Ana and Isa’s blog

Hi friends,
I couldn’t refrain from reporting that today Ana and I went to Jazzercise together! It was so wonderful to be jumping up and down on our steps next to each other. It has been over 2 years since we have been in a Jazzercise class together. Ana quit when she moved to her home and she thought the class wasn’t challenging enough. How humbled she is.
Today Ana was so strong, she hardly seemed impaired at all. She kept going the entire time, and after class did 12 modified push-ups- new scar and all. I could barely do that!
Our dear friend Carla, with whom we climbed Half Dome in September 2006, was on fire as the instructor, sharing her energy with Ana and me. She exudes a beauty and strength that truly inspires us.
We were touched to dance to the song together, whose lyrics are below:

Time goes slowly now in my life
Fear no more of what I’m not sure
Searching to feel your soul
The strength to stand alone
the power of not knowing and letting u go
I guess I’ve found my way it’s simple when its right
Feeling lucky just to be here tonight
and happy just to be me and being alive.
Love, in and out, a mile in my heart,
And though life can be strange I can’t be afraid
Searching to feel your soul, the strength to stand alone,
The power of not knowing and letting u go
I guess I’ve found my way it’s simple when it’s right
Feeling lucky just to be here tonight
and happy just to be me and being alive
I guess I’ve found my way it’s simple
when its right feeling lucky just to be here tonight and
happy just to be me and being alive.

How perfect.
Thank you for reading this blog- I just had to celebrate. I wish you all joy in being able to do what gives you pleasure.
Love, Isa

Dear Friends,
I hope you are all well and have plans for a fantastic weekend.
I just wanted to share some great news: In my hands today, I held the very first advanced copy of our book, “The Power of Two: A Twin Triumph over Cystic Fibrosis”!
It’s real! It’s happening! The book is out! Dreams come true!
I was quite moved that 4 years of hard work has materialized into a real book! What a great honor that the world felt this story was worthy of publication. Really, though, it is the University of Missouri Press that believed in the story and has worked so hard to bring this story to the public. Exactly one year has passed since UMP accepted our book for publication. It took that long to produce a quality product.
I felt so patriotic, all of a sudden, that only in America, can a random person have goals, work towards them, and have them fulfilled, without regard to race, gender, or status. This is true freedom. God Bless this Country!
I am especially grateful that Ana has survived to see this goal realized. She was so eager to see it; I was running errands and she drove to meet me at Trader Joes, and I met her in the parking lot to hand over this sacred first book. I said, “This is why you held on! This was your goal!” and she corrected me, “No, I have other goals now.” What a breath of fresh air to hear her say that, no pun intended.
I want to thank everyone for all their encouragement and support to make this day possible. It is truly moving to think about how this book is a product of a ‘village’ and you are in it! Thank you.
First and foremost, though, Ana and I signed our first copy for the person who deserves it most: my loving husband Andrew Byrnes, our editor, cheerleader, late night support, even our financial assistant. He has sustained me emotionally and physically, to allow this dream to be realized.
We believe there are higher spiritual forces at work here to allow us to witness this moment, so our gratitude to a patient and fair God is beyond description. When Ana held the book for the first time, she exclaimed, “Praise the Lord!”
Amen.
The rest of our advanced copies will come next week. I believe bookstores should be stocking them in several weeks.
Thank you all for helping to make this dream come true! I can’t wait for people to read the book and get to know our dear friends who’ve shaped us, who are long since gone.
Hugs and love, Isa

