Possible Cause

This illustrates both my level of exhaustion and my obsession with pugs.

While “probably cause” had a better ring to it for the title of this post, I’m afraid that would be premature at best, but I’ll gladly take a new potential cause for my debilitating fatigue any day.

After being diagnosed with hypersomnia a few months ago, I had a lumbar puncture (spinal tap) to determine whether or not my spinal fluid contains an elevated level of a substance that acts like a sedative. In patients with elevated levels, my doctor is experimenting with using a drug called flumazenil to counteract its effect. He has seen some significant success among his patients. Having prescribed flumazenil for about 100 patients with elevated levels of the substance, he reports a 50% drug refill rate. This stuff is expensive and not covered by insurance, so people aren’t refilling it unless it works.

I learned on Wednesday that I do indeed have an elevated level of this “sleepy juice” and could not have been happier. Each new finding, each possible treatment offers a glimmer of hope that I can feel better.

Flumazenil is labeled for use as an injection to bring people out of sedation and treat overdoses of drugs like Valium. Though long-term efficacy and safety of treating hypersomnia has not been evaluated, the doctors at the Emory Sleep Center completed a small clinical trial in 2012. Below is an informative excerpt from the abstract.


The term 'hypersomnia' describes a group of symptoms that includes severe daytime sleepiness and sleeping long periods of time (more than 10 hours per night). Sometimes, hypersomnia is caused by a problem with the quality of sleep occurring at night, for instance when nighttime sleep is disrupted by frequent breathing pauses. In other cases, however, hypersomnia occurs even when nighttime sleep is of good quality. These cases of hypersomnia are presumed to be a symptom of brain dysfunction, and so are referred to as hypersomnias of central (i.e., brain) origin, or primary hypersomnias.

The causes of most of these primary hypersomnias are not known. However, our group has recently identified a problem with the major brain chemical responsible for sedation, known as GABA. In a subset of our hypersomnia patients, there is a naturally-occurring substance that causes the GABA receptor to be hyperactive. In essence, it is as though these patients are chronically medicated with Valium (or Xanax or alcohol, all substances that act through the GABA system), even though they do not take these medications.


I’ve been using Adderall to help me wake up in the mornings, which has definitely helped reduce the extent of my oversleeping and evening ritual of dreading yet another miserably exhausting day ahead. However, Adderall is a stimulant and takes time to start working. I wake up to take the pills at 5am, then go back to sleep and wake again with my alarm at 6:30 or 7. It also makes me feel jittery in the mornings and can’t be taken again later in the day without keeping me up at night. While it has been cause for great celebration and hope, it is not a perfect solution.

Flumazenil is not a stimulant. My doctor has described the difference with this analogy. If a car is driving too slowly, it may be sped up by applying the gas pedal, which is how a stimulant works. On the other hand, if the car’s parking brake is engaged, the gas pedal is not going to provide much help. Flumazenil removes the brakes, speeding the car up by the absence of something de-energizing instead of the addition of something energizing.

Flumazenil is now available in a small lozenge that dissolves under the tongue and a topical cream applied to the skin. I just took my first lozenge an hour ago. I think it will take time to evaluate the results, but I am encouraged to have been able to sit and write this post without falling asleep or dismissing the effort as overwhelmingly cumbersome. As you may have noticed from my increasingly infrequent posting, this is not something to take for granted.

This is my amazing sleep doctor / neurologist Dr. Rye. He is nearly as committed to solving my mystery fatigue as I am. He also puts up with my sarcasm, though he is not nearly as cute as the sleepy pug.

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.

 

Minnesooooota

 

Since writing this post on December 15, a lot has changed. I figured I'd go ahead and post this one and fill in the rest later...

Oh, hey there.

You know when you haven’t talked to someone in a while and you want to call, but the notion of catching each other up on every detail that has taken place since your last conversation is overwhelming, so in the end you simply don’t call? That’s been the nature of my relationship with this blog for a number of months now. I have wanted to write – and have started several posts – but never really knew where to begin or how to catch up. Instead of deliberating any longer, I’ll just share some recent news and fill in the biggest gaps.

Almost everything has changed. I left my job (in a “congratulations on your lay-off” kind of way) and am enjoying some much-needed time off with the security of ongoing health insurance. I left New Jersey and am now living in my parents’ basement – it’s a lot better than it sounds, but it’s still my parents’ basement. I finally went to the Mayo Clinic in Rochester, MN and am currently under the care of their transplant team.

