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.

 

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.

Idiopathic Hypersomnia and a Sliver of Hope

I first became sick four years and one week ago and have since received countless diagnoses.

Cardiogenic shock. Translation – total system failure (or, as I like to call it, temporary death) caused by heart failure. Dilated cardiomyopathy. Translation – my heart was too large and too weak. Pleural effusion – fluid in my chest cavity. Renal insufficiency – kidney failure. Chronic kidney disease – after my kidneys started working again they became permanently diseased courtesy of a necessary medication. Diabetes – elevated blood sugar levels that cause your every thought about food to be considered through a new lens as irritating as a gnat that you can’t smack. Edema – swelling due to fluid build-up. Anemia – reduced red blood cell function. Hypothyroidism – reduced thyroid function. The list goes on.

One might think I would hope to end the slew of diagnoses, but not when another condition has gone unexplained for years. I have struggled with debilitating chronic fatigue for nearly three years now – THREE YEARS. I’ve dreamed of pinpointing its cause and have gone to great lengths in pursuit of a diagnosis. In my desperate attempt at solving this mystery, I admit I have hoped for positive HIV test results, hepatitis, multiple sclerosis and other diseases and conditions that make most people shudder.

A cure would be nirvana, but I would settle for a concrete cause – a diagnosis that ascribes science and legitimacy to the way I have felt all of this time. An undiagnosed debilitating condition is treated as frivolous by many and is absolute torture for the person affected.

My latest answer-seeking endeavor has been with the Emory Sleep Center here in Atlanta to follow up on an abnormal sleep study I had a couple of years ago. My new doctor is an expert in the field of sleep medicine and seems highly sympathetic to my situation. I participated in a second sleep study a couple of weeks ago, which was followed by a full day of sleep testing that was as close as I have gotten to Chinese water torture – more on that another time.

I haven’t seen my doctor for follow-up yet, but I did get my hands on the report. And halleluiah, there was indeed a diagnosis right there at the top: Idiopathic Hypersomnia. The earth-shattering translation goes something like this: “We have found that you are abnormally tired all of the time and require an extremely excessive amount of sleep, but we have no idea why.” Reading that felt like I had finally found the location of the elusive holy grail, but someone had replaced it with an empty red solo cup.

However, to put my cynicism aside for one moment [wait for it], I do maintain hope that my doctor will have some suggestions when I see him in person soon. I don’t really have another choice but to hope, do I? The good news is that with a diagnosis – no matter how vague – comes the possibility of treatment. Without that tidy diagnosis code that someone at my insurance company can type into a little box, all progress ceases and I look for the next specialist. So with my diagnosis code in-hand and an appointment coming up soon, I choose to be hopeful in spite of the bitter disappointment that has defined my last thirty-four months.

And....Action

At long last: the rest of the story.

Around the time I wrote that last post I began feeling some side effects of the sirolimus. I became generally queasy, had a constant headache and developed some unusually painful sores on my bottom lip. My new Mayo nurse indicated that these side effects were not unusual and should improve over time. Stick with the plan.

In the next 48 hours I started feeling much worse and eventually developed the first fever I’d had since my July 2010 transplant. Fever is not taken lightly in the transplant community because it can be a sign of rejection or infection. I reached the on-call nurse at Mayo after a full day in bed, but she was non-plussed and suggested I had a stomach virus. That’s really all she could do from across the country – besides telling me to STOP taking the drug or suggesting I head to the nearest hospital.

The general cramping and discomfort in my belly turned into very specific pain. I tried to calm my nerves and get some sleep, but I ended up with continual diarrhea and vomiting for the next six hours, into the wee hours of that Thursday morning. My parents had gone to bed with their cell phones at the ready, and I finally called upstairs around 5am to say I wanted to go to the hospital. I had not experienced this type of belly pain before and recalled that the last time I’d had a symptom I didn’t recognize, I had in fact been dying from heart failure. That’s a lesson you don’t easily forget! My gut said I should go to the hospital.

After a long and agonizing wait, I finally got some fluids going and was given morphine – my best friend that morning (besides the toilet haphazardly installed in a corner of the small ER exam room). I hoped to be treated for the pain, get hydrated and stop vomiting so I could take my medication, then I figured I’d go back home to finish getting better. That all happened, but I didn’t end up going home until a week later, the day after Christmas.

I was once again a mystery to the medical community. After a slew of swabs, specimens, punctures and seemingly gallons of blood, it turns out the sirolimus had made me very sick. It had taken such a bite out of my immune system that I barely had any infection-fighting cells left, which left my body feeling horrible and unable to defend itself. I felt like my bones were slowly shattering inside of me.

It took a few days for the sirolimus to fully clear out and another few to recover enough to eat. I finally ate enough on Christmas day that I was released 24 hours later.

The good news is the sirolimus was responsible for that entire episode so there was nothing permanently wrong, though things could have gotten ugly if I’d stayed home and picked up an infection while my immune system was so compromised. Also my family is wonderful and delayed our Christmas celebration by a week, so I didn’t miss a thing.

The bad news, of course, is that our latest idea for attacking my fatigue became impossible. We weren’t able to test the hypothesis because I was never able to lower my tacrolimus level. There is not another fully tested immune suppression therapy for heart transplant patients – it’s sort of either tacrolimus + cellcept or sirolimus + cellcept – and I assure you I will never even touch a sirolimus pill again. If the tacrolimus is making me sick, the very unfortunate reality is that I will probably always feel sick. There are some other mixtures of drugs that we could try, and I hope to sometime soon, but we didn’t want to mess with anything for a while after that Christmastime excitement.

So that’s the latest in my medical adventures. As for the rest of my life, I’ve been gainfully employed again since the beginning of February and recently bought my own home! I’m trying to at least pretend to be a normal person in hopes that one day reality will follow suit. So far: no dice. But a girl can dream.

Triumphantly displaying the stick from the popsicle I ate - it was the first thing in a few days.