Just Another Day

Man, this whole “job thing” is really getting in the way of my blogging! Sorry for the slow-going these days. The below will give you a peek into the ridiculous life I continue to lead…never a dull moment!

A Day In The Life Of This Heart Transplantee

It’s an ice-cold Monday morning, I’m ready to start my day.
I’ve some unique errands to run, then I’ll be on my way.

On my feet there are boots, on my head a warm hat
In my hands three vials of poop and some pee in a vat.

Slipping on the snow and ice on my way to the lab
With my dignity in check – should’ve taken a cab.

For 24 hours I collected excretions of various styles
In a bright orange biohazard jug and three miniature vials.

Remember those old tiny film canisters?
They’d be fine to collect stool from hamsters.

But I’m slightly bigger than those wee animals
So it was a bit like fitting a square peg in a round hole.

Imagine collecting stool in three of these, okay?
It’s definitely not an ideal way to spend the day!

Needless to say I didn’t leave the house,
Didn’t have guests either…not even a mouse.

I have special instructions for two of the four –
These spend the night in the cold, outside my door.

For once I’m glad for the cold weather instead of summer.
Cuz putting the goods in the fridge would be a big bummer.

So off to work I go with my poop and my pee,
Just another day in the life of this heart transplantee.

YES, the canisters came with their own sporks built in!

This Friday Is National Wear Red Day!

This Friday (2/4/11) is not only the day that I fly south in search of warmer weather (and people who want to buy what I sell) – it’s also National Wear Red Day! This special day takes place on the first Friday of February each year to raise awareness of heart disease being the #1 killer of women and to raise funds to further the fight against heart disease.

I’ll be rocking my red and screaming my story (as usual!) and ask that you join me. Would you commit to telling at least two people some simple facts on Friday? Spreading information is the first step in fighting heart disease! For the record, I already have one friend that essentially converted her office into a heart disease awareness center (you da man, Dawn!) and another (to remain anonymous) who has promised to wear red undies – can you top these guys?! I would LOVE to see some fun/crazy “I wore red and_________________” stories in the comments! (For those technically-impaired, e-mail me and I will post the goods myself!)

FAST FACTS

• Heart disease is the #1 killer of women.
• More women die from cardiovascular disease than from the next four causes of death combined – including all forms of cancer.
• A woman dies from cardiovascular disease every minute.
• Only 1 in 5 women believes heart disease is her greatest health threat.

KNOW THE SYMPTOMS

Since my end-stage heart failure was originally misdiagnosed, spreading awareness of symptoms is particularly important to me so that people can advocate for themselves in the future. My story could have been very different if I had recognized my symptoms.

Heart Failure

• Shortness of breath, especially while lying flat
• Swelling due to fluid retention (often in the legs and other limbs, mine first showed up in my abdomen)
• Increased heart rate
• Tiredness, fatigue; persistent coughing or wheezing; lack of appetite, nausea

Heart Attack

• Chest discomfort (pressure, squeezing, fullness or pain)
• Upper body discomfort (one or both arms, back, neck, jaw, stomach)
• Shortness of breath
• Cold sweat, nausea; lightheadedness

I am so grateful for all of the support thus far in joining the fight against heart disease and driving awareness of organ donation. I hope you will join me in wearing red on Friday! For more information, go to www.goredforwomen.org.

GO RED!

Fashion Over Function?

Ever since having my transplant and developing diabetes, various people have been encouraging me to wear some sort of medical alert device. I agree that would be prudent, but I’m 29-years-old. I don’t want to rock some weird old lady bracelet all the time. I don’t want to be automatically stigmatized as “sick” upon meeting new people. The medical alert jewelry industry has developed quite a bit, some of the options are relatively attractive, but they all prominently display the medic alert symbol. I just can’t get on board with that. I almost always prioritize function over fashion, but I just can't do it here.

So I tried writing the critical information on the inside of my green “Donate Life” bracelet that I wear every day, but even the permanent marker I used did not stay on for long. Instead it left my wrist appearing to have a Sanskrit tattoo or something equally bizarre.

