to pass gas. The roundness helped my appearance!

Another part of me that changed was my hair. From toddler-hood until I was eight years old, my hair was long (down to my waist), dirty blonde and thin but healthy. Soon after, Mom had me get my hair cut and for the next eight years; I went from having long to shoulder-length to chin-length, to half-way-down-my-back hair. All kinds of lengths and as I became a teenager, my hair had gotten a light brown shade to it.

September, 1996: my Prednisone cheeks
helped my appearance! My hair was now
dark, thick and curly!

Barely a month post transplant and my hair was suddenly dark (almost black), thick and curly! Holy crap! I didn’t know it at the time, but Cyclosporine causes hair growth and boy did it ever. I suddenly had hair all over me! During those first few years, it got to the point where I would shave my legs and arms! (I eventually stopped seeing how the hair on my arms only got thicker.) Also, I had to work on my eyebrows to make sure I didn’t get a funky looking unibrow.

During high school and college, I just didn’t have the patience to try and manage this new volume of hair I had acquired. In 2004, I finally wanted to be more “girly” and bought all those hair care products that help you manage thick, curly hair. It was looking pretty good too but by the time I figured out how to take care it, fate threw me a curveball.

As I’ve said before, I experienced chronic rejection in my lungs in the spring of 2006. One of the ways my doctors wanted to fight it was to take me off of Cyclosporine (and Imuran) and put me on Prograf and Rapamune. Within a few months my hair was falling out in clumps. When I first complained to my transplant coordinator, she brushed it off saying that that was a side effect from the Prograf and Rapamune (yes, both medicines cause hair loss). A month or so after my complaint, I was in the hospital for a clinic visit. When she saw me and saw what had happened to my hair, she nearly fainted! She finally acknowledged that I was not exaggerating about my hair loss. It became even worse in 2008 due to stress and got to the point where I had to start wearing a wig.

Easter, 2010: wearing my brand-new wig
for the first time. This helped me gain back
much-needed confidence and hide how my
head and hair really looked.

A different area of my body that was affected was the one that defines my gender. Before my transplant my menstrual cycles were regular. Once a month with the bells and whistles of cramps and bloating. Immediately post transplant, my periods were no longer the seven days they had always been. Instead, they now lasted for three days. As you would imagine, I was a very happy 16 year old and for nearly 10 years, that’s how my cycles were. Short and once a month like clockwork.

Unfortunately, my hair loss affected me so much that my hormones were thrown for a loop; I started having never ending periods. I had to get an OBGYN's approval to be put on birth control pills. MANY months later (back and forth between my pulmonologist and gyno) I was put on the Pill. Once that happened, my periods became regular again.

In January of 2009, I was hospitalized (due to food poisoning!) and Mom stayed with me. Around that time, my hair was past my shoulders but it was stringy, matted and I was pathetically clinging to what was left of it. Since Mom was bored out of her mind, she asked a nurse for a pair of scissors and started cutting away. By the time she was done, I looked like I had just been released from a concentration camp. She had cut it that short!

Interestingly enough, that hair cut helped. It motivated brand new hair follicles to grow back and I started taking over the counter "hair, skin and nail" pills.

Unfortunately, in the middle of this sudden hair re-growth, my body did something that affected my cycles (yes, again): a blood clot was found in my neck!

In July of 2009 (exactly six months after my week-long hospital visit) I woke up one morning experiencing chest pains. I tried brushing them off saying to myself that they were just due to indigestion or gas but it got to the point where I couldn’t ignore it any longer. I took a taxi to the local hospital and after three tests were performed, it was discovered that I had a blood clot that started in my right leg, (somehow) skipped my lungs, and ended up in my neck. Because of the clot, I now had to stop taking birth control pills. I was almost back to where I was back in 2006 except now, my periods would be quarterly and each time, they would be extremely heavy, painful and just plain gross. Thankfully, since April of 2011, my periods are becoming more consistent and normal.

During all of this menstruation stuff, I started using T-Gel Neutrogena shampoo and conditioner to help moisten my scalp which would help the budding hairs to grow. I got a cut in January of 2010; a couple of great quality wigs in the spring and fall of that year, and my hairs were finally starting to grow and fill-in.

In the spring of 2011, I took a bold step: I stopped wearing my wig to work. It was just too hot to wear one and honestly? My hair has been evenly growing out so well I figured, “why not?” In fact, in mid-September of 2011, I noticed that I have eyebrows again and in December of 2011, it's obviously that the hair along the temples is finally growing back. 

This has been a long and difficult process for me. I know it may seem shallow but you have to understand that going from one extreme (thick with curls and lots of it) to another (thin, stringy and falling out during every wash) was a very traumatic thing.

Of course I have my days and I think "Ugh! I want my hair back" or "I've been taking care of myself but why doesn't it show?" but I try not to beat myself up. I know that if I do, I'll just drive myself crazy, bring pointless stress on to my body, and start this process all over again. Does this mean I suddenly think I’m the sexiest, hottest, most gorgeous girl around? Nah, but I still think I’m pretty cute! :-)

Christmas, 2011: it has taken me YEARS
but I think I've finally accepted my appearance.
Baldness, zits, and all!  :-)