The Mayo Clinic is a very impressive place. The facility was modern and immaculate, the staff members were friendly and efficient, and most importantly, the doctors were thoughtful and thorough and extremely intelligent. While the “Eureka!" moment I had imagined did not materialize, my parents and I left Rochester with a new idea and a little bit of hope.

The cardiologist there believes I might be ultra-sensitive to one of my main medications, tacrolimus, which may be responsible for my extreme fatigue. Tacrolimus is very standard immunosuppression treatment following heart transplantation and is typically tolerated very well. However, it is known to contribute to problems like diabetes and kidney disease, two afflictions I have had since beginning the drug. I’m hopeful that my sugars and kidneys will show improvement once I stop taking it, but my hope for relief from my fatigue is more guarded. I have learned the hard way that it’s easier on the soul to expect the worst in solving this mystery.

To maintain sufficient immunosuppression, I will transition to a different drug called sirolimus over the next month or two. Sirolimus is used in kidney transplant patients and has been less commonly used in heart recipients. I’m aware of some unlikely but grave side effects that have been seen with sirolimus, but my new cardiologist does not anticipate any problems with the switch. I had also considered this drug with my NJ team in the interest of protecting my kidneys, and they were likewise supportive.

I began the transition on Tuesday. This first stage introduces the new drug while maintaining my regular dose of tacrolimus. Next, I’ll begin reducing tacrolimus and increasing sirolimus until I reach a therapeutic level of sirolimus. I’ll have regular lab work, which will be monitored closely by my team at Mayo. I expect to feel any significant changes within the next three months.

If the move to sirolimus only prevents me from requiring a kidney transplant within five years (the path I’m on with tacrolimus), that will be a win. But the true opportunity here is to get my life back. I can no longer even remember what having energy feels like and can hardly imagine a life without this crushing fatigue. What bliss that would be.

Regardless of the outcome, I am grateful to the fine folks at the Mayo Clinic for truly listening to me, offering really thoughtful insights and ideas, and for showing my parents and me that genuine Minnesota hospitality. Don’t cha know.

Stay tuned for...the REST of the story.

Single and Sick at 31

Lots of people get sick. Actually, most people get sick eventually, as the great majority of deaths are caused by some form of illness (the leading one being heart disease – not that I’m competitive). Some become ill way too early, without ever really having lived. Many become ill after seventy or eighty good years. Plenty of people get sick in their thirties and forties and fifties, many that are married and/or have children.

I’m willing to bet there are not many people that become ill as young, single adults – emphasis on single. While I have been glad not to burden a loved one with my needs and challenges on a constant basis, I do find unique difficulties in facing serious illness without a spouse or significant other. Even if living alone were never a problem (and thanks to friends and my moms’ visits, it hasn’t been much of one for me), facing the future as a single woman at 31 can be overwhelming.

Being single at 31 is daunting in its own rite to most healthy women. Some people get lonely. Those of us that want children are cringing as our biological clocks tick. We imagine the worst a single life has to offer. We are truly delighted to celebrate with our friends getting married and having babies, yet we grow more insecure with each announcement.

When you combine that with chronic illness and no real certainty for the future, the picture becomes more difficult to paint in a positive light. I try to embrace hope and positivity when considering the future for my body and my health, but it’s difficult to imagine meeting a guy that wants to jump on board. I’m not exactly “out there” meeting people due to my ongoing fatigue, and most men don’t seek out women with truckloads of baggage.

I’ve never been one to rue the single life or force fit relationships to avoid being alone, but I have always expected to one day meet the love of my life, get married, have children and live to become a grandmother. Maybe I watch too many movies, I don’t know. I guess I was more comfortable being single before I got sick, since I could plausibly imagine embarking on my Hollywood ending at any moment. I struggle more now, with the fear that I may never again be well. I might never recover the energy that has eluded me for eighteen months.

I just finished watching the movie “Love and Other Drugs” with Jake Gyllenhaal and Anne Hathaway. It actually helped me imagine a rewrite to my Hollywood ending in a way that befits a girl with ongoing health challenges and an uncertain prognosis. Rest assured this is a very loose parallel since the movie is far more scandalous than my relatively boring life, but I was brightened a bit by the potential of a long-term relationship for a girl facing long-term illness.

