Heroes Among Us

This was a very difficult post to write. My words could never do justice to the full extent of my gratitude or the incredible strength and character exhibited by my donor family, but this is my attempt. Denisha - thank you for allowing me to share our story.

What is a hero?

I would define a hero as someone with the opportunity, the instinct and the will to help others. Maybe it’s the guy that tipped 100% because the waitress looked like she was having a rough day. Maybe it’s the off-duty police officer that jumped in front of a moving train to save a stranger who had fallen onto the tracks. Maybe it’s the mother that starved herself to feed her children.

While I’ve looked up to a variety of people throughout my life, I’ve never really had a hero, per se. Now I have two – one that lives here on earth, and one whose time here was cut short but whose eternal spirit continues to glow. Their names are Denisha and T’neil, mother and daughter. They are the reasons I’m alive, though they would never accept such credit, instead giving all glory to God.

I never had the opportunity to meet T’neil, but I have learned so much about her and know she was a wonderful and beautiful young lady, full of life and loved by so many. She was a 17-year-old rising senior in high school who loved shopping and talking on the phone. She had dreams of joining the Navy, going to college and starting her own business. She had a rare disease that remained undetected until her final days and then took her life quickly. Her strong heart now beats inside of me.

T'neil, who gave me the gift of life.

While I haven’t yet met Denisha in person, I have exchanged letters, texts and phone calls with her. It’s difficult to find words that describe this wonderful woman, for I have never met anyone like her. Selfless, generous, thoughtful, faithful, loving – none of these words is strong enough. In the wake of her daughter’s death, impossibly, Denisha was praying for my recovery and good health. She was worried about me. It is patently clear that Denisha misses her daughter dearly, yet the strength of her faith provides comfort and carries her forward. T’neil had not self-identified as an organ donor, so Denisha was tasked with this difficult decision in what must have been the most painful moments of her life. Yet, she doesn’t describe it as a choice at all. God told her this was T’neil’s opportunity to help others. And help others she did – T’neil was able to donate a multitude of organs and tissue – impacting the lives of more people than can be counted on two hands and saving the lives of several of us.

Denisha has other children, one of whom is T’neil’s twin sister. The pain being experienced by this teenager is simply unimaginable and nothing anyone should have to endure. I hope that she shares her mother’s faith and takes comfort in the lives that her sister improved and saved. I’m sure T’neil lives on in her heart just as much as she lives on in mine.

Denisha and her family associate butterflies with T’neil’s continued presence. In the final days of her life, butterflies kept appearing to her family. They also like to burn candles to allow T’neil’s eternal light to glow. Maybe you will light a candle today in T’neil’s honor and say a prayer for her family.

These are true heroes. They were given the unenviable opportunity to help others in a significant way. The instinct to help came automatically and without hesitation. And they acted on those instincts to deliver the ultimate gift to many fortunate people. Because of this heroism, I am alive today. As I told Denisha, because of this heroism, I can use the word “yet” in so many sentences. I haven’t started a family yet. I haven’t written a book yet. I haven’t skied in the Alps yet. Whether she accepts credit for it or not, Denisha gave me a future, and for that I am eternally grateful.

As I think of T’neil, Denisha and their family, Mariah Carey’s “Hero” comes to mind. Some of the lyrics are below.

To my heroes, thank you. I look forward to meeting you soon. In the meantime, lots of love from my heart.

Mariah Carey – "Hero"

There's a hero

If you look inside your heart

You don't have to be afraid

Of what you are

There's an answer

If you reach into your soul

And the sorrow that you know

Will melt away

And then a hero comes along

With the strength to carry on

And you cast your fears aside

And you know you can survive

So when you feel like hope is gone

Look inside you and be strong

And you'll finally see the truth

That a hero lies in you

Old People Are My People

Old folks have many interesting traits and behaviors, many of which I’ve had the opportunity to study closely over these past 14 months. As you know, I’ve been exposed to this population with an abnormal level of regularity, given my 29 years of age. When I was first in the CCU, I think I was literally the only patient under eighty. During my first visit to the cath lab, I determined I had more teeth than the rest of the patients combined. And at cardiac rehab, there were a few youngsters (in their fifties), but I brought down the average age quite a bit each time I showed up.

One of the most entertaining parts of rehab was observing the staff attempting to communicate with my fellow exercisers, as the fifty-plus crowd is not known for its keen hearing. On my first day, I met a very sweet man we’ll call Dave, who is probably about sixty-five. We became fast friends as we walked at tortoise-like speeds on the treadmill and moved slightly faster than molasses on the stationary bikes. He was my exercise buddy my first few days there, until the rigor of my work out mercifully surpassed his. [After all, age difference aside, I have a healthy new heart – he does not.] Anyway, we remained buddies but no longer followed the same circuit around the gym, so I kept an eye on him as I progressed through my work outs. At least once a day, one of the staff members would instruct him to check his heart monitor leads or ask him a question and receive a blank grin in response. Poor Dave, it turns out, can barely hear a thing. Watching this happen again and again got me wondering if he ever heard anything I said. Were we really buddies those first few days, or did he just wonder why the dumb blonde girl was moving her mouth so much?

