Soldiers, Mountains and Grants

Some big news here at Best Day of Life....from my post over at Go Mighty.

We are sometimes not a great judge of what’s possible.- Maggie Mason

Sometimes all it takes is one phrase to jump start something. I know that this is nothing profound – the Go Mighty community are a people who are sensitive to inspiration. A people for whom sometimes all it takes is one second of permission to change something good into something oh-my-God-what-am-I-doing awesome.

The drive to Glenwood Springs

That’s how this goal started. In June 2010, I scribbled my life list in the car on a road trip to Glenwood Springs with my husband. We were spitballing – just throwing things out there like we do – when “climb a fourteener” made the list. It was a safe item – like “get a tattoo” (which I can’t do without risking the wrath of my stodgy transplant team…but we shall see) – because it would  probably never happen.

And then it did. Twice. And actually one more time in September 2012 which will come in a soon-to-be-written post.

Almost at the top of Mt. Democrat

After taking an online course, I looked back at my list. Emboldened by Maggie Mason's suggestion that this be a living list, I crossed of ”climb a fourteener” and changed it to my secret, only discussed with my husband, life list item:  climb ALL the mountains!

And then I hit publish.

Never did I expect that this goal would make the front page of Go Mighty. Nor did I, in a million years, expect it to win a $1,000 grant! The morning I received the announcement email, I sleepily looked at my phone, put it down, rubbed my eyes and then pulled the covers over my head. Overwhelmed.

FRONT PAGE!

So what does one do with a grant for mountain climbing? Bagging local fourteeners, aside from gear (which can either be minimal (and unsafe) at tennis shoes, a Nalgene bottle and your dog or very high tech, all name-brand and fancy), is not a very expensive sport. I am fortunate to have inherited quite a bit of my gear secondhand from a friend who is a sponsored athlete for an outdoor clothing manufacturer.

Standing in a cloud

Well, as it turns out, my next climb is already on deck. And it’s a fundraiser. I am scheduled to participate in the “What’s Your Everest ” climb to on June 1st to benefit Soldiers to the Summit. S2S is a group dedicated to using the mountain climbing experience as a metaphor for soldiers to start rebuilding their lives after physical or emotional injury post-combat. Even though I am not a soldier, the idea is everyone has an “Everest” - those things that seem too big to ever summit. For me, mountain climbing represents the ultimate in what I couldn’t do before and every time I tackle a mountain I have to face and conquer all those heart failure demons as I climb.

We will be tackling Grays Peak  as a group under the expert leadership of several incredible climbers. Grays is typically done as a twofer with its neighbor, Torreys Peak   I hear rumors that there will be a rogue group headed to the saddle to grab them both. I will be among that company if my snail’s pace allows it.

My grant is headed to this amazing organization, earmarked specifically for this  fundraising climb.  By doing so, I will be able to climb with my favorite partner and husband.  We will be alongside men and women who have sacrificed so much for our country and are looking to overcome a real and present barrier – this 14,278 foot mountain.

We may not sometimes be the best judges of what is possible…indeed yes. I am thrilled and honored to be able to join with this team of wounded warriors to break through our own barriers of what we think possible.

The Rest of the Story

The long awaited finish to the first Fourteener(s) saga. Here is part one and part two.

We had started the day at 5:00 am – too late to be considered an “alpine” start but not so late that it wasn’t still early at the summit of Mt. Democrat. As we headed back, climbing gingerly over the iciest damn rocks I have EVER SEEN, we began to mull the concept of actually continuing on. What the what?

No joke, those are what the rocks looked like. It was hard on knees and balance to crawl down the rocks, and nauseous-terrifying for someone who is afraid to walk across an icy flat parking lot.  At one point, my legs just stopped. I waited for a minute with the desperate hope that maybe someone would just pick me up? Just over this rock? Alas, that’s not how mountain climbing works. I dug deep, took a breath and moved. There was slipping and not a few moments where tears were close, but, since I’m sitting in my chair now, I’m assuming that I made it.

We reached the saddle.  Now, Mt. Democrat sits in a trio of 14,000+ mountains. Actually, it sits in a quadrangle, but apparently there are rules about these things. Democrat’s sister mountains are Mt. Lincoln and Mt. Bross.

From this poorly illustrated picture, you can see that you take one trail up to the saddle. Go left and you are on Democrat. Go right and you head on over to Mt. Cameron and then over to Mt. Lincoln and Brosse. Typically, climbers efficiently try to hit all three (official) 14ers in one day.

A few gels and some water later, Mike, Brian and I headed out. Chris (my husband) had sadly twisted his knee and decided to wait this one out.

