Questions Anyone?

Since this whole “heart thing” began, people have asked me a lot of questions. I know many others have countless questions they haven’t even asked, probably because I rarely summon the energy to answer my phone or respond to e-mails these days – please don’t take it personally, I just spend the vast majority of my time working or sleeping. I hope you know how sincerely grateful I am for all of the positive thoughts and support, despite the crickets you sometimes hear in return. Since I can’t seem to keep up with the emails and cards and phone calls coming my way, I thought I’d address some of the frequently asked questions here.

Do you have dietary restrictions?
Yes, I am currently on a low-sodium and caffeine-free diet. I’m told I can have caffeine again once I have a new ticker, but I’m not sure about the sodium thing…I’m sort of afraid to ask!

What can I do to help?
So many people have asked what they can do, and I’m so grateful for the many offers. Besides a healthy heart (which I don’t want to take from any of you!), I don’t need a thing. I do always enjoy receiving emails and cards with your positive thoughts and well-wishes, so thank you for sending them.

When will the transplant take place?
While it would be great to have the procedure scheduled in advance, heart transplantation just doesn’t work that way. Timing is completely dependent on when a match is identified. While that could happen anytime, my money’s on June. It could be May, it could be September, but the average wait for my hospital is 1.7 months.

How many other people are awaiting hearts?
There are a total of 35 people waiting for hearts in New Jersey, which is the “universe” that I’m concerned with in terms of my wait. There are a total of 8 people (myself included) that are my status or above, have my blood type and have been listed for at least 90 days. There are only 2 females (myself included) listed with my blood type, which is a good thing since one match criterion is body size. I am the only person younger than 35 waiting for a heart in NJ (most are 50-64).

How does the process work once a match is identified?
While a lot of people seem to think doctors can store organs on ice for extended periods of time, unfortunately Encino Man was just a movie. Hearts only last for a few hours after brain death, so once a match is identified, a whirlwind of activity will begin. I’ll get a phone call and will need to report to the hospital within two hours to be prepped for surgery. At the same time, my cardiologist will travel to wherever the heart is located to evaluate it and confirm whether or not it’s a good match. Assuming it is, he will then bring the heart back to my hospital.

How long are surgery and recovery?
The surgery lasts 4-6 hours and is apparently pretty uncomplicated relative to other major operations. I’m told I can expect to feel more energized as soon as I come out of my haze and may be able to walk (albeit not far) the day after surgery. I expect to be in the hospital for 7-10 days, which seems like a blink at this point, and then will continue my recovery from home. I’m not sure how long the full recovery period will be, but I’m thinking I should be pretty normal (at least as compared to how normal I was before this all began…) after 4-6 months.

While I look forward to having the energy to e-mail and call all of my wonderful friends and family, I just don’t seem to have the bandwidth to keep up with more than a few people these days. Even when I don’t respond, please know that I so appreciate the voicemails and e-mails and cards from all of you. I hope this post helped answer some of your questions and I look forward to connecting with each of you once my energy is restored!

I Always Wanted A Personal Chef...

I shared a variety of small bedrooms all four years of college, a situation that today seems just shy of inhumane. I had three housemates the first year after college and then shared a three-bedroom apartment with two friends the two years after that. But ever since I went to business school in 2006, I have lived alone. One gets used to living alone rather quickly, at least I did. Four years of living by myself got me pretty used to having my own space and keeping my own schedule. So the fact that my mom just moved into my small two-bedroom apartment is a recipe for some interesting blog posts, whether rooted in frustration or humor – or likely both.

But while I grow accustomed to my new living situation, I will try to remember that my mom has a far more substantial change to contend with. While I adapt to slightly less space and compromised independence, I am still in my home, surrounded by my things, pursuing my career, etc. My mom’s life has received a much more significant shock. My cramped apartment offers about a tenth of the space of my parents’ Atlanta home, my mom now awakens in New Jersey every morning (a real shock for anyone coming from south of the Mason-Dixon line), she has to look at a map every time she wants to go somewhere (assuming she wants to come back), and she has taken a leave of absence from her job. Not to mention the husband she married about a hundred years ago (okay, more like forty) is hundreds of miles away. And yet, she hasn’t complained once.

