Ana and Isa’s blog

Dear Friends,

I really appreciate after our months of absence. Yes, it has been a busy summer, but last year was busier, and we still wrote! Honestly, as a twin, I have to confess. Ana said I wrote to much, so it was her turn. So she said she wanted to write about our trip to North Carolina in early June… so I waited… and waited… and waited… But the poor thing is just too busy to write.

 Now, as September is upon us, I realize I have to write after 3 months. What a summer it has been. Thankfully, we’ve both been healthy in the lung region, which is all we can ask. Ana continues to endure serious pancreatic problems and tries endless new tactics to help her absorb her food. Lots of flushing going on here… I’m well, but have torn a tendon in my left food (in February) and finally got it checked, and am now wearing a boot and am on crutches. After snowshoeing in Colorado, hiking in Santa Fe, surfing in Santa Cruz, walking around and jogging here and there, handgliding in Outer Banks, riding 30 miles at the Bike for Breath in July,  I finally decided the pain is just getting worse. I felt silly going to the doctor for a little foot pain. It’s not life threatening, after all.

 Well, I guess since late May, the fastest and easiest thing to do it offer a recap of our last 3 months.

 1) In early June Ana and I went to Raleigh North Carolina, to speak at Duke. We then joined our dear friend Tiffany Christensen (of www.sickgirlspeaks.com) and had a girlfriends’ getaway to the Outer Banks. We pranced in the sea, we ran off sandy cliffs with handglides, got sunburned, and we gabbed and ate great seafood. God, it’s good to be alive long enough to find a soulmate.

2) I went to Los Angeles for a physician talk. I combined the event with driving down with Andrew, surfing in Newport Beach with CF Surf Camp (www.maoliola.org). I went to the Donate Life Hollywood Donate Life Film Festival, and saw great clips on upcoming TV series documentaries about organ donation. I even shed tears (I have thick skin) with the reality and truth of the acting of the donor experiences on screen. You have to check out CBS’s THREE RIVERS, starting Oct 4 2009, a series dedicated to the drama of transplantation. To top off my CF talk,I met my long lost CF friend Jessica M. from my childhood days at Kaiser. She hasn’t changed a bit- same laugh, same expressions. She has been holding off a transplant and I truly admire her determination. She is beautiful and the only one who truly understands the challenges of growing up with CF in a nonCF Center.

3) In late June I gave a talk at the US Women’s EXPO, which was my book career’s all-time disappointment. I spent 40+ hours  preparing for what I thought were two pretty good inspirational talks on “The Reluctant Student: Wisdom Illness Teaches” and “The Heroine’s Journey: Lessons Learned from Illness” to a tiny audience of CFRI staff. It was the most poorly organized, poorly managed, low quality event I’ve ever seen. I don’t care if I’m making this public. Plus I gave up my 11 year annivesary weekend for it… no grudges. A great lesson in needing to say no.

4) Andrew and I managed to paint the inside of our home and add/change our windows. So the home is better for working conditions. No more dungeon feel in the office. How privileged. The other outcome was I caught aspergillus from the construction and had to start a new anti-fungal.

5) I biked 30 miles with my friends for Team Second Wind on Bay Area’s Bike for Breath sponsored by Breathe California. It was a gorgeous ride through our hills and baylands. The ride for me was bittersweet. The key co-rider and team chair, Marilyn, lie on a ventilator for 4 weeks with end-stage rejection, after 8 years of transplantation. I missed her and felt fear for her, and selfishly fear for me, for Ana, for Lara, Tom, Pat and all my other close friends with transplant. Marilyn was such a cheerleader and mentor for me, and her end had come. Surely, two weeks later, our lung transplant peers went to her bedside to say goodbye before they withdrew support.  I don’t know if she could hear us, all wired up and covered in tubes, but the nurse said she could hear us. All she did was mouth ‘free’ ’free’ ’free’.  Oh God, let her be free.  I still feel numb over losing her.

6) Mid July, I hosted a 16 year old son of a friend on mine in Colorado. We toured around, and delivered him to Stanford soccer camp. For a moment I had my maternal urges fulfilled, as I carried his bags to the front door and asked, “Are you sure you don’t need a towel? Do you need anything? Call me if you do!” After his camp, we went to Santa Cruz to meet the soccer coach, and then went on wild rides at the boardwalk. It was awesome to scream my head off upside down on a twisty ride dozens of feet above the ground. We spun on twisty rides until we were both nauseated. I felt young again.  Then my cousin joined with her 3 and 5 year old girls, and we went to the beach and just enjoyed the presence of these young children. I was awoken one morning with a 3 year old at my bedside saying, “Isa, ya know what? I have something to tell you.” She crawled into bed and we just cuddled and talked about lord knows what. It was precious. Most parents have this moment often; to me it was another miraculous gift of being alive.

