Mama said go to rehab, but I said no, no, no...

I’ve had Amy Winehouse’s “Rehab” in my head ever since I scheduled my first cardiac rehab session. Only, I just discovered I’ve been singing the wrong lyrics over and over and over again for weeks! This is not unusual; song lyrics have never been my strong suit. Amy (not Winehouse) will be the first to tell you that I only sing more loudly when I don’t know the words to a song – I either make something up or just belt out an indiscernible cacophony. It turns out there is no mention at all of “mama” in the song “Rehab” and the line I’ve been attempting to sing is actually, “They tried to make me go to rehab, but I said no, no, no.”

Anyway, when “they tried to make me go to rehab,” I said yes, yes, yes! I have now completed three sessions of cardiac rehab (slightly different from the rehab being referenced in the aforementioned song, of course). The workouts have been very light so far, but they will continue to get more rigorous over the next several sessions. Basically, we do five minute increments of various types of cardiac exercise – bike, treadmill, hand bike, elliptical – while hooked up to heart monitors. More than anything, I think I’ll benefit from the peace of mind that comes with knowing there are medical professionals nearby while I first stress my new heart. It’s scary to exert myself. Mentally, I know my heart is healthy and is strong enough to keep up with me. Emotionally, I’ve had some bad experiences with my [old] heart not being able to keep up. Proving to myself that rigorous exercise is perfectly healthy now will go a long way in my emotional recovery.

I think I would fit in better at Amy Winehouse’s drug rehab than at cardiac rehab! I am a little different from my fellow rehabbers. When I first walked into the gym, I easily brought the average age down by twenty years. The oldest patient has to be about 85-years-old. I feel a little weird on the treadmill next to him! The other patients are in their fifties and sixties, and I am the only one in my time slot that has had a heart transplant. So, the fact that I’m about half the age of my colleagues combined with the fact that I’m the only person there with a perfectly healthy heart makes me feel like Superwoman (minus the 6-pack in the picture below and with much bigger cheeks, of course)!

How Do You Feel?

People naturally ask me how I feel a lot. I typically give the shortest answer possible because I don’t know how much information people really want. I figured I would post my feelings here for you to read or not read as you wish. I’m no poet, but the post seemed boring when I wrote it out in prose. So, below is my attempt at a poem that is hopefully slightly better than my previous work, Ode to the Bedside Commode, if not as entertaining.

I feel thankful for the strength of the heartbeat that keeps me up at night.
Every strange sensation in my body causes me to feel fright.
I feel joyful knowing I recently laughed hard enough to leave my chest sore for days.
I feel grateful for the sympathy and support you’ve shown in so many ways.
I feel compelled to drive organ donation and the fight against heart disease.
I feel fearful and frustrated about my newly developed diabetes.
My legs already feel stronger than they’ve felt in well over a year;
I feel motivated and ready now to get my upper body in gear.
I feel most comfortable with a good book in a nice warm bath
And least so on the freezing cold table in the cath lab.
I feel less and less plagued by my medications’ many side effects,
Though I’m always a bit on edge, wondering what might hit me next.
I feel inspired by transplant recipients who go on to do great things
Like run marathons, climb tall mountains and start families.
I feel energetic most of the time, something that used to be so rare,
But I occasionally feel exhausted by the overwhelming nature of my care.
I feel frustrated by the pain in my foot that prevents a long walk or hike,
But I’m glad I can get some good exercise on the stationary bike.
I feel relieved each time I remember I’m no longer tethered to medical equipment.
I feel fulfilled when I can answer a question for a fellow heart patient.
Hand tremors make me feel decrepit but shouldn’t last too many more weeks.
My newfound fear of germs makes me feel like a bit of a freak.
I feel optimistic about the future and grateful for the opportunity to plan for distant dates.
I feel eager to hit the six month mark, when I should return to a pretty normal state.
I feel haunted by what could have happened to me, the “what ifs” play on repeat in my mind.
But mostly, I feel fortunate for the good providence that’s kept me alive since October 2009.

8 Weeks of Progress!

 

Tomorrow marks my 8-week transplanniversary (transplant anniversary), and much has progressed since July 21.

First, I have reclaimed my independence – and my apartment! My dad flew up for a visit and whisked my mom back to Atlanta a few days ago. While I am incredibly grateful for my mom having lived here for over four months and will miss her company, I feel like I’ve just graduated or achieved some other huge milestone. It’s so gratifying to know that I am once again independent and healthy enough to live by myself. The above picture is from our “last supper” in New Brunswick.

Second, tomorrow marks a lot of firsts since my transplant. I will be allowed to drive again, which is a massive relief since being a passenger is like Chinese water torture for me. I have not only been a passenger for the last 8 weeks, but a back-seat passenger at that. Because it would be terrible to get an air bag punch in the chest soon after a sternotomy, I was relegated to the back seat until my chest could heal. I will also be allowed to venture out into public starting tomorrow. I don’t intend to go to the movies on a rainy Saturday or jump on a train anytime soon, but I’ll be able to do my own grocery shopping and otherwise resume normal activities. Finally, I will be allowed to begin more rigorous exercise that includes my upper body. Since my arms are like wet noodles right now, I am looking forward to that. I begin cardiac rehab at the hospital on Monday!

Finally, the most tangible progress is physical. Most of my bruises are gone, though the biggie on my left wrist is being stubborn. My incisions are healing very nicely. I’m including a comparison picture of the two incisions (the little one is where they inserted and removed my internal defibrillator) – the before shot was taking on August 8, the after today, September 14. Even my “bullet holes” have completely filled in, but I’ll spare you the before and after shots. My chest still bothers me when I make a weird motion or sleep in an unusual position, but in general it feels great. The real test was when I sneezed earlier today, and it didn’t hurt a bit!

