We had ambitions to go to the fair early in the morning, but thanks to jet lag and a fabulous tempurpedic bed, we awoke late to head to Lynn’s Paradise Cafe to meet our friend with CF, Lisa, who came to California’s CFRI Teen and Adult Retreat in 2001 and 2004.  She was called “Kentucky Lisa” so as not to be confused with our local Bay Area famous Lisa.  It was a rare and meaningful reunion. Lisa is in her 40’s , working fulltime and balancing her own health challenges and home needs. She is truly amazing. We ate in an eclectic cafe adorned with colorful fake flower bouquets and games and toys on the table (including plastic horses of course). Isa and I had our share of gluttony with the Kentucky Grand Slam breakfast- omelet adorned with fried onions, fried green tomatoes, honey biscuits and sorghum. Whew! A CFers dream… or nightmare.

By 1pm, we headed to Slugger Field, Louiseville’s minor league baseball stadium. It was across the street from the Ohio River and Waterfront park where people were amazingly playing in the playground and even jogging/biking in 100 degree weather. Our CF Education Day talk was in the lobby of the stadium, tucked away in a small alcove reserved for private parties. There were about 60 attendees, mostly families with kids with CF. We spoke without a slide show using handouts instead. Our talk touched upon things like family coping, importance of community, compliance, dealing with dating, jobs, college and working while having CF, and of course transplant.  Despite the heat of the building and poor acoustics, our talk was well received (even though there were a few blank stares) and we even hit it off with some of the adorable CF kids. Many drove far distances, with one family stating that they never met anyone else with CF; they live in a town 40 miles from Louiseville that doesn’t even have a supermarket. This was a different world. The social worker said the main challenges to CF clinic staff in caring for these patients was smoking parents and a lower education level. Kentucky has some of the highest smoking and obesity rates in the country and some of the lowest college graduate rates. After our talk, we joined many of the families for a minor league baseball game at 6pm. It was 94 degrees and incredibly humid in the bright sun at that hour. I was proving to the world that I had CF, excreting records amounts of sodium, so much so that my sunblock wouldn’t even smear on. We were generously treated for dinner, and had our choice of chili cheese fries, pizza, burgers, pepperoni stuffed soft pretzels, ice cream, Polish sausages and Philly cheese steak sandwiches (did I mention that KY has some of the highest obesity rates in the nation??) . For those with CF, can someone say “pass the enzymes?”

It was wonderful to be amongst kids with CF again; it reminded me of the old days at CF camp. But one kid who was so affectionate, came up and hugged me. My instant reaction was terror , fear of his germs, and cross infection. What a pity … we are so indoctrinated to stay away from each other now that a simple hug has become a source of fear and dread. I remember the days of piggy backing and how carefree we were. 

After an hour or so, I was as salty as the pretzel I just ate and dizzy with overheating, so we departed the ball game to attend the Kentucky State Fair that we missed in the morning. We headed to the air conditioned convention center , where the woman who sold us tickets was toothless but I’m trying not to stereotype here and will say no more. The faire’s program boasted events like the Ugly Lamp contest, the Miss Kentucky County Fair Pageant, the cheer competition, the Rooster Crowing contest, and the Quilt award presentation.  As we entered an Elvis impersonator surrounded by teen girls dressed like they were from the 50’s walked by quickly.  To the right was a stage where a country line dancing group was showing their moves. A real hoe down. We had only a few hours so we raced through as much as we could see, Stenzel style. My goal: to see Kentucky thoroughbred horses- the most famous part of the KY.
We walked through the Expo section where booths sell stuff- lots of stuff- mostly made in China, but some innovative and home grown stuff too. We bought some homegrown organic Kentucky jams and hushpuppie mix, and homemade fudge. We passed booths displaying hunting gear, John Deere goods, the US Marines (some buff guys were demonstrating pullups on a bar), and of course, a McCain booth. One booth boasted all Confederate flag paraphenilia. I was relieved to see a booth on “going green” and the Kentucky Organ Donation booth. Some of the folks at the organ donation booth recognized us and said, “Didn’t y’all go to the (transplant) Games?” We exchanged friendly greetings, as so many member of this unique “family” do. We had to laugh when one asked, “Are y’all from Team Hawaii?” because this was asked frequently to us and our Asian American Team NorCal manager Cathy Olmo while at the Games. Apparently much of the USA thinks that if you’re Asian, you must be from Hawaii.

In this crowd, there was black and white, and very little in between so we were definitely stared at. I was expecting someone to ask  if I spoke English.

We made our way through the arts and crafts section where we admired incredible home-made quilts, clothing, artwork, floral arrangements, photography, oil paintings, and plantwork. We drooled as we examined the cake, cookie and pie section where homemade baked goods were taste-tested earlier in the day and now on display. Some of the cakes looked like they were right out of the Food Channel’s cake show. Very professional!!

Outside, we passed the stables where the thoroughbred horses were kept. It was dark and we could barely see the shadows of the horses in the dim overhead bulbs. We could smell their hay (our masks went on) and hear their hooves knocking on the bars. The stables were beautiful, with elegantly dressed jockeys and horsemen/women sitting below fans and award ribbons sipping champagne and watching the horse competition occuring in the other arena, on live video. Some horses were being tended by caretakers; some looked nervous, bored, or eager to greet passersby. What a life to be a competitive horse. In this world I could see glimpses of the sport’s history, reminding me of the Belle Meade Plantation in Nashville, where we visited in May. Belle Meade was not an agricultural plantation, it was a horse breeding plantation, where wealthy white southerners sold horses for competition while their slaves tended to them. Even today, with a glimpse of the stables and the people there, and the homogeneity of owners, I thought that this equestrian world was still a world of affluence and Southern tradition.

Finally we came upon the greatest event of the evening: The World Championships Horse Show. Tickets were expensive so we just poked our heads in to see a stadium filled with equestrian elegance and a whole new world of sport. We saw horses trotting in line, pulling carriages, racing in circles, and even miniature horses being judged on looks and behavior. Many of the attendees were dressed in their finest evening gowns to attend this horse show. Competitors were from all over the country, but mostly from the South.  The trophies were enormous, almost as shiny as the groomed coats of the stallions themselves. It was very impressive. The size, poise, and agility of the horses were awe inspiring. So is equestrian sport all about making an animal do what you want? When 10 horses are prancing around an arena, it was hard to distinguish the different skills of each horse. But then one would win and the crowd would cheer madly. There must be a secret to differentiating a good horse from a not-so-good one. Either that or I’m clueless.

After a while, we headed to see the farm animals, hoping to get up close and personal to more horses. But we ended up seeing rooms of swine, sheep and cows, side by side in 10×10 pens. These were some of the finest breeds in the state. The wool of the sheep was white and billowy perfect (I felt sorry for them in the heat) , and I’ve never seen such big testicles on a pig in my life. The cows just gave us sheepish looks and a big “moooooo.” There were cots with sleeping bags pulled right up against the animal’s pens, so that the owners apparently slept next to their animals for the entire two weeks of the faire. Ah…. the joys of a good immune system.  Did you know Texas is the biggest wool producing state in the country, and leading behind it is Indiana?

Finally, it was getting late (our flight left at 6 am the next morning) so we decided to get our true State Fair experience and head for the carnival outside. It was crowded with teenagers wearing as little as possible in the late summer heat and stressed out parents pushing cranky toddlers in strollers. Despite the cigarette smoke pervading the air, we admired the ambiance- brightly colored lights coming from the ferris wheel, the buzz of the crowd’s laughter and distant screams from thrilled riders, fun houses, live music,  booths of “throw the ball here” or “shoot the rifle here” in exchange for the much desired made-in-china stuffed animal. It’s just nice to see people having a good time. 

We finally found a ride that would prove to the world that we weren’t yet old. After much contemplation and sympathy for our chili cheese fries/Philly cheese steak stomachs , we chose a thrill ride rather than the swinging gravity (AKA puke) ride. Picture a giant six edged star with chairs hanging off the edge that rotated. We got into that ride and it started swinging side by side as the huge apparatus began to rise. Within a few minutes, it accelerated and the chairs starting spinning in all directions. First we saw the stars, then we saw the concrete 100 feet below, then we saw the people in front of us swoop by. We screamed in a way that I didn’t know healthy lungs did. I held onto the shoulder safety harness with all my dear life, the humidity and me fighting for a final sweaty grasp of that steel bar that separated me from an untimely and unfortunate carnival death. I could hear Isa screaming just as loud, in gulps that vibrated as if her voicebox was going to fly out of her mouth at the speed of the ride. As it slowed, I could only scream to Isa, “We’re getting to fuckin’ old for this!!!” But inside I felt young and alive, shaken into joie de vivre by good old human technology-turned-entertainment.  We had made it and we weren’t human remains on the Carnival pavement below. Why humans find thrills at high speeds in upside down, sideways motions is beyond me. Is it evolutionary from the early days of fleeing, or does it bring  us back to our fetal lives to do somersaults?