7) Late July was spent busy busy busy preparing for CFRI Conference and Retreat. I chaired it and helped with the speakers, orientation, memorial service, support groups and other details. I led a bereavement group and loved it. I feel nicely useful there. I’m with “my own kind” and totally feel confident, skilled, knowledgeable, unique, and I feel a sense of ownership of this event. I don’t have the chance to feel this way in any other area of my life. At retreat, I co-lead some support groups, which are always difficult. You have people with very mild disease, those with severe disease, those in between with other losses (family members, jobs, etc), parents, health care providers and you have people who just lost their life partner to CF. It is such a contrast, and difficult to please everyone. I learned a lot about myself just by being with so many different people. I need to relax. To laugh more. Even if I feel like I need to be in charge. Anyway, I left the 10 days exhausted.

Ana and I went to Kansas City, Missouri in mid-August for a CF education day. Mercy Children’s Hospital was gorgeous. The pharma reps were so friendly and generous. We thought we didn’t know anyone there, but we shared three meals with dear friends! Great to be near Paul F., our publisher and friends, and new friends too. We had BBQ 3 times and Ana’s GI actually survived!

Okay, the last few months have been especially busy for the BIG NEWs…

A wonderful documentary film producer, Marc Smolowitz (Academy Award nominated for ‘Tremblng Under God’ and ‘Weather Underground’) has taken an extreme interest in our story, and together with my husband, has jumped on board to create a film about our trip to Japan coming up in 5 weeks. The film aims to raise awareness of CF and lung transplant internationally, and is inspired by our book. I am a bit hesitant to receive more attention, and be on the spotlight, but if this can help others, then I’m all for it.

We’ve been busy preparing for our one month trip to Japan in October. We’ll be speaking in 10 cities, and have about 20 speeches in 24 days! Maybe I’m a bit ambitious, but I’m writing speeches, having them translated and trying to memorize/familiarize myself with the Japanese vocabulary. I normally speak like a first grader. This is all very challenging with a Prograf brain! Ana and I are so indebted to a handful of passionate organ donation supporters in Japan, including our publisher who have organized this speaking tour.  It is a very controversial topic- akin to abortion in America. There are beliefs that mind, spirit and body are not separate like in Western thought. There are beliefs that the body should remain whole for reincarnation. There is no sense of helping others, unconditionally. Gifts are given for reciprocity instead. There is a sense that death is a process not an event, so taking organs out of someone interrupts that process. Overall, there seems to be distrust that brain death can be accurately diagnosed by physicians. All the reading I’m doing is fascinating and very educational. Sadly, there are extremists in every culture who are strongly opposed to transplantation, using words like ‘living cadaver,’ ’unnatural’, ’selfish’, and ‘thieves’ to describe organ recipients. One mother of a child who received a transplant in the US and died, in her grief-stricken state, came home to receive death threats from transplant opponents. How sad. I am being tested to be ‘culturally tolerant’. Overall, it seems there is underlying resistant to the ‘West’ telling the ‘East’ what to do. So that is not our intention. We will simply go and tell our story, tell our donor families’ stories, and share our emotions and thoughts about our personal experience.

We will go to the Japan Transplant Games (Oct 10-12) in Fukuoka. We will have a CF benefit concert in Sendai to raise funds for a committee to advocate for permission to import CF drugs for the 40 or so CF families who are desperately ill in Japan. We will be visiting Astellas, the makers of Prograf! We will be meeting our old doctor from 1994… in Okinawa! We will have many wonderful chances to meet and greet people. I am so excited!

 But we are nervous as hell, too, because we HAVE TO STAY healthy. I pray for some control, as we enter swine flu territory.

Anyway, I have given you the recap of what’s going on. Stay tuned in the next two weeks, as our website and blog will be totally revamped thanks to the “THE POWER OF TWO” Project spearheaded by Marc Smolowitz and Andrew Byrnes.

Check out this youtube video for a preview of what’s to come:

http://www.youtube.com/watch?v=I1Ki02Xc5bU

 Overall, I remain awed that just by breathing, so many opportunities come up. Such a combination of grace and love have allowed these things to transpire.

Still, though in this extreme busy-ness, I miss my quieter moments, being in the moment rather than planning and planning for the future. I have been insulated from the real world for so long. Now I’m deep in it, full swing. It’s great but I miss something.