Thankfully, I only came across the next example of unique geriatric behavior once. This old fart – quite literally – was blatantly passing gas during his entire work out. And guess who kept finding herself at equipment adjacent to him…ME. When he walked on the treadmill, I was directly behind him. When I was on the air bike (you know, the one that has a fan that blows air while you pedal?), he all but planted himself right in front of me so the fan was blowing his gas into my face as I gasped for air. Gross.

The most enviable thing about old people is their total lack of insecurity. They know who they are, and for the most part don’t care what anyone else thinks – about their clothes, about their opinions…or about their Zumba skills. Several weeks ago I attended a diabetes seminar at the hospital, the theme of which was the importance of exercise for diabetics. Not surprisingly, I was one of two people under 60 in attendance (most were well over 70 and quite overweight). Before the speaker took the stage, the audience was treated to two brief yoga lessons, in which the instructors appropriately tailored their exercises for the geriatric crowd. To really drive home the message that exercise can be fun, a spunky probably-twenty-one-year-old Zumba instructor bounced onto the stage next and insisted that the crowd participate. If you aren’t familiar with Zumba, it is basically a combination of Latin dancing (think lots of hips) and hip hop moves (think lots of booty shaking). Now, bring yourself back to the 70+ audience. It was one of the most entertaining and ridiculous things I have seen in a long time – I spent the entire fifteen minutes wishing as hard as I could that someone could be there to witness it with me and cursing my antiquated phone, which lacks video capability. There was not one audience member whose movements resembled those of the instructor, even a little bit. But they didn’t care, for their inhibitions disappeared decades ago.

I Forgot My Glasses…And Other Things A Patient Doesn't Want To Hear

I had to go into the transplant lab for some blood work this week. While I was there, I overheard Phlebotomist A tell Phlebotomist B that this would be a tough day since she had forgotten her glasses. I immediately gave a silent but earnest “thank you” to the man upstairs for ensuring that phlebotomist B drew my blood that day. Can you imagine a half-blind woman poking around trying to find your veins? Yikes.

I forget a lot of things – I’ve even gotten all the way to my car in the morning without switching from slippers to work shoes (which incidentally wouldn’t be a problem for one of my dear friends at work, ahem) – but I have never gone to the office without my glasses. When you check the clock to see how late you’re running (an important part of my routine), wouldn’t you notice if the numbers were completely blurry? Let’s all just cross our fingers that this woman takes the train to and from work…

Anyway, after that experience, I started thinking about other things I would rather not have heard from medical professionals. I thought I’d share a few of my favorites.

“This is going to pinch a little bit.” This phrase is typically uttered by my cardiologists at the beginning of each biopsy procedure, right before a giant needle is inserted into my neck or groin area. Let’s be clear – a little pinch is far from how I would describe the sensation that follows. However, I have to admit this phrase is far preferable to the old “you may feel a little pain.” When the word pain is used by a physician, something BAD is about to happen. As in, your chest is about to be cracked open and will hurt like all hell for several days.

“You’re a fall risk.” This is a favorite of the nurses in my hospital and probably in a lot of hospitals. The phrase itself, while somewhat demoralizing (especially to a previously quite coordinated and competent twenty-something), is not so bad in its own right. However, its implications are less benign. For example, being a fall risk sometimes means a bed alarm will be set, so that if you try to get out of bed, the alarm will go off. What’s really fun is when you toss and turn endlessly (a frequent occurrence in hospitals) and cause the alarm to erroneously scream when you are finally somewhere close to sleep.

Another fun part of being a fall risk is you must be accompanied to the bathroom. If the “bathroom” is actually a bedside commode, which is frequently the case, the nurse will often remain in the room while you attempt to do your business. As you might imagine, this is extremely awkward. The only thing that makes it worse is when the added pressure of catching (literally) a stool sample is involved. Talk about stage fright.

I’ll leave you with a final favorite from when I was first sick back in October of 2009. Let me preface this with the fact that the nurse involved ended up becoming my absolute favorite nurse EVER – this was my only less-than-perfect experience with her. Having my first Foley (pee pee) catheter “installed” was one of the most uncomfortable (not physically painful, just creepy and yucky) feelings I’ve experienced. Contrary to what you humanitarians might have thought, catheters are often inserted while patients are wide awake. I remember extremely little from those first few days in the hospital, but I remember the Foley installation quite clearly – it made a lasting impression! This was already an undignified moment, to say the least. Then I heard, “oops, I put it in the wrong hole.” In her defense, I don’t think she’d had holes to choose among in a while…not too many females spend a lot of time in the CCU!