It was 11 pm and our 6  am flight was beckoning us home. As we walked towards the exit, we enjoyed one last country singer sharing live music amongst a beer drinking crowd, next to displays of American military tanks. 

Our last stop was a game where a man would guess your age or weight. Since my whole life I have been assumed to be younger than I was, I thought I’d give it a try. In exchange for the chance to win that much needed made-in-China stuffed animal, I gave him my $3 and stood before him as he examined my face. He discretely wrote two numbers on a paper and asked me my age. Guess how old he thought I was??

Damn right, 36! He got it right on the nose. DO  I LOOK THAT OLD???!! I tried not too look disappointed as he sympathetically gave me a consolation price- a dirty fake plastic rose. He must have a lot of experience because the last time I was in Kentucky for the USA Transplant Games in 2006, I was carded for alcohol and the shopowner told me he thought I was 17.  I guess this second transplant aged me and gave me a few more wrinkles. Maybe I should have dressed more skimpy  and he would’ve thought i was younger ; ) .

Anyway, we left feeling fulfilled for the best end-of-summer Kentucky experience- a welcoming CF event, a summer evening ballgame and the mother of all State Fairs- the 104th Kentucky State Fair- a true cultural experience.

One Saturday  in Kentuck. A different world, different people, different lifestyles… but true America.

Thank you for reading this long post.
Best wishes,
ANA Stenzel

I left the hospital in late July, feeling exhausted and the not-so-fun side effects of high doses of steroids. Worst this time was severe arthritic pain everywhere. The day after I was discharged, I laid in bed, staring at the ceiling feeling so weak I could hardly move, and I wondered if I could ever compete in the Transplant Games again. That is life with transplant: going from extremes of strength/energy to extremes of weakness/fatigue! Thank God, with patience and rest, and a lot of perseverence to keep those muscles moving, I am feeling much stronger now. I still have hip pain so running is out of the question and I wonder how I managed the 800m dash!

Once I got the okay from my docs that I wasn’t contagious, I went from the hospital to a full weekend of CFRI events. First I served as Chair of the CFRI Educational(www.cfri.org) Conference Aug 1-3. The best part this year was hosting Tiffany Christensen, a phenomenally gifted patient advocate who has become a dear friend of mine. She gave a powerful performance about self-acceptance at the conference (DVDs available from CFRI!). The entire weekend was filled with inspirational speakers who discussed a diverse range of topics such as CF related diabetes, compliance, updates on research, alternative medicine and CF, among many other great speakers. There was so much hope for the future for those living with CF. I was in charge of the new attendee orientation, panel of parents who have CF, CF trivia, support groups and the memorial. Andrew was the humorous emcee again this year, and amazes me with his dedication. Ana was in charge of selling rose necklaces and selling our book. This is about my 16th year at a CFRI Conference, and when I go it feels like a big family reunion. I love getting updates about peoples’ kids and my friends’ lives. With this crowd, we only have one thing in common- cystic fibrosis- yet there is an immediate bond and an unusual amount of caring and compassion. At the end of the conference, we got many excellent reviews that this was the best conference ever, so I felt very satisfied.

I went straight to the CF Teen and Young Adult Retreat, another magical few days of closeness with old and new friends. I feel so lucky to have this disease! Who else can ‘escape’ from routine life to hang out with their friends, talk about the deepest hopes, fears and concerns, learn about how to take care of one’s health, eat as much food as one desires, and do fun activities like arts and crafts and sports!? I feel like I learn something every year about human nature. The retreat is truly a social experiment with 30 people of all different backgrounds and intellectual and emotional abilities who come together for one week because they have one thing in common: cystic fibrosis. I especially love witnessing the younger people evolve and grow with each passing year. As rap group facilitator, it is amazing to see how people support each other with comments and body language. With effective group exercises fostering trust and openness in sharing, a culture of compassion is born in these support groups. Many of these people have been going to CF camp and now retreat for more than a decade, so I believe these rap groups have fostered us to have tremendous communication skills that we wouldn’t have learned from just our families. There is an emotional transparency and intimacy among people with CF and their supporters that truly feels like this environment occurs no where else in the world. There is respeect, love, care, understanding, true listening, and truthfully, there is also self-absorption, distrust, judgment, resentment, anger– the full range of human emotions. One concrete example of the specialness of the retreat community was the day we were supposed to go swimming. The group felt it was too cold so on a whim we decided to go hiking. We had an old map to a local park. However, we had two people in wheelchairs so we made a change and decided to go to a park with pavement. Tom volunteered his truck to carry the chairs and we headed to the park. Halfway up the path the gate was locked, so the able-bodied people lifted the chairs over the gate! We were all together and made it all the way up the steep hill, with some of us pushing the wheelchair up in the heat and sun. It was such a joy to all stick together.

Since the CF retreat, I’ve spent my days recovering and reflecting (and catching up with emails). My life seems to be full of high action and exhaustion/rest. I also went to a Spanish CF education day in Oakland. I have been preparing to travel to Louisville tomorrow for another CF education day. Then I head to Denver with Andrew to enjoy the Democratic activities and finally hear Obama on Thursday, August 27. My dad is coming on Friday, August 28 so we can go backpacking in Rocky Mountain National Park! This will be another dream come true!

I will post again in a few weeks with more updates. I am writing in haste and wish I could be more reflective and insightful but for now this will have to do.

I hope you are all well and you can enjoy a close community bond of your own- whether it is CF, transplant, church, or another group. Have a beautiful August!

Love Isa

I am writing from Stanford Hospital. On Tuesday I started feeling a mild cold coming on, which was full blown by Wednesday. As usual I went to clinic and got my nose swabbed. It turned out to be parainfluenza, the summer version of RSV, the virus that put me inpatient in Jan/Feb. So I have to be here for 5 days for 1500mg of solumedrol and ribavirin inhalation. I am so annoyed! But grateful it is something treatable, they know what to do, and this is just to prevent rejection. Small price to pay; it really is just a minor inconvenience… I hope to be well and infection -free by the CFRI conference and retreat next weekend.

When I told people I have a cold I’ve received comments like, “With all your running around I knew there would be some health issues coming up,” or “that’s the Stenzel way, crash and burn.” I have to confess I resent these comments. I don’t want to be blamed for picking up a cold. I sometimes blame myself enough, and don’t need it from others. Yes, I ran around in Pittsburgh, yes, I pushed my limit for 11 minutes of competition, got sleep deprived and maybe didn’t eat well on the days of my competitions. But I don’t like to blame myself or be blamed for picking up a cold. Since I got home from Pittsburgh, I’ve been to a funeral, been to church, went to Jazzercise, grocery stores, etc… and could’ve picked this up anywhere. My big mistake was not really resting first before entering my ratrace life. My fatigue made me susceptible, that’s for sure, but I just don’t know why I keep getting colds this year.

I’ve been thinking a lot about risks and worth. I am reading an Edward Abbey book called Desert Solitaire, about a ranger who has adventures in the heat of the Utah desert, in Arches National Park. He tests his body and spirit but survives to tell a great tale. I just watched “Into the Wild” about a young man who takes off to live in Alaska and dies there. I fantasize about taking these risks too, going off and trying to live in nature myself just for a few nights alone. My silly dream is to go skinny dipping in a mountain stream/lake, putting off my fears about animals/weirdos/germs/being alone. What a confrontation of fear going off into nature would be. Besides, why do just men do it? I love these stories about people who truly LIVE, defy the social expectations, go into the woods and willingly take the risks.

My 10 year-post lung transplant CF friend from abroad just emailed me saying she has decided to get pregnant. I know the statistics about survival on that… She’s longed for her own child for a decade now and is going for it. While I have my fear and judgment about that choice for her (and for me), I salute her courage to take the risk and ask, “What is more important, living for years and years without my dream, or taking the chance to fulfill my dream even if I may not live as long?” What would you do? Didn’t Dawn have the best 3 years of her life as a mom, even if she died way too soon? She could’ve died now anyway without a child, but she took the risk to fulfill her dream of being a mom and DID IT.