Instead, she continues to come up with ways to make my life easier. It has been less than a week since she moved in, and already she has washed and folded my laundry, run some errands, served as a personal shopper and cooked several gourmet (very low sodium) meals. I should note that I may have threatened her with the power of public scrutiny (um, hello – my blog has 47 followers), so she may be working for brownie points here, but so far this is working out just fine. Just fine indeed, as the smell of tonight’s dinner drifts my way… So on the eve of Mother’s Day weekend, I salute my mother. I say thank you for moving to the Dirty Jerz for some indeterminate amount of time to once again baby your youngest child, who is not always perfectly gracious but always intends to be.

As long as she exercises the restraint necessary to keep from rearranging all of my stuff and continues to keep herself from rubbing her bare feet together in that way that drives me completely insane, I’m not sure I’ll ever let her move out. She’s a pretty darn good roommate, and I always wanted a personal chef.

Don't Quit Your Day Job

Someone recently asked me if I was talking to someone about everything that’s going on. I presume he meant a therapist, but it was a little awkward and I didn’t particularly want to prolong the conversation to seek clarification. I don’t think he’s reading my blog. Otherwise, he might know that while I do not physically go somewhere (anymore) to sit on a sofa and talk to a live person, my blog is my therapy, and you – reader – my therapist. I find this relationship far more therapeutic than talking to a real person for several reasons.


1. I don’t have to stress about showing up late. You patiently await my next post, and I don’t have to apologize or make excuses if I go more than a week between visits.


2. I don’t have to sit in a creepy waiting room, awkwardly averting my eyes whenever someone new enters and occupies one of the dingy chairs. The more you try not to look at the other patients, the more you discover what can happen when you don’t take advantage of the wand feature on the vacuum to thoroughly clean the corners of a room.


3. Writing a blog is free, so I thank you for your complimentary services. Those who conduct therapy sessions for a living don’t tend to offer their time gratis…even though most don’t actually DO anything during said time except jot occasional notes and appear pensive.


4. And perhaps the greatest advantage of this “cyber-therapy” is I can enjoy a nice glass of Cabernet while working through my thoughts on my blog, and you, therapist, are none the wiser. At least until now. I think it’s fair to say that a traditional therapist would not look kindly on me bringing booze to our appointments. In fact, that might be grounds for evaluation of a different sort.


So until I run out of material and start pontificating on really mundane things like grocery shopping or sitting in traffic, I hope I won’t need to compensate you for your services. That’s not to say I don’t value your readership and occasional commentary immensely – but rather is a nod to the hope that I won’t need you forever. Please continue to provide your therapeutic services for the many months ahead. Just don’t quit your day job because this time next year, I might be out jogging or dating or travelling the world rather than sitting quietly in front of my computer.

Plan B

Leaving the hospital in November, Plan A involved waiting patiently for my heart to make a full recovery. But there comes a time when you have to fish or cut bait. Being someone with a bias for action in general, the waiting game has not been my idea of a good time. It has now been six months since I was first hospitalized, which is said to be the magic time period during which my heart would either recover or not. It seems the latter is my new reality. Since my stubborn heart has not even shown marginal improvement, it’s time to cut bait and pursue Plan B, a heart transplant.

Back in November, when the doctors first recommended I be listed for transplant, I believed it was unlikely I’d end up needing one, partly because I still didn’t truly appreciate the magnitude of my illness and partly out of sheer hope. So I listened half-heartedly as everyone from the transplant coordinator and the nutritionist to the social worker, pharmacist and even a dentist visited my room to arm me with all the information one could ever want about a heart transplant. I accepted the literature and signed the papers, knowing that with each stroke of the pen, my discharge from the hospital and the prospect of sleeping in my own bed became closer to a reality.

Flash forward five months, and here we are. On April 30, my doctors will relax the restrictions under which I’m currently listed in order to find a match for me as soon as possible thereafter. The bad news is I’m terrified, the wait continues and the next year of my life will likely be less than ideal. The good news is abundant. I have amazing parents who are incredibly supportive. The prognosis for someone of my age and in otherwise good health is excellent. Before long, I will be able to run, ski, swim, travel and otherwise enjoy myself again. I will be able to work again, without the burden of IV medication and fatigue. I have fantastic doctors and nurses whom I trust completely. I’ll have the transplant surgery less than a mile from my apartment. And best of all for my anxious mind, we have a real plan.

While Plan B still involves a wait of indeterminate length, there is a beautiful reward at the end. And though the reward will take some time to be fully realized, since recovery from heart transplantation is not immediate, I know it will be so worthwhile. So, I accept Plan B with open arms and cautious optimism and request two things from you: 1 – please think positive thoughts as my surgery draws nearer every day and 2 – please consider becoming an organ donor. Today, there are over 106,000 people awaiting life-saving organ transplants.