We had stopped talking at this point. Breathing the frigid air, my only focus was my next step. It gets too overwhelming when you actually stop to think about how far you need to go…and your very inching progress.

Suddenly we were at the top of something. I saw the handwritten sign surrounded by rocks. Hallelujah! My second fourteener of the day. OMG! My second!

As I prepared my high-fives, Brian shared the sad news. Not all fourteeners are official Fourteeners. Again, what the what?  According to Wikipedia, a 14,000+ peak “must have at least 300 feet (91 m) of prominence to qualify.” Mt.Cameron, while a very nice mountain, did not fit the criteria. Alas, we took our pictures and moved on.

Finally, there in the distance was the top of Mt. Lincoln – a tough chunk of rock sticking out of more rocks. A lot of scrambling, some pulling and a boost later and there we were. It was official – three two fourteeners in one day for this transplant. Overwhelming.

There was a brief discussion of trying to bag Mt. Bross, but Mike wisely decided that I probably had enough. Plus, the biggest danger of Colorado 14ers was beginning to loom overhead – the clouds were breaking from ice to storm clouds. We judged it best to hightail it back to the car.

We made it to the bottom. My legs were shivery shaky – I hadn’t sat down once all day. I remembered all the terrible days of my hospitalization – the time I coded, the time I arrested, the emergency surgery and then I looked at my husband and at my feet. Those feet, his heart and this amazing heart had gotten me up and back. I couldn’t wait to do more.

Life List #5 - On Top of the World, part 2

(see part one of the story here)

Chris and I spent the night before in Fairplay - arriving at nearly midnight and waking after a restless night at 3:30. I'd brought instant oatmeal which we ate liberally loaded with nuts and drank hot tea. I desperately hoped this would be enough to power us through the start of the day. We had a store's worth of REI gear on our persons. I'd bought anything and everything - I had no idea what to expect.

Was I actually going to climb a fourteener?

At 5:00 am we met Mike (my boss) and our friend Brian at the Kite Lake trailhead. It was dark, and Chris and I were quickly outfitted with borrowed headlamps, gloves and poles. All of my extra weight had been redistributed among our crew. Adrenaline quickly replaced my knotted stomach and my four-hours of sleep addled anxiety.

OMG. I was going to climb a fourteener.

The first thing that Mike told us was that we were going to go slow. Really really slow. Even slower than I thought I had ever gone before. So slow that we would be frustrated and want to go faster. That slow. Did we get it? Slow.

The second thing was to remember to breathe. Breathe deeply and continuously. This might sound elementary but have you ever noticed when exercising that you sometimes forget to breathe? It is key as you start gaining vertical feet.

Admiring the ice crystals that were everywhere.

As we started getting closer to the ascent part (the trail was very long), I began to notice something particularly troubling. Everything was coated with a thin sheet of ice. By everything, I mean the trail had turned from dirt to rocks. And the rocks were solid black ice. Yikes.

Ping pong goodness

The darkness finally eased into light and someone commented that it was like being inside a ping-pong ball. We were in a cloud of fog - or maybe just a cloud - we were already at about 12,000 feet.

Um, hello. I was freakin' climbing a fourteener!

See the ice coating my hair. My hairsicles. It was everywhere.

We stopped at 13,000 feet to check pulse ox rates. Mine had slipped to 85. Breathe, I was told. Don't talk, just breathe.

Nanuk of the Mosquito Range

We powered up with electrolyte gels and water as we hit 14,000 feet. Another check of the pulse ox showed mine back up to 95. It never fell below 94 for the remainder of the climb.

Don't be fooled by the sun. These rocks were icy.

One foot after another and all of a sudden, we were there. We were at the top of Mt. Democrat at 14,155 ft. We'd climbed two miles and 2,300 vertical feet. That's a 20% grade. My pulse ox was 95, my heart rate was about 145.

I had just climbed a fourteener!

But wait! There's more...

Life List #5 - On Top of the World, part 1

In August of 2008, my Sunday night small group spontaneously decided to try to climb Mt. Bierstadt. A noble attempt, but we were sadly turned away from the summit - or even close to the summit - by rain and snow. In August.

A September climb of Mt. Elbert yielded similar results - hail stopping us only 100 feet higher than on Bierstadt. Mountain climbing was hard. I was painfully slow, struggled with the heart rate in my nerveless heart, and it seemed as though the weather was always against us. I decided then and there that mountain climbing was not for me. Long hikes, yes. Vertical feet? No.