Going the the Transplant Games or participating in any huge physical challenge involving crowds and travel and stress involves risk. I took it. Now my insurance company is paying the price. I hope this is just a minor price. But yelling my head off with our woman’s track and swimming relay (and getting Gold) was sooooo worth it. Was getting six medals worth being in the hosptial for 5 days? You bet your sweet ass it was. I pray that complications don’t arise to make me regret this, and that all my transplant friends who may be sick too don’t have seriou sequelae either. But the Games are what life is all about- the highest of highs and greatest celebration of being alone. I would never miss it because of the fear of getting sick afterwards.

I close with a great quote from the movie “Into the Wild”. Christopher McCandless writes, “I also know how important it is in life not necessarily to be strong but to feel strong.”

I felt so strong at the Games, like I could live forever and compete and win and BE AN ATHLETE. This infection is a sure wakeup call, so, okay, maybe I’m not all that strong. I have limits. But inside, I still, and will always feel strong.

I wish you all the same feelings of strength.

Let me just close with one venting. I really don’t want my hospital posts to be bitch sessions… But at 6am a nurse walks in and wakes me and says “How many times did you urinate last night?” I groggily came to my senses and mumbled, “Uh, twice.” She turned around and opened the door to leave. In my sweet but innerly annoyed way I said, “Is that it? Is that the reason you woke me?” She apologized and left. I am glad I finally have the courage to be assertive and make that nurse THINK how rude it is for us patients. Fifteen minutes later they came to take my vitals, thirty minutes later to check the sugar, etc… wouldn’t it be nice to combine everything?

This is a reminder that strength is not just physical but strength is also the ability to handle frustration gracefully and have the wisdom/confidence to openly tell people how they make you feel- without being bitchy or rude. I’m working on that.

Thank you for your support. I am resting because of sleepless nights and appreciate emails but please don’t take it personally if I don’t always pick up the phone.

Please have a beautiful weekend,
Love Isa

If you want to see photos, check out: http://s350.photobucket.com/albums/q439/teamnorcal08/?albumview=slideshowv

I will try to make my last post about the fabulous Transplant Games a bit shorter. After a full swim and piping day, I slept deeply and woke up late, around 8:30am on Monday morning. But I still tossed and turned at night worrying about my sprints and felt tired. 

We had a relaxed breakfast of bagels and peanut butter with my parents in our room. Then we piled into our car and once again headed to Carnegie Mellon.  It was a beautiful day with blue sky and scattered clouds, but no rain as predicted.  It wasn’t too hot either. We couldn’t ask for better!   The track was just outside the swimming pool and had much more spectator space. The minute I got there I saw Lara kick ass on the long jump- 9 foot 7 inches! Not bad for someone around 5 feet! She ended up winning the bronze medal and I was sooooo proud of her! I wandered around the track looking for Tiffany (a five-time kidney recipient), and our newest member of the 100m x 4 women’s relay, Tina (a kidney recipient).  The night before I got a call from the 4th runner saying she couldn’t do it because her tennis match conflicted with the time. We called other Team Nor Cal women and Tina was the only one able to run.  She made it possible for us to have a relay team! She was sweet and enthusiastic but also said, “I’ve never done this before.” When we finally found her I registered the team and grabbed a baton and in the corner of the track we practiced the baton handoff: right-left-right-left.  I gave Tina a few tips and we figured Tiffany would go first, I would be second, pass to Tina and then she’s pass to Lara, our fastest runner, who’d bring it home.  We waited for over an hour in the heat and watched people do the long jump, high jump and the impressive 100m dash.  I cheered on my friends: Dottie from New England who has CF, Paul F. who has CF, and people I didn’t even know who just seemed to need screaming fans.  I screamed my brains out (I decided these great lungs make me have a very powerful scream) to root on Tom M., my dear lung recipient friend. He came in second in his heat and made it to the finals! I was so moved to see people do their very best. There were many older men sprinting. Sadly in each heat, there was always one who collapsed shortly after starting, or stopped midway limping in pain! The cheers crescendo’d each time an injured runner hopped to the finish line! In the teen group, there was a skinny handicapped boy who came in last but received the loudest cheers, because even if his legs didn’t work he was RUNNING.  These 100m spurts of energy are extraordinarily inspiring, no matter what the age or ability. The children ran a 50m sprint and it was so inspiring to see kids as young as 2 1/2 running straight into their parents’ arms! One girl was very handicapped and in a wheelchair. An adult pushed her and ran when the gun went off, then 10m before the finish line, stopped, grabbed the child out of the wheelchair, and the girl limped and hobbled to the finish line, amidst loud cheers!  She had a massive smile on her face! These are the heart-warming moments of these Games. Lots of tears. 

I found out my friend Lorma, who received her heart-lung transplant at Stanford in 2005, was going to run the 100m relay also, for Team Maryland.  Though she was my competitorJ, we spent some precious moments in the center of the track, as I coached her on stretches and warm up, and carrying the baton. I gave her tips to not injure herself- most important. She said nervously, “I’ve never done this before.” This was such a celebration! I remember her boney and breathless, in a wheelchair, waiting for her transplant at Stanford! She has suffered so much after a lifetime of congenital heart defect struggles, including two cardiac arrests. I remember asking her, “What do you want to do after your transplant?”, and she said, “I just want to run.” And here we were, at the 2008 Transplant Games, getting ready to RUN. Praise God.  Finally, it was time to line up. My blood boiled with adrenalin and we girls lined up, rooting each other, laughing and smiling at this POSSIBILITY.  We wished each other luck, and got into our spots along the track. The gun went off, and Tiffany FLEW toward me as she ran the curve, ahead of most other runners. She had nice long strides and really did a fabulous job! She perfectly handed me the baton and I took off, running as fast as I could as the crowds’ cheers moved me ahead. I moved the baton slightly in my arm to have enough room to pass it, which was risky. It was all so fast, but I noticed there was no one near me. I saw Tina start to accelerate just as I was losing my energy and I really struggled to reach her. Then I slammed the baton in her hand and she took off (later she showed me a huge bruise on her palm because I guess I was rather eager!).  I saw my feet step out of the lane just as I passed the baton, and the official raised the red flag… that meant I was disqualified. Rather than scream and cheer Tina, I was overcome with disappointment that I messed up everything for my team. I was sooooooo bummed out. From a distance I saw the nice handout from Tina to Lara, who then flew like a rocket down the straight away and came in second, after Philadelphia (they are always awesome- lots of young girls).  I first saw Lorma coming toward me, and I raised my arms and embraced her saying, “You ran! You ran!” because her team did great -coming in third.  This soothed my disappointment, because this celebration is more important than winning.  But I felt so guilty for ruining my teammates’ pleasure and if I had a tail it would’ve been between my legs. When Lara, Tiffany and Tina came to me cheering I had to confess how sorry I was that I DQ’d the team because of the red flag and stepping out of the lane.  I went up to the stands and told Lara’s parents and her dad yelled at me, “WHAT?” and I felt even worse. Then all of a sudden over the loudspeaker they announced the winners, and Team Maryland came in second, and Team Nor Cal came in FIRST!!!!!! We came in at 1:18, under 20 seconds per runner! Apparently, Team Philly was DQ’d but I didn’t see the runner was right behind me in my leg so the flag was raised for them! I felt bad to be happy that we won at the expense of a very, very disappointed Team Philly. That didn’t seem fair. But as Tom G would say, “You gotta play by the rules.” Again, this was another miracle. To celebrate a GOLD in the relay with three other women who had never been to the Games, who had never done this before, was absolutely amazing! I was especially proud of Lara given all her medical crap she has been dealing with! She was truly a track superstar, reliving her high school glory days to our benefit!  