Dear Friends,
Thank you for reading our update again.
Well, one week ago I was going through intestinal hell and now Ana and I just returned from Dante’s Inferno in Southern California.
Still weak from my 3 day fasting, Ana and I were determined to go on another road trip to visit our dear friends in Southern California. Together with my visiting cousin, we drove down on Monday, just as the fires started to get serious. We passed the fire in the hills by the amusement park Magic Mountain, in Valencia, which I guess over the next half day, practically reached the roller coasters. After dropping my cousin off in Rosemead, Ana and I debated about where to go. My parent’s home in Pacific Palisades was too close to the Malibu fire, so we decided the air would be bad there. We thought we would stay near our other counsin’s in Orange County, but the air was so horrible there due to fires near Tustin, we decided just to head towards the San Diego beaches. Despite warnings from our worried partners and friends in San Diego, we spoke to our friend near the bay who insisted the air was still okay. So, after bickering and griping, and stopping numerous times with indecision, listening to news reports on the radio, Ana and I finally joined the few scattered cars on highway 5 and drove southbound to San Diego. Our inner drive to be reunited with dear friends overcame any intelligent decision-making. We wore N-95 masks and I had just had a new filter installed in our car, so contrary to my usual desire to endure discomfort, we closed the windows and blasted the air conditioning. The northbound route was bumper-to- bumper with evacuees.
Anyway, we met our dear college friend and stayed overnight in her sealed apartment in Mission Bay, where the sky was still blue with some mild haze. We giggled and shared our life adventures in the last year. We felt a compatibility that makes us believe our friendship is a gift from something higher. We stayed inside all day, ate indoors at restaurants (I could afford large quantities since I lost about 8 pounds), and whenever we walked outside we wore our N-95 masks. We could not smell smoke but nonetheless refrained from breathing deeply. The next day we saw another dear friend all day, who had come from out of town. I certainly felt restless with a lack of exercise because I hadn’t moved since before my hospital stay last week. But our times with our friends were incredibly uplifting and inspiring. It feels so wonderful to connect with people who are living the best life they can live, and are growing as people each day of their lives. Overall our 28 hours in San Diego made us realize that these friends are exceptional people who strive to make the world a better place, who think consciously about helping people, who have goals and act deliberately in their daily decisions to make these goals a reality. One doesn’t always find people like that. Our partners said we risked our lives just for social visits, but sometimes that is what it takes-literally or metaphorically- to be truly inspired. Ana and I left San Diego with a great feeling that we are so privileged to surround ourselves with exceptional human beings.

We knew we had to get the hell out of San Diego so we drove out at night around 9:30pm. As we passed Camp Pendleton, in the dark, we saw massive flames covering the entire length of the mountain range, only about 3/4 miles from the freeway. The flames must have been 2-3 meters high. Of course one can imagine this fire as the wrath of God or something supernatural like that. The sky was lit in a beautiful red glow. Ashes fell lightly on our car as we whizzed by, like a gentle snow. People were stopping on the side of the freeway to get out of their cars to watch and to take pictures…. ah, the foolish acts of those with healthy lungs. It was truly terrorizing and I felt a physical sensation reminiscent of hypoglycemia, which was really just adrenalin. Of course, we had our N 95 masks on even inside the car.

I ask God to protect those firefighters and those people whose homes were burned, and all the cramped families sleeping in high school gyms. May we be reminded that nothing material really matters! My god, mother nature is in charge. There is no stopping her. It is tragic that this happens, but one look at the dry chaparral in Southern California makes one think why doesn’t this happen more often?

We got the heck out of there, and in the early morning we had heard the highway 5 was closed, so we would’ve been trapped there. Thank God we made some good decisions…

We head to a motel in Long Beach and slept at midnight. The next day we enjoyed seeing our other cousin from Seattle and her family nearby in Seal Beach. Seeing my cousins is like seeing our 3rd and 4th sisters, because we have an immediate connection and compatibility. We met our extended family in a playground at the Seal Beach pier, as our 4 year old and 2 year old 2nd cousins were such a delight to watch. The 4 year old Pia said “Why are you wearing a mask?” and I told her about the bad air. It was so fun to watch them climb all over the jungle gym, to test their bodies and see what they could do. Ana helped the 2 year old, Francie, cross the bars. When Pia got scared at the top of a tower, I helped carry her over to safe ground. Francie copied her big sister in every step of the way, and was so confident in her body. She just climbed the tower and jumped over the high gap to the safe ground of the play structure, without fear. Francie followed Pia everywhere. Pia made an imaginary pie in the sand and while it baked I pushed her on the swing as she yelled “higher! higher!” Pigeons flew above us and I joked about her trying to touch them with her feet. She kept wanting to fly higher and higher. Francie wanted to swing too but all the swings were occupied. With some diversion, she avoided a meltdown. We had our ’slices of pie’ and Pia went back to playing with another girl in the sand. After the adults chatted for a while, it was time to go. Pia left her little friend and you could see the sadness that the girl left behind felt that she had lost her playmate. As a childless adult, I came to realize what most parents already know: that the playground is a profound metaphor for all adult interactions.

