An Open Letter to My Donor Family

Dear Donor Family,

Two years ago today, I received two new lungs to replace my infected, scarred, failing cystic fibrosis lungs. Because of a stranger's generosity, I have had the joy of living for two more years, borrowed time, time that I might not otherwise have had.

When I was born, people with CF were expected to live to be 18 if they were lucky. My lungs took me all the way to 36 years – double that – and were good to me with all we did together.

The best part about having a lung transplant is that it has allowed me to not have to work so hard to stay healthy. I spent my whole life doing that. I have been lucky with transplant – I’ve had no major complications. These lungs seem to agree with me. Besides my daily pills, need for extra sleep, monthly blood draws and various doctor appointments, my life is fairly normal for the first time ever. I don’t work, but I’m able to volunteer a lot and that fulfills me and makes me happy. I exercise regularly, I try to eat well and be good to my body. Going on a trip is in no way the ordeal it used to be. I love each day that I am able to be productive and spend time with my husband and our five fur children.

Having to work at my health started early: As a kid, I was always being dragged to the doctor, surrounded by people who were sicker than me, eerily like how I pictured my future. I was forced to eat yogurt with tiny pills mixed in before I was old enough to swallow them. My parents tried to do chest compression therapy every day, twice a day, during which I literally laid down propped on pillows, rotating around five minutes at a time like a rotisserie chicken, squirming and complaining with boredom while one of my parents held a wand with a small vibrating cup on different parts of my lungs.

I graduated high school, I got into a good college. The next year I decided to move from North to the South to be with my brother. I finished college, what a proud moment that was for my family and I! I even got a part-time job related to my field after college. I also worked as a nanny so that my income wouldn’t mess up combination of insurances. After a few years, I worked my way into an amazing part-time job with great insurance – the same insurance that would end up paying almost entirely for my lung transplant. After five years at that place, I was forced to retire because of my health. My career was over.

In a way, leaving the job I loved was the end of any kind of normal routine that I had. When I started getting increasingly sick, my health dominated everything: it was my full-time job. Working my way up to lung transplant was even more challenging. With my practically constant IV-antibiotics, treatments, flare-ups and fatigue, I then had to push myself through a rigorous lung transplant rehabilitation program for months in preparation for transplant, exercising five days a week for 2-3 hours per day. I had all kinds of doctor appointments, testing and retesting, checking and double-checking to make sure I was a good candidate for transplant.

In the end, I waited three-and-a-half months for that transplant. As prepared as you think you are, nothing tests your readiness like being called to the hospital to receive your new lungs. That day, things seemed to fall into place, it felt right, I felt ready.

Part of those long hours waiting were spent thinking about who my donor was. While I prepared for my second lease on life, another family, we knew, would be feeling the loss of a loved one being taken away from them. We knew the donor operating room time, but they told me absolutely no personal information about my donor. All I know is that our blood types matched, our antibodies were compatible, he or she had been exposed to a virus called RSV in their lifetime, that he or she had roughly the same size of torso as I do and that he or she was not considered a high-risk donor. Everything else I know is based on who organ donors typically are: I know that NC has a lot of organ donors, so the donor likely was from here or nearby, likely was white, likely young. Often there is some sort of tragic event that brings about their death which is part of what makes writing these letters so incredibly difficult. How can we recipients expect donor families to be able to share in our gratitude and happiness after the heartbreak and sadness they have lived through? It is an incredible amount to ask.

I wrote to you a year ago and told you about the happiness I have been able to experience because of transplant. Since then, there have been more trips – an amazing vacation to Europe to see friends and family, a trip to the Transplant Games of America in Cleveland, OH, this past summer, more trips to visit family and friends states away. I’ve been able to start writing a memoir. I’ve brought two adorable cats into the family and given them the best kitty home any cat could ask for. It’s time I would never have had without the beautiful consideration of another human being and their family.

Thanks to my organ donor and my donor’s family, my five-year old nephew has learned to share some of my passion for the environment. Thanks to you, I have been able to volunteer countless hours to organizations like Donate Life and The Lung Transplant Foundation and help to raise thousands of dollars to help other patients. Thanks to you, I have this amazing story to tell – a story that is still unfolding - to share with others, to help inspire other people to be organ donors and give others second chances like I myself was lucky enough to have. Thanks to you, my mother just walked up to the front door with a beautiful bouquet of purple flowers (my favorite color) for her daughter’s two-year anniversary.

Thank you for all of this. I am so grateful for the time that I’ve had. It has been amazing. Please return this letter if you are able.