Thank you for the continued well-wishes! Progress is difficult for me to see on a daily basis, which can be frustrating, but your support and kind words help me appreciate the true progress I’ve made. I hope to report even more progress in another 8 weeks!

“Progress, of the best kind, is comparatively slow. Great results cannot be achieved at once; and we must be satisfied to advance in life as we walk, step by step.”

- Samuel Smiles, Author

It's A Dangerous World

Do you ever have one of those days when you feel like everyone is trying to kill you on the road? You’re minding your own business on your way to work when the jackass in front of you realizes he’s about to miss his turn and slams on his brakes, causing you to narrowly avoid ending up in his trunk. Then just when you think you’re clear, the woman coming from the other direction is crossing into your lane while attempting to apply her new volumizing mascara. She mercifully takes a break to flutter her eyelashes, glances at the road as an afterthought and swerves back into her lane at the last possible minute. Your heart finally stops racing and you’re comfortable enough to really step on the gas, when a granny-mobile pulls out right in front of you at approximately 7 miles per hour, causing your brakes to hiss in revolt. When you finally get to work having narrowly avoided disaster, you feel like you’ve already starred in the latest Hollywood action flick.

Well, that’s how I feel every day post-transplant, except it’s germs trying to kill me instead of bad drivers. I recently went to have a bone density scan and was expected to wait my turn in a roughly 4 by 4 foot room with seven other people already inside. There might as well have been 100 knife-wielding boa constrictors in there. Another day, my mom and I went to dinner at a place where a salad bar comes with your entrée. I have happily eaten from said salad bar multiple times, but now that’s about as appealing as a buffet of eel eyeballs and poisoned darts. Then there are the elevators at the hospital. When I’m stuffed in there with several other people, I feel like I should be wearing a full biohazard suit and gas mask to protect myself from their coughing and sneezing.

This germ-evading behavior is foreign to me. I’ve always been the person to happily take a bath in my sketchy hotel room, to stretch the 7-second rule to more like 7 days and to rather enjoy buffet-style dining. Now however, it is clear that I need to adjust my behavior and adapt to my newly compromised immune system. Each day I try to channel my inner Edye (a VERY germophobic friend from work). This is my new reality – I have to be on my guard all the time. While I used to feel most threatened in my car on the road, now virtually every other place on earth feels more dangerous to me. I guess I’ll just have to arm myself with Clorox wipes and Purell and get used to taking on this dangerous world, one germ at a time.

Start! Heart Walk

I set a goal of running a 5k sometime in the next year or so, but I’m planning to walk one on October 2 (less than 11 weeks post-transplant!). I have been having trouble with my left foot since I picked up my walking regimen and saw an orthopedist on Monday (because hey, why not see one more doctor?). He said I have a bone bruise and advised that I avoid high-impact exercise like walking, but I’m hoping to be better in a few more weeks. If not, there is a turn-off where walkers can opt to do a mile instead of the full 5k. For now, I’m planning to walk the full 5k. I think I can, I think I can…

Anyway, the event is the Start! Heart Walk benefiting the American Heart Association (AHA). The mission of the AHA is “building healthier lives, free of cardiovascular diseases and stroke.” An important part of this mission is spreading awareness of the prevalence of heart disease, promoting familiarity with symptoms and educating health care providers about best practices.

In October 2009, I was misdiagnosed by doctors at an urgent care center and later at the ER, which could have easily led to my death. It’s critical that we know the symptoms of various types of heart disease so we can advocate for our own health. Did you know that heart disease is the #1 killer of Americans (and the #1 killer of women over 25)?

I set a personal goal to raise $500 for heart disease and stroke research and education, which I have already surpassed thanks to your generous contributions! My new goal is to reach $1000 by the end of September. Thank you to those who have already contributed – to the rest of you, please help me reach my new goal and further the fight against heart disease! Also, if you are interested in walking with me (in Bridgewater, NJ), please let me know – the more the merrier!

You can help by making a donation online or by sending a check to me. A donation of any size is greatly appreciated and will help me achieve my goal. Click HERE to visit my personal donation page where you can make a secure online credit card donation. The American Heart Association's online fundraising website has a minimum donation amount of $25, but please feel free to make a smaller donation by sending a check directly to me. Your donation will make a difference in the fight against our nation's #1 and #3 killers - heart disease and stroke. Thank you for your support.


It’s been a while since I’ve shared a status update. Things are good here. Besides the occasional bad day and some lingering side effects like insomnia and a sore chest, I am trending toward normal. Apparently, six months is the magic timeframe after which I will consistently feel normal, so I’m looking forward to that. Today marks my six-week anniversary, and I celebrated with an excitement-free biopsy experience this morning, which is just how we like them. This was my last weekly biopsy, which is a huge relief for my poor neck! I will now have them every other week for six weeks, then they will spread out even more. Wahoo. I’ll find out my rejection score tomorrow or Friday – I have fortunately had no rejection the last two weeks.


About the American Heart Association:“The American Heart Association is the largest voluntary health organization working to prevent, treat and defeat heart disease, stroke and other cardiovascular diseases. These diseases, the Nation's No.1 and No.3 killers, claim more than 865,000 American lives a year. Thanks to all our walkers, donors and volunteers who have accepted the challenge to help fight heart disease and stroke. We cannot achieve our mission without each one of you!”