We walked to a restaurant for lunch and it was amazing to have people on the street say stupid comments about our masks, like “Are you going to rob a bank” or cover their mouths as we passed by, our step aside giggling, etc. Ana had to finally say, “Haven’t you ever seen someone where a mask before”? It was shocking, that in Long Beach, with the worst air quality in Los Angeles, and the grey hazy skies yesterday, that people wondered what our masks are for. Do they accept this suffocating air as just normal?

After a wonderful lunch with just my loving cousin, and a brief chat with her wonderful in-laws and our friends, we regretfully decided not to visit our mother in Pacific Palisades due to the bad air from the Malibu fire, and head straight up north. Our loving worried partners begged us to not spend more time in Los Angeles risking our lung capacity. As I passed the exit leading to Kerman, the home of my donor, I looked up at his photo on my sunshade and apologized for taking his healthy lungs a bit for granted, because my desire to see my loved ones was so great. Fortunately, my lungs feel fine following the 3 days in Southern California, and so do Ana’s.

I arrived home and took in a deep breath of cool, fresh Bay Area air. Ah, clean air.

I ask you to forgive our stupidity and try to understand our reasoning. All our lives we’ve had to decide between taking care of our lungs versus truly living the way we want to, and no life well lived has no risks.

We are grateful to God to arrive safely home and fall into the arms of our forgiving men whose gifts of freedom let us be who we are.
We hope you are all well, enjoying life, staying safe and balancing the risks and gains of your own life. Have a blessed week!
Best wishes, Isa and Ana

Dear friends,
Thank you for caring about our story and our updates!
Well my extra large medic alert bracelet chose to rear it’s ugly head.
Six days after my climactic half marathon finish, I find myself sitting impatiently in Stanford Hospital. I have been here since Wednesday night due to an intestinal obstruction.
Well, ladies and gentlemen, there are morals to this story. I guess my previous post was too pompous and cocky about being just too healthy, and the universe decided to remind me of who I really am. No matter how healthy I am on the outside, I am chronically ill. Have been and always will be. This is just how it is, no use fighting it, but I just have to embrace these humbling situations and deal.
I woke up Wednesday morning with a sharp pain in my lower right abdomen, which I initially thought was early signs of food poisoning, since I had sashimi the night before, and my usual blockages started with feeling bloated and being stopped up for a few days. Over the course of a few hours, despite regular food and water intake, the pain got worse. For the fun of it, I nonchalantly poured laxatives into my mouth to see if that would help. By 2pm, I knew it was a full blown blockage when couldn’t keep down the mother of all laxatives, golytely. So, then followed a phone call to the CF clinic followed by instructions to go to the ER.

Going to the ER means waving the white flag of surrender and allowing the often chaotic external world to take over.
Once one enters the doors of a large medical institution the self disappears and one’s body stands in line among many desperately ill patients waiting for attention. Fortunately, we CF patients are spoiled, especially the lung transplantees, and are triaged to the top of the list.

Still, I sat for several hours in a private ER pediatric room waiting for orders and getting progressively more dehydrated. The knotting stabbing pain in my gut made me think about… what is strength? There is inner and external strength. External is lifting 300 lbs or running a half marathon. Internal strength is self-efficacy and having a good attitude despite difficult circumstances. The challenge with physical pain is that it requires both. And that is what I surprisingly could not handle. After several hours of constant escalating pain, I just broke down, and begged for morphine. I kept asking myself, Why can’t I be stronger? Yet I believe it is a biological instinct to want pain relief. Man, I applaud those folks 100 years ago, that just learned to endure severe pain without narcotics. That is true strength. The weak went into shock and died.

I spent the first 24 hours in the ER and finally ended up in D ground. I joined my dear friend Anna M. and it felt good to endure the hospital together. I enjoyed an active social time catching up with nurses and RTs from the past, as well as visitors from transplant clinic. I loved listening to these nurses’ stories. One was going to Mongolia for a missionary trip- for 10 years! Others shared their faith, their families, their pets. The health care setting offers such a pure honest human to human interaction.