Heart Walk 2010

I’ll keep this short and sweet – the pictures tell a better story than I could anyway! Thanks to MANY friends and family members, I was able to raise $3320 for the American Heart Association (and that’s before any company matching programs)! Our team of 10.5 (ten adults and a baby) crossed that finish line with no problem! My sneaky mom even came into town and surprised me at the walk! It was pretty great to get that 5k walk under my belt – now I look forward to a 5k run. Probably WAY forward, but I’ll get there. So far I’ve jogged four minutes in a single work out, two minutes consecutively.

Thank you again to all of the generous donors and a HUGE thank you to Team Andrea:

Mom – VP, Surprise
Marguerite – Fashion Director & Surprise Coordinator
Chris – Manager, Halloween Hair
Breezy – Director of Photography
Nick – Senior Assistant to the Photographer & Chauffeur (for better or worse)
Karin – Manager, Team Spirit
Marion – Manager, Entertainment
Kara – Manager of Two Below Team Members
Sean – Manager of Four Letter Words
Ryan – Cutest Team Mascot Ever

A Year Lost, A Future Found

Every night for a year I have crashed. Again and again, I call my mom to tell her to come back to the hospital because something bad is happening and the nurses want to take me to the ICU. Each night, the nurses and doctors become more and more panicked when my blood pressure can’t be detected by any available apparatus. Over and over, I feel that most awful sensation of extreme heat and lack of oxygen, easily the worst feeling I can imagine. Each night, I reawake stark naked to the room full of doctors and nurses surrounding me perplexed, wondering what the hell is wrong with me. And every time, my mom and a nurse push my stretcher to the CCU at top speeds, while I proclaim over and over again that I’m going to die.

These are like nightmares, in that I seemingly have no control over their presence or outcomes, yet I am fully awake to experience them with total consciousness. This has been my year.

As the anniversary of my illness neared, I wasn’t sure how I would feel on October 19. I hoped I might be able to finally put those memories of crashing to rest – isn’t 365 nights enough? I thought I might feel some sense of accomplishment or closure. I feared I would more acutely feel the dread and terror that fill me every time I relive that awful first night in the hospital.

Mercifully, my hope seems to have come true. In the days since I passed that one-year milestone, I have been able to fall asleep without reliving my nightmare. While I still toss and turn for quite a while before getting to sleep, now it’s because my brain is filled with forward-looking thoughts like my return to work and exercise goals. I feel like an unspeakable burden has finally been lifted. I have not only survived a year marked by pain, heartache, fear and helplessness, but I have survived [and hopefully left behind] a year haunted by psychological ghosts.

While this past year was tough, I am so grateful that my illness fit neatly into just twelve months. So many others are painfully ill for years on end, never knowing when, or even if, they will feel better. While it is true that my illness is not really cured, only held at bay by modern medicine, the potential for what I can now achieve is truly limitless. It is with this in mind that I can now close my eyes and see a real future.

***

It’s been a while since I provided a status update, so here it is: Life is good. I have been doing 57 minutes (with breaks!) of cardio exercise at rehab for a few weeks now. In addition to going to rehab three times a week, I exercise on my own two days. I am resuming work part-time on Monday and return to full-time work on November 15. I now have biopsies just once every four weeks. I am almost off of the steroid, Prednisone. I am getting accustomed to my heart-healthy and diabetes-friendly diet. My biggest complaint is frequent headaches – a long way from the debilitating nausea and pain from a few months ago!

The Power Of One

I was recently reading a piece of fine literature (okay, it was chick lit), when I was reminded of something I learned back in high school. During painful sex education classes, one of the lessons we learned involved the sexual partner exposure chart (below, in case it isn’t as ingrained in your memory as mine!), which basically shows that partners in a given encounter are exposed not only to one another, but also to past partners, causing exponential growth of exposure to sexually transmitted diseases.

Don’t worry (Mom, Dad, coworkers, brothers…), this post is not about promiscuity or STDs! Rather, it is about the premise of exponents that underlies this chart and the potential it affords someone (me!) wishing to spread a message (become an organ donor). Good news: messages can spread even faster than diseases! Similar to the manner in which rumors spread rapidly, a positive message can also permeate our communities and eventually, our society. This requires a concerted effort, yes, but not a cumbersome one. I recreated the sexual exposure chart as one depicting how quickly we can drive the message of organ donation. If each of you asks just three people to become organ donors and requests that they ask three people, and so on, we can make a considerable impact.

