Transplant Games, Cleveland Ohio (June 10-15) Part II

I told you in part I about the 5K, the Opening Ceremony, my poker playing experience as well as a couple of awesome workshops I attended. That puts us up to Tuesday...

Pinwheels were placed all along the lawn across from the convention center. They were marvelous! Lake Erie barely making an appearance in the background.

Trivia

My second event to compete in was group trivia. I did not know that I was supposed to come as a team with my state group so I ended up being placed with a bunch of random people who were fun to play with. Our team consisted of an older heart transplant man, an intestinal transplant woman my age (!), a cool vegan hippy kidney transplant guy from southern California, a liver transplant man who was the only living man with some crazy liver disorder, his brother (possible liver donor?), and me, a double lung transplant. We were quite the diverse group! Anyway, we didn't do great, but we did okay, and we had fun coming up with some of the answers.

Our trivia score sheet

After trivia was done, I wandered around and ended up meeting a couple of amazing women: a mother (liver recipient), her daughter (her living donor) and her daughter's friend. I ended up talking mostly to the friend, who told me the story of the daughter's donation and what a mess it had been, a story I'm not sure the daughter herself would have shared.

First of all, the initial surgery had gone great, both mom and daughter did fine. Subsequently, the daughter's incision had gotten infected with MRSA while in the hospital in Upstate New York. She ended up being in the hospital for months. The scar wouldn't heal for a year. Her abdominal muscles had nowhere to reattach since the fascia wasn't healed. She had a long series of hernias, something like ten surgeries over the last ten years. Finally, she came to Cleveland Clinic last year and things are looking up. What an ordeal! (Apparently I'm not the only one who thought she has an incredible story - she was going to be interviewed by NPR's Story Corps later that day.) The crazy thing is that she doesn't seem to have any hard feelings or regrets. Wow! 

The Lung Gathering 

I'd actually been really looking forward to a special gathering Tuesday afternoon for lung transplant recipients. It turned out to be a bit disappointing. First of all, I hate things that are disorganized. It was well after 4, when we were supposed to meet, and the woman in charge and her friends had set up a table for us to sign in and other than that, it was total chaos. She had been assigned a cubby hole area for the meeting but there were no chairs there while outside the area, about ten feet away, were about 500 chairs that no one was using.

Me getting pecked in the head by the Transplant Games mascot

Trying to be outgoing, I stepped up to get a name tag and then tried to mingle. It was weird; I had expected a lot of CF-people to be there. But there weren't! At least not the typical CF-looking ones. (I don't mean that in an offensive way, I mostly fit the criteria for that, too.) It was a bunch of normal-ish looking people young and old. I did meet an older biker dude from Missoula, Montana who has ridden 500,000 miles across the country since his transplant. Amazing! I chatted more with a man who'd been sitting at my trivia table earlier. He was a really cool guy, double lung transplant. The one person there who I "knew" and had wanted to introduce myself to and chat with was Isabel Stenzel Byrnes (aka Isa Stenzel) but she came late and had to leave early. Overall, I noticed - both at the gathering and at the Games in general - that there seemed to be more people starting to live longer with lung transplants. Several people had gone 10-15 years. I guess that is encouraging, but the statistics are still really scary. Thank goodness I don't believe in them! 

Closing Ceremony

Wednesday, the last day, was a free day for me except for the Closing Ceremony in the evening. Before the closing ceremony, our team met at a pizza place not far from Fourth Street to enjoy some fellowship. One of my teammates, Robin, and her husband had bought a bunch of fun stuff like crowns, princess tiaras and glow jewelry at the Dollar Store which we decorated with Sharpies and donned for the closing ceremony after we ate.

Team North Carolina, in our ugly orange shirts, before the closing ceremony

Turned out there wasn't much of an official closing ceremony - everything was very informal, people were milling around with drinks, music was performed in the background, there were food trucks. My teammate Robin had won the singing competition and was selected to be one of two individual singers to perform! But there wasn't much organized activity. (I had been eagerly waiting for the announcement of the location of the next Games, but that never came.)