Fast forward to September 2011. My boss calls me into his office. What's your work out regimen, he asked. You in good shape?

Not particularly phased by the question - we are a fit office and workout routines are a common conversation topic - I launch into a litany of my cardio and strength training regimen. Sometime over the spring I'd amped up my fitness schedule so I was excited to talk about it. Something just clicked into place with me and exercise over the past several months, but that is a topic for another post.

Great, he said. How about on Thursday we climb a fourteener?

Say what?!? 

My initial reaction was no. No. NO. I had a heart transplant a mere five years prior. Had this been forgotten? And what about all this business about my speed? I was slow...way slow... excruciatingly slow. Oh, and my heart rate is cray-zee. Like interval training - it would speed up to the top of my target range while climbing and then I would need to slow down until it hit the bottom before starting the process all over again. It took at least an hour for it to settle at a steady rate. I was a hot mess on a mountain plus, most importantly, I had never even been over 12,000 feet outside of a car.

So of course I said yes.

(to be continued...)

On Not Going Gently

So, what happened in there, the night of my biVAD surgery?

I was sitting with my surgeon, Dr. Awesome, almost a year after my transplant. He was late to the appointment by almost 90 minutes - his last of the day -  but had called ahead to his nurse to ask if I would mind waiting. We were there, ostensibly, to talk about my wiring.

My chest wires to be specific. The ones that sort of look like twist ties wrapping around my sternum were poking me from the inside. None of the options were worth the inconvenience of living with being poked so we continued on to other subjects. 

I actually knew full well what had happened on the night of November 7, 2006. I'd managed to get my hands on my medical records and had pored over them with the help of Google to translate the medical terminology. I'd read the timeline of events and frankly, there in the stark black and white of the doctors' messy handwriting, it hadn't seemed nearly as dire as I had heard. 

He told me the surgery had started out well, especially for someone who was hanging by a thread, in multiple organ failure and on a balloon pump with a heart beat that was as steady as a popcorn machine. Once the biVAD was in, by all accounts, the operation was a success. 

And that's when something bad happened. My blood wouldn't clot. I wouldn't stop bleeding. They did everything, he said. I was loaded with as many clotting agents as probably exist. They talked about just leaving me open to monitor, but in the end decided to close me up and hope for the best. All in all, I received enough transfusions to replace my body's blood at least three times over. He stopped talking for a second. It was out of our hands, he finally said.

It was your will to live.

Even now, I still have a hard time finding the words to describe what happened that day. The day where everything bad that can happen to a heart happened. The day that my family (and friends) pulled together around me like a sweater. The day that God did something that I can never deny.

When you pass through the waters, I will be with you;
and when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned; the flames will not set you ablaze.
- Isaiah 43:2 (NIV)

Life List #30 - My Hair

"Your hair is so long!"

"Yes, I know. I call it my Second Chance Hair."

What is second chance hair? Simply put, it is the hair you get after a traumatic medical event has taken your original(ish) hair. When I left the hospital in 2006, be it the combination of terrible eating, intense stress, lots and lots of new drugs and lack of sleep, I lost a ton of hair. I remember staying to my transplant coordinator - "how can I be growing hair everywhere else and losing it on my head. I am turning into a man!!!"

I was really hopped up on steroids at the time.

My heart failure hair was thin and dry. It was long in my youth but after a while, shorter became the obvious (and much better) way of keeping it.

Then I had it cut super super short in the hospital. It was a great cut, and far easier to keep it out of the blood and the ick and the lack of washing. In the final six weeks I was in the hospital, my hair was washed a whopping 3-4 times. And that included two open heart surgeries. Yikes.

But then it started growing back - darker, curlier and thicker than before. Everyone had an opinion, but it was always...

Hey look at your second chance hair.

Mothers told me that their hair after pregnancy was different. Cancer survivors said the same after chemo. My hair was a visible reminder of the beauty of my heart. Was it increased blood flow? Cyclosporin? Or a secret gift?

#30 - Grow my hair to my waist.

Check.

Going Back

This week I had my annual heart transplant tests - a right heart cath, a left heart cath (aka, I believe, an angiogram), an echo, a VO2 max treadmill stress test and a kabillion labs. The only thing missing from this day of fun was a biopsy, aka the rejection test. Unbeknownst to me, the clinic has stopped doing biopsies for everyone over two years out providing that 1) you are not presenting any rejection symptoms, 2) there have been no med changes, and 3) you have a good history. So no neck poke. Hooray!