Anyway, thanks for reading my ramblings. They really are ramblings. No time to edit… that will have to come in the future.

Thank you for your precious friendship, especially P.R. I hope you all have had a great summer, filled with health and opportunity for connection and growth. Hugs to you all,

Isa

Hi friends-

Happy June! Thanks for reading up on this blog again! I hope June finds you well, growing, learning and finding some satisfaction in every day living.

Ana and I are thankfully healthy, and because of that, we are able to live full good lives.  On Friday, I went to clinic and thankfully had very good PFTs. Ana is struggling with the fact that her pancreas decided to stop working. She is losing weight and not absorbing anything, so much so that her close friend gave her a gift: a cork! Yes, humor continues to be our best medicine. She’s going throught a lot of testing, and I hope she’s okay.

This late May and June continue to be hectic. I have three talks to prepare for to give myself in June. Ana and I are busy preparing for a trip to North Carolina, where I’ll meet some good friends and give two talks. I also plan to drive out to Charlotte to see my neice and my in-laws. Ana gave two excellent talks last week- one for the Genetics of CF at the CFRI General Membership Meeting, and one with me for Dr Ron Kopito’s undergraduate class at Stanford on the molecular genetics of CF. The CFRI talk was fabulous- Ana knows everything there is to know about CF genetics! Dr Kopito is a world renowned cell biologist who studies CF’s basic defect (his father studied CF as well). We had toured Dr Kopito’s lab when we were sophomores in college. A young postdoc then came up to us and said, “So, does CF affect your life?” and we were astounded. Now, Dr Kopito had his postdocs and his undergrads read our book to understand the human side of the cellular mechanisms they were studying. Amazing! I was blown away that our book was being read as part of Stanford curriculum. Are we that worthy? The students asked many questions and really seemed engaged and interested, even the week before final exams. As we shared Chinese food together and chatted casually, I actually felt like falling to me knees in front of these researchers. They are the ones who put in 14 hours a day to better understand the most challenging, mysterious cellular details of this disease at a level we can barely comprehend. They are the soldiers of this CF battle alongside those of us trying to breathe.  We are soooo  graced. First by health, second by being accepted to a place like Stanford in 1990. I was extremely flattered and thankful for Dr Kopito’s interest in our story.

I hope you had a great Memorial Day weekend. For the first time, I really ’got’ what Memorial Day is about. First, I piped with my band on Sunday for a quaint Portugese Parade in Pescadero. I bought my favorite artichoke bread afterwards and went on a good hike by myself in the redwood forest. It was so peaceful to be among the misty redwoods, belly full of bread, inhaling thick cool fog. Solitary hiking is good for the soul. The next day, I piped with my band at our local cemetery on top of the coastal foothills. It was foggy and cold, and I shivered through most of the performance. In the early morning the visibility was very poor. We pipers would try tune on our own, far away from the group, and it was cool and eery to see a piper approaching our group, walking towards us through the dense fog in full gear. Even the 25 pounds of wool and ostrich feather bonnet could barely keep me warm. For two hours, we piped at five different locations around the cemetery. We walked over graves and through masoleums, and I saw all the names of couples buried together, family plots, recent deceased and distant deceased people. Families gathered around plots to place flowers. Some brought chairs to have a picnic with their loved ones. Many, many families would hear us piping and come and gather to listen, wiping tears from their eyes. I could feel their longing, their faces telling so many stories with eyes full of memories. I appreciated being able to move people through music. The cemetery offered a free lunch on Memorial Day and it was beautiful to recognize how many families face pain this holiday.

This Saturday, I am proud to say that I led my first docent tour of Edgewood Natural Preserve, a local county park renowned for its native wildflowers. You may not know that all my life I wanted to be a ranger, but my CF has limited that goal. Now I decided there are things I can do to reach this goal, without making it a career. So January through April I took a docent class to learn about local native plants, geology, and wildlife. I am passionate about this!  It gives me a solid grounding for not only who I am but also where I am- they call that ’sense of place’.

The visitors on Saturday were a group of “Brownies”- they were adoreable! I led about 4 girls and 3 adults. They asked questions and touched and smelled the plants. One girl was 7 years old and extremely knowledgeable. She even knew the word ‘nocturnal’, and the names of many plants! I enjoyed to tell stories about the land, to inspire a sense of wonder, to point out funny names and uses of plants. I don’t know latin names and don’t care to! Neither do the girl scouts, so my level of knowledge was fine. Andrew came along with me and said he learned alot!