Mary Ann and I sat for a bit, wandered around looking for ice cream, I picked up my last pin (the highly coveted frog from Puerto Rico!) By the end of the night, Mary Ann and I ended up eating an ice cream bar, a gourmet "tiny doughnut" and the best gelato I've had in my life (chocolate sea salt). 

Overall Thoughts and Impressions

I think that the Transplant Games is something that every transplant patient should experience at least once in their post-transplant lifetime. A lot of the closeness, kindness and kinship that I felt is hard to put into words. I guess it's kind of like when I first discovered the online CF forums almost 15 years ago - like I was coming home to this place of understanding that I didn't know existed: I had found my people, my tribe! I would not be like I am today without them.

The amount of love, support, listening and learning that takes place both in the CF and now in lung transplant communities have been such an important part of my ability to deal with everything I've been through. These friends can be completely honest without having any sort of agenda. They can take a lost you and help you find yourself again. It's different than support from friends and family, your doctors encouraging you to be diligent and exercise. They're folks who know the exact way to pick you up when you're down because they have been through it themselves and have figured a way out. 

The other thing is, I'm pretty sure I met a few people at the Games who meet the definition of what it means to "beat the odds." You wouldn't believe the stories...transplanted at the last minute, having been through ungodly side effects, never having been expected to make it. But they did. They did make it. And honestly, that's why I don't put so much value into statistics anymore. You only know as much as what's possible for one human being to accomplish.

So I will leave you with that. I fully intend to go to the Transplant Games next time (they are held every two years.) I still await anxiously to know where they will be held (please, universe, someplace awesome!) In fact, my friend Jess is heading up our 2018 team, and I am going to be her right hand woman, so I'm expecting a much smoother, fun and organized time of it. There's so much to look forward to! I may even try to do some "real sports" next time. :)

 This Is Important!!

Please consider helping all of the amazing people like me who are depending on life-saving organs by becoming an organ, eye and tissue donor today. It doesn't matter how old or imperfect your health is - one person can save as many as 8 lives and enhance as many as 50.

Sign me up today!

Transplant Games, Cleveland Ohio (June 10-15) Part I

My Cleveland Family and I before the 5K

This year, after much planning, preparation and pulling our hair out (another story entirely), my good friend Jess and I made it to the Transplant Games in Cleveland. Getting there, it turned out to be very true in our case, was a victory in itself - everything else was, well, pretty much the amazing experience we hoped we'd get out of it. We have some great stories, memories and new friends to show for it as well.

I was excited about the Cleveland trip not only because of the Games but because I also have family there - Mary Ann, my step-mother, Jay, my step-brother (and his wife, Kerri), Amy, my step-sister (and her significant other) and Elaina, Maria and Elise, my three step-nieces. Plus a few cool hounds among them. My father, whom most of you know, passed away in May of 2015.

I left for Cleveland a few days early. My step-mom and I hit a few of our usual haunts (a furniture/jewelry resale shop, always good for a new treasure or two), a high-end resale shop (run by these insane old women whose chatting and bickering makes the whole shopping experience worth it - and sometimes you can find a really great pair of pants or a cashmere sweater, too. We also hit a couple of new spots in this part of town I'd never been to  called Coventry. It had some cool vintage clothing/uniquities shops (unfortunately no good iced coffee).

The family got together for pizza and hung out in Amy's back yard with her girls, we drank some wine, laughed a lot, you get the point. It was good summer visiting in the Midwest.

A chilly Southerner enjoying yard time with family and the bestest lap dog, Gracie

Opening Ceremonies

The Games started on Friday; the Opening Ceremony wasn't until Saturday though. On Friday night, Mary Ann and I went down to "Transplant Village" to get my registration packet and make sure we were registered for the 5K walk/race in the morning.