Let’s use a concrete example to see just how big of an impact we can make. Let’s assume 100 readers read and accept this challenge. Those 100 people each ask 3 people to become organ donors. Then, those 300 people each ask 3 more people to become donors. After one more layer of people accepts this challenge, we have collectively asked 2,700 people to become organ donors. Now, many of those people will have already chosen to donate, but many will not have even considered it. If about half of the people asked are already donors and the remaining people sign up, we will have enrolled 1,350 new organ donors in a very short amount of time with minimal effort.

It only takes a little imagination to consider the potential if we all asked 10 or 20 people instead of just 3. In a world of Facebook, Twitter and chain e-mails, it hardly seems a challenge to spread the message to our friends and family. The trick will be in motivating people we don’t know to continue the effort and propel the engine forward. We are very aware of the importance of organ donation, but most people don’t know someone who has been saved by this gift of life. A personal story helps, and I am open to suggestions on how to leverage my own. Should I write an e-mail that everyone can send to friends? Or do you want to refer people here to my blog? Should I enhance it with something special? Do you have other ideas? I welcome any and all thoughts! In the meantime, let’s see what kind of impact we can make because the power of one (you!) can be truly remarkable.

Visit www.donatelife.net. Right from the homepage, you can select your state of residence, follow a couple of quick links and sign up. A single donor can save many lives, and it's such an easy choice to make.

Beating the Odds

Bear with me. This post is only depressing in the beginning...

There are statistics that say I won’t live long. Even if one allows for me beating the average, since I am far younger than most heart transplant recipients, my prognosis is far inferior to that of most people I know. As far as odds are concerned, my life span is expected to be relatively short. The longest a patient has lived with a transplanted heart is 31 years. If one assumes that I will match that best-case scenario world record, I will live until I am 60. My parents are both older than 60, and they’re just getting started.

As of last year, 77% of women that received heart transplants in this country lived to see their one-year transplant anniversary, and 67% of women survived for five years post-transplant. So I will most likely make it to at least 35. Sweet.

These are some of the thoughts that whirl around in my head. They often evolve into paranoia about my long-term life plans not coming to fruition. When I was younger, I always imagined I would marry in my late twenties, have kids in my early thirties and live the rest of my life with my happy family, grandkids entering the picture sometime down the line. In reality, I am single with no prospects at the moment. And who will want to sign up to get involved with this girl with such a questionable future?

The answer: no one. Not as long as I have these dark thoughts looming in the back of my mind. However, if I can get control of my neuroses and set out to beat the odds, I can. I have already beaten many odds in my life, and I intend to outlive the longest-living heart transplant recipient by a long-shot.

What odds have I beaten to date? I was wait-listed at the University of Richmond but ended up attending. I graduated cum laude. I was wait-listed at Darden Business School. Again, I performed well and graduated with my ideal job. In October of last year when I was being rushed to the CCU, I repeatedly declared that I was going to die. I later learned the nurse told my mom that most patients who make that proclamation actually do die. Well, I lived. I was hospitalized for a month and eventually came home with a 15% ejection fraction. Most people don’t do much more than get out of bed with that level of heart function. I returned to work.

I will defeat the four things that cause most deaths in cardiac transplant patients:

1. Acute rejection. The risk of this is greatly diminished after the first three to six months post-transplant. I am now at twelve weeks and remain vigilant. So far, I have had very limited rejection – none recently.
2. Infections. I have adopted strict standards of cleanliness, adhere 100% to my prescribed medications to combat infections and carefully monitor myself for symptoms.
3. Coronary artery disease. This is mainly caused by cholesterol, and I am more susceptible than non transplant recipients. I have already altered my eating habits significantly and intend to remain disciplined about the fat and cholesterol I consume…though yes, you better believe I will enjoy a piece of pizza every once in a while!
4. Cancer. Because my immune system is repressed, I am at a much higher risk for cancer than I was pre-transplant, mostly skin cancers and lymphoma. Therefore, I will wear sunscreen, avoid the sun (and become more translucent than anyone thought possible!) and religiously see a dermatologist once a year, in addition to my thorough transplant team.

There is always a first. Maybe I will be the first to live for fifty years post-transplant. The first step is believing it is possible. The below quotes help me get into the right mindset for positive thinking and inspired living. Maybe they will be helpful in whatever you are trying to accomplish, whatever odds you are striving to beat.


“Adversity causes some men to break, others to break records.”
- William A. Ward

“There are no constraints on the human mind, no walls around the human spirit, no barriers to our progress except those we ourselves erect.”
- Ronald Reagan

“According to the laws of aerodynamics, the bumblebee can’t fly either, but the bumblebee doesn’t know anything about the laws of aerodynamics, so it goes ahead and flies anyway.”
- Igor Sikorsky

Things I Never Expected To Say... But Did

My life has obviously changed a lot over the past year, and a lot of things have come my way that I never expected. Among these things are some phrases I never thought I would utter… Below, in no particular order, are the top ten biggest surprises to have come out of my mouth.

