Highlights of 2016

Todd and I in Bochum, Germany

It's hard to believe another year has come and gone – my second year with a new lease on life! I celebrated my 2nd transplant anniversary on Oct. 23 with close friends. I have continued to not have major health problems, but have had some minor-ish issues with sinuses, skin allergies, mystery headaches, chronic back pain and some fatigue. But I continue to be thankful for all I have, and all of those with whom I have to spend it with – including (or, especially!) Todd and my precious animals.

My mom with the new member of the household!

The highlight of our year – besides our amazing Europe vacation – has been our newest feline family member, Pippa. I stalked Pippa at the pet shelter for 5 weeks before I actually got her. I kept going to visit, hoping that someone hadn't taken her. After all, she is very special, she's a two-faced cat! Half of her face is black and half is calico. I got her so that our young-ish cat Maya would have a friend to play with instead of bothering our oldest cat, Gus. Things could not have worked out better. She and Maya are best friends. They chase each other around the house and are constantly into mischief. Pippa is also sweet with the dogs, sometimes sleeping with them, but also sometimes using their wagging tails as swiping toys. One of Pippa's favorite things is to be picked up and carried around to see things with her daddy. She purrs and purrs and relaxes in his arms. And sometimes when I'm lucky, she will fall asleep on my lap at night purring and purring and stretching out so that she's as long and lanky as a string bean!

Pippa Smith-Platt with her sister Maya

Our dog Doc (both boys are now 11.5!) had some medical issues during the time I was visiting, but holding off getting, Pippa. He had a lump biopsied that came back as minorly cancerous. The doctor said a second surgery was almost sure to keep the problem away permanently. We went ahead with it and thank goodness the second surgery went much better than the first (not as much inflammation and no infection). He's been doing well since!

Doc was such a good patient even having to wear the cone

Sam has had some skin issues. He's now on an expensive synthetic steroid medicine that Doc takes and it has been an amazing difference. All the cats have been fine, with the exception of Gus getting diagnosed with FIV (feline immunodeficiency virus) this summer. So far we've had very few problems with it. In other cat news, the introduction of another indoor cat (Pippa), led to making our back porch into a catio area – a patio for cats! It has cat trees, plants, other things that are good to scratch and lay on. The girls have enjoyed it a lot and ask to go out every day, even now that it's cold.

Maya (black cat) on the catio

Human News

Todd's 50th birthday was June 26th this year and I arranged a semi-surprise boys' weekend in the mountains for him and a few of his best college buddies. Tom (Todd''s best friend) even flew home from Ireland for the occasion!

From the end of October until Nov 5, I was worked a ton in preparation of the annual Casino Night Fundraiser for The Lung Transplant Foundation.

Friends Millie, me, Chris, Kirsten and Martha at Casino Night

The night was a big success – we raised twice as much as last year! My major duty was handling the silent auction. I did all kinds of soliciting (begging) to a bunch of friends, and friends of friends...I was lucky in that I know a lot of people with small businesses. One fun thing my friends helped me with was soliciting a handbag from a big-time local handmade purse maker named Holly Aiken. At a birthday get-together, some of my friends brought their Holly Aiken bags. Instead of posing with all us girls, like I had planned, someone had the idea to make all of our husbands pose! The result was hilarious and brought Holly Aiken right over to our side. She donated a great bag and also wants to frame the picture and hang it in her store!!

Our friends Matt, Craig, Todd, Chris, Charlie, Jason, Greg and Ross

To expand a bit on my health, I developed some major skin allergies, to what? we were never able to find out. I went through panel testing with the Duke dermatology folks as well as blood testing – all negative! (Probably because of my suppressed immune system.) Yet some things clearly make me react, so it's been a bit of trial and error. The whole experience was a nightmare that lasted many months of the summer. And I was not able to wear sunscreen (some of which was making me react) during the months I needed it the most! I became well acquainted with sun protective clothing.

For my patch test, I had to wear this around for three days during the summer...and was not allowed to shower or sweat!

I went back to see my sinus doctor (ENT, ear-nose-throat) doctor from UNC this fall – so weird being back there! - because I have had a horrible time with a nighttime cough for the last half year or more. My pulmonologists and I have played around with allergy and asthma meds but nothing seemed to help long-term. I now have two pretty nice nasal polyps, for which we are trying things to deal with other than surgery. The doctor says that when one part of your body is healed, it can cause problems previously more minor to flareup. Perhaps so. I am currently doing a steroid/saline rinse and it has helped some. But still I notice a lot more going on in there than I used to. And I will pretty much do everything possible to avoid having sinus surgery, including continuing to live with this nuisance.