My Borrowed Heart and Other Parts

After 22 months with my new heart, it’s hard to believe that I am just two months away from my two year transplanniversary. A lot has happened since I was given a second chance at life. Today I’d like to celebrate all of the wonderful things I’ve been able to experience since having my faulty heart swapped out for T’neil’s healthy one.

November 2010
Thanks to my borrowed heart, I was able to return to work without any tubes or equipment dangling from my body. My giant steroid-enhanced face and I were so happy to get back to it!

April 2011
Thanks to my borrowed heart, I have been able to experience the pure joy of meeting and knowing the sweetest nephew imaginable. He entered this world in April of last year, and I got to celebrate his first birthday with him in Atlanta a few weeks ago. Without my transplant, it’s highly unlikely I would have lived long enough to meet this amazing little guy. I hope to have my own children one day, but for now the little monkey man gets all of the love from both of my hearts!

June 2011
Thanks to my borrowed heart, I very nearly ran a full mile at the Share NJ 5k last June. A bunch of great friends came to help me along the way and celebrate afterwards. I had begun struggling with fatigue a couple of months beforehand, so the amount I ran felt like a big accomplishment.

June 2011
Thanks to my borrowed heart, I was able to see two of my very good friends become husband and wife in June of last year. Marguerite and Chris have been good friends of mine since our days in Charlottesville, and we became much closer when we all migrated north four years ago. These are two of the nicest and most thoughtful people I know, and being a part of their wedding was so special for me. I even hit the dance floor a few times, something that would have definitely been impossible without my strong heart.

August 2011
Thanks to my borrowed heart (and my parents!), I welcomed my new roommate Piper to Princeton in August! Piper is my sweet puppy dog – half Boxer, half Pug. She was my parents’ dog for two years before she came to live with me, and she makes me so happy. I love coming home to her cute little face and wagging tail (she actually wags her whole butt - why limit oneself to the tail?). I swore she wouldn’t be allowed in my bed…and I lasted about six months.

October 2011
Thanks to my borrowed heart, I achieved my goal of getting promoted at work. I felt like something of an underdog when I first joined the company just because of my work history and legitimately became disadvantaged when I got sick, so the promotion was such a sweet and triumphant accomplishment for me.

December 2011
Thanks to my borrowed heart, I got to witness my best friend marry the love of her life in December. Amy and I were randomly paired as college roommates in 1999 and we lived together for a grand total of about seven years. I don’t think we could be any closer. Celebrating her wedding weekend with her was so special to me, and it makes my heart ache to imagine having missed it. Thanks to my new heart, I didn’t have to.

I tried to find synonyms to reduce the number of times I used the word ‘special’ above, but that’s really the right word for all of these experiences. They were special. Each was special in its own rite, but they were all that much sweeter knowing how easily I could have missed them.

I sure would like the rest of my parts to perform like my borrowed heart, but without my borrowed heart, none of the rest of my parts would matter. So I remain incredibly grateful for this heart and continue to fight for the rest of my body to catch up.

Weekend Fun

Quick update from my world:

First, I am fine and am feeling good. Second, my hospital has finally updated its telecommunications systems to allow for reliable and continuous internet access (though the TV lady going room to room)!

I've been in the hospital since Friday afternoon being treated for level 3 rejection.

About two weeks ago, some regular blood work I do to detect possible rejection (called allo mapping) showed that rejection was likely present. I had a biopsy on Thursday morning, which confirmed the highest grade of rejection - level 3. Rejection is not uncommon and I've been very fortunate to avoid it for a long time, but at this level it requires inpatient treatment, which is why I'm here in my old stomping ground.

I was told I'd have three infusions of high dosage steroids Friday, Saturday and today (Sunday) to suppress my immune system and quickly stop it from rejecting my heart. I have tolerated the first two infusions very well, with leg pain being my worst complaint (a wonderful thing!). The third is coming soon and should be no different, so the the plan was to go home this evening.

At the same time, we have been adjusting my oral immunosuppression meds to make sure my body doesn't go back to rejecting the heart once the steroid treatment is complete. For some reason my body is reflecting even lower levels of these meds despite the higher dosages, which has allowed me to maintain my status as the most bizarre and perplexing patient ever.

I hope it's just a temporary fluke but I have to stay another night with higher dosages and see what my blood shows tomorrow. If my levels look right, I will be able to go home tomorrow. If not, the hunt for answers will continue.

