Showing posts with label Post-transplant. Show all posts
Showing posts with label Post-transplant. Show all posts

Thursday, April 25, 2013

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.

Saturday, February 20, 2010

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.

Sunday, August 24, 2008

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.

Saturday, August 23, 2008

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

Wednesday, August 20, 2008

Defying Gravity

It was a spur of the moment decision - we were all free the following weekend so naturally, why not camp? Our original intent was to go backpacking, but lack of equipment forced us to consider car camping locations instead. We decided to camp at Guanella Pass, just south of Georgetown with, oh my goodness I could hardly believe it, an assault on the summit of Mt. Bierstadt.

Conditions were lovely as we started out on Saturday morning - it was hot in Boulder and the sun followed us up I-70 and almost to our campsite. We unloaded, set up our tents and watched the clouds roll in while enjoying our makeshift lunches. Sprinkles of rain sent us retreating to our tents for afternoon naps. Aside from the blaring music in the camp next door, a peaceful stillness reigned even as the thunderstorm amped up.

Once the skies opened up, Chris and I zipped out of our tent to set up a tarp for the wood. Immediately, my jacket was soaked. So much for my assumed-waterproof winter coat, but my brand new hiking boots were keeping my feet warm and dry. Once the rain subsided to large drips off the trees and one trip back to the town to get new water, we emerged from our tents for dinner and fellowship.

Sunday dawned in a cold mist that we kept hoping would burn off. We ate our pancakes quickly and pulled on our warmest to climb. Lisa met us at the top of the pass - the trailhead - and outfitted me with more weatherproof gear. Thank goodness for outdoorsy sisters. We started off towards Mt. Bierstadt, considered one of the easiest 14ers at 14,060 feet. Starting at 11,700, the climb would be 6-7 miles and take us up 2,800 vertical feet.

Here is us starting out.



The hike takes you across a huge portion of marshland - up and down 200 vertical feet - before starting the climbing. The expected burn off never happened but the clouds held in a mild coolness and we were soon sweating.

I'll be honest, the climb wasn't easy. Once the inclines started, I would hike until my heart rate got to 160 or so before stopping for a break. Interval mountain training is how I like to think of it. After about a minute, we'd start back up the next hill. We talked about my donor, wondering if he'd ever done something like this. He's always present.

I felt bad stopping everyone so we sent part of our group ahead with Chris, Lisa and I trailing. I was embarrassed until I looked behind me and saw other climbers doing the same thing.



Wending and weaving our way up the mountain, we stopped and started. I couldn't believe I was doing this. I couldn't believe how hard it was but how easy at the same time. We were getting a workout.



It began to rain as we summmited our first mini-mountain. Not just heavy mist, but RAIN. People coming down told us it was snowing at the summit. We were in good rain gear but no one was prepared for snow. We weren't prepared and frankly, we didn't want to deal with it. So we started back down.

I'm telling you, coming down the steep inclines, even over the scree, wasn't hard but going across that marshland was a killer. Any hike that ends going up isn't a fun walk. We trudged - literally - over the walkways and through the stream. My legs were like lead but I was so proud of myself. I had done it - we hadn't finished but the mountain will be there at least a few more days. We'd gone 1,200 vertical feet, topped out at 12,500 and traveled about 5.2 miles.



One of my goals is to get one of these babies under my belt. We'll try again. Anyone else want to join?