Yesterday, Ana and I had a very successful book event in collaboration with the CF Foundation. The event was in Livermore at Zephyr Grill and Bar. Our friend and super woman Diana planned this event like a fiend. She was so organized, connected, and passionate. About 60 people attended. We spoke and did a reading in a cozy private room behind the main dining area of the restaurant. Many of our transplant friend were there as well as new and old CF community friends. We sold 27 books for the CFF.

The reason the title of this entry is ‘a day of synchronicity’ is that this event was indeed a symbol of random connections, making me think something higher was in charge.

First, we asked/begged my brother to come to this event. He hasn’t been to any of our book events, probably because he was embarrassed. But we told him this would be our last local event, we wouldn’t embarrass him, and he actually agreed to show up. Granted, he showed up at the end, when our speaking was done, but as he entered the restaurant, an old long lost high school friend who was eating at the restaurant recognized him, greeted him, and came along to our event with him! I think meeting Jeff was a way to make Ryuta comfortable. I remember Jeff as one of the most friendly and nicest guys in high school. We enjoyed to reconnect with a long lost friend, who is now teaching in Castro Valley.

Next, by chance, a woman named Jennifer was eating at the restaurant and saw a poster about us in the front of the restaurant. It turned out she was the mother of Kristi, Ana’s CF camper in 1991-1994. Sadly, Kristi died in 2001 at 25. She used to call Ana alot, and sadly got very sick very quickly and didn’t have a chance for a transplant.  We had reconnected with Kristi’s mom a few years ago when Jennifer’s friend worked with our friend Jessica from CF retreat, by chance, and mentioned CF, shared who they knew with CF, and viola! The connection was made. We had emailed Jennifer about this event, knowing she lived in the far east bay, but she said she didn’t know about it. Her family had toured Livermore Labs and came for an early meal at this restaurant- of all the places in Livermore! She shed some tears as we shared some memories of Kristi. We met Kristi’s brother, who was a toddler when we knew Kristi- and he’s now 18! It felt good to meet again.

 We also met mothers and fathers of friends long gone- Michelle and Karen, Charlie, and many parents of CF kids and adults still thriving. We met a friend, Kriss, with advanced CF who is kicking and screaming like we were once, to stay off the transpant list. We could talk like long lost friends. So many common journeys… And we met new friends and friends of friends. So many wonderful people to know in this world. As usual, we spent more time chatting than doing business, making my patient husband wait for me, and staying over past our welcome.

Our event hosted the California Transplant Donor Network, the Breathing Room, and CF Foundation, and we made our pitch for Heroes of Hope. It was a great symbol of collaboration among many talented agencies.

We enjoyed meal with Andrew, Trent and our brother and his fiance, celebrating togetherness and lots of happy family plans ahead. I am so happy to be alive!

Now I’m home packing and trying to make order in this house. We are having our windows replaced and interior painted. There is chaos. Rupie has some health problems so it is a bit stressful. Life is full. 

Anyway, excuse the excessive joy. It has been a great few weeks. I know that’s not the case for many. I wish it was so. But we all have vicissitudes in life. Everyday I think I must enjoy my health, my joys because it may not always be so.

I wish you all a full and happy June. If there is loneliness may you know you’re not alone, if there is sickness, my prayers are that it is temporary or you can find comfort in distraction, and I hope you are all loved.

Thanks for your attention and be well,

Isa

Dear friends,

My goodness, so many weeks have passed and I have failed to make time to write on this blog. Thank you for checking in with us to see what we are up to. Since Denver, Ana and I visited Santa Fe to give a privileged talk to Mountain West CF Consortium CF care providers. It felt wonderful to spend time with my dear friend Beth and colleagues in warm and sunny 7o degree New Mexico. We ate plenty of addictive green chile sauce and shopped with Beth. I have such immense esteem for these devoted voluntary soldiers in the CF struggle. The talk was very well received, as evident by tears and also selling out of books:).  After our talk, Ana and I hiked at 10,000 feet in the gorgeous Sangre de Cristo Mountains, until we were hiking in snow, reminiscent of the prior weekend.