1. “Hold the cheese, please.”
Cheese is one of my favorite things, especially when it’s melty. I became aware of the unhealthy relationship I had with cheese when every single card I received after my transplant somehow welcomed me back to the pizza-eating world. People often ask if I’m still on a strict low-sodium diet. I’m not, but I continue to watch my sodium and minimize my cheese consumption because I’m now at increased risk for high cholesterol and other heart-related problems.

2. “My cardiologist…”
End that sentence with anything and it makes the list. I don’t know anyone who expects to require the care of a cardiologist in her twenties.

3. “Hang on a second while I inject myself.”
I’ve never been particularly fearful of needles, but I definitely did not foresee sticking them into myself on a daily basis. Fortunately, my insulin is supposed to be injected into stomach fat, which is in great supply at present.

4. “I live in New Jersey.”
Okay, this one goes back a little further than the past year, but I still haven’t gotten over it. You don’t grow up in Atlanta and spend ten years in Virginia, then anticipate a move to the Dirty Jerz…not that there’s anything wrong with it!

5. “Check out my fake cleavage.”
For the record, I never expected to utter this phrase sans “fake” either (and definitely have not)! My chest scar makes it look like I have some serious cleavage, though, so showing it off is my newest form of entertainment.

6. “I’m nocturnal.”
I have been sleeping from 2 or 3 a.m. until 12 or 1 p.m. lately, with a brief intermission to take my vital signs and pills first thing in the morning. This is obviously not going to jive with my impending return to work, so I am striving to correct this owl-like behavior now.

7. “I was petting my dialysis dressing because I thought it was my parents’ puppy.”
This was never expected on several levels, but nevertheless it came out of my mouth the other day when reminiscing with my wonderful CCU nurses. As you may have read or might remember, I had some pretty bizarre hallucinations a couple of weeks into my first hospital stay last year.

8. “I need to take the elevator.”
I still use elevators for multiple flights of stairs, especially when my heart rate is lower, like when I’ve been sitting for a while. However, I hope not to say this anymore when needing to go up just one or two floors – at least not for MANY years.

9. “Pleeeeze leave the Foley catheter in for one more day.”
The day after my transplant, getting up to use the bedside commode felt too strenuous, so I begged the nurses to let me keep my catheter in a little longer…not a request they heard very often!

10. “Yum, this sugar-free cookie tastes great!”
First of all, I never could have predicted that I would one day voluntarily consume sugar-free cookies. Enter: Diabetes. Secondly, I never dreamed I would actually think one tastes great, but I found these magical cookies at the store this week. The brand is Murray – check them out at murraysugarfree.com if you are interested. I’ve only had the Pecan Shortbread cookies, but I intend to sample other varieties soon - stay tuned!

Signs of Fall

I can’t believe it’s already October! It seems like we went from the dead of summer to chilly fall in a 24-hour period, which I appreciate. Fall is my favorite season, and last year I spent a good portion of it in the hospital. This year, I intend to enjoy this awesome cool weather by spending lots of time outside.

Unfortunately, the American Heart Association 5k walk that was scheduled for yesterday was postponed until later this month because of flooding. It was a big disappointment, but at least now I have more time to get stronger and continue to nurse my foot. Plus, I got some new cushiony kicks to hopefully prevent future foot injuries that I need to break in. They make me feel like I’m walking on spring boards.

My friend Marguerite is sort of rabid about making t-shirts for various events, so she created awesome “Team Andrea” t-shirts for the occasion. We decided to spend some time outside and sport our t-shirts yesterday, despite the postponement.

In other news, I’m now about ten and a half weeks out from surgery and have shown zero rejection in my last several biopsies. I have one more bi-weekly biopsy in a week and a half, then I will only have them once a month – a huge relief. My biopsies are particularly difficult because I apparently have very small veins. I told my cardiologist that’s the daintiest part of my body.

My latest excitement is the development of diabetes. I wasn’t responding to the meds the way the doctors expected, so they tested to see if my pancreas is working. It turns out, my pancreas seems to be working part-time, leaving me with an unusual sort of hybrid of type 1 and type 2 diabetes. Having one of the more straightforward versions is just too boring for me, I guess. I like to keep things exciting. Apparently my pancreas was damaged either when I had multi-organ failure last year or maybe during transplant. So we are experimenting with meds to see what works best. Ideally, I won’t require insulin over the long-term, but right now I inject myself once a day. It’s no fun, but I’m getting used to it. It’s not nearly as scary as I had expected.

My biggest news is that I’m planning to return to work on November 1! I’m very excited about resuming my normal life and using my brain again!

