Tuesday, December 31, 2013

A Fond Farewell to 2013

As far as I know, the only time I was hospitalized in the first 28 years of my life was when I was born - not a bad ratio of years lived to hospitalizations. Of course we know that ratio began declining abruptly when I became sick in October of 2009. In those last three months of the year, I was hospitalized two or three times. I think I logged five hospital stays in 2010. If only airline miles could be applied to hospital bills...

I found myself in the hospital about every six months in 2011 and 2012, a strangely regular rhythm caused by unrelated events - I think two instances were for flu or flu-like symptoms, one was for rejection treatment and the most recent episode was the disaster of trying to switch from one immunosuppression medication to another. This last stay lasted a solid week; I went home on December 26, 2012.

When this past May and June rolled around, I started getting nervous. I didn't wonder when the next episode would strike, but what it would be. I think I remember having some symptoms of rejection around this time. Whenever that was, I was sure I was in rejection and would need to report to the ER to "check in" for treatment. I was astonished when my transplant team reported news of a normal echocardiogram and a negative heart biopsy. I kept nervous watch for symptoms of the flu or other abnormalities for the next several months, but none came.

I started counting the days in December, wondering with increasing anticipation if I could actually make it a full year without a hospital stay. I was so relieved when December 26 came and passed, with only a lingering head cold to show for it. And now, on the eve of the new year, I realize I went the entire calendar year of 2013 without spending a single anxiety-ridden night in the hospital.

I'd say that calls for a toast. Farewell, 2013. Wishing all of you a healthy and happy 2014!

On another note, please keep Ally "the Bionic Bride" in your thoughts. Her story began much the way mine did, only she was an 18-year-old freshman in college. She was healthy and active until a virus attacked her heart. She first had an LVAD (heart assist device) implanted, and she got a new heart very near the time of my transplant in 2010. She has just learned that she has severe cardiac allograft vasculopathy and needs to go back on the transplant list. This type of coronary artery disease is not terribly uncommon among heart transplant recipients, but I didn't realize it could strike as early as three years post-transplant. If you want to check out her story and/or send positive thoughts her way, her public Facebook page is https://www.facebook.com/pages/The-Bionic-Bride/119390961436414.

This is the People Magazine spread you may have seen.

Sunday, December 15, 2013

An Early Christmas Present


I was miserable on Monday, Tuesday and Wednesday last week. I felt like my body weight had doubled by the time I finished my first cup of coffee. I closed my eyes and rested my head in my hands when I went to the bathroom. I felt emotionally overwhelmed by the idea of carrying on this way for the rest of my life. I could barely keep my body upright during meetings and didn't even try at my desk. I avoided unnecessary conversations with coworkers. I can't quite articulate how weak and fragile my body felt by the time I arrived home each evening. I felt like I was dying.

In the preceding week or two, when I was trying a new medicine called Nuvigil, I had somehow managed to forget how miserable I had been every single day for nearly three years.

My new and beloved sleep doctor prescribed Nuvigil a few weeks ago as the first of several ideas he had proposed. I tried taking it at different times of the day as advised and didn't notice any improvements, but I did start feeling more heart palpitations than usual. With no noticeable change except the psychological discomfort that comes with frequent palpitations, I decided to stop taking the medication at the end of last week. It was only when I reverted to my previous level of agonizing fatigue that I understood the difference that Nuvigil was making. I decided I would start taking it again on Thursday morning and closely monitor how I felt.

I was near tears by the time of my Thursday evening commute, as I finally allowed myself to accept and celebrate the impact of this new medication. Finally, after being truly miserable and near despair for years, FINALLY, something was helping. After being told time and time again that I might not ever improve, I have seen evidence of tangible improvement. I am elated and encouraged and triumphant.

I still ran out of gas at the end of each day on Thursday and Friday. I still avoided people. I still rested my head in my hands whenever possible. I still crawled into bed exhausted at 9 o'clock each night. I still rested most of the weekend. I am not well, to be sure. And I am far from cured. But words cannot describe the gratitude and relief I feel for this measurable improvement. I'm certain I will forget about this win soon, when I become accustomed to and frustrated by my new normal, but I write this as my reminder. There is now not only hope, but reason to hope.

My dear friends Marguerite and Chris gave me a plaque not long after my transplant that read "fluctuat nec mergitur". Not only is it the motto of Paris (this francophile's favorite place on earth!) but its meaning couldn't be more appropriate for my situation: she is tossed by the waves but does not sink.