Annual test day, in a word, is tough. The tests span two opposite ends of the spectrum - running on a treadmill with snorkel gear in your kisser to flat on your back, stoned on the "juice," and keeping your leg still for four hours. And in between, there are EKGs (at least two), blood draws, IV insertion (three attempts this year) and multiple exposures of any and all body parts. Including the ones that have nothing to do at all with your heart. AT ALL.

I can't help think when I'm doing all this that for 3 1/2 months - and really for the first two years post transplant - that this was my life. I'd automatically extend an arm to a nurse for a draw, it was second nature to rattle off my extensive drug list (including dosages) and I could give you a medical history so fast and complete it would make your head spin.

And I can still do those things (and did) but these year was different. This year, I RAN on my treadmill test for almost a minute - at an 18% grade. That is like running up Mount Massive (okay, for a minute, but still!) I exceeded my age potential by 103% - most heart transplants, due to our physiological differences, don't get to 75%. When I commented that I'd been doing interval training, the doctor warned, "but the test has an incline." To which I responded, "yeah, when I'm not doing intervals, I'm nearly at the machine's incline potential." 'Nuff said.

This year, the number one question was if "I'd gone back to work yet." There were actual looks of surprise when I answered, "Um, yeah...I've been working since five months post-transplant. And yes, I am back full-time. More than full-time some days."

And when the X-ray technician asked me if I "was a good walker" for one second, I wanted to throw that 103% in her face and then sprint to the machine, although despite the fact that I am a GREAT walker, I would've fallen on my doped up ass.

And then I remember that I could've run into the hospital straight from an Ironman competition and that wouldn't change a thing. To them I am a patient, the girl who survived one of the last of the old school bi-VADs, the girl who had her blood replaced three times in twelve hours, the girl who could barely walk when she left the hospital. And I was all those things - without those things, I wouldn't be who I am now. I am so grateful for that experience which gave me my life.

So even if the hospital never sees me as more than my patient number, I know that I am the woman who hiked nine miles in one afternoon on the Colorado trail, who indeed works a full schedule (plus extracurriculars), who dreamed of scrapbooking (literally) while on the cath table instead of grilling the doctors and happily left with her wonderful husband late Tuesday night to go her home with her pets - back to this incredible life.

...And We're Back!

A busy month of packing, moving, traveling, unpacking and then a cold has put me out of commission for a while. But now I'm back.

For those curious about our trip to DC...here is a press release detailing why we went. It even includes me!

My Beautiful Heart

Wow. Two years, two months and two days - an amazing gift.

I had my annual tests on Monday. Everything went well except for the insane amount of sedative. It was probably totally normal for folks accustomed to the juice, but for me, dude, I was toast for a couple of days. Anyway, on to the good stuff!

- Grade zero biopsy – no rejection

- Heart is pumping like a champ – 4.6 liters. Compare that to the 1.5 liters from my pre-transplant days.

- My VO2 max has improved from last year and vastly from years before. I am at 96% of my age potential. Most transplants, due to the physical differences in our cardiovascular anatomy, hover around 75% of age potential.

- My heart is clear of any blockages. I think I could auction my total cholesterol number if I wanted, but to be honest, that's all thanks to Zocor.

After my clinic visit in March, I'm not due back for a year. A YEAR. More on this in a later blog post. In the meantime, here is my Thumper. You can see the outline of the heart and the beautiful clear left coronary arteries. The weird circular things are actually the wires around my sternum.

 

Two Years

On the morning of December 4, 2006, Jan from Immaculate Heart of Mary church had come to visit me in the hospital. I struggled to focus on her words, stories about the latest happenings at church. Am I tired or am I sad?, I found myself drifting. Oh, and I hope I'm not too disgusting looking. But Jan only smiled and stood next to me and prayed for me, prayed that God would grant us the heart we needed.

By now, I had been on the biVAD for almost 4 weeks. I was receiving regular blood transfusions (the perfect drug!) to help relieve the water retention and to keep my anemia at bay. Eating was pure misery - most of my nutrients came from the delicious feeding tube "sludge" diet. Yum! I needed almost constant oxygen. Most humbling was my inability to care for my basic needs. I was a mess.

Not just a mess physically but emotionally too. Over the course of the days before, I'd been getting more and more depressed. I was wearing down. The darkness was right there, hanging out on the edges. I felt broken, separated from everything I'd once known and held tightly. My grip had been loosened and I was slack.

The day before, Lisa left, headed to Palm Springs for 9 long days for a seminar called, coincidentally called "Date with Destiny." I didn't really want her to leave. She'd been planning the trip for months. Back in my previous life, so long before when I'd first gone into the hospital, back when we were sure I would've gotten the transplant by now, she'd described it to me with shining eyes. I knew she had to go. I told her that perhaps this week would be both our dates with destiny.