I did go into the hospital one day this year back in July. I came down with what we eventually discovered was a virus that went to my lungs. I was feeling awful, coughing, fever, and went to the ER. They admitted me for one day, gave me some IV antibiotics, did a ton of lab work and sent me on my way with some Cipro. Isn't that nice! It also coincided with our AC being out, so the timing wasn't bad.

I have also been dealing with mostly minor headaches. I'm not sure how much of it is sinus related or what. Still a mystery. I have some pills I take when it gets bad, but that isn't often.

A colorful day at pulmonary rehab, me and Edie

I am still going to pulmonary rehab, and trying to push myself a little more than I have been. I feel like I've become lazy and compliant. Maybe I have somewhat. But it's soooooo nice to not HAVE to exercise to feel good! That also makes it harder for me to stay motivated (although, for perspective, my old CF doctor has told me that exercise is even more important post-transplant than pre-transplant.)

Todd is doing alright. It hasn't been the easiest fall for us, but hopefully things are leveling out for a while. Todd's company, where he's worked for 20 years as one of their first employees, got bought a couple of weeks ago. So far there are no major changes, although the focus of the company as a whole is probably going to be shifting. Jury is still out on whether or not it's going to be a place Todd wants to stay long-term.

Merry and Bright

At the Smith-Platt household, we are poised for a very Merry Christmas! Our dogs might be getting the most presents they're ever gotten, and of course the kitten has several coming as well. We are doing things a little differently this year. Mom, Todd and I are going out to a nice Christmas Eve dinner before retiring to our house for the evening. Mom will stay the night and we'll do Christmas in the morning before leaving for the mountains to catch Christmas dinner with some of Todd's family and enjoying a few days up there.

Trips!

 

Our friend Dejah with us at Wiseman's View overlooking
Linville Gorge on a mountain trip this summer

In early April, my mom and I and Doc and Sam drove to Glenwood Springs, NC (about 7 hours away) to visit with my cousin Anne, her husband, two kids and my Uncle Roger on their horse farm in the mountains. It's very pretty where they live and they are such great people to be around! Doc and Sam fit right in with their pack and were absolutely spoiled by Miranda and Evelyn.

Miranda and Evelyn

Doc and Sam hanging out at the barn

Miranda loving on Sam

Evelyn takes a break from brushing Sam

*     *     *

Todd and I outside a restaurant in Bochum, Germany

In early May, we took our biggest trip of the year overseas to Germany, Belgium and Ireland! Nathan, Jo Ellen and Simon lived in Bochum, Germany for five months – Jo Ellen did a teacher exchange. We spent several days bumming around their home town of Bochum with Simon as our tour guide. My favorite day was when we decided to walk across town to the children's zoo. We ended up going the long way and I was so tired of walking! At last we reached the park in which the zoo is located and it was beautiful. There were giant trees, meandering paths and bunnies galore!!

Another delicious bakery

Sleepy Simon on the train

Simon and Nate in a small town near Bochum that all of us visited

Simon waiting for the slow adults on a castle tour

Next, Nate, Simon, Todd and I rode the train to Ghent, Belgium. On our way, we had a short layover in Cologne and we were able to pop out of the train station to see the famous cathedral right in front of us!

Koln Cathedral

We stayed in Ghent, right along the canal, for a few nights, making a side trip to Brugges. Ghent and Brugges are two of Europe's towns that survived bombing in WWII and still have medieval buildings. Both places were really neat to walk around, and the contrast between old world buildings and modern life was quite lovely. We also enjoyed great Belgian beer (my favorite!!) and chocolate.

Ghent at night

Our hotel was located on a canal like this

Artisan owl chocolates in Brugges

We started our second week flying to Ireland to see our old friends Tom and Maria who have lived outside of Dublin for the last few years. Tom played an exquisite tour quite, driving us relaxedly yet efficiently through central western coastline towns and villages. We first stayed in Galway and then moved on to the Burren – think, barren, not much tall growth and lots of bristly ground cover and rocky terrain. It was a good jumping off place for the Cliffs of Mohr and the Burren Perfumery the next day as well as some cool ruins and dinner at a good pub where the owner was cousins to a former Hurricanes hockey player (!).