 The following weekend I bagpiped at the San Francisco CF Foundation Great Strides along the Bay and by the fog-drenched Golden Gate Bridge. We sold one book in the rain but otherwise saw a large number of dear friends. The next day, I traveled to Chicago for a United Network of Organ Sharing Patient Affairs Committee Meeting. We learned about all the new organ donation policies and offered our perspectives as patients to the changes. For example, UNOS is considering changing the rules for kidney candidates based on ‘years of life left’, so if you are older you may have to wait longer and receive an older kidney. This is very controversial. The goal is to be fair, and it is all based on the limited supply of kidneys and the very high demand ( 2/3 of the organ transplant wait list consists of kidney candidates). While so much of the information is over my heard, I felt empowered and valuable to contribute to rules that could help future patients- the goal is to improve the access, equity and efficiency of organ donation in the USA. How humbling to learn what a complex national infrastructure is involved to save my life, Ana’s life, and so many thousands of other lives each year. This is a system that has the best intentions for constant quality improvement. God bless America. I highly recommend anyone who is interested to read the UNOS policy and make any public comments- they invite it! Please see www.unos.org.

After the meeting I got together with my two good CF friends, 21 year old Maggie and 45 year old Cynthia. We had large amounts of Greek food and chatted and laughed for 3 hours. I am so glad CF allows me to interactive with people of different ages from all over the country.

The next day, I rented a car and drove to Milwaukee.  I had arranged to combine my UNOS meeting with a CF education day in Milwaukee. I loved this free-spirited independent roaming. I am making up for my years of dependence as a sick person! I did not feel lonely, because I was so caught up in absorbing the moment (plus Andrew and I talked several times a day). Once again, I imagined ‘what if I lived here’? That was easy to do in the 65 degree spring weather! When I arrived, I went to a grocery store and bought some lunch, and then in grey skies I made it to Lake Front Park, overlooking Lake Michigan. I have never been so close to this vast lake, which in springtime was calm and inviting. It really did look like an ocean, and it amazed me that it was fresh water! I am sooo Californian… After lunch,  I went to the Milwaukee Art Museum and admired the modern and classic art. I rushed to a restaurant to meet the staff of the Univ. of Wisconsin Milwaukee CF team, including my friend Julie B. I loved meeting a group of 9 friendly, outgoing, fun and caring CF providers who were so welcoming. Their warmth seemed so familiar, like I was reuniting with long lost friends, yet I had never met them before. Across the nation, meeting these CF care teams is like coming home.

The next day, I pulled a “Stenzel” and overdid it. There is actually a ton to do in Milwaukee, so I didn’t eat breakfast and went to the Harley Davidson Museum (well, ok, I had a muffin in the cafe). I didn’t know Milwaukee is where Harley Davidson was founded and manufactured for many decades (til the 70’s). I have a serious fantasy of wanting to ride a Harley, so here I was like a kid in a candy store. They housed over 400 bikes from 1904, including Elvis’ bike and the bikes from “Easy Rider”. They showed exhibits on bike design, how the engines run, how Harleys were used by police departments and military, the history of the company and how the bike became associated with ‘bad boy’ image. I love the image it creates of hippy freedom, adventure and comraderie. Someday… and, yes, I also know they are called ‘donor cycles’.  I can keep dreaming, and put this on my goals list! After the museum, I wanted to make a tour of the Miller Brewing company so I skipped lunch and went on the 2pm tour of how they make Miller beer. There is an entire campus called ‘Miller Valley’ with the beer hall and caves from the mid-1800’s where Frederick Miller started this beer enterprise. After the tour, they gave us 3 tasters. I am not a beer drinker, but this beer was very fresh and ice cold, so the few sips I had were indeed enjoyable. But I had such an empty stomach, I had to be careful!

I rushed back to the hotel, stopped for a sandwich at 4pm and then, with exhaustion, prepared for my CF education day talk. Julie B. gave me a tour of the beautiful Children’s Hospital Milwaukee facilities. This was a huge high rise hospital amidst a massive complex of medical buildings. I wore a mask through the halls and heard this region was endemic in swine flu- woops. The CF team ladies were extremely nurturing, helping me with my books, offering me food and even asking if I took my enzymes:). Then I gave my talk to about 100 people. Sadly, but appreciatively, all the CF patients were sent to a separate auditorium and my talk was videoconferenced into their room; so I couldn’t meet many CF adults. The talk was well-received and I signed books provided generously from Solvay Pharmaceuticals. I went back to my hotel high and happy, because I felt very validated, especially by the TLC and kind hospitality from this CF care team. I am the luckiest person with CF in the world, to have so many rich unions just because of this disease.

The next morning I drove to take a photo in front of the “Fonz” statue along the river in downtown Milwaukee, in honor of my husband’s love for Happy Days. I saw a row of German Hofbrau houses and had a late breakfast of sauerkraut, bratwurst, spatzle and a lager! I drove away from Milwaukee with a great fondness, reminiscing about my German travels.