After Jan left on that Monday morning, I fell asleep. As much as the the constant thump-thump-thump of the biVADs was tiring, it was also oddly comforting. I had a dream that I was in my bed with little puppies and kittens snuggling with my VADs. All of us comforted by the heartbeat. When I woke up, alone in my room, I knew the time had come to decide what to do with the sadness; somewhere along the line, I had lost my sense of Sarah. Half the time, I felt more like a machine than a girl and the other half the time, I just wanted to cry.

It was time to get it together so I got into my chair and started a crossword. Simple, nothing exciting but just deliberately choosing to do something felt good. It felt great, and by the time my friend Marianne showed up to visit, I was beginning to feel a little of my old self creeping back and the darkness receded a little.

Around 8:00 pm, the door opened and four nurses came in. They stood there silently - each shifting a bit and blinking a lot - and grinning from ear to ear. I was a little confused. I assumed it was shift-change and they would start swarming around my IV speaking their nurse-talk. Instead, they just stood there. One of them started crying and through a huge smile, another said "we may have found one!"

I went as still inside as the biVAD would let me. Oh. My. God. Then I said something seriously creative like, "Are you kidding?" . They nodded and someone cautioned me about getting too excited. Not get too excited? Ha! I felt tears coming and said, "someone get over here and hug me!" I was immediately surrounded.

I called Mom and Dad, not really sure to hope or not. Pretty soon, my feeding tube was shut off. Goodbye dear sludge; ye shall not be missed. Throwing caution to the wind, I called Lisa and my bosses who were in the Hong Kong airport on their hour layover before heading to Tokyo. They put me on speakerphone and I tried not to cry. In the middle of all this, the nurses took about a gallon of blood and started me on the immunosuppressents. Mom and Dad arrived. Had time really stopped or was it just me?

I moved to the bed. Surgery was scheduled to start at 12:30 am on December 5th. Time was moving very fast. I wanted to remember this night forever so I asked Dad to get his video camera (which was handily in the car). I was visited by the OR nursing staff, most of whom I already knew from my VAD surgery. I signed the form. I consented to have my heart replaced. Then it was time.

Everyone, nurses and doctors alike, stopped and stood by the bed. Mom said a prayer for the hands of the doctor, in gratitude for their amazing service and for healing. The world felt soft around the edges. As per our arrangement, once the bed started moving, Mom read Psalm 121 - "I lift my eyes up to the hills - where does my help come from? My help comes from the Lord." Mom kept stride by the bed as we moved down the hall. All the way to elevator, the sounds of the VAD, the respectful silence of the nurses and voice of my mother are what I remember. The Lord is my Shepherd. I shall not want.

My entry into the OR was at the same time as Dr. Awesome, my surgeon. I asked him if his hands were feeling steady. Ha. I am so lame. The atmosphere was relaxed in the OR - shouldn't you people be a little more urgent? I remember thinking. I asked if I could walk to the OR table if I wanted. They said that would be fine. I was too wigged out to actually do it, but I liked knowing that I could if I wanted.

The oxygen mask came down over my face - just like in the movies - and I felt myself growing drowsy. My final thoughts before succumbing to the anesthesia were...Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me.

And then I was out.

----------

And now it is two years later. Two years of mountains (both figurative and literal), monitoring, and pushing forward with a determination and drive I didn't know existed in me. Was it worth it? Hell yes, every beat of that VAD, every blood draw, every ounce of pain was so freakin' worth it. This LIFE - while it is busy as hell - is the life that I CHOSE by saying YES to every lifesaving measure possible, YES to giving up all control and YES to replacing my failing heart with that of a total stranger.

Every day I wake up with a prayer of gratitude on my lips. I am grateful to the people who invented every fancy machine and drug that has kept me alive. I am grateful for the surgeons, the doctors, the nurses, and the CNAs for their single-minded vision of saving my life. I am grateful for my friends, my family, my coworkers and my love for giving me a reason to live. I am grateful to God for being a part of this plan. And for the heart of the the amazing donor who has now fused with my soul to become this new creation.

To Uncle

Dear Uncle,

I am calling you this because honestly, until today, I never knew your name was Steve. This is always what Liz has called you - just Uncle. I only met you a couple of times so I never got to taste the fabulous ribs that your niece talked about this morning or hear your jazz collection. However, even though I didn't really know you, I certainly know the kind of man you were. And how your simple actions made such an impact in my life - a life that remained mostly unknown to you.