My Own Snow Globe

The past six months of illness and treatment have brought many less-than-attractive changes to my body (which already needed all the help it could get before October). There are the lovely Dracula-esque markings all over my neck. I’ve got a pretty tough three-inch scar above my left breast where my defibrillator was implanted, not to mention the bulge of the actual device pushing against my skin. Then there are the needle marks up and down my arms that probably make strangers think I’m into hardcore drugs.

But the most charming of all of these bodily changes is the extreme dandruff I have developed on my right arm. There’s an area from my elbow to about five inches above my elbow that is not only constantly prevented from getting fresh air but also has not been washed since January. Early January. Can you imagine how disgusting your skin would be if you hadn’t bathed in over four months? That’s the deal with this particular area of my arm (fortunately for my coworkers, not my whole body). Because my PICC (peripherally inserted central catheter) line goes in through my upper right arm, part of it is constantly sealed and sterile (except when my [exceptional] home nurse changes the dressing once a week) and the whole area is hidden beneath my rubber sleeve when I bathe. Pretty much every time I move, a small snow storm erupts near my right arm. It's like my own personal snow globe.

So think about me the next time you skip your daily shower and feel like a slob. Multiply that skipped day by 120 and remember that’s how dirty my arm is. That ought to make you feel better about yourself.

Ode to the Bedside Commode

At different points in my life, I’ve held great affinity for various inventions. Probably the first invention that struck my fancy was the go-kart. A vehicle I could legally drive at age eight? Sign me up. While my affection for this particular item proved rather dangerous, since my brothers routinely launched me from the passenger seat while careening around sharp curves, it remained a favorite for a few years. Later in life, I became enamored with the guide feature offered by most cable providers. I can not only change channels from the couch, but I can also see what’s on every channel before actually committing to it? Yes, please.

But while I was in the hospital, the bedside commode quickly topped my list of admired creations. It’s essentially a portable toilet, for those who can stand but can’t walk the three feet to the big girl bathroom. This is by far the greatest invention of all time. You cannot truly appreciate the majesty of such a creation until you have been using bed pans for a few weeks straight...with what we’ll call “gastrointestinal challenges”. Just imagine my delight at the sight of a nurse rolling in the gleaming white bedside commode one day. This underappreciated piece of equipment afforded me a level of independence and privacy I hadn’t enjoyed in weeks. And as an added bonus, it provided a much-needed second seating option for guests, who frequently believed it to be a benign portable chair.

I'd like to pay tribute to this special potty friend with this Ode to the Bedside Commode.

Oh, Bedside Commode you’ve brought me so much joy
More than any other thing, appliance or toy.
After struggling for weeks to master the bed pan,
You let me sit up to go, so I’m your biggest fan.
I used to like go-karts and the guide on t.v.
But there’s nothing as special as you are to me.
So thank you, Bedside Commode for helping me see
You’re much better than a pan when I need to pee.

Things change, Mox.

For those of you who aren’t [cheesy] movie buffs, the title of this post is a quote from Varsity Blues, a flick oft-quoted during my college days and beyond. “Things change, Mox” (in a sub-par southern accent) is how Ali Larter’s character (Darcy) conveyed that since her boyfriend had become seriously injured, she was newly interested in his best friend and the new starting quarterback, Jonathan ‘Mox’ Moxon. Had she expressed this thought slightly more eloquently, she might have said “the circumstances of my life have changed, so my behavior is also changing.” I assure you I cannot relate to Darcy at any other moment during the movie, especially not her dating Paul Walker or sporting her infamous whipped cream bikini. However, the sentiment of this quote rings true for me now, as the circumstances of my life have indeed changed drastically.

Pre-October 2009, it took a swift kick in the behind to counteract my internal inertia and get me to the gym or outside for a jog. I always hesitated to join my friends on the dance floor at weddings, at least until I had a couple of drinks. Regrettably, I also frequently opted out of weekend social engagements, preferring instead to relax at home and prepare for the week ahead. So as I bemoan my current physical limitations, friends sometimes regard me with a skeptical eye. But with each additional day of limited physical activity, I become more eager to get up and get moving.

The circumstances of my life have changed, and my behavior is changing too. I so look forward to jogging outside on a sunny day, doing exciting things on the weekends and dancing at my friends’ weddings…and hopefully, one day at my own.