A true highlight was half an hour later at the awards ceremony.  We got onto the medal stand with Lorma and her teammates next to us, along with Team New England with Dottie. Then our Team Nor Cal donor mother, Zona Z., placed medals on each of us. We hugged and kissed her. She did the same for Team New England.  It was extremely special for Team Maryland, because Lorma won her silver borrowing the powerful heart and lungs of Zona’s 16 year old son Matt who died in a football accident. Zona and her family were on the Montel Williams Show last year to meet Lorma for the first time, and the Transplant Games were another reunion for them. Who would’ve imagined that Matt’s gift of life would also grant Lorma her dream of running, and a gold medal at that, and Zona and her husband and family were there to witness it? We had some time to relax and I attempted to eat half a sandwich but was overcome with nausea. I had another snickers and power gel loaded with caffeine.  I tried to relax, but all I could think about was the terror I had about my upcoming 800m. I was already exhausted from the relay and prior 2 days and lack of sleep. As I walked back to the track, I was greeted by an older man in a suit- who was Dr. Thomas E. Starzl, the pioneer transplant surgeon at Univ. of Pittsburgh Medical Center who MADE TRANSPLANTATION POSSIBLE!!!! What a true honor! All I wanted to do was fall to my knees with gratitude.  God bless this saint.  The time came for my last event, my 800m. Andrew’s family as well as his friends Andrea and Lloyd (true marathoners) cheered me on. I felt almost sick with nerves and felt weak. I was just tired and I wanted this to be over with. When I lined up I was relieved there were 3 women in my age category- so at least we’d all leave with a medal.  Again, every ounce of my being flooded with adrenalin at the start line. I wore Nancy’s old track shoes, that gave me her tremendous spirit to run like the wind.  But the soles were loose so I duct-taped them on tightly.  The spikes really helped to give traction and I started strong when the gun went off! After the first roundabout I merged to the inner lane and kept a steady pace. My lungs burned. I am slow to warm up and in no time I was panting. My throat was bone dry. How could I last another 1 1/2 laps!? But I just focused on one foot in front of the other, pushing with my quads.  I passed one woman and then came to my formidable foe, and my legs pushed forward as I passed her. Then I knew I was ahead for my age group. The second lap started quickly and I kept thinking this is almost over. Everything hurt, and I removed my mind from my physical strain.  I was breathing really hard and slowed down a bit, but Tom, Andrew, Andrea, and Lloyd’s cheers kept me going. Andrew kept yelling, “Think of Xavier! This is Xavier!” and he ran alongside me during the last stretch. On the last straight away I gave it my all and tried to sprint as much as my lungs would allow.  I could muster a smile as I crossed the finish line, 20 seconds before the other person in my age category. My time was the best I’ve ever done: 3 minutes and 50 seconds (my practice runs were 4:20-30).  Xavier did this for me!!!! His excellent lungs allowed me to win a gold– again. Praise God. What a moment.  

My muscles shook and it took me a long time to recover my breath. My mouth was so parched I guzzled water. Now the real relief started. I was done. I had survived the 2008 Transplant Games.  After I watched Lara kick butt in the 200m race, I went to the medal stands and allowed my loving husband Andrew to place a gold medal over my head. He deserved it, for being my greatest cheerleader and supporter all along.  All week I barked orders at him to help me out and finally he deserved a medal.  He said by community property law it belonged to himJ. Exhausted, heat stricken, spirits high but body low, we went back to the hotel for a cozy dinner with the Byrnes/Stenzel family.  I was energized by a phone call from Stacey C., another lung recipient friend who had a tough medical year, to report that she won a SILVER medal in badminton after 7 rounds! It was a tough battle and she had to pause to catch her breath, but with her perseverance she did it!!! I was so proud of her! 

At dinner, I played with my beautiful niece and cherished calmer time with my family. I was so grateful that everyone endured the heat, long waits and crowds to support me. I am the luckiest woman in the world to have such a great family! Afterwards we hung out a bit and then everyone retired. I left the room at 10pm and went downstairs to the Quilt Pinning Ceremony. This is a touching ritual where donor families make quilt squares for their loved ones and share a few words. It is truly a tear jerky. The ceremony was almost done when I got there but several donor family members came up to me and praised me for my piping yesterday. It is so bonding to just talk to these heroic parents. Some were from Arkansas, Missouri, New York, with different political and religious beliefs, but it didn’t matter.  I feel a deep love for them like they are my own donor family. I landed in bed by 11:15- completely depleted. My mind rehashed the peaks of the day not long before all was quiet. 

On Tuesday morning, I woke early again and by 8:30am head out with Andrew to North Park. My muscles were not even sore but just weak so it took effort to move. Ana went to play volleyball for Team Nor Cal, but I didn’t go. I wanted to support Tom M. at the cycling event. We got to the park and found Team Nor Cal cyclers Tom, Neal and Jerry all ready for their 5K race. Andrew and I tried to walk to the start line but it was a long road ahead.  We enjoyed a romantic morning stroll, arm in arm, along a creek and lake, in this beautiful rural Pittsburgh. It was getting hot and we thought we’d miss the start so we turned back and waited at the finish line. I screamed my head off and snapped photos when each of these guys came in. Tom made 7th place! The kids did a 1K afterwards and I screamed when our only Team Nor Cal child, 6 year-old Colby, came in to the finish line. He was so adorable! We waited a very long time for the 20K to start, after lunch. Andrew and I got take-out and went to a picnic table in the shade, and this day ended up being a romantic outing for us! I cheered Tom M, Neal and Jerry as they sped past me for the first loop of the long hilly route. Tom came in at 28 minutes for the first loop and then exactly one hour to reach the finish. He did such an amazing job as a first-timer and lung recipient. Most of the guys were serious competitive road cyclers with all the proper gear, so it is a really tough event to win. All three did fabulous, even without medals. 

Andrew and I wanted to make it back to volleyball to watch Ana but heard they had lost by mid-afternoon. This is unusual for Team Nor Cal, who usually wins a medal. Oh well, other teams can have their glory.  We returned to the hotel briefly to nap and wash up, but then went straight back to the convention center for our team dinner.  It was so great to see all our teammates in their matching shirts laughing and talking about the events of the Games.  People who used to be part of Team Nor Cal came, as did Lorma and her family.  Our former team manager Mark G. stole a banner with Ana and me on it and presented it to usJ. People gave speeches about how they felt about the Games, and tears were shed. We signed thank you’s for our sponsors and the speeches just kept coming and coming, showing how close-knit our team had become. Finally it was time for a quick photo and time to leave.  As a team we took a bus to the Closing Ceremony. The Closing Ceremony was at the local UofP basketball arena and was another collection of beautiful songs, speeches and awards.  Tom G. and I sat in the front row ready to present Ana an award.  When the time came for her to receive the Making Lives Better Award, she tearfully came down from the nosebleed section.  She gave a speech of gratitude to her donor families and shared how Dawn had just died waiting for lungs and a kidney, so more work needs to be done with signing up organ donors so this doesn’t happen. I was very proud of her, for this award she deserved so much. 

Team Arizona won the Team Cup for winning the most medals per athlete.  The Closing Ceremony ended with a video montage of the Games highlights, which featured a few of our team members.  It concluded with the announcement of the 2010 Games in MADISON, WISCONSIN.  I was disappointed it was again so far from California. My goal is to be well and able to attend the Games with Ana, Lara, Tom, Lorma and so many of my friends in 2010.  Will YOU consider coming?!?!? We stuck around for the dance party briefly but then left around 11pm. I tried desperately to trade my remaining Team Nor Cal pins. I forgot to mention that pin trading is a long-time tradition and a great way to chat with strangers. Each team has a unique pin and the goal is to get one pin from every team represented. It is so much fun!  

We said sad goodbyes to so many new and old friends from all over the country.  So much love among even people whose names I forget. We reached the hotel and crashed by 12:30am. I lay in bed depleted, emotionally overwhelmed, high, happy, thankful, amazed, in awe and thoroughly fulfilled at the completion of the 2008 Games.  Not that it’s about winning, and not that I intend to brag, but there were nine medals between the Stenzel twins, three for newly transplanted Ana and one for every event I entered, three for Lara, one for Stacey, one for Lorma (or did she get one in bowling?), two for Tiffany and so many other victories made me so proud of all of us.  This has been the best Games ever. I’d be remiss if I didn’t mention that we slept in late on Wednesday, 7/16, and I woke up feeling like I’d been hit by a truck. I was coming down, way down, from my week of adrenalin.  We mailed off some Breathing Room images that we had shown at the EXPO, and in the afternoon, we took a nice trolley tour with Andrew and Trent of the city of Pittsburgh.  It was a beautiful clear day and we enjoyed to learn about the history of this city.  We had lunch at 3pm and then returned to the hotel to prepare for our Cystic Fibrosis Center/ Pediatric Lung Transplant Program talk at the Children’s Hospital of Pittsburgh Medical Center that evening.  The staff prepared a gorgeous venue for the First Annual Carrie Martin Memorial Lecture… and we were the speakers! Carrie Martin was a 15 year old lung recipient whose family generously supported the purchase of books for each attendee.  Our talk was very well-received even though I was nearly depleted in energy.  We were treated like royalty and had the honor of distinguished physicians like Dr. David Orenstein present.  We chatted with each attendee as we slowly signed books, and left at 10:30pm.  Apologies to the wonderful staff! 