You did an amazing thing in the fall of 2006 by saying yes to a sick young woman - the daughter of your late brother. Liz's heart was failing and her life was falling apart. She needed a new heart and a home. You offered your home and a chance for that new heart.

When I met Liz on that mid-October night, about 10:00 pm, it was by chance. I was headed to the ice machine and happened to see that the patient in the room across the hall also had my cardiologist and my same ridiculous liquid restriction. There were plenty of liquid restrictions on the floor but currently there weren't any heart patients and certainly no young'uns.

Sitting on the bed was a woman, maybe my age? maybe a bit younger?, with long blond hair pulled up in a ponytail. She was bent over her meal tray coloring with crayons in a kids coloring book. There was a little dish of hard candy next to her crayons. Her room was empty, unlike my room crowded with hand-drawn banners and pictures. A Halloween movie was on the television.

I think I may have startled her when I poked my head in and asked, "hey, you get ever tired of hearing that you are too young for this?" She looked up, her blue eyes were guarded.

"Yeah," she was suspicious. Later I learned that she was thinking, who the hell is this all in my business? I don't blame her. I was, after all, very much in her business. I was a little nervous, a little scared and a little hopeful.

Until Liz, I'd spent all 18 years of my heart condition without ever meeting any other woman or person my age with cardiomyopathy. I had a cadre of old-man friends - Jim and Ray and the other cardiac rehab guys that were my comrades in low-sodium diets, lasix and beta blockers. But they all developed their conditions late in life. None of them had been told they couldn't have kids because of their heart. None of them worried about making lifetime commitments for fear that a future wouldn't be theirs.

Unbelievably (or maybe not, on second thought), there she was. In end-stage heart failure like me, bloated like me, out-of-breath like me, unsure like me, a little angry like me, and also, unfortunately, tiny like me. I couldn't believe it. Here, after being absent my whole life, I'd finally met a friend - a fellow patient - in for the same reason, the same thing. It was an instant and painful connection.

The next morning the doctors asked me if I had met the new patient yet. A young woman named Liz. I had - and despite the initial excitement of meeting someone else, there was another more pressing question in both our minds. Were we competing for a heart?

The doctors said no. But Liz and I knew better. We were both very very small - and as we quickly found out - we had the same blood type too. This relationship - on such fragile ground could go either way. I did the only thing I could do. I gave it up to God.

A wise friend of mine recently told me that God always puts what we need, not necessarily what we think we want, in front of us. God put Liz there, front and center. It was up to me to decide.

So we became friends. We liked to hang out together at night and walk with our IVs to the IMCU waiting room to sneak Doritos and Funyans from the vending machine. I learned of her hard life in California, her fresh start here and her struggle to find a family. We talked about our fears and the long roads already behind us. We talked about girl stuff. We played games in my room and we cried. A lot.

Eventually Liz left to go home. We were never again able hang out together on the floor. From then on, we were on our own but always so close. The doctors wouldn't tell us anything about each other, but the nurses kept us updated. There were times when we were rooms apart but couldn't walk to see each other and were too tired to call. Chris and my parents would shuttle info back and forth as they could.

And God's plan was His plan all along. The heart that was maybe, possibly supposed to be mine - but really never was - went to Liz on November 11th. When the news was broken to me, gently for fear I would respond in anger or jealousy, I cried with joy. I called her and in my voice, raspy from the ventilator, told her that she would blaze the trail for us both. She needed to tell me everything - she would forever be my sister-in-transplant.

Ironically enough, this northern California girl who came to Colorado for a heart, had her heart custom delivered from the Bay area. She may be the only person whose heart actually did leave San Francisco.

Uncle, you have no idea what bringing Liz out here has done for me. You've given me an awesome gift. A friend to walk with me on this hardest of paths. A sister to understand the frustrations, the struggles, the pain - someone with whom I can cry, laugh and above all, shout "I HATE BIOPSIES" and will totally understand. Someone who is ALWAYS on my side, no matter what.

For all of this, I say thank you. Thank you for opening your heart and your home to Liz. Thank you for giving me this wonderful friend whom I dearly love.

Rest in peace, Steve.

My Fault

"Can I ask you something personal?" That's how many of the conversations about my heart transplant start. Of course, is my reply. Believe me, it's hard to surprise me with a new question.

Every once in a while, though, someone will surprise me. I've actually had several conversations with people in the "personal responsibility" school. Someone who will say to me, "but don't you think maybe you are responsible for this happening?" That throughout my life, I've made a series of choices which have lead up to this critical event. Seriously? Yes, that makes perfect sense. Juvenile fibromatosis is every three-year old's dream.

