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…