Sunday, December 30, 2012



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.

Friday, June 22, 2012

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.

Friday, May 11, 2012

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.

Sunday, March 25, 2012

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.

Saturday, March 17, 2012

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.

Sunday, February 26, 2012

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.

Saturday, January 14, 2012

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.