I firmly believe that we need to take responsibility for what is ours. We can control certain factors that can worsen or even cause our own health conditions. I put this into practice myself. Both pre- and post-transplant, I've made sure to eat right, exercise and follow my doctor's orders and recommendations. I have always been proactive about researching every drug, every medical procedure and even track my lab results. I am a patient who, as one of my doctors says, requires more information before making a decision than any patient he has ever had. I am my own best science experiment.

But even under all this surveillance and care, I still had to have a heart transplant. Not the cheapest of procedures to have. Not the cheapest of conditions to maintain. Not the cheapest of health insurance policies to need.

That stupid argument that all our health issues are a direct result of our own choices is bull. I have had that discussion with several friends but I could've had it with John McCain. Here is what he has to say about health and mental health care:

I have stressed the central role of personal responsibility in leading to lower health care costs. Personal fitness and better lifestyles, especially reduction in addictions of all types – food, narcotics, or cigarettes – can yield dramatic improvements in the cost of chronic illness and high‐cost medical care. We can do a better job of treating addictions, but we also have an obligation to do a better job of teaching our children the benefits of good lifestyles and the perils of addictive activities.

Compare the candidates views on health care and the priority of mental health care in their campaigns. The choice is clear.

Obama/Biden 2008. Vote.

I Know I Shouldn't Care Now (but I sorta do)

Out shopping tonight for snacks (you should never shop on a full stomach either; you never buy any snacks) and found Nissan low sodium ramen. Not a big deal with my new totally-fine-with-real-ramen heart, right? Of course.

However, I can't help but feel just a teeny-tiny prick of annoyance. Despite my high-falutin' gourmet, non-processed food sensibilities, back in the low-sodium day, my favorite food was ramen. It was a great way to mainline salt in a craving but a rare treat. I spent HOURS looking at sodium contents trying to figure out a way to justify it. I would've given my right tooth to have found this version.

So now, they've finally come out with a low sodium version. Right about the time I've stopped eating it. I don't care, I bought a package anyway and ate the whole thing. Just to celebrate the new life while honoring the old struggle.

And Now for Something Completely Different

Dear beloved supporters,

It's been a long time since I've sent out an update – partly because my life became very busy but mostly because there was nothing terribly exciting to report. Nothing has changed except for a simple desire to reconnect with you all and let you know how I am doing. The short answer is that I am doing, how can I put this modestly?, freakin' awesome. Read on for the looooong answer....

I also wanted to answer the question that I get asked the most: How is life different with a new heart? I attempted to answer that question a couple of months post transplant when I was euphoric to be waking up in my bed on this side of heaven every morning. Everything in that answer was true – but oh my, if I could've told myself where my heart would take me in less than 18 months, I would've called myself a liar and stomped off.

Luckily for all involved I was able to find out organically. So, what has changed? On the surface, my life almost looks virtually the same as my pre-transplant years. I'm still singing, I'm still working, and, I'm still living a very full and busy life. But that's only the beginning.

The one thing I didn't count on when I got out of the hospital on that snowy December 2006 day was how long recovery was going to take. I wasn't stupid – I knew it would take months of rehab and sleep (lots and lots of sleep) to get righted but I had no idea it would take until May. MAY 2008.



The good thing about this time was that I didn't know I was still recovering. Every day I felt better but it was so subtle that I assumed I was done. I returned to my pre -transplant activities with renewed vigor. Even so, I searched for differences between then and now and to my mind, they seemed slight: I was happy to have the extra energy required to manage two choruses; dancing was easier and I did have a clearer head and quicker mind at work. I couldn't decide what was new and what could be chalked up to enthusiasm for getting back to my life. I sorta figured that my heart was giving me the extra energy I needed to live my pre-transplant life to the fullest.

There was one thing that was different and I knew it: my workouts. Working out? As in exercise? Sweet fancy moses, yes. I love working out. I could see constant and consistent improvement. But I still had worked out back in the day - well before transplant and even before my deterioration starting in 2004 I was doing yoga, light exercise and Pilate's. Apparently, the Miss Thing that I am had some pretty high standards for recovery that even I didn't know about.



And then came May 2008. That's right. May of this year. I'd settled into a nice routine - back to activities and having a blast. I decided to challenge myself and see what Thumper could really do. So I decided, with Chris and Lisa and my good friends (hi Kris, Steve, Deb and Brian!), to do the BolderBOULDER. The night before, I was freaking out. I''d never gone 10K in a workout and most certainly had never gone that far, on foot, at any point in my life. What was I thinking?