Anna and I shared some great laughs together. I thought of the old CF days, when all the shorter-lived CFers did was go in and out of the hospital, but they had each other to share this experience, and developed a great love and bond. That was enough to give meaning and quality to their short lives.

To make a long story short, after IV fluids, various humiliating procedures and 3 gallons of golytely later, I still was having cramping. I tried my best to not complain, be too demanding, yet advocate for what I need and appear as an educated, trustworthy patient. There were still a few very frustrating encounters which tested my patients and rather than lashing out, I’ve learned that I must control my anger and respond in a fashion to try to educate these medical providers with the patient’s point of view. Only after they leave do I say a few explitives and bitch heavily to my closest friends. Anna eloquently summarized the hospital experience: “People say stupid shit to you and you say stupid shit back, and then you get in trouble.” But in my maturity I have made a deliberate choice not to spend more energy on being upset about all the things that go wrong here.

Overall, I believe people are doing their best and have good intentions. I must hold onto that conviction. I have to accept that the medical institution and experience is like a very large social experiment.

Okay, I plan on being discharged soon. And eat a very large meal at home.

Thank you for listening to my experience. I hope you all are healthy, well nourished, regular and enjoying life! Have a splendid weekend.
Love always, Isa

Dear Friends,
I hope this blog finds you healthy and enjoying the autumn! Thank you for checking this blog again.

Today, I was happy to complete my 2nd half marathon for the San Jose Rock n Roll Marathon! I joined nearly 50 others in Team Charlie, named after drummer/rock n roll fan Charlie Stockley, a 38 year old friend from the CF community who died Christmas Eve, 2006. Our courses with CF ran quite parallel, which meant he was rather stable with advanced CF but then faced a rapid decline and ended up on a ventilator. He was #1 on the waiting list for lungs which never came after 12 days on the vent. His grieving family and friends organized this team in his memory, and I could not decline participation.

After sporadic training and a lot of negative self-judgment about the physical toll of running, plus my unavoidable drive that made me feel I had to perform at 200% no matter what, I generally lamented and whined about participating until yesterday, when I made a concerted effort to ENJOY, be positive, and celebrate the ability to do this, not to mention be with Charlie’s friends and family. Thanks to my friends who helped me get a grip!

Yesterday, I went to an easy swimming class on butterfly, but mistakenly forgot to put sunblock on my face, so I had a bit of sun stroke and felt icky. Some of you may know the transplant meds make us extremely sensitive to the sun (and skin cancer). Well, last night Ana and I spoke at the Cystic Fibrosis Foundation Casino Gala to honor our wonderful friend Ed Kinney and say a few words for a “Bid for a Cure”. Since I felt poorly, I worried about my strength today, but…

Today was a magnificent day!!

Thanks to serious hydration with gatorade, and three packs of “Gu” (also known as legal speed), while running I felt fabulous! I had consistent energy and a comfortable pace (12 min/mile). While I intended to run half and walk the rest, I ran 90% of it! It was cool, and fortunately, a beautiful blue sky despite the recent rain storms. The worst part was shivering at 7am waiting for the race to begin.

I promised to stay positive even as I started to ache by mile 5. I followed runners who wore t-shirts that had the word WHINE crossed out in a red circle, and reminded myself to heed that advice. By mile six I was starting to tire, and passed a band that was playing the lyrics, “How long to Heaven….keep the faith and keep on trying” and all I could think was 7.1 miles!

Each time I doubted myself, I would see runners who inspired me. I ran near an elderly African American woman who outpaced me, I ran past a woman with a prosthetic leg, I ran alongside very large runners, and generally saw runners of all ages, shapes and sizes. Many runners wore shirts with dedications to deceased loved ones, and it confirmed my belief that recovering from grief involves active plans and commitments. I saw the faces of the runners, grimacing, sweating profusely, struggling with pain, but these people were all dedicated to crossing the finish line. I was reminded that to be healthy takes immense effort; to dedicate oneself to a physical goal and work hard at making incremental steps towards that goal requires tremendous mental and emotional discipline… but these people did it. And if they could do it, I could do it.

