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.

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.

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.

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.

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.

Home, Sweet...Hilton Head

Hilton Head Island, South Carolina has long held a special place in my heart. My family started vacationing there in the early nineties, and since 1996 my friends and I have created innumerable memories of our own. I’ve spent a lot of time in Hilton Head, from quick visits to one entire summer during college, and I have a veritable almanac of fond memories from those times spent with friends and family.

But Hilton Head has further entrenched itself in my heart and mind after my most recent visit last week – and for three separate reasons that I’ll share in chronological order. The first treat of the week was getting to spend time with my parents, two of my three brothers, my sister-in-law, and best of all (no offense to the rest of you) my perfect little nephew. This was my second time seeing Baby Michael, and it’s just amazing to see him grow (mostly in width!) and develop. He is starting to grin and respond and even spent some fun time in the pool, which I’m convinced he thought was a giant bathtub. I’m trying to decide if I can justify another trip down south to see him before Thanksgiving…we’ll see. This aunt is smitten.


Look closely, he's rocking his organ donation onesie!

The second thing that happened in Hilton Head was about as special as it gets. I celebrated a full year with my new heart on July 21, and my parents and I met several of my donor’s family members that very day. [In the strangest of coincidences, T’neil’s family and I had planned to be in Hilton Head at the same time.] It’s impossible to articulate how much it meant to me to be able to meet and see and hug my donor’s mother, Denisha. I can’t say enough wonderful things about her warm and loving spirit, and it was a delight to meet her husband, aunt and uncle as well. We all chatted for quite a while, and they each used a stethoscope to hear T’neil’s strong heart beating in my chest. I think that meant the most to them, and I’m so glad I was able to give them a way to truly feel T’neil’s presence again.

Denisha made the call to donate T’neil’s organs last year, since they hadn’t previously discussed the topic. It takes a remarkable person to think of anonymous others when experiencing the anguish of a child’s sudden illness and death. Most of us can’t even imagine; I know I can’t. Denisha is that remarkable person. Her kindness during that impossible time saved many lives, including my own, and improved the lives of countless others. Even through a year of grief and pain, I can tell that she continues to be so proud of all of her children and their accomplishments. She feels T’neil’s presence when candles are lit and when butterflies are seen nearby, and she seems able to maintain focus and joy for her surviving children – especially one that is expecting a baby girl in the fall and another that hopes to go to college on a basketball scholarship. Oh, and she’s pretty focused on her own big birthday coming up in a few weeks, too! Denisha has a truly contagious aura of positivity and warmth around her, and I hope we will be a part of each other’s lives forever. Eventually, I would love to meet T’neil’s many siblings – I’ll be here whenever they are ready.


Isn't Denisha pretty?! I promise she's older than I am...

To round out the week of excitement, nine of my best friends came down to Hilton Head to celebrate my one year anniversary and recent thirtieth birthday. My parents graciously loaned us their house for the week and we happily accepted! People traveled from North Carolina, Boston, Pennsylvania and even Utah for the celebration, and we had a great time. I strayed wildly from my diet for several days, but I figured I could splurge a bit for the occasion.


Most of us!

Now I’m back in New Jersey, preparing for the return to real life tomorrow. After nearly two weeks of vacation, my alarm clock is going to be quite a shock in the morning. But whenever I get tired or frustrated or down, I know I can close my eyes and peruse my internal database of unforgettable memories from Hilton Head Island, both old and new.

T Minus One Week!



Front

I am getting really excited about the big race on June 12! After much deliberation, we have finalized the official See Andrea Run team t-shirts! I’ve purchased shirts for everyone who signed up to join our 5k team but want to make them available to anyone else interested in joining us from afar. The link below will take you to zazzle.com where you can purchase these limited edition gems :)

http://www.zazzle.com/see_andrea_run_tshirt-235257985241462342

Additionally, I want to extend a HUGE thank you to all of those who have donated to this important cause. Thanks to you, we have raised $1,850 so far! I’m so touched by all of the support and feel great about us being able to make such a sizable impact!

If you still want to contribute and/or sign up to join us on June 12, there’s still time! Just click HERE for the team page. You can sign up until the day of the race and donations are accepted until June 17.


Back



See Andrea Run

June 12 seemed really far away when I first learned of the Donate Life 5k. I was sure my goal of running a mile straight was achievable. I secretly hoped I’d be able to run the full 5k but opted for a more modest goal. Theoretically, I thought, a young and otherwise athletic person should be able to run at least a mile ELEVEN months post-transplant.