We made it!! Jess and I before the 5K

Saturday, we woke up bright and early. Mary Ann and I met Jay, Kerri and Amy down at the convention center. The whole family decided to do the walk together! It was so hot (by Cleveland standards, like 90 degrees) that everyone turned off at the one-mile mark except for Kerri and I who soldiered on! And it was on that leg of the walk that I heard one of the craziest stories of the Games - about a mother receiving a transplanted liver from her son and both had found out subsequently that they had Alpha-1 disorder. That's horrible!

We did finish the 5K! Although we were so slow that our family had started worrying about us and trying to call apparently. But we did it! Afterward, a proper celebration with the family at La Fiesta including the famous blue margaritas (which I had to try.)

"They felt as real as any family that would be here with
me and for that I am grateful." ~my journal

After a nap, we were off to the Opening Ceremony. Collected some state pins (Explanation: all of the state teams come to the Games with their own state pin, something about that state, etc. Our team brought enough pins to trade with all of the other teams, the objective being to collect all of the cool pins for the year!)

Pins, pins, pins!!

After some confusion, our team managed to all sit together. The ceremony was really good! One of the Cavs' announcers (SO HOT right then) was the MC. There were crazy stunt bikes, some music, acknowledgement of the donor families, people telling their stories and some live speakers. Ickey Woods (former pro football player) talked about losing his 18-year old son, the painful process of deciding to have him be an organ donor and starting a foundation in his son's honor. They even surprised him by bringing his son's lung donor to meet him in person. Very touching. (As a side-note, I liked how they included so many non-white people into the opening ceremony. I'm pretty sure this was deliberate as even though organ donation has started catching on as a whole, it is still not as popular for certain groups of non-whites who are disproportionately developing problems leading to the  need for transplant - having more racial diversity in the pool increases the odds for these people especially.)

With Ickey Woods

Poker

My first event was Sunday at noon: Texas Hold 'Em Poker! I did not finish well, but I was extremely proud of how I played. I think I succeeded at being a more aggressive player than I used to be because some of the other people at the table were scared of me! I played very well the first hour, had some cards and had two or three times the stack of anyone. 

The second hour didn't quite go as well. I underplayed and lost a couple of biggish hands. But the real problem was that I kept going head-to-head with this guy (total amateur) who was playing all hands, good and bad, the same stupid way. I shouldn't have let him get under my skin, but he seemed to have an agenda to stop letting me win big hands. I ended up going out against him, bastard, with pocket 10s (he had quad 7s) that I'd pushed really hard and eventually went all-in with - it was a 'go big or go home' moment that didn't go my way. Anyway, I met some other cool guys at the table including a guy who had beat leukemia twice with about 15 surgeries and another guy from Vegas who was a kidney transplant and does all kinds of work now with Donate Life and at-risk kids. And he's a crazy climber.

My poker table: it was a nice, easy game...mostly

Workshop Sessions

Monday I went to two really great workshop sessions: the first was on the increased cancer risk after transplant and what can be done about it. A man from the group TRIO (Transplant Recipients International Organization), also a longtime kidney transplant patient, came to speak to us about this important topic. The group talk mainly focused on skin cancer, as it effects ALL transplantees equally - we are about 50 times more likely than the general population to get basal or squamous cell carcinoma (fortunately not melanoma!) But there are all kinds of other cancers too, unfortunately for which we are at higher risk. Trios is working to put together an extensive website of cancer information and they are also interested in getting basic proactive checks more into the minds and practics of physicians who treat transplant patients.

The second workshop was about learning to tell your story (and advocate organ donation) when running into a stranger, chatting with someone at a party or telling your story as a speech or talk. Of course I loved those tips in terms of translating them into writing. This is something I've struggled with a bit - it's complicated (maybe another blog post one day.) But the whole thing inspired me to start thinking about how I could actually start composing a memoir.

I didn't have anything to do after that so I wandered a bit. Ended up running into a few old timers of the Transplant Games. One was the official mascot for the Georgia team, Mrs. Peanut! Another guy and his wife had been coming to the games for something like 20-plus years. I ended up following them to the Quilt Pinning Ceremony, which I thought would be hokey but turned out to be really cool. About 15 donor families had made squares in honor of their loved one they had lost. They came up one-at-a-time to the microphone and gave a teary summary of their loved one's situation. It was very touching.