But the next day, in the rain and cool, we got our butts out there and did it. Less than two hours after starting (1:50 to be exact) I RAN over the finish line (watch the video here). I suddenly knew I was better. And it wasn't a drug plateau, or just extra energy or just enthusiasm. This was the real deal. I was SIGNIFICANTLY BETTER than I was before. Better than I have EVER BEEN.



I'd turned a corner. This was what it was like. I've never know what this would feel like. In heart failure, I was considered "well-compensated." I'd been living with it for so long and from such a young age, my body had grown up thinking it was normal. I was used to lower limitations and tiredness as a way of life. Even my most health and energetic times were nothing like this. As an example, when I was feeling some of the best ever - in my early 20s - I went to a concert at Red Rocks. My good friend (thanks Tammy!) had to CARRY me up the stairs because, despite as well-adjusted as I was, I just couldn't do it. Two weeks ago, I climbed 1200 vertical feet to "summit" at 12,500 feet on Mt.Bierstadt . We were turned away from the real summit because of weather. It made that Red Rocks day seem far far away.

There have been other changes. I think many people thought, myself included, that the greatest and most awesome change would've been a simple element: salt. All my adult life, I'd been wishing and praying for the ability to eat regular foods and not have to watch my sodium. When the nurse in my transplant orientation meeting back in the hospital said that I would eventually be able to eat anywhere from 2000 to 5000 milligrams of sodium per day (compared to less than 500mgs – seriously) I wondered how fast I could get a new heart into my body. It was all I could dream about.

Then there was something about the VAD experience that cut that dream short. I was separated from my beloved food. I wasn't interested in eating it, reading about it, watching TV about it or even thinking about it. I now know that I had to die to that idol. I had to find my comfort elsewhere. That separation profoundly affected me.

And not surprisingly, eating regular foods wasn't the first thing I wanted to do when I got out. The first thing I wanted to do was move. Exercise. Maybe it is a specific gift from my specific donor but the urge is undeniable. I'm even writing this after a work out that consisted of riding my bicycle from the office to the gym, another 30 minutes on the treadmill at a 10% incline and a round of weights on the circuit machines.

Don't get me wrong, though, I still love eating normal food. I love bread and pho and cheese and soups and…I could go on. But it isn't the same. I appreciate the convenience of being able to eat out without retribution or easily creating a nice healthy dinner without cooking everything from scratch. But I don't eat chips non stop or mainline pretzels. Oddly enough, I think about dessert the most. That is new for me – I had no restrictions on sweets pre-transplant. Now I crave them. Another gift from my donor I am guessing.



As if a second chance weren't enough, I now have the desire and the ability to DO STUFF. And do stuff I do. Along with the sweets craving, the exercise habits, I've developed an unlikely and profound addiction to video games. Oh, the mysteries of 18 year old males. I love this heart for its youth and strength. It makes me happy to give back by playing a little Wii. That's my excuse, people, and I am sticking to it.

I am awe-struck by how my heart has continued to change my life. I continue to pray for the family of my donor – that one day I may get to meet them and thank them in person. In the meantime, though, I start every day in gratitude for this gift and praise God for giving me this incredible second chance.

Lastly, I wanted to thank the over 100 friends, family and supporters that came to my party in January. What a blow out! I was so happy to celebrate that milestone with you and I am touched beyond belief that so many of you came. For those who weren't there, you were missed! My very talented father created a video for the event – if you were not there or wish to see it again, you can find it here.

I am truly blessed to have this life.



I will write again in time to share more of my life. Until then, I remain yours in love and gratitude,

Sarah T (the "T" stands for Transplant!) Hassell

Everything Must Go!

This past week I've been literally cleaning out the closets. When my company downsized many years ago, we offloaded an office stocked for 300 people. The dregs of that massive effort, as I discovered last week, were STILL in the cabinets.

Deplorable.

As I stood in the "kitchen", looking through our storage cabinet in there, I remembered obsessively keeping the cabinet the same over the course of the last several years. "Mustn't throw anything out..." I imagined myself muttering. "Must keep my precious the same."

Tricksy packrats.

Enough was enough. I realized that I've been afraid to throw anything away for the last 5 years. Time to let it all go. ALL of it go. A dumping spree ensued with hopefully benefiting those who can't buy their own school supplies.

Change propagates change. This weekend, Chris and I are doing the same with our house. It's time to move forward, not hang on to the past. My new heart pushed me into my future - and I'm claiming it.

Go forth and change.