With love,

Your Two-Year Lung Transplant Recipient

Turning Around

While it's true that bad things can't happen forever, I was seriously beginning to doubt that this summer. I haven't written outright about my lousy summer because it was too depressing and I didn't think it would be interesting to read about.

So here we are, the end of August. It's honestly been about two months of sad thing after bad thing after expensive thing (repeat). But finally, finally, the last week or so has really brightened up for us. So here is some good news I have to share!

Doc had to wear a cone and a Thunder Shirt after his first surgery to keep him from scratching his wound.

After two surgeries, our dog Doc seems to be cancer free! The doctor removed a lump initially which turned out to be slightly (though not aggressively) cancerous. We did a second surgery to make sure all of the margins were clean from the first surgery and they were! So we are very happy about that, and Doc is extremely happy to be out of his cone.

On the very same day we got the "all clear" on Doc, I went straight to Cause for Paws and filled out an application for the kitten I've had my eye on for three weeks. I picked her up the following day, after convincing Todd that we should give it a try. "She's a very special kitten!" I said. And little did we both know how true that would end up being. 

Pippa is the sweetest little thing, very gentle with her claws; she has gotten used to the dogs and now swats at their tails like Maya; she and Maya have become best play buddies, which I was hoping would give some of Maya's playful energy an outlet; and her markings are so unique and fun to look at! I told her to not be in any hurry to grow, and I kind of hope she will stay small forever.

This one likes to cuddle!!

I had very good labs, x-ray and PFTs last week, followed by a good 3-month appointment with Dr Reynolds. There isn't much going on right now, which is awesome, except for some coughing at night which is actually a pretty unpleasant problem. It wakes me up, so does Pippa, wanting to play, and Gus, wanting to go outside... it hasn't been very restful lately. 

We finally got some tangible news about the Volkswagen buyback program for my car! Now we can start making decisions based on the facts instead of abstract ideas. I love my car. I really don't want to give it up. But whether I sell it back or keep it, I will still be awarded a few thousand dollars of settlement money. So we will see.

I saw a couple of old friends last week who I hadn't seen in a while. It was so good to catch up! And it's always neat to see people's reactions to me when they haven't seen or talked to me in a while. It's easy for me to forget how far I've come without people reminding me now and then. Along those same lines, my brother is back in the country from his family's five+ month excursion in Europe. It's strange but it feels so much better knowing he is back on the same continent as I am.

Our soap making is going well! Our last batch turned out especially cool looking. We were trying a new honey base for the first time and had a lot of fun trying different variations of things with it. 

I think this bar was my favorite. It's honey base with apricot seeds, lemongrass scented.

We have begun the process to get a home equity loan to make much-needed updates on our house. Unfortunately, there aren't a lot of "fun" things on the list, but I know that we will both enjoy our screened-in porch more once the roof is raised and we have a fan and lights (and maybe speakers?) out there. We are going to pay off our HVAC loan and replace the main house roof. We have some trees that need to be taken down in the back yard, branches trimmed. We are getting a new mattress! Ours is starting to sag rather badly. We are also going to upgrade the electrical outlets in the house and do some other electrical upgrades. Lastly, we both have "wish lists" of a couple bigger things we have put off buying the last couple of years. There is much more to do if money permits; we'll just have to see how far we get.

I have not eaten any meat (except fish, which I never intend to give up) in the last few weeks. I do not want to call myself a vegetarian. That name just doesn't seem to fit me. For now, I am going with the term "conscientious eater," and it does not mean that I will never have another bite of meat. It just depends on the situation and me making the best decisions I can at the time. I do have to say, I have had fun trying new vegetarian recipes. I've always been so afraid to become meat-free(ish) because I am not a very good cook and I feel like you have to be more creative without meat. But so far it really is working out. And while I'm not sure how thrilled Todd is about it (I'm pretty sure he's eating meat every single time he's at a restaurant) at least he hasn't vocalized any disappointment.

Lastly, my volunteering has gone gangbusters lately! It is a slow time right now for my Transplant Games duties, so I have committed myself fully to being in charge of the Lung Transplant Foundation's Casino Night auction in early November as well as helping with other things.** Since I am in charge, I am making the auction very NC-handmade goods focused. I think it's going to be really unique and lots of fun! I am also working on how to make the process more efficient. So if anyone reading this has done this before and has wisdom to share, I am happy to hear it.

I have a couple of trips coming up - mountains for Labor Day and Michigan the week after that - which should be fun. I am also starting a writing class the week after Labor Day which I'm really excited about. The class is called "Real Writing" and should be a good guide for me to improve how I write about myself and my own experiences (mostly pertaining to my health). I am signed up with a friend, another cystic, who I met at Duke but who has been healthy enough to stay off the transplant list. He is a great guy, very introspective with an interesting life; he has also been through a tremendous amount with his health that he wants to write about. I'm looking forward to the writing but also to spending this time with him.