I stopped in Kenosha, WI, to buy large amounts of cheese and cheesy goods from a tourist trap, the “Mar’s Cheese Castle” which I saw on the Food Network. I then drove to the lake shore and walked along Lake Michigan again. I sat at the end of a pier, dangling my legs over the clear water, eating a grilled cheese sandwich and looking out into endless vastness. It was one of those moments when life stands still and you wonder, wow, this can’t get better than this. One day when things are very difficult in my life, I’ll reflect back on this moment and be glad.

I felt grateful to have solitude on this trip, though Ana’s presence was missed. I have always done things with others, that sometimes I need to prove that I am fully capable of independent activities.

 I returned home only to drive to my parent’s mountain house for Mother’s Day. We hiked under the massive ancient Giant Sequioas in Sequioa National Forest. These trees are 2000 or more years old! They are a reminder of how small our lives are. Rupie (my bassett beagle) enjoyed to romp around the tall spring grass. My family enjoyed the cheese souvenirs for several meals. The hills were green with wildflowers sprinkled for miles on end. A truly heavenly scenery.

Since returning from Milwaukee, I’ve tried to catch up with many tasks I’ve dropped. I am fully engaged in life as a healthy functional person, and I find myself complaining about too many opportunities and demands. Ya! Isn’t that ironic? In moments of insight I remind myself that nothing really matters and I can lose all of this busy-ness and planning in a short time, so I ought to not take things too seriously. I think it’s hard to be a healthy person. Without a ‘perspective-check’, I can get really caught up in what I should do, need to do, have to do, when all of this activity is really an attempt to find meaning in our existence.

Today, I have to share, has been one of the best days since my transplant- and you know I’ve had many! Thanks to the generosity of Ambry Genetics (they make a CF gene test) and Mauli Ola Foundation (means ‘breath of life’ in Hawaiian), a group of people with CF were invited to surf in Santa Cruz! As you may know, we grew up near Santa Monica, and my brother surfed since he was a young teen. Ana and I always dismissed the thought of surfing, so after transplant, it has been a goal of mine to try surfing. I thought I never could surf with CF lungs, because of low confidence due to breathing and energy limitations. Well, today, I met my friends Tom, Rich, Emily and Kasey, among others, at Cowell Beach near the Wharf, for a few hours of Gidget! It was a gorgeous day, with temperatures in the Bay Area soaring to 90 in many parts. The sand was super hot, the sun beaming, the water refreshing. All of us with CF donned skin-tight wetsuits, showing off our CF bellies but grinning ear to ear with excitement. The beach was extremely crowded with visitors and surfers. Our beach was a site of many surf schools. Today, there were several tents set up for people with ’special needs’. We saw blind people coming to surf on a shared board with an instructor. I saw a child with one leg surfing. I saw disabled children in sand-friendly/water-friendly wheelchairs. I saw burn patients surfing. All of a sudden CF seemed so mild and manageable compared to these other people, and I felt oddly spoiled with this indulgent gift of a free surf lesson just because of CF. I know CF is life-limiting, but we have all our senses and are mobile for the most part, and I suddenly didn’t feel deserving.

Each person with CF had an individual instructor from Richard Schmidt’s Surfing School. Mine was a guy named Barney, who was my age but still called my sister and I ‘girls’. He spoke with funny jargon like ‘dude’, ‘you’re dominating,’ or ‘cut the wave, man!’ and I had to smile, remembering my brother speak when he was a teenager. First, we paddled out to where the waves were breaking. After one minute, my arms were burning. Damn prednisone! But I looked over and saw Rich, who has half my lung capacity, doing the same, so I dregged on. I manuevered the board and waited for the waves. When the wave approaches, I had to paddle like crazy and then feel the push of the wave (plus Barney’s supplemental turbo push), and then in one swoop stand up. Easy, right?

Surfing is primarily trial and error.  I have terrible balance from Prograf but after Barney gave me the humungous 10 foot board (1.5 ft wide), I managed to stand for several seconds before falling. This was a great accomplishment! The waves were pathetically tiny- 1 or 2 feet only. I would often try to stand, tip the board, and crash in the water. Or I’d start to stand and then see someone directly in my way, and crash. Or I’d pause and get up on my knees and loose balance and tip over. Once my hand slipped when I tried to stand and I just fell right in; surfing is truly a humbling experience. The CFers were coughing in the distance and hopefully salt water will kill the germs. I did take one big gulp of water, though… hopefully my immune system will be ok. The water wasn’t too deep so I could walk on the sandy floor after I crashed in the water. My arms, chest and neck got a great workout!   I was so proud that by the end of the 1.5 hours, I could stand enough to turn the board right and ride along the wave! This is true exhiliration!

