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.