Even as I’m so excited about regaining some normalcy, I remember that so many others are in different stages of this disease. One of my heart failure buddies is on hold (not working, not feeling good), waiting to see if her own heart recovers and she can avoid transplantation altogether. Another just got an LVAD (left ventricular assist device) put in a couple of days ago to bridge her to transplant. Yet another young woman I know in Canada has been awaiting a heart for over a year. I hope that by sharing my small victories and bits of progress, I can reassure these friends that things will get better. I’m a different person than I was a year ago – you will feel good again one day, too.

Now, I’m off for a stroll in the crisp fall air…

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!”

Miscellaneous Musings

Lipstick? Really?

If you were going to see someone waking up from a heart transplant, what would you bring her? Maybe a soft blanket, a favorite book or relaxing music? I didn’t want anything those first couple of days; I was perpetually hot, couldn’t focus enough to read anything and I wasn’t interested in music. But that’s not the point. The point is that I couldn’t have been further from caring about what I looked like – I was focused on not vomiting or moving. So when my mom showed up with a hairbrush and lipstick (which I don’t even wear outside of the ICU), it was a little ridiculous. In her defense, she tried to put herself in my shoes, and lipstick and a hairbrush were what she thought she would have wanted (though in that situation, I think even she would get over that). And I was eventually (several days later) grateful for the hairbrush, but lipstick? Really?

New Arrival

I can’t resist addressing the numerous “congratulations on your new arrival” and “it’s a boy” e-cards I received while in the hospital. During my first hospitalization, the selection of e-cards was even slimmer than it is now, and people sent the new baby cards just to be weird and funny, which I totally appreciated. On almost every one, the sender felt the need to explain the joke to me. During my transplant stay, I received even more of these cards, and the explanations became more and more detailed. People continually explained to me that my new heart really was a new arrival, so the card actually made sense. The funniest part was that every person who sent one of these cards thought it was the most unique and amusing idea! Don’t get me wrong, though, it was very amusing and I LOVED reading every one of them.

Nurse, my Bumex is working.

My neighbor in the hospital last month was one of many patients not allowed to get out of bed on his own. Therefore, every time he wanted to get into his chair or visit the little boys’ room, he had to ring his call button. When one rings the button on that floor, someone picks up a phone at the nurses’ station and asks what the patient needs. I heard it all from this restless neighbor over the course of a few days, but the best request for help was when he rang his bell and simply said, “nurse, my Bumex is working.” Since Bumex is a diuretic used to help people shed fluids, the subtext here is, “I have to pee…and I’m going to continue needing to pee every half hour for a couple of hours, so get used to it.” The only scenario more amusing would have been if he’d said his Colace* was working.

*Colace is a stool softener. :)

The TV Lady

I’ve never been particularly savvy with technology, and I’ve certainly never been an early adopter of new products or trends. No one has ever accused me of being faddish or of changing my tastes with whatever is hot this season. I still occasionally get accused of using the Pony Express.

I didn’t have a cell phone until my sophomore year of college. My current cell phone came out circa 2005. I resisted CDs and DVDs until tapes and videos became obsolete. I was coerced into using text messages a few years ago. I’ve never purchased an MP3 player but finally started using one when I received an iPod Touch as a gift (in 2008). I didn’t have the technology to pipe it into my car until almost a year later. You get the picture.

I certainly never expected myself to be spending so much time on the couch alternatingly employing the varying capabilities of not two but three computing devices (in between firing off text messages on my archaic cell phone). My brothers gave me an iPad for my birthday – quite possibly the greatest gift ever – and it now plays a prominent role in my every day. I love ‘Words with Friends’ and have several games ongoing at all times (if you want to play, the name’s Dre-Bird). I frequently lull myself to sleep with a challenging game of ‘Wheel of Fortune’ or a tough round of ‘Hangman’. I also occupy my time with a couple of news apps and books I’ve downloaded. It’s quite the little machine, ripe with opportunities for passing the time. Then I have my work and home computers, with which I tinker at different times – though don’t worry, the work computer only comes out rarely when I want to check in and see if I’m missing anything critical. Anyway, the point is, I’m pretty much running command central over here and have quickly gone from ‘laggard’ to at least ‘early majority’ for those of you familiar with the New Product Diffusion Curve.

It is with this lens that I critique the television rental system at my hospital. TV is free for those of us in dire enough straits to require care in the ICU or the CCU (along with peeing in bed, one of the perks of being REALLY sick). However, on the regular floors, patients must pay a daily fee to rent the television. I think it’s $4 per day. There are 600 beds total; let’s imagine that 300 of these are on regular floors. In my [vast] experience in the hospital, approximately 50% of patients are too sick to care about watching TV, so that leaves us with 150 rooms renting the television each day the hospital is full. That means a maximum of $600 per day in TV revenue. Small potatoes, right? Now let me tell you how this money is collected. There is a lady who actually identifies herself as the “TV Lady” when she knocks on each of these 150 doors to collect payment every single day. THAT’S the system. A lady walking around the hospital, knocking on doors, collecting $4 from each TV-watching patient. If that isn’t an antiquated system, I don’t know what is. It makes my pre-historic self look like I’m on the forefront of the technology curve.