It occurred to me that I virtually always have one of two things with me – my keys and my work id tag. So today I researched personalized key chains and id tags to attach to both things. I found a solution in Road ID. The company was founded to provide runners with critical personal information to be used in case of an accident and now sells a variety of identifiers. I chose one I could affix to my key chain and to my work id. It features the date of my transplant, the fact that I am diabetic and emergency contact information.

I would encourage all of you runners, hikers, cyclists, diabetics, transplant recipients, asthmatics, etc. to check out http://www.roadid.com/. The story of how the company got started is pretty compelling.

2 + 3 + 3 = EIGHT

You know those cars that can go from zero to sixty in like three seconds? For that to happen, the car engine obviously has to react as soon as the gas pedal is depressed. Well, that’s essentially how most people’s hearts work. Your body tells your heart it needs to hustle as soon as you exert yourself, which provides you with the proper physiological support. A transplant recipient’s heart operates more like a little four-cylinder vehicle, which works fine once it’s warm but needs some time to catch up after the gas pedal is pushed. Because some nerves are cut during transplantation, it takes time for my heart to figure out that my body needs it to pick up the pace.

So while most gym-goers hop right on the treadmill or elliptical and pump it up to full speed, I need to start out very slowly and work my way up. I begin walking at a leisurely pace, then increase the speed and introduce increasing amounts of incline to get my heart moving. Because I’m only able to get my heart rate up to about 120 walking (resting is 105), my first episode of jogging is really quite miserable. However, once my heart is beating at between 140 and 155 beats per minute, jogging becomes worlds easier. The trick is to insert the right amount of walking between each jogging spurt so that I get a bit of a rest but maintain the high heart rate.

So what in the world does 2 + 3 + 3 = EIGHT mean? That’s the number of minutes I jogged on Sunday as a part of my most intense post-transplant workout yet! I felt like Rocky afterwards. I slowed my pace a little from earlier jogging efforts per my dad’s sage advice and felt much better and was able to run longer, both in terms of time and distance. I spent 35 minutes on the treadmill with eight total minutes of jogging (two minutes, then three minutes, then another three minutes). My new pace is 12 minutes/mile or 5 mph. Not exactly breaking records, but making progress!

I completed the same amount of time on the treadmill tonight, again with the 2 + 3 + 3 jogging format. However, tonight’s experience was pretty brutal. I know everyone has tough workouts sometimes, but it’s frustrating to have ONE good workout and then a bad one. It’s hard to get myself back into the gym after feeling bad, but I’ll try to keep Sunday’s Rocky workout in my brain instead of today’s crappy one. I know my workouts will become more pleasant as my body gets more and more accustomed to being pushed. It’s just sometimes difficult to transition knowing something into actually doing it.

I have a new goal, which will help keep me motivated. Donate Life New Jersey is holding a 5k run/walk on June 12, and I intend to participate. I intend to RUN. Don’t get too excited, I won’t be ready to run the whole thing by then, but my goal is to run at least a mile straight. Who’s coming with me?

Happy New Year!

When I went to the gym this morning (and by “this morning” I mean at 1pm), I expected it to be mobbed with eager exercisers whose new year’s resolutions were to lose weight. That’s a familiar resolution for me, though I don’t believe I ever stuck with my various plans for more than a month or two.

This year I made my new year’s resolution about five months early. My new year celebration began on July 21 (well, really a few days later when I finally started to believe I’d survive). My previous year had been consumed by illness and fear, and I knew that while the next twelve months would still be difficult, they would be filled with progress and new hope. So I resolved to honor my donor by taking great care of the extraordinary gift I’d received.

A couple of months ago, I adjusted the resolution a bit. When I heard on tv that a Chilean miner named Edison Pena had been running while trapped underground and intended to complete the New York City marathon, my ears perked up. What he said next really resonated with me. He said, “I was running to be an active participant in my own salvation.”

So my revised 2011 New Year’s resolution is this: to be an active participant in my own salvation. In this way, I will honor my donor, become the person I want to be for my family and friends, and live a long, healthy life.

I wish you all a happy and healthy 2011 and success with whatever your resolutions may be!

Cheers~

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.