We got to the hotel super late and exhausted. Andrew woke very early to fly to Austin, and I slept one hour later and rushed to the airport to catch my 9am flight. Ana and Trent rented a car to drive to Washington DC for more siteseeing. I slept in the plane and arrived home 2 hours after I landed thanks to public transportation from SFO to Redwood City. I was thoroughly emotionally and physically fulfilled. I picked up Rupie and bought blessed California produce which I devoured for dinner.   Thank you for reading this long post again. I guess I did it again. Brevity is not my strong point! I just wanted to give you the thorough report on the Games so that you too may be inspired to attend, if you are a recipient or interested friend. I hope these stories allow you to reflect on the emotional highs of your life, and if there are few, how you can be involved to find more of them.  The Transplant Games epitomize what life is all about- celebrating being alive, cherishing health and making the most of our physical abilities, that loss and life are intimately connected, that love and generosity are healing to even those who’ve suffered the worst pain, that sickness is sometimes redeemed in health and that the weak do become strong.  Thank you to all my medical caregivers, my family, my friends, and my donor family who’ve helped to allow me to experience these life-affirming moments. God bless you and have a beautiful week.Love, Isa

7/13Okay, let’s try this again. I just lost everything I wrote so I will start again. My Saturday night was sleepless and short. Remnants of my caffeinated snickers bar and power gel left me wired and so did my general anxious state. My mind was tormented with thoughts of diving off the diving blocks, pulling my arms straight back on the backstroke, keeping my legs together on the dolphin kick, and sprinting the 800meter.  Dad’s snoring in the bed next to ours and Andrew’s body pressed against mine in our small double bed didn’t help either. Sunday was my biggest day and the more I tossed and turned the more sleep-deprived and anxious I became. Damn head! I grew so frustrated that this nocturnal turmoil would impair my performance.  I should’ve borrowed Ana’s Ambien like I did the night before.

I felt silly, taking these Games so seriously. I am truly a fair person who believes in equal chances for all people. But get me at the start line of any race at these Games and I turn into a monster; I am ready to snarl and bite off the heads of the other competitors (of course in reality I always tell them ‘Good job! Way to go! You kicked butt!’ but inside I am really thankful when I beat them) What is wrong with me? Is this because I have male lungs, expressing molecules of testosterone from the Y chromosomes in my alveoli?  It’s not that I want to prove that I’m faster than others; I just want to prove to myself that I have potential to win.  Maybe God will humble me someday.  For now, I love my strength and revel in the ability to be competitive.  I confess I never knew I had such competitive nature until I was given the opportunity to be competitive. I am not proud of this trait. But this discovery is yet another one of the gifts of transplantation– to be able to uncover a side of oneself because we have the opportunity to explore new parts of who we really are.  It’s great to be alive.

I also had an epiphany. This day Ana learned that her friend Dawn had died. Dawn was waiting for a second double lung transplant and a kidney transplant.  She got called last week but it was a dry run, and her time ran out. When Ana checked her email, I could see her fighting back tears in front of my parents and Trent, after such a victorious swim on Saturday.  I know the guilt she feels for still being alive, for not understanding why she got this third chance and 35 year old Dawn didn’t, even when Dawn had a three year old to raise. It is heart-wrenching sadness.  Right before our IM races, we asked TeamRocky

Today I safely returned from Pittsburgh, PA alone, while Andrew flew to a business trip and Ana and Trent continued on vacation in Washington DC. I am sitting on my couch, struggling to find the words to explain the depth of my experiences over the last few days.

In a nutshell, Pittsburgh was beyond our dreams. Where do I start? Everyone was healthy and stayed that way during the Games. My family was all together except for my brother (I hope he comes some day). Ana and I performed our best, and the competition was less intense this year, resulting in some reward for both of us. Everyday was sunny and warm, but not too warm. There was some traffic/construction but overall Pittsburgh was easy to get around. At the Transplant Games all kinds of people came up to us and greeted us, many whom we remembered from prior years and some whom our prograf brains have kept us from remembering:). People were so friendly to us! Maybe this had to do with the fact that we were in the 2006 Transplant Games video and put on a poster. Actually the same shot of Ana and me hugging was placed on a huge banner and also on the cover of the program. When I first saw that, I thought, “Thank God Ana lived.” If she had died last year, I couldn’t even bear to look at that picture. My point is that perhaps people knew us because of that shot. Also, we are two of a handful of Asian athletes so we are easy to identify. But overall, we were welcomed into this large yet intimate crowd like family. This is Ana’s 4th Games and my 3rd, so we have the pleasure of building stronger friendships each returning year. I am so grateful for the connections we have made at the Games.

Okay, let me jump back a bit. Andrew and I arrived in Pittsburgh late on Wednesday night, 7/9, and stayed at the local Days Inn. We had a late night meal at Applebee’s which, like the hotel room, left much to be desired. The next morning we drove to Erie, PA., where Andrew spent one year of high school after his parents moved to Edinboro during his high school years. We met his influential 11th grade teacher Suzanne, who treated us to a delicious and filling meal in her cozy home. Andrew reminisced about transcendentalism and his life, and I got to know this very inspirational teacher who truly lives…. (I mean, anyone who had ridden a Harley across the country and has her own jewelry business takes life by the horns). After this meal, we drove onward to the town where Emmett, Andrew’s best friend from his high school year, lives. We passed the run down factories in Erie and it all reminded me of the movie “Roger and Me” and the demise of American manufacturing. We checked into a simple motel and then met Emmett and his sweet Japanese wife and their half-Japanese girls. We were treated to a delicious tonkatsu dinner while Andrew and Emmett caught up on 19 years. There are very few Japanese in Erie and I was shocked to hear that all the Japanese food we were eating was shipped by Emmett’s in-laws in Japan! While it was delicious nonetheless, I could never live in a place like that…

Anyway, I truly enjoyed the warm conversation. A sign that Andrew and I are meant to be because his genuine, conscientious friends who reflect on life and are living the best lives they can are like the friends I’d like to have. After dinner, Andrew, Emmett and I took a walk along Lake Erie and watched the sun set late through the cloudy sky. Smokestacks in the distance added to the grey clouds, and my eyes gazed out at the vast ocean-like water of Lake Erie. We hummed Gordon Lightfoot’s “Wreck of the Edmond Fitzgerald.”

The next day, Friday, 7/11, Andrew and I got up early and drove 140 miles back to Pittsburgh. We checked into the Hilton and gathered some goodies to bring to set up our booth at the Transplant Games EXPO. Ana and Trents’ flights were apparently severely delayed (bad weater in Chicago) so they arrived at 4am instead of 10pm the night before. While Ana slept, I met with Tiffany Christensen, author of “Sick Girl Speaks,” (www.sickgirlspeaks.com) and set up our “Creative Expression and Transplantation” Booth. We set up photos from Michelle Compton’s “The Breathing Room” exhibit (www.thebreathingroom.org) and put out our book and flyers. While we weren’t allowed to sell our book, we welcomed this opportunity for publicity at the Transplant Games. Tiffany was such a great sport and took charge of the booth while Ana and I fulfilled all of our Team Nor Cal commitments.

We left Tiffany and rushed to Carnegie Mellon University for swim practice. It was a nice 9-foot deep indoor pool, not too cold but somewhat claustrophobic in the hot greenhouse-like glass building. I had to calm myself even while practicing. We met up with Lara, our dear lung transplant CF friend from Stanford. She hadn’t been in a pool in 7 years, and not since her transplant. We were going to coach her on backstroke for the swim relay. She was on IVs and removed her port needle just for practice. Now that’s dedication! She wore my swim cap and goggles and floundered about in the pool. Luckily for all of us, it was a yard pool. Her first 25 yards were great but then she was so winded she had to rest. On her way back she zigzagged across from one edge of the lane line to another and Ana and I glanced at each other with concern. We barked instructions to this poor woman who was pressured by the competitive Stenzel twins and probably didn’t have the heart to say no, she didn’t want to swim the relay. But Lara was such a good sport. In several laps with changes in her technique, she improved drastically and was able to swim 50 yards with a good pace. We felt to grateful to all be swimming together, after all the tough CF and transplant roads we had walked along together. I still remember Lara at her first transplant support group, 1 1/2 years before my transplant, and I remember her in ICU. She remembers the support group where I was end stage and there was little hope. And now, we were swimming together! Ana and I met our fellow swimmers from years past, who intimidated us with their strength but we were all warm and supportive. That is good sportsmanship. Best of all, we swam with Laurie S. from CTDN, a wonderful dream.