The best news of all is that I have shown no signs of reduced heart function, so it doesn't appear the rejection has been present long enough to cause any damage. I'm optimistic that the treatment will be effective and will know for sure after I have another biopsy within the next week.

Reason #73

Reason #73 to wear your Donate Life bracelet: you’re ready for St. Patrick’s Day 365 days a year! Piper and I ventured out to the dog park today, where a lot of people were rocking their green. Fortunately, our support for organ donation prevented us from being pinched. It didn’t prevent her from being molested by a big bully, but that’s a different story for a different day…

A lot of people are celebrating St. Patty’s Day today. I’m not (though I’m a bit envious of the green-beer drinking twenty-somethings), but I did find reason for celebration when I read the paper this morning. With an MBA, it seems, comes an implicit obligation to read the Wall Street Journal. I only partially fulfill my WSJ quota by receiving the Saturday paper…and I even read it most weeks.

Last week I was enraged to come across an article entitled “What You Lose When You Sign That Donor Card” featured prominently. The title alone alarmed me, but the content was truly outrageous. I was so disappointed that such a highly respected business periodical would publish such paranoid, biased and largely untrue words. The article was designed to feed the fears and uncertainties of organ donation critics, and I’m quite sure it was successful.

The reason for today’s celebration was discovering a letter to the editor today in response to the article. It was written by two physicians and the President and CEO of the New York Organ Donor Network. The words were carefully chosen and the message crystal clear: shame on you for publishing such misinformation. My only regret is that many more people read last week’s prominently placed piece than found this important response buried deep inside the paper.

We Must Encourage Organ Donors

“Dick Teresi’s ‘What You Lose When You Sign That Donor Card’ grossly misinforms the public about both the medical determination of brain death and the organ donation process in the U.S.

“First, there has never been a documented case of patient recovery after a properly performed determination of death by neurological criteria. Ever.

“Second, the diagnosis of brain death requires extensive neurological examination, irrespective of a patient’s organ donor status or the family’s support for donation. Electroencephalography is generally no longer used because it’s outmoded, not because physicians have something to hide. When donation is an option, the organ recovery agency must verify that all clinical testing has been done and all legal documentation is in the patient’s chart.

“Organ donation saves lives. Eighteen Americans will die today waiting for a life-saving organ. We hope that Mr. Teresi’s misinformed comments do not add to that number.”

Eighteen people. TODAY. Let’s see what we can do to address this solvable problem, not make it worse. Shame on you, Dick Teresi. And shame on you, WSJ.

Being Alive vs. Living Life

Marguerite asked me recently why I hadn’t posted to my blog in a while. I started to answer and then paused. She quietly asked if it was because I didn’t have any good news to share. Bingo.

Since starting this blog, I’ve tried to illustrate my true balance of negative experiences with humorous stories and strong doses of optimism. As I’ve been struggling with fatigue this past year, it’s become increasingly difficult for me to summon much optimism at all. Without the offsetting moments of joy, I have hesitated to share my difficult times. I imagine that people might look at my situation and wonder how I could possibly be dissatisfied after rebounding from months on death’s door.

To those imaginary people I say yes, I have seen far worse times than this. I am alive, after all – a fact that I haven’t taken for granted one single day since October 19, 2009. But having survived just isn’t enough anymore. It’s not enough for most of us to simply be alive – not if we’re not actually living – so why would it be enough for me? In seeking more though, I feel guilty. I don’t want to seem ungrateful to my supportive family and friends, to the doctors and nurses that have brought me this far – or most of all to my donor and her gracious family. I’m trying to come to terms with honoring and appreciating my survival AND freeing myself to be unsatisfied with the way I feel. I want to feel good. I want to enjoy this life that I have!

I was catching up with a colleague a few weeks ago and explaining the “I appreciate being alive but it’s not enough anymore” phenomenon, and she responded with words that have been echoing in my mind every since. She said, “you want to feel good and live your life, and there shouldn’t be any guilt associated with that.”

So with that elongated introduction, here’s the skinny on what’s been going on.

I have been struggling with extreme fatigue for about twelve months now. We first thought my exhaustion was being caused by iron deficiency anemia, so I had iron infusions back in March of 2011. Despite an allergic reaction that made it a very uncomfortable experience, I had two weeks of extraordinary energy. I think it was probably a normal level, but I felt like Superwoman on crack compared to how I’d been feeling. And then it was gone. This left my transplant team scratching their heads, so I was referred to a hematologist.