The well-seasoned transplant games crew!
Mrs. Peanut is in the middle

To be continued...

 This Is Important!!

Please consider helping all of the amazing people like me who are depending on life-saving organs by becoming an organ, eye and tissue donor today. It doesn't matter how old or imperfect your health is - one person can save as many as 8 lives and enhance as many as 50.

Sign me up today!

 

May 2016 Europe Trip

We'd packed, planned and prepared for every possible thing and finally it was time. On the 30th of May, we loaded up the car with the dogs and our giant international suitcases to drive to the mountains for two nights, pre-flight. We were going to be leaving our dogs with a friend up at our mountain house. And we were flying out of Charlotte which is a shorter drive from Newland than Raleigh.

On Monday, May 2 (our anniversary!), we flew from Charlotte to London to Dusseldorf, Germany. My brother was there smiling at the airport to greet us. We proceeded to take the train to the city he is living in for the summer with his wife and son, Bochum, Germany, about an hour and a half away.

We spent four nights in and around Bochum followed by three nights in Ghent, Belgium. We did one side trip to Bruges, Belgium. Both Ghent and Bruges have many Medieval buildings in tact. Here are pictures from Germany (mostly Bochum), Ghent and Bruges Belgium.

The bakeries were amazing!!

Nate and I at Bochum Central Park

Asparagus season - asparagus everything!!

Todd and I outside a restaurant in Bochum

My nephew Simon riding his balance bike - all the rage among German kinder!

Some delicious beer at a bar in Bochum

Some kind of danger sign

Bochum Central Park is FILLED with rabbits!!

Bar selfie - the kids behind me are playing a bar game with stacks of coasters that we couldn't quite understand. Still interesting to try!

A familiarity to any Starbucks patron

More delicious pastries in Bochum

Brother Nate and his son Simon on a day trip we took to a town near Bochum

Todd looking out the castle window

Some kind of crazy German drink comprised of wheat beer and fruity stuff

Todd entertaining our nephew at a restaurant

Getting labs while in Germany. Quite the adventure that was!

A renovated castle restaurant we visited which had (Todd claims) the best waffles in all of Germany

Aunt Laura entertaining nephew Simon - he pretty much thinks I'm the bomb

Picture of me taken on top of the castle with awesome waffles that I'm sure involved climbing a ton of steps - go me!

Simon charging ahead on the self-guided tour

Just another torture chamber picture, no big deal

Some guy was selling a bunch of Nazi memorabilia at a flea market in Ghent. Why not?

A beautiful city garden in Bruges, Belgium

Adorable owl chocolates in Bruges, Belgium

View of old buildings from the canal tour perspective in Bruges, Belgium

Deliciousness everywhere in Belgium

A late night walk, viewing lighted up buildings in Ghent, Belgium

There were town squares everywhere in Belgium

An old canning machine at Zot brewery in Bruges

So many interesting confectioneries in Bruges

Another night time picture: view of buildings across the canal

Night reflection of lights in Ghent, Belgium

Best. Waffle. Ever. Eaten canal-side in Ghent

View of the canal in Ghent, Belgium

The dragon head! Used to sit atop a famous tower in Ghent, Belgium

Delicious beer, anyone??

Part Two: Ireland!

On May 10, we had a hellishly long journey - three trains, two taxis, two planes, one bus and our wonderful tour guide/host/friend Tom - to get from Ghent to Dusseldorf to Dublin. We had a horrible delay at London City Airport. (If you've never heard of that airport it's because it's so damn small!!) At least we were comped a bunch of vouchers. The airport was having technical difficulties with their monitors inside the terminal so there were a huge number of people who had missed flights crammed into that place.

Our time in Ireland, spent mostly with Todd's best friend Tom, was very enjoyable and relaxing. We were so fortunate in that Tom took us to parts of the west coast that we didn't see on our last trip and not only was the scenery amazing but (something you totally can't control which is usually cloudy/rainy and yuk) the weather was incredible too!