But things don’t always go as expected – I can certainly attest to that. For a variety of reasons my exercise has progressed more slowly than I’d hoped and running a mile straight remains a lofty goal.

It’s a loft goal yes, but one that I’m fully committed to making a reality in a few short weeks. I know I can do it if I can drum up some serious support! Here’s where you come in.

Do you run? If so, please sign up to walk/run with me! (There is a $25 sign-up fee.) You’ll be supporting me and all future recipients of life-saving transplants in New Jersey. The more people I have jogging [slowly] beside me, the better the chance I have of running that full mile!

Are you loud? A bunch of cheerleaders near the end of the race would move mountains for me. Just picturing cheerleaders helps me push for an extra minute on the treadmill, so imagine the power of a real live cheering section!

Can’t make it in person? Please make a donation of any size to our team! The NJ Sharing Network (also known as Donate Life New Jersey) is the organization responsible for raising awareness of organ donation in this state, matching donors with recipients and facilitating contact between the donor family and transplant recipient. Needless to say, I’m extremely passionate about this wonderful group.

Like t-shirts? You’re in luck. Commemorative team (See Andrea Run) t-shirts are in progress…more to come!

Aside from returning to work, this is my biggest post-transplant milestone thus far. Please help me achieve my goals of raising $1500 for this critical cause and running that full final mile on Sunday, June 12.

The event takes place at 10am in New Providence, NJ. Click on the link below for our team site and look for the buttons that say “donate here” and/or “join this team”.

SEE ANDREA RUN

With your support, I can do this and we can all help raise awareness of organ donation. THANK YOU!!

Nacho Mama, MY Mama

Well, an eleventh hour Happy Mother’s Day to all of the moms out there! I’d say Mother’s Day (with Father’s Day as a close second) is the most important of Hallmark’s invented holidays. There are a lot of mothers that deserve thanks and celebration today, and I’d like to honor four here.

First, my sister-in-law Maggie is celebrating her own motherhood for the first time this year, so this Mother’s Day is extra special! A couple of weeks ago she became mom to the sweetest little monkey in the world, my very first nephew Michael. I can’t wait to meet the little man in a couple of weeks! Maybe the little guy will give you the gift of sleep for your first Mother’s Day!

The second mom I celebrate today is my donor’s mother, Denisha. As I’ve said before, I wholeheartedly admire the strength and courage of this wonderful woman. Even on this first year that she celebrates Mother’s Day with one fewer child in her household, she is able to reach out and think of others. Please join me in praying for this gracious woman today. I am beyond delighted to announce that it looks like I’ll be able to meet Denisha this summer (more to come)!

Third, I celebrate Kathy Ritvo, the woman that trained Mucho Macho Man, a strong contender in yesterday’s Kentucky Derby. She was diagnosed with cardiomyopathy in 2001 (I believe at age 32) and became very ill before receiving a heart transplant in 2008. Shortly after her transplant, Kathy was back to doing what she loved. She credits a desire to be there for her children with helping her hang on in those final weeks before a donor was identified. I’m sure every Mother’s Day is quite the occasion for that family.

And most of all, I celebrate my mom today. I celebrate her for staying home with her four children, all of whom provided some significant challenges along the way. I celebrate the woman who attended every soccer game, from Atlanta to Texas and California to Ohio, despite my inability to appreciate that attention and support at the time. I celebrate the woman who just became a grandmother and is going to be the best darn grandmother on this Earth. I celebrate the woman who is so generous and gives so much of her time to charity. And I celebrate the woman who single-handedly saved my life with that first trip to New Jersey in October 2009, who provided and continues to provide constant support and love through some difficult times and who put her life on complete hold to come live with me for many months so that I could maintain some semblance of my life in New Jersey.

I’m sure you all have wonderful reasons to celebrate your mothers this weekend. I’m sure they have all done wonderful things for you throughout your life. But I have to tell you that the best mom of all is NACHO MAMA, it’s MY MAMA. Happy Mother’s Day, Mom. I love you very much.

Mom and me on Christmas night, 2010.

Winning...Part Deux

First – to belatedly follow-up on “Winning” the first, I am happy to announce that Eva Cauble (oddly another Eva C. winner but I promise a different one!) won the AHA Cookbook challenge for healthy eating tips and recipes! At the bottom of this post is her delicious-looking recipe for homemade granola and the other tips I received. Thanks to those who participated!