**If you are local and are interested in tickets, please go here: http://lungtransplantfoundation.org/casino-night-tickets/.
If you are unable to attend but generously would like to make a donation anyway, please go here: http://lungtransplantfoundation.org/donate/ and donate to the National Chapter.

The Summer Without Sun

It's largely been a shitty summer. I'm not going to say that everything went wrong that could have, but at times it really did feel that way. Between bad news, house problems, pet ailments and a few health bumps, we have absolutely earned a problem-free rest of the year. Perhaps some bits about all of this will come out in my later blogs, but for now I am just going to talk about my mysterious allergy adventure.

It started in early June the day I drove up north for the Transplant Games in Cleveland. That morning, I had gone to Duke for labs and another neupogen shot to boost my white blood cells, which had been low for months. Between then and when I arrived in Cleveland, 10 or so hours later, my face had flared up into a red, itchy, bumpy mess! And I'd itched my forearms so much that they were bruised. Thankfully, I was staying with my step-mom, a retired dermatology nurse, so she knew just what to do to calm things down. We went back to basics with cleanser, hydrocortisone and some benadryl. It took several days, but things did improve.

Things went from bad...

...to worse over the course of this ordeal.

The next problem arose when I tried to find a sunscreen to wear while I was out at the Games. Many of you know that transplant patients have a 50% increased risk of developing skin cancer than the normal population. So daily sun screen is part of my everyday routine, and when I know I'm going to be outside I'm even more careful. Luckily I did have some sun-protective clothing with me but, honestly, most of it is such a drag to wear! Plus, I always like extra protection on my face anyway. We literally tried every brand of non-comedogenic sunscreen available in the grocery store and every single one of them irritated my face. This was the start of my summer without sun.

over-the-counter non-comedogenic sunscreens

Moving past some unimportant details, the rash was basically gone by the time I got in to see my regular dermatologist. But it was such a mystery. Had the rash been from the neupogen shot since it first appeared the same day I had my most recent injection? I racked my brain to figure out any new products I may have used and to which I may have had a reaction. I could think of nothing. And an allergic response to neupogen - especially after having had it several times - was apparently not very common. We were puzzled.

Then it came back - we didn't know why - and I went back in and my doctor took a biopsy. And I waited. By this time it was past the date of my needing another neupogen shot but the doctor wanted me to hold off until the biopsy results came back, so I was just hanging out with low white blood cells, not being able to use sunscreen...it was great. Finally, the biopsy came back! It showed an inflamed follicle; it was a little ambiguous what the cause could be, but since I'd seemed to have had an allergic reaction that brought on the rash in the first place, we decided to do an allergy patch test. 

During the month I waited to get in for my first of these appointments, I had dreams of finding a magical sunscreen after my allergy testing. I was told that the skin test doctor was a "miracle worker" at finding products people could use. And that after my testing I would have a "safe list" of products that I could use. In the meantime, still no sunscreen, still covering up in the sun (hot!), and sometimes just avoiding it altogether, staying home watching Netflix instead.

a pic of filling up the patch slots

Patch testing is not like allergy testing with tiny needles. Instead of needle pokes, small amounts of chemicals are placed on an adhesive strip with ten small circles into which they are placed. Also, instead of finding out results right away, the ordeal is a six-day process that allows for a delayed reaction to show. Without further ado, here is a rundown of my testing!

• Day 1: I arrive at my appointment with every single product that I use on my face and skin. It fills a big canvas shopping bag. Based on chatting with me, the doctor orders the Duke 80 (the 80 most common chemicals to which people are allergic), the fragrance (45), the sunscreen (21), the cosmetics (39) and the essential oil (11) panels plus three extras. Then we look at ingredient lists of all of my personal products. I probably had close to 60 and she narrowed it down to 26 for testing. It occurred to me how strange it was that even though I use mostly natural and organic products (I realize, those terms can be relative) there are still a ton of chemicals in those things! (808 Side note: It really made me appreciate the "purity" of the soap we make, using things like glycerin or goats milk base, real honey, oatmeal, coconut oil, apricot seeds or cocoa beans.)
  
  

  

  All of my products.

  
  Next they prepare the trays. All of the chemicals must be put out fresh so this cannot be done ahead of time. While one person works on setting up the usual chemical panels, another inventories all of my personal products and takes a tiny amount of them and puts into the circles on the adhesive strips. It is very meticulous work and gives me time to fill the nurse in on all of the pet drama we've had. I joked that I should have run across the street for an iced coffee because this ended up taking at least 30 minutes.
  