After swim practice, we rushed to our Team Nor Cal dinner and met up with all of our enthusiastic teammates, our families, and all of our friends. It was so exciting to finally be here. We ate like Americans- fried mozarella sticks, chicken tenders, pretzels, salad (!), shrimp alfredo and Team Nor Cal white cake. What is wrong with American food!!!?? It was lard-loading rather than carbo-loading. My stomach paid the price that night.

The following morning, 7/12, we woke early to join Team Nor Cal for our team photo. We then toured the EXPO and picked up free samples of water bottles, fans, chapstick, sticky pads, bags, frisbees, seat cushions, etc., all adorned with medication branding and all thanks to the American medical industrial complex! I am so glad the makers of my medications sponsor the Games, but I’d gladly give up my branded frisbee for a cheaper copay… Anyway, I joined Tiffany to man our booth and welcomed many friends who came by: Paul F., from USACFA, Joe S., and his wife, who is one of the two twins from Georgia who both had heart transplants, Kim J., our dear online friend, fellow teammates, our donor family friends from prior Transplant Games, etc. So many familiar faces and so much love among these people from all over the country! In the chaos of the EXPO, it was so comforting to glance over and see Tiffany’s enthusiastic smile next to me. We were in this together.

Around noon, Ana and I rushed off to the pool to swim the 100 yard Individual Medley. We barely got there in time because they re-arranged the times of the races. The Byrnes family was not informed and we swam before they got there! We basically arrived, changed, jumped into the practice pool and then it was time to compete. Oh, our nerves were so high! I had eaten a caffeine-filled snickers bar and power gel, but could not eat lunch because my stomach was nauseous from nerves. Ana and I were placed in adjoining lanes, and climbed the diving blocks. At that time I looked up to the ceiling and thanked God and Xavier for this opportunity; the outcome of my race was up to them and only them. It was a moment of surrender.

We heard the dreaded loudspeaker, “Take your mark” and then the buzzer. I wasn’t sure if it was a false start so I delayed jumping in for a split second. When I saw everyone else enter the water, I kicked off. Woops. Then my out of body experience started. All the technique and form goes out the window; even the breathing. All I know is that I moved as fast as I could and focused on getting to the end of the pool and back. Fly. Back. Breast (where I moved ahead). Free. Before I knew it, the race was over. My muscles didn’t burn, but to say I breathed heavily is a gross understatement. I saw Ana swimming freestyle in the lane next to me and I started screaming. She was coming!!!! She charged through the water, not the fastest but darn fast for someone who, one year earlier, could hardly move. When she reached the end I held my hand out and she embraced it. We did it. We swam the IM for the first time, together. God, we are lucky.

After the rest of the age groups and men completed the 100 IM, it was time for the 400meter. Since this was a yard pool, they changed it to 500 yards. That is TWENTY laps! Not 16 laps but 20! And Ana masochistically signed up for that. She dove in, still tired from the IM, and swam strong at a steady pace the entire time. I was amazed. She had great form and didn’t hesitate at the turns. She swam with the same strength and determination she had that got her through her second transplant. She completed it around 11 minutes. Not bad!!!! I screamed til I was hoarse.

Some men had a really hard time. Some had to turn on their backs and paddle. One man hung to the lane line. The harder the effort, the more the crowd cheered. Some men stopped at each lap to catch their breath. For one man, a heart recipient, after the first two laps it seemed he was going to pass out, or quit, or both. But after a significant pause, he would get back on his back and keep going. One lap after another he would stop, recover and continue. The crowd roared and cheered at each lap, yells of “Go, go, go!” and “Keep going!” gave him the energy to remain bouyant. This man was pale white and I was worried for him. It took him 20 minutes to swim 500 yards. Later he explained that his heart rate wouldn’t increase despite his muscle movements; that is the disadvantage of heart recipients. But, HE DID IT. His wife and kids were in tears when he finished and stumbled out of the pool. This was the greatest example of determination and inability to quit that I’ve witnessed this year at the Games. His drive made me feel like I could push through any challenge that comes ahead.

After the 500 races was the award ceremony. I was very blessed to receive a silver medal in the IM. I was content; all I wanted was one medal in these Games.

I don’t mean to be graffic here, but let me share a beautiful moment in the ladies locker room. Women of all ages, shapes and sizes are gabbing about their performance and their satisfaction at completing their races. They share their surgery histories- the what organ/when questions are answered along with statements of amazement and gratitude. Best of all, we all walk around bearing our scars without any embarrassment. The size of the scars reminds us who among us are the walking miracles; we all are but some are more than others. There is a freedom here I don’t have anywhere else. These scars are our badges of courage.

We rushed to a quick dinner at Panera; my poor family was starving without lunch all day. They weren’t fueled by adrenalin like I was. We then rushed to the Opening Ceremony at the Convention Center. Yes, it is strange to have some swimming events BEFORE the official opening ceremonies, but that just happens each year because of scheduling….

All athletes lined up backstage in our team t-shirts/uniforms. It was great to see lung recipients Lara, Stacey and Tom M. holding the Team Nor Cal banner. We were all together at the Games! What a celebration! As we entered the stage, Ana and I blew bubbles and cheered. I walked in the back of the group so all the new people could have a chance for the grand entrance. I walked with the ranks of Nancy L., Tom G., Paul Y., all the old-time Team Nor Cal athletes who paved the way for Ana and me at the Games. What an honor at my third Games, to join the ‘old timers’.

The Opening Ceremony consisted of this procession of each team, then the moving entrance of hundreds of living and deceased donor families carrying donor quilts. After the procession, there were speeches and talented musician organ recipients who sang. There was the carrying of the Games torch by last time’s “Athletes of the Year” and the attempted lighting of the actual torch, which didn’t work. The Opening ceremony ended with the recitation of the Athlete’s Oath for good sportsmanship and with the the four powerful words, “Let the Games Begin!”

I returned to my hotel room later than desired, still wired on caffeine. With my dad’s snoring and my nerves for the next day full of activity, I downed 10mg of ambien and prayed for a good night’s sleep. I hadn’t slept well in days. The next day was going to be my hardest.

I will write more tomorrow. I am tired and it’s 1:30am EST now. Good night for now. Thank you for re-living these days with me. I wish you were there with us at the Games. Thank you for your support.

Have a great Friday.
Love, Isa

Tomorrow I depart for the US Transplant Games with three other lung recipients. We will proudly represent the 5 lungs on our team of 28 transplant recipients on Team Northern California of the USA Transplant Games. I am emotional this time of year as I approach my 1st re-transplant anniversary- there’s some post-traumatic stress from the physical challenge I had this time last year, as well as feelings of sorrow and guilt for my donor, whose family is reminded it has been a year since he was with them. But of course I rejoice in all I’ve been able to do and how wonderful my life has been in only one year.

Three weeks ago I returned to work doing genetic counseling in the area of prenatal diagnosis, so this will limit my personal time further but also provided much needed income, benefits and intellectual stimulation. Already I enjoy working with families and getting outside of my own little world. To make matters bettter,  I work with an incredibly supportive group of colleagues who exemplify quality human beings.  

I’m working hard on my goal of not overdoing it and trying to relax. With the inspiration of Ed Kinney, I recently began playing my flute again. It is amazing to breathe and remember the fingering from high school. I have been inspired by my musical and artistic friends that we all need a  creative outlet. It helps the brain smile.

Isa’s post was immensely long last time so I won’t be too verbose. I just want to thank you all for your support and encouragement as we head to the Transplant Games. For those of you who may be interested in an ABC news segment on the Transplant Games and Team N.Cal, please see:
http://abclocal.go.com/kgo/story?section=news/local&id=6252776

I hope you Californians are surviving the bad air and hot weather. With new lungs I barely notice the smog, but many asthmatic and CF friends are suffering.