Entrance to the garden at the Burren Perfumery

Kilbeggan Distillery Tour

Hiking at the Cliffs of Mohr

Visiting cool old stuff

The monestery

Part of the royal gardens

The tower next to Yeats's house on a lovely river

Former Hurricanes' Jeff O'Neil's second-third-something cousin

Enjoying a sunset outside the pub

More cool, ancient church and cemetery ruins awaited us the next day as we worked our way toward Connemara. Tom took us to a beautiful national park in Connemara. We all started out hiking up a path toward the peak of a mountain. I lasted maybe 2/3 of the way up, which was more than I thought I'd be able to do.  Tom and Todd continued the rest of the way and it sounded like a tough climb. While they did that, I went through the mountain bog exhibit – fascinating to me because at The Nature Conservancy we also worked with mountain bogs and would try to figure out ways to get people engaged by them. The exhibit did an awesome job of showing the history, cultures, tools, foods, and animals that all came from the area. Very neat. We saw some more ruins and then finished the day at the famous gardens of a monastery.

A Connemara horse - specifically bred to work
the mountainous bogs in the area

Walking up, up, up on the Connemara trail

One of the famous "bog women" found preserved in the peat bogs of western Ireland.
We saw the actual bodies in a museum in Dublin!

Elaborate decorations at grave sights

An abandoned church with cemetery

The next morning – MUCH to my pleasure (and insistence) – we went to a sheep farm! We were, of course, in the midst of baby sheep season - only the best time to visit Ireland. Those guys are so darn cute! I just can't get over squealing every time I see them. Anyway, at the farm, we saw a sheep dog demonstration – very impressive – saw how they harvest bog peat for fuel and also got to feed the baby sheep!! They were so cute, roaming around their small holding pen, making sounds like they were starving because they knew what was going to come next (food!).

The baby sheep scarfing down the milk

This one was my favorite - moving too much to get a good picture!

On the last part of our road trip, we checked out some more ruins, saw more baby sheep, (almost got the perfect baby sheep picture until Todd interrupted me with something silly) and drove to the end of a small, remote island with breathtaking views of the ocean and all of the small-village, slightly decaying Irish charm you could ask for. For the record, I was the first one to introduce the island's coffee shop to an iced espresso drink

View of the beach at the end of the island

Me with some very Burren-looking rocks in the foreground and beautiful blue ocean in the background

We spent the next day roaming around with Maria (our luck with beautiful weather having run out) added to our group - she had been in the US visiting - to see some more cool old stuff and another national park near where they live. Our final day we took the train into Dublin, did a little shopping, and met Maria for a delicious dinner. All together we were gone for almost 2.5 weeks. Amazing trip!!

An older-than-Stonehenge-type of circular monument near Tom and Maria's house

Cool spiky grass

More cool old ruins in the background

A sign from a famous Saint, I think

In June, I went up to Cleveland for about a week for the Transplant Games of America. I also got some good family vising time in. Mary Ann, Amy, Jay and Keri all participated in the 5K walk with me! I also did poker and trivia. Next time I will do something more physical. It was an amazing experience to meet so many people who have been through so much more than me. I was also encouraged by meeting some “long-time” transplant survivors (15+ years.) The next Games will be in Salt Lake City in 2018. Anyone is welcome to join me!

My good friend Jessica and I who arranged the games for Team North Carolina

The Kalasunas-Sutton-Buchholz-Smith cheering section!
(Amy, me, Keri, Jay and Mary Ann)

State pins from the Transplant Games

Me in front of the wind mobiles for the Transplant Games

In September, mom and I went up to Michigan for a belated celebration of Simon's 5th birthday! We played soccer in the yard, went to a nature park, ate Blue Moon ice cream, and watched one of Simon's soccer games and swim lessons. It was good bonding time for all of us. On the way home, we stopped in Cleveland and had a spur-of-the-moment lunch visit with Mary Ann.

Michigan moon rise

Simon in his raccoon ears and tail at the nature center

Blue Moon ice cream - cheers!

Simon playing goalie

Simon at his swim lesson

For Thanksgiving, Todd and I went up to Cleveland (I usually go and this year he was able to join me.) Nate, JoEllen and Simon were also able to come! It sure was good to see everyone although, unfortunately, my nieces were with their father the entire time. Todd and I took Simon to the Natural History Museum (dinosaurs, rocks, glaciers, etc.) and he had a blast. Nate, Mary Ann and I spent the good part of a day going through dad's old stuff: books, paintings, CDs, DVDs, old pictures. I've been up there and gone through his stuff before, but somehow it was sadder for me this time. I think I wasn't as prepared for it as I have been before. Before we left, we had a big fiesta dinner with Jay, Keri, Amy, Nathan, JoEllen, Simon, Todd and I.

Todd and I take Simon through the animal habitat at
the Natural History Museum in Cleveland

Thanksgiving meal at Amy's:
Joe, Nathan, JoEllen, Amy, Mary Ann and Paulette

Happy Holidays to All!

Sam in front of the Christmas tree

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!