The hematologist’s goal was to fix my anemia. After improving my blood iron levels with different dosages and types of oral supplements, I felt no physical improvement. I subsequently began monthly procrit shots (to help my body make red blood cells), which have addressed my anemia but have again provided no relief from my fatigue. The hematologist was out of ideas and advised that I consult my endocrinologist.

My endocrinologist was fine for general diabetes management, but I didn’t believe she was equipped to help me beyond that, so I would need to find a new one. But endocrinology was just the next specialty on the list – my fatigue might be related to my endocrine system, but it might be something a rheumatologist would need to address, or I might have a disease that only an infectious disease doctor can treat, or maybe it’s something that requires an allergist... With so much uncertainty and complexity, I wanted to find one place where a team of doctors could evaluate me from head to foot and coordinate with one another to identify, once and for all, the cause of my relentless fatigue.

For a couple of months, all of my eggs were in the Mayo Clinic basket. They are very adept at this sort of thing, and I just knew they could solve my problem. Unfortunately, they weren’t quite as excited about me as I was about them. I received a form letter indicating as much a few weeks ago.

I now have about a dozen different appointments within a couple of weeks with a handful of different practitioners – each independent of the next. I saw a new endocrinologist last week, who had some ideas (I just need to get some labs done). I’m going to make an appointment with an allergist shortly. I see my new heart transplant cardiologist (there’s been some turnover to say the least) this coming week to see if he might provide a referral to Mayo, which might be more fruitful than my individual request. I’ve had a sleep study, a cardiopulmonary stress test and a slew of blood tests, all of which have so far generated more questions than answers. Oh, and I have a full-time job.

The good news is that my boss is extremely understanding and flexible – otherwise, I’d be in an even bigger mess. Also my parents continue to be extremely helpful. The bad news is I’m drowning in appointments and trying to maintain my work, while feeling like a 90-year-old woman every single day. I’m exhausted.

So yes, I’m alive, but I am most certainly not living. I’m frustrated and running low on hope. And that, my friends, is why I haven’t written much lately.

Almost Famous

I’m pretty much famous at this point after completing my second career radio interview and turning down a television appearance.

My first radio interview was live. When I learned that it would be aired live, I wondered if the people at the radio station would have made a different call if they’d known how awkward and inappropriate I can be. Fortunately, I was able to keep my internal dialogue to myself and successfully stuck to the subject at hand. The interview took place in October and was intended to raise awareness for the American Heart Association Heart Walk. Overall, I felt pretty good about it…probably because I never actually heard it afterwards.

My second radio interview was pre-recorded to allow for editing before being aired. Because of this, I was relaxed about it and was therefore completely unprepared. I’m pretty sure it was a hot mess and am crossing my fingers for some pretty serious editing. The good news for me (bad news for the cause) is that it will air at 6am tomorrow (Sunday), during which time no person of sound mind will be listening. The bad news is that it will be available online by Monday. If I find the recording to be less embarrassing than I currently anticipate, I'll post a link here for all to enjoy. The point of this interview was to raise awareness of Go Red For Women’s National Wear Red Day, which takes place on Friday, February 3 [click here to see photos from last year]. Please wear as much red as possible that day and tell everyone you know why you are dressed up like a giant dot-free ladybug. The goal of Go Red For Women is frankly to stop the killing – heart disease is the #1 killer of women in this country, and it doesn’t have to be.

The television appearance could have been my big break, but unfortunately I’ll be out of town on business the day of the taping. Was I going to be on Ellen? No. The Today Show? Not so much. After all, I’m no Bionic Bride! It was to be an interview with a local tv station that I think has a reach of roughly 17 people in the central New Jersey area. Like I said, could’ve been big.

Remarkably, amid this media firestorm and inescapable jungle of paparazzi, I was also interviewed for an article to be included in the Robert Wood Johnson University Hospital magazine. I always like to recognize the fine folks at RWJUH (except for that one guy that tried to kill me) for the multitude of times they saved my life. If my captivity-driven moodiness (and stench) and unladylike management of the gowns wasn’t enough to fully express my gratitude, I’m sure seeing their names in print (in smaller font than mine) will make up the difference. During this interview, I was also asked if I was willing to be photographed for both the article and potentially future marketing materials…including billboards. That’s right. Soon the fine people of New Jersey may be unable to escape my prematurely wrinkled and unnaturally pale face.