Please pray for my friend Dawn who is waiting desperately for a re-transplant AND a new kidney. She is in critical condition and had a false alarm “dry run” yesterday. May God grant her the third chance that I had.

May goodness and health surround you all.

 ANA

I hope you all are enjoying your July 4th long weekend. It is a great feeling to stop our busy lives and reflect on the joys of summer, and the gratitude I have for the freedom of this country.

Yesterday was a wonderful day. Some of you may know I have learned to play the bagpipes, and joined the San Francisco Stewart Tartan Pipes and Drums. I’ve gone to practice every Tuesday night for the last 1 1/2 years. It is a warm and welcoming group of people, even for those without Scottish blood! So, on July 4th, was a reward of my practice. I marched in the Piedmont (small town near Oakland) Parade! It was a short parade less than a mile long, but we played 6 tunes and I played 5 of them! Last year, I only played one tune! This year, I just haven’t memorized one of the 6 yet! It wasn’t too hot either, so sweat did not blind me like it did last year. Our band had to learn interesting formations where we criss-crossed through each other mid-song, and slow-marched and then sped up, and with my prograf brain damage it was quite a challenge to focus on the music, the movements and the pipe major (conductor)! The crowds loved us, even as little kids covered their ears as we passed. In the middle of the parade I had an out of body moment. Suddenly I felt like I wasn’t really me; like I was dreaming. I kept asking myself, “How did I get here? Is this really my life? What am I doing, piping in a parade?” I just remember living in the East Bay, in Berkeley near Oakland, and being so sick with CF, that the area itself just reminds me of being short of breath. And now, ten years later, I am marching in a parade down the street, blowing my brains out into a loud bagpipe, screaming to God and the world that I am very much alive. What happened?

The greatest joy is that near the end, I recognized a short skimpy dress and saw Ana in the crowd taking pictures. She was there with my two closest friends from college, and their families, along with Andrew. I kept my stoic bagpiper face and avoided the distraction of smiling and marched ahead. But it warmed my heart to know Ana was watching me pipe in this parade. Last year, my uncle and aunt visited us when Ana was so sick she could hardly walk. I think he came down to say goodbye, actually. We had a barbeque at our home, and Ana was so miserable. Now, she got to see my march in this parade.

Funny story: Ana was stopped by the Puritan fashion police, people dressed up in colonial outfits, and cited for “indecent exposure and inappropriate dress!” She received a ticket and then another one for ‘excessive laughter.’

We truly enjoyed going to lunch with our college friends whom we have known now for half of our lives! We played with and held their kids and reminisced about our days at Stanford. It is so wonderful to grow old together! We enjoyed ice cream sundaes together, a treat of July 4! Never mind my sugar was 364 when I got home. The marshmallow cream was soooo worth it.

After a perfect nap, in the evening, we went to Ana and Trent’s home to enjoy a BBQ. The two of them prepared enough food for 20, although only 7 of us ate. We met Trent’s friends and enjoyed warm conversation. In the night, Andrew and I drove up to our local community college parking lot and overlooked the Bay and the distant firecrackers. I insisted on going- because there is only one July 4, 2008 and we are both alive and well now, so we might as well enjoy the tradition of the firecrackers- even if it’s old hat.

These days Ana and I are re-living the moments of one year ago- how she used a wheelchair, how she couldn’t move, how she went to a party and took her oxygen off briefly because she was embarrassed and then nearly passed out, etc. It is absolutely miraculous that we went swimming today and raced a 50 m butterfly. I cannot believe that she was re-transplanted. One week from tomorrow is her one year anniversary. I didn’t even swim butterfly until I was 3 years post-transplant, and Ana is flying like it’s no big deal.

It is bittersweet to share this good news. Today was my friend Siobhan’s funeral. I didn’t go because I was feeling so exhausted all week and just needed to listen to my body and not drive 3 hours one way to see her family. This is my new decision to pace myself. I really wanted to go but I had to set my limits, and be selfish, given the upcoming events next week. And Ana’s good friend with CF/transplant was placed on a ventilator today, so I kindly ask for your prayers for Dawn. She is on the top of the list and we are all hoping and praying for a miracle. Sometimes I don’t know what the point of praying is, because I feel like each person’s life will unfold how it is meant to unfold. Prayers just seem like our own desire to control the situation. God didn’t listen to Siobhan’s prayers, but he did for me, for Ana and for many other lucky ones. I hope he listens to those praying for Dawn.

Another person whose prayers were answered today was Rich D. Today is his 40th birthday!!!! He is proud to be an old man:). I went briefly to celebrate with him in San Francisco. It is such an amazing feat when someone with CF lives to 40 without a transplant! Rich writes for the CF Roundtable, a wonderful newsletter that I highly recommend. Rich is hanging in there and quite strong, and one of his many assets is that he is an extremely likeable guy and is therefore surrounded by loving friends. That is the best medicine to help someone reach 40! Hooray, Rich- I wish you many many more birthdays ahead.

Another miracle- today my friend Joyce celebrated her 8 year heart-lung transplant birthday and is thoroughly enjoying her 5th decade of life! Yes, she was called for transplant on her birthday- what a great gift, eh? You go, girl! I am so happy to grow older with my transplanted buddies. Wow.

In five days, Andrew and I will be leaving for Pittsburgh to attend the US Transplant Games. A group of our team, Team Nor Cal, were interviewed by our local sportsman, Mike Shumann (a former 49er) on the ABC Channel 7 news on Wednesday. It will air on the Monday July 7 6pm news. We swam at the challenging 50m Stanford pool and ran around the track. It was a blast. If you are local, please check it out.

Okay, now I confess that the last week or two I’ve been a basketcase. I’ve been training like crazy, and I am frustrated that I am not faster. This is as good as this body gets, so close to the Games, with my limited training sessions since our road trip. I remind myself to just be grateful I can even be athletic! But the burning and breathing and struggling is so, so, so hard. I panic easily in the pool and have to breathe very hard. I have so much fear that something is wrong with my lungs because I breathe so loudly and my airways collapse causing this weird stridor sound. I fear that something bad will happen before or during the Games. I remember how strong Ana was in 2006 and how she fell apart shortly thereafter. So I am superstituous that something like that could happen to one of us after these Games. Every little chest pain or breathlessness makes me think this is the beginning of the end. If I can’t improve my time on the 100m backstroke (backstroke’s like a test of aspiration, by the way), there must be something wrong with this body! Oh, the fear! It is so easy to be overwhelmed by it. What is wrong with my head??!! I recognize some of it is normal. Some of it I must consciously control. I can’t focus on this invading thoughts of fear. I must let go, relax, and celebrate this moment here and now, because all is good right now. I trust others with CF or post-transplant have similar experiences. I know Tiffany wrote about it in her book, “Sick Girl Speaks.”

Andrew and I were driving home from the gym and I was lamenting how painful my sprints swims where, and I kept asking, “Why, why, why am I torturing myself?” He pulled down a photo button I have of my donor Xavier from my sunshade and said, “This is why you are doing it.” He is so right. I am doing this because Xavier has allowed me to be this strong, because he can no longer be. Get a grip, Isa.

Anyway, my suitcase is packed and I am doing prophylactic inhaled antibiotics/laxatives to make myself as well as possible for next week. I am so excited! I can’t believe I am going to go to the Games with Ana for the third time. When I get on that plane, I will be ready to enjoy the experience as yet another gift that my new lungs are offering to me. Life is good.

I wish you all a wonderful weekend. Thank you for reading my blog. I appreciate your understanding and patience, your tolerance of my confessions. Let me know if you can relate to any of it!

Best wishes for a safe, healthy, and wonderful July. We are in the heart of the best time of year. May you absorb the sun, breathe deeply the outdoor air, and give yourself a break from your hectic routine to laugh, relax and love your friends and family.

Take care, love, Isa

Anyway, It has been an eventful few days. On Tuesday night, after my important bagpipe band practice to prepare for the July 4 parade in Piedmont, I took at 10:30pm flight to Las Vegas, Nevada! I normally hate Vegas, because I detest gambling and that is where my childhood best friend Karen died (it’s in the book). The last time I flew into that airport, Karen greeted me and snapped photos for our last summer vacation together in 1990. So there are a lot of bittersweet memories.