Best of all while running, I felt extremely privileged to be surrounded by the healthiest people in the world- marathon runners! And me, with the extra large Medic-Alert bracelet, and my medical info behind my race bib that would terrify the EMTs, was in this company! I am surely the luckiest lung transplant recipient ever. This is truly the testimony of organ donation. I don’t know how long this will last, but while I’m here, I am sure enjoying it.

During the more painful moments of the race, I thought about Charlie, how hard he struggled and the end, and how my little aches and pains were nothing. I also thought of Xavier, my donor, and of so many of my friends with CF who never had this chance. I breathed deeply, I felt fully alive, and I cherished the fact that my body worked.

Around mile 8 I recognized someone from Team Charlie and pushed myself to catch up with her. Then for the last 5 miles, which passed quickly, I jogged 4 min/ walked 1 min with Renee, one of Charlie’s best friends. What a great way to cross the finish line, knowing that Charlie’s spirit was with both of us! I praised God as I crossed the finish line.
And even more special was seeing Allison, Charlie’s Mom and Kelly, his sister and all his friends at the Organs R Us booth at the finish!

A special thanks goes to Rob, my co-runner on Got Lungs? team for the Relay in May 07, who encouraged me for so long to keep running and keep going, and who was there to hug me with Andrew at the finish line. He finished in 2 hours and 10 minutes, and I finished with Renee at 2 hours and 40 minutes! My Seattle half marathon last year took 2 hours 54 minutes (rain, cold and hills).
I am sore but drank tons and tons and feel really good, unlike after the Seattle half marathon. It’s all about hydration!

Anyway, Ana and I then went to the Stanford Bookstore for an Alumni Author’s Showcase, even though we didn’t have our book yet. Then we came home to nap. The first thing I did when I got home was hang my medal on the large portrait of Xavier in my hallway.

Ana is doing well, active and biked to and from my house to hers. Maybe she’ll be up to the half marathon someday… but if she’s not, that is perfectly okay.
I am grateful for all your support and forgive me if this post sounds like I’m bragging. I am just celebrating the miracle of this physical accomplishment and my gratitude for these things that are possible. If it encourages you to imagine what is possible for your physical goals, then it is worth sharing.
Thank you for all your love and support.

Have a great week,

Isa

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Dear Friends,
Ana and I just returned from 3 days at NACFC, the North American Cystic Fibrosis Conference in Anaheim, CA. This is the largest gathering of CF physicians, health care providers and scientists in North America- with over 3000 people attending. I went to represent the Breathing Room, and brought images from Michelle Compton’s beautiful artistic expression gallery (www.thebreathingroom.org). They were very well received.
I am completely mentally saturated with CF research and knowledge, and I feel socially and emotionally totally uplifted. I feel lucky to have CF.

I am especially grateful that Ana and I are a team again; and though she stayed away from the crowds, she was a tremendous help setting up and tearing down the exhibit. As usual, there was a tremendous amount of giggling and insulting between us.

We made a wonderful mini-reunion from long lost friends before and during the conference, and this reminded us that we continue to feel like living spider webs, connected and attached to vast corners of the world, all because of the disease we happen to have. We visited the grave of our dear friend Christina who died last November, and shared memories and a meal with her sister and parents. We visited old friends who were involved in CF camps that we have attended. We shared photos of the last year, and stories of friends and personal experiences. These connections are even more powerful because of the close call that Ana had that she may never have met these friends again- if she hadn’t received her transplant in July. Ana and I met our old doctors who cared for us when we were younger adults. Everyone has a bit more gray, and a few more wrinkles, but the twinkle in their eyes still shines. The love I have for these people sustains me, and the ability to grow older together is truly a miracle.

A very special thanks to Beth Sufian, the famous CF lawyer, who is the kindest most compassionate and loving, respected, intelligent, supportive, caring and joyful friend ever!!!

When former medical caregivers approached Ana they were amazed at how well she looked, only 12 weeks post-transplant. One woman explained, “You guys just don’t die!” I take that as a complement. It is only because of the efforts of those 3000 in the room that makes this possible.

Another joy: we have two other book signings planned and have been invited to write for the Chicken Soul for the Twin Soul book. How lucky we are.

I celebrate that Ana survived the first 90 days post-transplant without any major problems. I pray she continues to strengthen and stay infection/rejection-free, and that she has the discipline to re-enter the world carefully.

Thank you for your continued support. Love always, Isa