I felt so fully alive today. To fulfill a goal, that randomly comes one’s way, especially a goal involving healthy activity, is truly satisfying. All the surf instructors and the Ambry/Maoli Ola volunteers were so incredibly kind. I definitely want to do this again! If you have CF and are interested in other events in different locations, check out the www.mauliola.org website.

After surfing, we went out to lunch with our CF friends. The greatest celebration today was spending time with Emily, Ambry’s patient representative, who happens to be our former CF camper from Southern California CF camp way back from 1992- 1996. She is now 26, looks gorgeous, and surfs regularly as therapy. I never would have imagined that 13 years after the last So Cal CF camp, we’d be in wetsuits together, alive and well, in sunny Santa Cruz, SURFING! Fate presents amazing surprises.

 Well, it’s late and I better get to bed. I am sure I won’t be able to lift my arms tomorrow:). Thank you for reading this entry. I wish you warm sun and healthy activity this May.

Blessings, Isa

Dear loyal blog readers,

As life reaches stability since Ana’s second transplant, this blog is ending up to be a travel journal documenting our continuing book touring. Thank God, that’s all we have to write about!

Well, we did it again. Ana and I just returned from another trip to give a talk about our book, in Denver, Colorado. We left after Ana’s work on Wednesday, arrived late and rented a… God-forgive… SUV! It was the same cost as an economy car. With the weather report, we knew we needed back up for our determined goal to go to Rocky Mountain National Park.

On Thursday, amidst cold rain, we met up with two good friends from the Transplant Games, both CF double lungers, both medal winners. We tested our CF appetites at a local burger joint. I think I consumed a 4000 calorie buffalo burger. We laughed and chatted about our medical histories, our goals, our day to day life. J.W. is buying a home, thinking about marriage and writing a book; M.P. is considering work and training again after a tough year last year. There’s also dating.  Oh, how transplants allow us to keep on living, ordinary, good stuff, but just plain ol’ living. Like how Ana and I then went to a mall afterwards and wandered for 2 hours, looking for the right bargain outfits, to no avail.

We arrived at the monumental Children’s Hospital of Denver, which looks like a combo between a Vegas casino or a Dubai four-star hotel. This massive structure stood out from the freeway and ended up being 9 stories of exclusively pediatric care. This makes every colorful, clean, welcoming children’s hospital we’ve been to look like a sand castle! We nervously prepared for our talk, not sure what kind of crowd we’d draw on this cloudy, rainy, cold evening. Fortunately, JW and MP attended, so at least we knew two would be there! Gradually, a crowd of 50-60 developed outside the auditorium, enjoying yummy BJ’s pizza dinner provided by a drug rep sponsor (oh, the benefits of drug company money!).

 At 7pm, Ana and I gave our usual one hour talk. The amazing Dr. Frank Accurso, extremely famous in the CF community, introduced us, and we felt very small but honored. This time we didn’t bicker beforehand, we felt grounded in what we wanted to say with anecdotes and humor. We transitioned smoothly and the audience reacted- with nods, laughter and tears. Tears make us feel successful, because we let the audience express the raw emotion of CF that comes out by listening to other CF stories. It is a powerful feeling. The only sadness was the lack of CF patients present due to cross infection rules. I hate this part of this disease. After the talk, we received kind positive comments and in exchange gave signed books for each family, thanks to a grant we secured. We spread out the evening, and MP, JW, Ana, me, and another staffer with CF hung out in the lobby, not wanting to say goodbye. We were all 30-something, happy, excited, ambitious, diabetic, with many stories to share. The bond was immediate and made me feel so grateful to have CF.

Ana and I went to Village Inn for a second dinner, feeling hungry after only one piece of pizza prior to our talk. Our waitress had missing teeth and her scratchy voice screamed ’smoker’. Nonetheless, we gobbled up our omelette and pancakes, head back to our cheap hotel in the rain and went to bed.

