I've Come A Long Way, Baby...

As much as I don't feel great right now, I'm doing a heck of a lot better than I was in October. I rediscovered a couple of pictures my dad took on my cell phone when I was still in the CCU and thought I'd share them, along with a much more recent picture from a few weeks ago. I still don't feel or look great, but the pictures illustrate the vast improvement I've made.

I was lucky enough to have my dad here again this weekend. He is a good sport and flies back and forth as often as he can to be with his two girls. We enjoyed having him and we look forward to his next visit. The next visit is scheduled for July 10, but we hope have a reason to see him sooner... Happy Father's Day, Dad!

Ready, Set...Not Yet

Well, you have probably gathered by now that my premonition did not come true. I really thought and hoped my birthday would bring a healthy new heart, but it looks like I’ll have to wait a little longer. So that confirms that I do not have psychic powers – damn. If you are wondering if you need psychic powers to know when I do get a heart, the answer is no. Many of you are on an e-mail distribution list, and my good friend Marguerite is going to post something here on my blog when the time comes. We’ll see if her grammar and wit hold up under pressure.

Every day of this wait for my new heart makes me more passionate about organ donation. Only 37% of the US population is registered to donate organs. Why isn’t it 100%, or at least 50%? Thousands of people die every day in this country. Most are not eligible to donate organs anyway, but many are. 18 people die every day waiting for an organ transplant. This is a solvable problem. We all wish there were cures for cancer and AIDS and MS and diabetes. Unfortunately, there aren’t yet. But there IS a cure for the shortage of organs – more donors. Please encourage your friends and family to consider organ donation. DonateLife.net has answers to any questions you may have about organ donation.

As of June 11, there are 32 people waiting for heart transplants in New Jersey. Ten of these (myself included) are my blood type and my status or above. Maybe I’m next.

I wonder why they call sick people “patients”. This patient ain’t patient.

Pity...Party of One?

The metaphorical restaurant hostess is constantly calling out to me in my mind, inviting me to be seated. I resist most of the time, but sometimes it’s easier just to raise my hand and say – yep, that’s me: the Pity party.

I know I’m lucky to be alive. I know I’m fortunate to be awaiting a heart outside of the hospital. I appreciate that I can work and socialize and maintain a relatively normal life during this ordeal. But sometimes looking on the bright side just requires too much effort. Sometimes I just want to feel sorry for myself. Sometimes I just need to throw myself a pity party.

I’m tired. I’m tired of carrying around a pump for my 24-hour IV meds. I’m tired of waking up early every morning to change them. I’m tired of feeling like I need to wear long sleeves to cover the site. I’m sick of hurrying through my showers so I can reconnect myself to my medicine source. I’m tired of twisting myself up in my tubing while I sleep.

Aside from the IV, I’m just tired of being tired. On the weekends, I sleep about fifteen out of every twenty-four hours. During the week, I’m awake for about two hours each day when I’m not working or commuting. I’m sick of dreading social gatherings because of how exhausting they are. I’m tired of taking the elevator to my second floor office.

Even as I write this, I know it could be so much worse. A friend and coworker lost her battle with breast cancer about a year ago at age 32. Soldiers are injured and killed in Iraq and Afghanistan every day. Plenty of other heart patients are hospitalized or stuck with ventricular assist devices, which are far more cumbersome than my IV pump and defibrillator. Most of the time, I can maintain this perspective and be grateful that I’m alive. But occasionally, I allow myself a brief pity party.

The Bearded Lady

While heart transplantation offers a good prognosis for a bright future, it comes with some drawbacks. I’ll have a long scar down my chest. I’ll have to go in for frequent heart biopsies afterward, causing innumerable additional “vampire bites” on my neck. Perhaps the biggest drawback is the array of medications I’ll need to take for the rest of my life, since like all medications, these come with long lists of side effects – some far more unusual and graphic than others. Some of the standards are nausea, diarrhea, unusual weight gain, hair loss. Fine, we see these on every pharmaceutical advertisement these days. No big deal. But let’s explore some of the more exciting side effects…

Excessive sweating: This one isn’t too far off from my everyday life. My temperature comfort zone is very narrow, so I often find myself either shivering or sweating. A little extra of the latter shouldn’t cramp my style too much.

Mood swings: These will likely be more uncomfortable for my poor mom than for me. We’ll see how long she sticks with me after surgery. I hereby apologize to everyone that experiences one of my mood swings post-op.

Hallucinations: Yikes. I had some very strange hallucinations in the hospital from a combination of what they call “ICU Psychosis” (from being in bed in the same room for weeks on end) and taking Ambien without subsequently being able to sleep. I would look around my hospital room, certain of things that just were not real. There were babies sleeping in nearby cribs and sometimes in my bed with me, causing me to fear rolling over and smothering them. One morning, I was waiting for a pizza my dad had ordered outside a take-out restaurant. My dialysis dressing (a blob of stuff swaddled on my neck) became my parents’ new puppy sitting on my shoulder – and what do we do with a new puppy? We talk to it and pet it, of course. And once around Halloween, I saw a very skinny man in costume perched across my windowsill. Needless to say, I’ll be happier never having hallucinations again.

Puffing of the face (“moon face”): Awesome. Add this to the list of lovely physical changes. Did I mention I’m in two weddings in September? Sorry girls…

Unwanted hair growth: This is the kicker, the king of all side effects for a girl in her late twenties. I read about this on one of my favorite blogs (Helen. With the heart, written by a woman who had a heart transplant several years ago). She said she basically put her waxer’s children through college! Wow. Well, I guess if life gives you lemons, you should make lemonade. So if (when?) life gives me a beard, I’m going to explore joining the circus. I hear the bearded lady gig pays pretty well.

Just for fun, here are a few other good ones:
• Vomiting material that looks like coffee grounds
• Fat deposits around the waist and back of neck
• Gout
• Gum overgrowth

A New Life

My bag is packed for the hospital. Slippers – check. Reading material – check. iPod charger – check. Loose fitting pajamas – check. I’m keeping my coworkers in the loop on what I’m doing at work in the event that I’m not there on Monday. My family and friends are on high alert for when the moment arrives. People are lined up to visit after I get home from the hospital. E-mail lists have been created. I’m moody. I’m watching what I eat, especially lots of protein and no caffeine. I’m exhausted.

If you didn’t know better, wouldn’t you think I was pregnant? Waiting for a heart is actually not that dissimilar from being in one’s final trimester of pregnancy. [In fact, I wonder how horrified my coworkers would be if I suggested we hold an office pool for when my “big day” will be. Just in case, put me down for June 16.] But more to the point, in both situations, a person is waiting for a new life to be born. In the case of a pregnant woman, of course the new life is an entirely separate person (and is a whole lot cuter than a human heart). But I too am awaiting new life. And in both cases, we will treat our new life with great care.

In the way a new mother nurtures her newborn, I will care for my new heart. I will treat it with the utmost respect. I will listen to it and raise my hand if I sense something is wrong. I will feed it the right stuff (fortunately not by breastfeeding!). I will make sure it gets enough rest and plenty of playtime. I will show it off with pride. In all of these ways I will thank and honor my donor, whoever he or she may be. For all of the levity with which I try to treat my situation, I recognize the sadness and loss that will be experienced by my donor’s family and friends, since only once his or her life is taken can my new life be born.

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.