No offense to Eva or you other contributors, but what I’m SUPER excited to announce is the fact that I just ran TEN MINUTES straight! This is three minutes more than my previous best and gets me within spitting distance of running a full mile straight, which is my goal for June 12. I have signed up and created a team for the June 12 5k for Donate Life, and I will provide full details very soon. In the meantime, rest assured that I am continuing to push myself. Some work-outs are great, others are brutal – I continue to try to identify trends among the good ones. I think I’ve landed on 1) an empty stomach, 2) plenty of sleep and 3) ensuring my HR is over 120 and climbing before starting to run. Stay tuned for details on the June 12 5k!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Healthy Granola

3 cups old-fashioned rolled oats (not instant)
1 cup sliced almonds
1 cup sunflower seeds
1/2 T ground cinnamon
1/4 t salt
1/2 cup grade A dark amber syrup
2 T butter
1/2 cup craisins
1/2 cup dates
1/2 cup chocolate chips

Preheat oven to 325. Mix together the first 5 ingredients. In a small bowl, stir together the syrup and melted butter. Pour the syrup mixture over the dry ingredients, coating the dry ingredients well. Spread this mixture onto baking sheets (greased or lined with parchment paper) and bake for 30-45 minutes until golden brown, stirring occasionally. Add the craisins, dates, and chocolate chips or whatever dried fruit combination you prefer.

Cookbook Tip
Ellie Krieger (The Food You Crave and So Easy) – healthy, delicious and super easy to make

General Tips
1. Track food intake throughout the day – one free resource is a tracker at www.mypyramidtracker.gov
2. Use a rolling 10-day average of how well you’ve maintained healthy eating habits, this way you won’t have to suffer so much guilt if you cheat or stray one day!

Bueller...Bueller...Bueller...

Hello...is this thing on? I've received a handful of healthy eating tips and recipes, but I was hoping for at least double digits! I KNOW you have a good recipe that is already healthy OR is a traditional recipe made healthier OR is a dessert that doesn't have a ton of sugar OR a tip to get more vitamins and minerals in your diet OR a tip for sticking to a healthy diet OR a low-calorie snack OR something! Please share!

Why? First, to help me! After all, I am trying to stick to a heart-healthy, diabetes-friendly diet (although today was not a particularly successful day). I spent today in focus groups, which tend to cause m&m overloads. Second, to help other readers improve or stick to their diets. And finally, for a chance to win a great cookbook from the American Heart Association.

Pretty please?

See previous post for details. The deadline is Sunday, April 17!

Winning... It's Not Just For Sheen Anymore

I can no longer keep myself from posting a gratuitous Charlie Sheen reference. I haven’t yet decided whether I feel sorry for his public demise, or if I just want him to SHUT UP. It’s quite clear that he is most definitely not winning. Two of you, on the other hand, are indeed winning – great gifts from the American Heart Association! Congratulations to Eva Challen and Katherine (Kaffrin) Edmonds for winning the first BetterU contest! AHA will be mailing you a great assortment of goodies, from a water bottle and jump rope to a yummy cookbook.

As for the rest of you, this is your next chance to win – this time the prize is a nice hard-cover American Heart Association cookbook! You can use it for yourself and your family, or it would make a great gift for someone that could use a little nudge toward a healthier lifestyle!

I’m currently using a cookbook called “Diabetes and Heart Healthy Meals for Two”, which was produced by AHA in collaboration with the American Diabetes Association. I would recommend this cookbook to anyone (diabetic or not) looking for inspiration to eat healthy meals that are also delicious. I’m confident that the one being given away here is just as wonderful as the one I have. Whoever wins will have to give me the full report!

My Aunt Tine recently told me that cinnamon has been shown to have a variety of health benefits, including lowering LDL cholesterol and blood pressure – two common factors in heart disease. I tried drinking it in my coffee, but most of it ended up sticking to the mug, so I now sprinkle it into the grounds before brewing the coffee – talk about winning. I don’t know how much benefit I get without actually ingesting the cinnamon itself, but I think it’s a great example of the little things we can do to try to make more healthful choices.

I’d like to know what little changes you are making to live a healthier lifestyle, whether you joined the BetterU program or not. Do you have a favorite recipe you made more healthy? Have you started taking extra vitamins or supplements, like I'm trying to do with my cinnamon coffee? I can use all the help I can get, so I would appreciate any and all advice – and hopefully your ideas will benefit other readers too!

So, here’s the skinny:

FIRST – send a recipe or any healthy eating tip to me by e-mail or by posting in the comments section

THEN – you have one week, I'll announce the winner on Sunday, April 17

FINALLY – I will share everything I receive so that everyone can benefit from everyone else’s recipes and tips… after all, it’s not ALL about me :)

If, like Charlie, you are tired of pretending you're "not a total bitchin' rock star from Mars" and are ready to start "winning", then send me your recipe or tip today!