We stayed the first night at Tom's, traveled on the West coast for four nights, and then spent the remaining four nights back at Tom's (with Maria, too!)

Our first stop setting out for the West coast in Ireland was, of course, a distillery. Here, an old wheel in Kilbeggan Distillery.

Ah...vats of fermenting whiskey

The bloody Cliffs of Mohr!

I kicked ass hiking around at the Cliffs. Go lungs!

A really ancient burial or ceremonial structure

There was some creepy/cool stuff at some of the old grave sites we visited at ruins of abbeys. Here, the virgin herself.

Grave markers outside the old abbey

Ruins at an abbey

Tower at one of the Abbey ruins. Nothing phallic going on here!

I love the stones that are so old you can barely read them: smoothed by the sands of time and overgrown by mother nature.

Former mill and attached house that Yeates built/restored. Right next to a beautiful river in the middle of nowhere Ireland

Everyone loves an Irish door, no?

My go-to alcoholic beverage in Ireland. If only I liked whisky!

Guinness sign in Old Irish

Deciding on whiskey...so many choices, so little time...

A Connemara pony! These horses are bred specifically to be shorter and stouter than other houses so they can best work the soft, watery terrain of the region.

Connemara National Park: I managed ~1/3 of the way up and Tom and Todd made it all the way to the top!

A picture of a bog woman...so fantastically creepy!! There are 4 famous bog people in Ireland. We saw their eerily preserved bodies in person at a museum in Dublin.

Kylemore Abbey still functions today. It is a tourist destination primarily because of its enormous formal and other various gardens

Baby sheep from the tour of the sheep farm. Baby sheep are the best!! We saw them all over Ireland and I couldn't get enough.

The baby sheep are about 5,000 times cuter than this in person. They are especially cute when you drive past them on the road quickly (sorry, Tom!)

The last part of our western tour was driving out Achill Island. It was so beautiful, the sea and the soft cliffs seemed to go on forever. Here, view of the beach in the next photo.

A little too cold for swimming, eye? But plenty warm for a good old Irish sunburn! (~70 degrees)

This cool stone circle structure we visited, much older than Stonehenge

A cool trail/pilgrimage marker of Saint Somebody

"It's not religion, it's more than that. It's history."

The gorgeous Maria and handsome Tom taking us out for our last night

The only store Todd has ever been excited about going into in the history of forever

Waiting for the train to take us to Dublin. Tom showed me something foreign: being on time.

A door arch into a church ruin

Our trip home was thankfully uneventful. I took some medicine to make me drowsy. Back in Newland, our suitcases stuffed with chocolate, whiskey and souvenirs, we spent a couple of days hanging out and seeing family before we drove back to Raleigh. I spent much of those days, as well as a day when we got home, sleeping a lot of the day. I felt down, my glands swelled up a little, and I was a little sad to be home.

After those few days, a strange thing happened. When I travel I, probably like a lot of people, think about what it would be like to live in the places where I travel. As I started thinking about what things made my European vacation unique - more socially minded society (Germany), great beer any place at all that you go (Belgium) and the simplicity of life in small-town Ireland - I then started to think about what made my city unique.

While most of North Carolina is completely backward, our little piece of it is not bad. There is a huge handmade/local movement here for everything from honey bees to beer and vegetables! I love that I am two hours from the beach and three hours from the mountains. And most of the people who I associate with are not mean or discriminatory toward people who are different and - most of all - a lot of people around me disagree with the shenanigans the state legislature has been up to.

In addition to the refresher about the things that make me happy where I am, I also realized a couple of things I wanted to start doing differently. The big one was that I need to find a good, steady yoga practice. I've been away from yoga for too long. Secondly, I knew that there were some personal issues I'd been having with people that I needed to let go of and just move on. Lastly, I had really enjoyed not having constant access to facebook, texts, email and the internet. I simply could not believe the amount of mental space that takes up in my brain all. day. long. I strive now to be less digitally connected and more connected instead to books, my writing and all of the amazing people in my life.