Every time I see the TV Lady, I am blown away by the inefficiency of this system and flabbergasted that someone hasn’t identified a more cost-effective solution. But I guess I should take comfort in the fact that the brilliant minds are focusing on advancing the technology for things like life-saving organ transplants instead of television rental services. I suppose it would be a far more alarming scenario to seamlessly order my TV service through an automated system and then get a knock at the door from the uniformed “Organ Lady”.


Status update: Yesterday was my four-week anniversary! I have not received my biopsy results yet, but I am feeling good most of the time. Something is wrong with my left foot, which has prevented me from taking my daily walks for a few days, but yesterday I got the go ahead to use the stationary bike at the gym (when there aren’t a lot of people there) and today I rode it for 20 minutes! I've also eaten out at restaurants (outdoors only) and even had my first glass of wine (as documented in the photo below, which I affectionately refer to as fat-face)!

I Hope You Never Know How Good People Are

I’ve been a cynic for most of my 29 years. While I’ve never presumed that people are inherently bad, I’ve certainly never given humanity credit for being particularly good. People are busy, and our survival instincts urge us to look out for #1 and those closest to us. But my new reality has revealed to me just how good people truly are.

I have received the most heart-warming and thoughtful notes from so many people. People I barely know. People I never particularly clicked with. Old friends from whom I’ve drifted apart. Strangers who have been through similar situations. Strangers who have simply heard my story. And of course my close friends and family. While I was in the hospital, I’m pretty sure I set a record for the number of e-cards received for a patient. Now that I’m home, the mailman probably wonders why I receive handfuls of greeting cards most days and frequent packages. The e-mails, Facebook notes and blog comments are equally as overwhelming.

I’ve found that when people sense tragedy or loss or a need of some kind, they respond. They want to help. This is how I would define “good” and this is what I’ve seen over the past ten months. An outpouring of good from all of you.

So no matter what your experience has been lately – you’ve probably fallen out of touch with people you once cared about – don’t assume it’s because they don’t care. They are just busy, as are you. If they find out you need help or support or encouragement, I’m certain they will reemerge by your side. I have witnessed the true good of people – the thoughtfulness, the generosity, the pure love – I just hope you never have a reason to see it first-hand the way I have.

I'm So Glad My Wrists Hurt

People have asked me recently what actually hurts – when I say I’m having discomfort, what do I mean? Good question. It never occurred to me that one might wonder such a thing. Now that I’ve bid adieu to the majority of the pain, I’ll share with you my physical experience from the last two and a half weeks.

The first and worst symptom I felt was nausea, which is apparently typical after being under general anesthesia. I vomited twice the day after surgery. The first time was against all odds, since I hadn’t consumed anything in over 36 hours and had breathing tubes down my throat – that was a bit alarming for me but at least convinced the nurses I was ready to be extubated. The second time was after I drank my first cup of water – like magic, it was instantaneously back in my cup. I spent the next two days being as still as possible and ingesting as little as the nurses would allow. During this time, I also had the pleasure a catheter sticking out of my neck, two tubes (with diameters the size of dimes) emerging from my chest to drain fluids and four external pacing wires in case we needed to give my new heart a boost.

Once the tubes came out and the nausea subsided, the chest pain began, or at least I began to focus on it. Since a heart transplant involves a sternotomy (the sternum is cracked and propped open during surgery), one’s chest is very uncomfortable thereafter. Not only did I experience pain at the incision site, but most of my chest was also covered in tender bruises from the operation. Additionally, a patient is encouraged to breath as deeply as possible and cough as much as possible after surgery to clear the lungs of fluids, and as you might imagine, it is quite uncomfortable to do either when your chest has recently been split open and rejoined with the equivalent of the twisty ties you might use to close up a loaf of bread.

Toward the end of my hospital stay, when I had started eating more solids, I started having really bad indigestion. This is a typical side effect of the steroid I’m on. Previously I would have considered indigestion an uncomfortable nuisance, but this indigestion was quite painful. I now have much more sympathy for those who experience this regularly, as I felt like there was literally a torch burning a hole in my chest. I’ve since increased my dosage of Nexium, which has helped immensely.

My final source of discomfort is my poor wrists. I have maybe the world’s worst veins, which is problematic when undergoing a heart transplant because lots of IVs are required. In order to access my veins, nurses literally had to beat my arms on a repeated basis, which left serious bruises, a few of which are still present two and a half weeks later. The good news is I only notice my wrists hurt when none of the above [more severe] symptoms are present, so I try to be thankful for these times.