They’ll probably just mistake me for Kate Hudson.

Health Update & Miscellaneous Musings

Thanks for the outpouring of support after my last post, I really appreciated all of the emails and texts. It turns out my cortisol level is actually a little bit high, so that is most definitely not the cause of my fatigue. I am now spending an even unhealthier amount of time on webMD diagnosing myself with all sorts of mysterious diseases. I’m trying not to make myself completely crazy, but I will have plenty of ideas to discuss with my hematologist when I see him again early next month. If nothing comes out of that, I will likely see if I can get a full evaluation at the Mayo Clinic. I hear it’s a great time of year to visit Minnesota.

REALLY?!

• I was totally wiped out after 15 minutes of playing fetch this morning. And I wasn’t even the one doing the fetching.

• Marguerite walked into my office the other day and said, “You look exhausted.” Uh, what’s your point?

• Amanda saw that I elected to put the maximum amount of money in my pre-tax health fund and said, “You put THAT much in your health account?” Um, have we met? I tend to have a few medical bills from time to time…

• Someone is clearly trying to sabotage my new diet plan by bringing leftover Halloween candy into the office every day. I successfully abstained from [amazingly mouth-watering delicious-looking] cupcakes TWICE last week, but those itty bitty teeny tiny candies can’t hurt me, right?

• I never thought taking pills four times a day would feel anything but cumbersome, but after a couple of months of taking meds six times a day, four feels like nothing. It’s all about perspective, I guess.

• I was going to write a post called “Beating the Odds – Part Deux” a few weeks ago but lost steam. Here’s the punchline: I got bed bugs in a hotel on a recent business trip. This was my SECOND encounter with these tiny creatures. Are you &%#@ing kidding me??!

Switching gears, a friend wrote me a note this morning and said, “I hope you find something in each day to be grateful for, whether big or small.” What a great charge for all of us, especially as Thanksgiving draws near.

My November Resolution

As grateful as I am to have survived two years with heart disease and to have a healthy heart that allows me to be here today, I continue to struggle with debilitating fatigue. As I recently told a friend, surviving isn’t enough anymore – I want to actually live again. It becomes pretty depressing to spend each day looking forward to an early bedtime, to sleep away most weekends and to see no light at the end of the tunnel. My energy level has been low for two years now, and I’m sick of it!

Everyone has been blaming my fatigue on anemia even though I have continued to feel bad during times with pretty normal hemoglobin levels. When I went to see my hematologist last week, I was delighted to find that he believes there is something causing this exhaustion beyond anemia. I felt like I was on the show ‘House’ as I watched him and his fellow brainstorm about what might be wrong. Finally, after muttering in terms I didn’t understand, his eyes lit up. He thinks I may have a cortisol deficiency that would have been caused by my adrenal glands being damaged when my organs failed two years ago.

I’ll find out early this week whether or not my cortisol level is abnormal. I really hope it is because it would apparently be a relatively simple fix. However, I’m recommitting to being hopeful and optimistic about finding a solution to this exhaustion – whatever it is.

Most people make New Year’s Resolutions, but after feeling a glimmer of hope and reflecting on my recent mental state, I don’t want to wait another two months. So here’s my November Resolution:

Anemia Be Gone
My hematologist still believes some of my fatigue is being driven by anemia, and we have a plan. Every Friday morning at 7:30 I will have my blood drawn for a hemoglobin level. If it's below a certain point, I'll get a shot of Procrit, which helps stimulate red blood cell production, which treats anemia. My commitment to feeling better is stronger than the physiological inertia that shivers at the sound of a 7:30 appointment in New Brunswick. So far so good – I got my first shot this past Friday.

Battle On
I really hope cortisol is the answer to my nagging exhaustion, but I am committed to finding and fixing whatever else is wrong with me. I do not accept feeling this way. There is a solution.

Choose Happiness
Having an upbeat attitude and optimistic outlook served me well for a year and a half, but I have allowed myself to sink into a spiral of negativity for the last few months. Feeling sad and sorry for myself will only make me feel worse, so I choose instead to be happy. I’m going to believe in a better future – knowing that the occasional pity party is inevitable and normal.