Anyway, I stayed in the gorgeous Venentian and kept thinking, “Why isn’t Andrew with me?” We could have renewed our vows in Vegas! A drug company invited me to speak on Wednesday morning, and I squeezed in the 12 hour visit with my busy week. I stayed in a gorgeous suite and felt like a queen for my 6 hours of sleep! I spoke at 8am and it was well-received. It is so nice to have a chance to say THANK YOU to the people who work so hard to get our drugs out to help us live. Novartis is the title sponsor of the Transplant Games so of course I went crazy with effusive gratitude for their generosity. I played my bagpipes for the group just for fun, and though the reed didn’t cooperate at first, it sounded ok for an out-of-tune, not-warmed up pipe.

When I returned to my room, I received a call from a dear friend to inform me that my friend Siobhan had lost her battle to CF. We cried together and felt it was so unfair for this 26 year old to not have a chance to breathe freely. Siobhan was a girl I met when she was 9, at CF camp. She stopped coming in the last few years because of MRSA, but we spoke occasionally. She started calling me more regularly after her good friend, and mine too, Kathy, died last September, and she wanted someone older with CF to confide in. How privileged I was that she chose me! We talked about her beagle and my basset beagle, and her travels, college graduation, etc. Two weeks ago we talked, because she called me to say she was on the top of the list and really nervous. We spoke about her goals and dreams post-transplant, how she wanted to work and become independent and take care of herself. She had such a hard life but had a wonderful foster family who loved and provided for her in material and immaterial ways. Last weekend, Siobhan had a lung bleed, was put on bipap, then the vent. She was on the top of the list but couldn’t hold out. I haven’t seen her in person in a very long time due to MRSA, but it breaks my heart that she is gone. It just seems so UNFAIR. Of course, I wonder why I was so lucky to get called when I was on a vent, and that this miracle should happen to everyone in those circumstances. She had such a hard life, a thousand times harder than mine, and if anyone deserved some redemption from suffering, she did. I know I’m rambling, but it is so sad when someone in our shoes- with CF- doesn’t make it, doesn’t have the chance to have the life we are enjoying post-transplant.

Anyway, I rushed out of Vegas and flew to Los Angeles, where my husband Andrew picked me up from the airport. We had planned to get away for a few days for our ten year anniversary. Can you believe we are celebrating ten years??? I cannot! Time has flown by. We came so close several times to not celebrating another anniversary. Again, I feel soooooo privileged to celebrate this moment. It feels like a rare event to be so happily married for this long, and for us to still be together physically.

Andrew and I celebrated by going to the George Michael concert at the Forum in Inglewood, California. The last time I was there was June 1990 for Phil Collins with Karen. Andrew and I indulged in heavy soul food at the fabulous Soul Food Kitchen on Manchester before the concert, and then rocked/swayed the night away to this sexy singers’ voice. It was a fabulous concert, with amazing stage lights and screens. We went to bed late and I was exhausted.

The next day Andrew and I met some colleagues and friends, including one who is helping us secure a Japanese publisher for our book- please keep your fingers crossed. We napped in the afternoon like an old married couple, and then met my wonderful parents for a luxurious meal in Century City. I must’ve consumed 4000 calories that day! We returned to our luxurious hotel in Century City, and crashed out again for a long night’s sleep.

On Friday, June 27, 2008, was our actually anniversary. I remember my wedding day exactly- the time of our photos, when we did the makeup, etc. I was surrounded by my best friends in life- some of whom are no longer with me… but some of whom are alive and well, like Ana, Michelle, Nahara, Becca, etc! Thank God for transplantation! I’ve met so many more incredible people in the last 10 years, and my pool of friends just keeps growing. How privileged!

I gave Andrew a photo book of our top memories of ten years. We’ve seen so much! In just 4 years, we’ve traveled to two Transplant Games together, to Spain, Japan, Norway, Austria, Germany, and hiked the Grand Canyon, Half Dome, we sang in Carnegie Hall together, we did the Seattle half marathon and 199-mile Relay together… I get tired just thinking about how much we’ve done! It is so much fun to look back and reminisce. We saw our wedding video and marvelled at how skinny Ana and I were- and Ryuta (my brother) and so many of my other friends! Ten years of weight gain!:) On Friday we “relaxed” all morning and then worked out in the gym, doing a 5K run on the treadmill, weights and then I swam a bit. Then we went out for a nice Indian lunch near the Westside Pavilian. I have so many memories of each corner of the LA. That mall is where I had my last meal with Akemi and Naomi, my two best friends who left for Japan in 1986. We then saw a film called “The Garden” as part of the LA Film Festival. It was suuuuch a fabulous film and I totally recommend it to anyone with social conscience who is interested in urban planning and social justice. After the film, we returned to the car and did not find it. It had been towed! After calling the posted number, we learned we had 20 minutes to get to the towing center 1 1/2 miles away. Andrew started running down Pico while I called a cab and tried running in my impractical feminine shoes. That’s why I hate being feminine- pumps and heels are not meant for active people. I trotted down Pico trying not to sprain my ankle, until I found a cab, and picked up my sweaty running husband near Barrington. We picked up our car 5 minutes before they closed, after paying $150. Then we raced to our dinner reservation at Spago’s, a fancy restaurant in Beverly Hills. We actually made it, only a few minutes late! We were so grateful that our car impounding didn’t interfere with our plans:).

Our meal at Spago’s, Wolfgang Pucks’ restarant was amazing. We had the tasting dish and had about 7 different plates- fish, decorated with quail egg, sorbets, mascarpone cheese pasta, lamb, and scrumptious strawberry kaiserschmeren. I love to eat and this food was the best I’ve ever had. I also sat across from Jason Priestley, which doesn’t matter to me, but it was cool to see someone familiar.

Our evening ended with a bottle of champagne in the hotel room. I could only handle 2 glasses before feeling miserable. Alcohol and I don’t go together. I skipped my sporanox that night for obvious reasons! Andrew presented me with a gift- a dedicated brick at the Civil Rights Museum in Memphis, where Ana and I loved to visit in May.

Yesterday, we slept in and then took a short walk to the Hollywood sign while I played my bagpipes. It was a warm day and I had never been to the nicer neighborhoods in Hollywood. We also drove by Andrew’s childhood home in Northridge, before picking up burritos for the 6 hour drive home. We arrived at home safely- thank God- by 8pm for a home-cooked meal.

I am so grateful to be married to my best friend, and it makes such a difference to slow down and spend quality time together. It is hard to escape our rat-raced lives but it is so necessary for our soul connection that couples need, even 10 years after marriage.

To all of you who’ve been part of my married life, I am so grateful for your support. I guess now the whole world knows what kind of man I married because of the details in the book. I don’t know why I’ve been so lucky. The love- and random compatibility- just happened.

I hope you all had a great June and I wish you health, good food, safety, and gratitude for being alive this summer.
Love to you all-
Isa

Please join me this weekend in remembering my donor James, who, 8 years ago on June 14, 2000 gave me the gift of life. He, like so many other organ donors, had his life cut short for reasons we will never understand and left his family and friends mourning his loss and remembering his  life and who he was. I am privileged to know James’ family and join them in spirit this weekend to remember the events of 8 years ago. His loss was like the rain that sprouted a new tree for others and my life has been never been the same.

So I pay tribute to him today, although it is bittersweet as it is actually the first of my transplant anniversaries that I actually don’t have his lungs within me. I still honor and celebrate him no matter what and thank him for his breath, his life, his energy. I  commemorated the occasion by swimming in the morning and going on a kick-ass 14 mile bike ride that left my thighs burning and my new lungs stretched out. (yes I did this with the damn cast on).

Ah - to be breathless from motion is the best form of breathlessness there is.

As June is half over, I welcome the warmth, I enjoy the sun and the outdoors and I celebrate how different things are today than they were a year ago.

Please join a glass with me as we toast to James ….

 I hope this finds you all healthy and enjoying the summer and anticipating some travel plans of your own.

Tomorrow I return to work after being on disability for 13 months.  Back to the working world- both a privilege and a dread. It is a PRIVILEGE to be well enough to return to a job I love but a dread at the early mornings and inflexible schedule. Back to a reality that  almost everyone experiences- Monday morning at the office. But I’m grateful to return to my former part-time benefited position in prenatal genetic counseling- grateful to stimulate my mind, work with my dear genetic counseling colleagues and give back what little I can to others. Life goes on, thankfully.

Hugs to all my friends and bloggers,

ANA Stenzel