As for a status update, I continue to feel better every day. I’ve been walking up and down multiple flights of stairs for exercise the last three days and am taking longer and longer walks outside in the evenings. My last biopsy showed mild organ rejection, which we are treating with increased dosages of my immunosuppressant medications. The meds are causing headaches and numbness in my hands – a welcome substitute for organ rejection. Included are some pictures from today – starting to heal!

Take Another Little Piece Of My Heart...

You know that Janis Joplin song – “Take Another Little Piece Of My Heart”? One stanza of lyrics is below for reference and nostalgia – feel free to belt it out, you know you want to.

     I want you to come on, come on, come on, come on and take it,
     Take another little piece of my heart now, baby,
     Break another little bit of my heart now, darling, yeah.
     Hey! Have another little piece of my heart now, baby, yeah.
     You know you got it if it makes you feel good.

The song is in my head because today marks my two-week transplant anniversary and my cardiologist quite literally took another little piece of my heart this morning. Every week for the first six weeks after transplant, I will get a heart biopsy, which consists of my cardiologist inserting a claw thingie through my neck to grab a piece of heart tissue for testing. [She’s probably really good at that arcade game where you use the claw to try to grab a toy or stuffed animal, but that’s neither here nor there.] For the six weeks after that, I’ll have it done every other week, then monthly, until eventually I will only need to have the procedure once a year.

The biopsy itself takes under an hour and the hardest part is not eating for the ten hours prior. Those of us on large doses of steroids get mighty hungry! After the procedure, I go to the transplant center to talk with the nurses and the pharmacist about my medications. To give you an idea of the array of meds I’m taking, below is a picture of my stash (ONE month's worth). Not pictured are the random pieces of equipment, ranging from a glucometer (the steroid essentially causes [hopefully temporary] diabetes, so I have to test my glucose four times a day) to a scale (yes, I still have the pleasure of weighing myself daily), from a thermometer (I take my temperature twice a day) to a blood pressure cuff (also used twice daily). So if anyone ever wonders what I’m doing at any point during the day, you can be pretty sure I’m either sleeping, taking a pill of some sort or measuring one of my vital signs. This transplant thing is a full-time job!

For a quick status update, I am feeling good most of the time. The ups and downs continue, but the downs are nowhere near as low as they were several days ago. My trusty roommate (my mom) and I walk outside for ten to fifteen minutes each day. I’m beginning to shed some of the fluids, but I still look like I eat roughly a dozen donuts each morning and/or am pregnant. My biggest complaint is incredible indigestion, which is caused by the steroids (hence the giant bottle of Maalox pictured). As I taper the dosages, I expect this to be less and less of a problem. Overall, life is good.

My New Roller Coaster

Roller coasters are generally thought of as entertainment – fun, exhilarating rides that delight children and adults alike. To many however, these same piles of steel symbolize danger and evoke great fear. I think all of us can relate to the ups and downs experienced on a roller coaster – the mounting terror as we slowly ascend the biggest hill, followed by the excitement of the free-fall and then the relief of safety. I think a lot of life can be related to a roller coaster, but post-transplant life seems to provide an even closer metaphor.

The first few days post-transplant were no fun at all. Forget the roller coaster, I felt terrible. I was exhausted but too jittery to sleep. I was weak and thirsty but too nauseated to eat or drink. I was in a lot of pain, and I was terrified that something had gone wrong with my surgery. And I had some moments of serious doubt, wondering if I had made the right decision. Fortunately, this period of misery and despair was short-lived, thanks to the responsive care of my physicians and nurses and the constant reassurance of my parents.

A couple of days after transplant, the roller coaster began. I had a great couple of hours one day, followed by a miserable night. I had a good full day, followed by many hours of pain and discomfort. I have struggled to appreciate the good times for fear that another bad period will soon arrive, but I’m trying to get better about that, trying to stay positive and to appreciate the ups for what they are. I expect weeks, maybe months, of these major ups and downs. But fortunately, I seem to have turned a corner in the last couple of days – I’m definitely spending more time on the up parts of the roller coaster and less time on the downs. And for now, that’s good enough for me.

To be clear, along this roller coaster, I have also made great forward progress. To illustrate, I’ll include a couple of pictures below. The first is when I first came out of surgery and was still intubated and hooked up to twelve different IV medications, the second is when I was up in a chair the next day talking to my surgeon (still with many of the drips but breathing on my own), and the last is my first or second lap around the nurses’ station in the ICU (unhooked temporarily from my last one or two IVs). At this point, I am better enough to be too self-conscious to plaster my picture online! Maybe once I lose these 10-15 pounds of fluid…