Diet For Good
The less I have believed I can feel good again, the more I have ignored my diet. But I know I can be better. I stuck to a painstaking diet of very low sodium for eight months before my transplant. I effectively stopped eating sweets for the first couple of months after my diabetes diagnosis. But in the last six or eight months, I have almost completely ignored my diet. It started with cheating occasionally but has developed into bad eating habits that I justify with an “I’m not going to live forever so I want to enjoy myself” mentality. While I still wholeheartedly embrace the mentality in general, I know that small improvements in my diet can contribute to a healthier – and happier – lifestyle.

A Brief Update

I had the honor of serving as Survivor Ambassador for the American Heart Association Heart Walk last weekend. I got to do a live radio interview the day before and said a few words at the event itself. I enjoyed both opportunities but the walk itself was the highlight. We had a team of about 15 people plus several babies and my new canine roommate, Piper! Despite the monsoon season we’d been having here in New Jersey, the weather cooperated for the walk. Overall, I’d say it was a success – and much easier physically than last year!

Some other things I’ve been thinking about lately…

- I was joking with friends lately about how convenient it would be to find a phlebotomist boyfriend. I guess I could set my sights a little higher and look for a cardiologist boyfriend, but I don’t want to push my luck.

- I’m thinking about being Frankenstein for Halloween. That should require zero effort.

- I have officially decided to write a book! So far I have four and a half pages. I’m thinking I might complete it by 2032.

It's T-Shirt Time!

Come one, come all to the 2011 Central NJ Heart Walk! It’s hard to believe that October 1 is just ONE week away! It’s definitely time to order the latest limited edition t-shirts!

I am honored to be this year’s survivor ambassador – what an improvement from last year, when I wasn’t sure I could even complete the 5k walk! Experiencing the energy at last year’s walk and having many friends (and my mom) walk with me was really special, and I hope to contribute to that kind of energy again this year. My goal is to give hope to at least one person early in his or her heart disease battle the way people did for me last year.

If you can join the fun but haven’t signed up yet, click here. The more the merrier! Our team name is We Got The Beat.

The We Got The Beat design team has created a versatile selection of shirts for your wearing pleasure – for men, women, toddlers and even pregnant ladies! Go to this link [fast!] to order yours: http://www.cafepress.com/heartwalk2011.

If you can’t attend but want to contribute to this great cause, please click here to make a donation. The American Heart Association works tirelessly to fund important research initiatives and to educate people about the risks and symptoms of heart disease.

Two of my very good friends already participated in the San Francisco Heart Walk – thanks so much to Rachael and Ioana! You guys are the best!

Fire Alarm Lullaby

When you think about an industrial fire alarm going off, it may make you wince. Thoughts of that shrill sound and flashing strobe light don’t evoke positive feelings in most. But among the varied and unpredictable noises in the hospital, the fire alarm recently served as a lullaby for this girl.

Let me start from the beginning. Good news: I have now been sick twice since my transplant, and I have survived. One of my biggest fears last July was getting sick, since commonplace illnesses can be far more debilitating for those with suppressed immune systems. That, combined with the risk of rejection masquerading as a cold or the flu, really caused me to worry about getting sick post-transplant. I had a cold a few months ago that did stick with me longer than it probably would have affected someone with a fully functional immune system, but it was overall uneventful.

More recently I caught something more than a cold. I spent a full day in bed with a horrible headache, followed by vomiting six or seven times through the night until I finally called the heart transplant service in the morning. My nurse advised me to head straight to the emergency room to get checked out. The first priority was determining if I had an infection, which would have been dangerous for me. Fortunately, we determined it was just a virus. The second concern was eliminating the nausea in order to allow me to take my important medications, so I stuck around overnight to be sure I could keep food down.

Well, my visit happened to coincide with Hurricane Irene’s visit, and the hospital lost power late that night. I had been awake after yet another date with the toilet and was trying to get to sleep in spite of the erratic beeps and voices and other sounds that are omnipresent on the heart floors and probably throughout the hospital. Fortunately, the power loss (which was quickly remedied with generators) triggered the fire alarm. This was just the consistent white noise I needed. It lulled me right to sleep, I had the best sleep I’ve ever had in the hospital and I awoke ready to try some breakfast. Breakfast and then lunch stayed with me, and the challenge promptly became finding a route home from New Brunswick in Irene’s aftermath (which was obviously nothing compared to the damage a lot of folks faced).

I’ll consider pulling the alarm during any future visits when a lullaby is needed…but I hope they don’t have a prankster-prevention apparatus like the one featured in the ad below!