  Finally the fun begins! They take each strip, about six inches long and two inches wide, and stick them methodically to my back, starting up top and working their way down. They make purple marks around all of the strips so they will be able to tell where the dots are when the strips are removed. The doctor's assistant runs out of room placing the strips on my back with about 6-7 strips to go, so we also end up using the top of my thighs. I wish I would have thought about how this would affect walking! But we couldn't really use my stomach because of all of my surgery scars and various marks and bruises from my insulin pump and continuous glucose monitor.
  
  

  

  Not enough real estate on my back.

  
  
  The last step is to secure everything. Meticulous nurse takes specially designed non-allergic torture tape about two inches wide and tapes over every single strip on my back both horizontally and vertically. And then some. By the end, when I stood up, I felt like I was wearing a straight jacket. It was hard to move, bend, twist, and it ended up a tricky job to turn my head to look back while driving on the way home. My job is to keep this tape dry and intact for the next two days: No showers, no sweating (do you know how HOT it's been??), no exercise, no scratching, no tight clothes, no sleeping on my back (sleeping was actually the worst, even not on my back. Basically, do anything at your own risk of having to repeat this whole hellish exercise. It was not fun, people. But it did end up being a very good party trick! I love showing off medical weirdness.
  
  

  

  A strange picture of my back bound up.

• Day 2: Two days later I go back for them to remove the tape. The excitement is palpable. Few things have ever felt better in my life. However, even after removal, my back and legs were still sticky, and I still cannot take a shower, so I spend the next few days with clothes half sticking to me and, again, trying not to sweat, wearing clothes that will not be ruined by the purple ink markings on my back and taking sink baths. I had a few random itches when the tape was on, but so far there is nothing turning red or starting to turn red where the samples had been.
  
  
• Day 3: After a very dirty and stinky weekend during which I probably moved and sweated more than they would have liked, I go back on Monday for my final reading. But I'm not expecting much. I have watched my legs and had several people look at my back and nothing, nothing is even close to red or suspicious looking. The doctor diligently feels every single row of spots. She's looking for any skin that's raised or, obviously, red. She finds nothing. Well, one kinda, sorta, maybe, but it's a product I haven't used in a very long time so that's really not helpful.

So what does all of this mean?

It could mean several things, none of which mean that an iota of good came out of this process. First, my immune-suppressant medication could have affected the test. Sometimes that happens with transplant people. Secondly, the test could have shown a false negative. This sometimes happens with anyone. I also think this could mean that either substances got rubbed or sweated off, although they said they suspected that. Third, the initial breakout could have been from something other than an allergy, but the fact that a seemingly allergic reaction corresponded with it sent us on the wrong trail. Forth, the test could have been accurate and the massive breakout was just a one-time, freakish thing for an unknown reason.

I highly doubt that last thing, and I've actually tested it since: I went back to one of my old SPF moisturizers (the doctor said I could run these self-tests to try to see which things were really ok or not. It involves putting the substance on your skin - not necessarily your face, but I thought what the heck, I'd stop at the first sign of irritation - twice daily for a week or two to see if redness/reaction occurs) and began using it for a few days. At least two times that I put it on my face, my arms would violently begin itching right away. Strange, but repeatable, so that one is off the "safe" list. I will set it aside to see if I can start seeing a trend with any of the other products I do.

The really good news that I discovered during all of this is that I tolerate most of the Bare Minerals products very well. I have used their make-up in the past when my face would act up, and their face wash for years - it's the most gentle, least drying face wash that I've found. Unfortunately, they have now stopped making that kind of face wash, but I have found one from their new line that works almost as well, and, anyway, I don't react to it. I have also purchased a plain facial moisturizer from them which is so nice after only being able to use a thick, oily, ingredient-less moisturizer called Vanicream these last few months. And - big bonus - I also found that their SPF 50 mineral shield will not make my skin break out!! Of course this stuff is pricey, but it is worth it to finally have a sunscreen I can safely use.

Bottom line is that I have no idea what brought on this allergy even after all the sweat and stink and experimentation. I hate mysteries like this! So I'm cautiously going forward, trying things one by one, being disciplined even though I miss my old lavender and other natural and organic hand and body creams so much. In the end, I know that I will likely be donating a lot of my products to friends, sadly, and that I will have a much smaller treasury of face and body products to use. I enjoy that stuff so much. I really do hope  that most of this ends up to be a fluke and that with removing a few of my suspicious products, things will stabilize again. 

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.