What happens to the people that legitimately pull the alarm...you know, when there's a FIRE?

Seven Months Ago Today...

Seven months ago today was National Wear Red Day for the American Heart Association's Go Red for Women movement. In keeping with my recent timeliness, I want to FINALLY share some awesome pictures from that day! In my defense, my good friend (to remain nameless…) took the great office pictures on February 4 and promptly suffered HTWTCA (How-To-Work-The-Camera-Amnesia), so I only received them a few weeks ago when her fabulous husband took matters into his own hands!

I was traveling by air on the big day back in February, which provided a captive audience for my awareness efforts. I had the lady in the window seat pinned in for a good two hours. I didn’t lay my whole story on her, but I did take the opportunity to [briefly] tell her about Go Red for Women and why it’s important to me.

My Go Red Outfit

Meanwhile, back at the office… I’ll let the pictures speak for themselves. I think it's clear that these are some good friends!! (More pictures in photo album page.)

My good buddy Sean ended up staying home sick from work that day. However, thanks to his dedicated friendship (and probably the larger factor – his crazy competitive nature), he rocked his red outfit for the camera before conking out for the day.

Rico went Red remotely too! (Can't get the photo to work...)

And my wonderful cousin Emily dressed her precious little girls up in red for the occasion. Aren’t they sweet?!!

Thanks to all!

Also, mark your calendars: The American Heart Association Central NJ Heart Walk is on October 1. Click here to sign up to walk with our team (WE GOT THE BEAT) or click here to make a donation to this important cause. All support is appreciated!!

Professionalism and Drugs

I learned last week that it’s difficult to simultaneously be professional and take a bunch of drugs. Perhaps that’s been common knowledge for decades when it comes to illegal drugs, but I’m talking about the plethora of prescription meds I take every day.

When I’m physically at my workplace, it’s easier for me to maintain my regimen. Almost all of my coworkers know my story and expect to see me popping pills at any given time. Many even know to stay away from my cubicle when my back is directly to its opening, since that usually means I’m injecting insulin into my exposed gut. This makes it pretty easy to conduct my business throughout a day of conducting business.

However, travel and off-site meetings are a bit of a different story. I went down to my business school alma mater – wahoowah! – last week. It was a great trip and I was able to visit with some old (in more ways than one!) professors and interact with the students. The best part of the trip by far was meeting a very senior executive at my company (“Elizabeth”) and seeing her speak to the students. After the speech, a few colleagues and I were invited to lunch with Elizabeth and a handful of Darden professors and senior staff, including the Dean. It was a pretty impressive group in a pretty fancy private room during a pretty formal meeting – as in, one did not get up and go to the bathroom in the middle.

This could present a problem for a few different types of people. Those with incontinence (or bladder weakness, as I recently learned it’s called) might have trouble in this situation. People with Crohn’s Disease could find themselves in some deep…well, you know. And it's a challenging situation for an insulin-dependent diabetic that also takes oral medications SIX (yep, it has gone up) times a day.

Going into the lunch, I knew the plan was to discuss topics one and two, then eat, then discuss topic three. If the plan had been to eat first, I could have injected beforehand, but I didn’t want to risk dropping on the floor during the first two discussions (though that would have been one way to ensure that Elizabeth remembered me!). So in I went for the pasta salad and other glucose-elevators typically found in these catered situations and willed my pancreas to step up to the plate just this once. When it came time to take my next set of pills, I quietly reached into my bag, pulled out my pouch and was just emptying that timeslot’s meds into my hand (fortunately, it’s more socially acceptable to use Purell in public) when the conversation moved to the Dean, who was seated right next to me at the head of the table. So there I was, with a handful of pills in one hand, my pill organizer in the other and my pouch of goodies spilling into my lap, when the whole table of highly credentialed people turned to face the Dean – and me.

I’m sure no one noticed the pharmacy in my lap; that’s not the point. The point is that it’s difficult to do what I need to do sometimes. I guess it really boils down to something I never fully appreciated until recently: it’s hard to be different. And it’s a pain in the butt to take a handful of pills at six regularly scheduled times, to inject myself with each meal and to prick my finger four times a day.

But, as I frequently remind myself, it’s not as big of a pain as the alternative. So I’ll take it. And one day when I’m not the most junior person in every meeting, maybe I’ll get more comfortable in my drug-dependent body.