On Friday, we woke up to a blanket of white outside. We grabbed two extra bagels from the low end breakfast buffet and made tuna sandwiches in our room, before driving the tank -like car in the snow to the Rockies. We were so excited but cautiously drove 40mph on the I-25 to Longmont, then head northwest to the park. The snow was coming down fast and furiously. Deep snow started to blanket the shoulders and eventually we were in a winter wonderland. I turned the SUV knob to 4WD and felt confidence- oh, the right car at the right time, no matter how much gas it uses…. As we drove towards the entrance in good time, we saw the sign to “Rocky Mountain National Park”. We squealed with delight at a chance to relive a Stenzel tradition of taking a photo in front of the sign. I pulled the Suburban to the side of the road, and then… shit. We went a little too deep in the snow and the wheels spun. We got stuck. Damn! California drivers! Nonetheless, we ran out to the sign, took pictures in the flurry, looking happy and eager. Then we went back to the car, donned our gloves and crawled under the car and began digging furiously with our hands to make a path for the car. Ana worked on the right side; I worked on the left, watching for cars, of which there were none, because what idiots would come to the National Park in a blizzard? Well, as a team, we worked efficiently, and in no time, I plopped into the driver’s seat, floored the gas, and pulled the tank out of the deep snow. As we like to say, “With God, and a twin, all things are possible.”

We soon learned the park was closed because of worsening snow conditions. Bummer! Instead, I got my national park passport stamped at the Visitor’s Center, then we rented snowshoes, checked into a Comfort Inn in Estes Park, piled on every layer of warmth possible, and then snowshoed around the adjacent Estes Park. After about 100 feet, we decided it was easier to walk the snowy path, so that’s what we did, for the next 3 hours. We walked about 4 miles around the lake, with minor detours as the snow blocked the path. It was unimaginable now, here in California where today was 80 degrees, but in Estes Park it was 30 degrees with a constant flow of beautiful white snowflakes. Parts of the lake were frozen over, with ambitious Canadian geese flying around the water. We saw one sturdy fisherman standing, waist-deep, near the shore, casting his rod with a hypnotic rhythm. My heart swelled; I admire the solitary man on a mission. 

We returned to the warm hotel with red cheeks and tired legs, refreshed by the cold.   I dared get back into the SUV and drive on worsened roads to grab dinner at one of the few restaurants open. The downtown Estes Park was abandoned, except for one jewelry store. Ana and I had to shop; it’s in our genes; so we spent 1 hour in there as it darkened outside. We got cheap jewelry, probably made in China, that will hopefully make us look our age or older. We wanted to go to a bar down the road playing live bluegrass, but after a little drive in the dark, totally white, slippery roads, I gave up and head back to the hotel.

On Saturday, Ana and I woke up again, to lighter but steady snow. We donned our winter gear again, made tuna sandwiches, and checked out of the hotel. If the park was closed again, we’d head south to Boulder. But luckily, the roads had been plowed, and we entered the park! We head down the road, passing a totally white, flat meadow. Dad and I had walked across this meadow, Moraine Park, in September ‘08, and I remembered tall grass, sporadic wildflowers, a flowing creek, and fly fishermen all over. Now, the silent meadow was brought to life only by the herds of elk huddled around pine trees and willow bushes.  We parked the car at a Park and Ride, where the road was no longer plowed. There were about 4 cars and out came male after male. We all donned our snowshoes. At 11AM, Ana and I were the second ones on the trail. We followed two guys who seemed to know where they were going. The trail was 1.5 miles to Bierstadt Lake, and soon we found it was straight uphill. Luckily the guys ahead of us broke the trail, but it was breathlessly brutal. The elevation at the parking lot was 8600, and I swear we went higher and higher. I peeled one layer after another, and soon was sweating, as Andrew would say, ’like a whore in church.’ As we climbed straight uphill, we saw orange tags on the trees, marking the trail. Eventually, we lost sight of those tags, but followed the path of the guys ahead of us.  After about 1 1/2 hours, the trail looped and came back to the old tracks. It seemed our trusty guys ahead didn’t know where they were going! We hemmed and hawed, debated with the fellows about where they’d go, and then decided to hike back down to the last orange tag and look for the next one more carefully. The two guys parted on their own, and Ana and I enjoyed a respite of downhill. The trouble came when we found the orange tag, spotted a subtle one on a tree in the distance, and then had to break our own trail through the 36 inches of snow that had fallen the night before. Each time we stepped with the snowshoe, we sank about 2 feet, and the snow came up to our thighs. Walking in this soft snow was like lunges, thigh-master, and stadium stairs, all with the breathlessness of CF lung disease. It was soooo hard! We stepped five or six paces at a time, rested to breathe, then continued. I wondered what our 02 saturations were. There were plenty of ‘holy shits’ and ‘oh my god’s’ along the way. Soon our panting was the only sound in the forest except for our spatters on the snow. The trail lead uphill, over a ridge. The snow was melting quickly, and every now and then a shower of snow from the trees above would fall on us. The warmer it got, the deeper the snow. Meanwhile, a light snow continued to fall, on and off. We could not conversate, just march. Finally, I broke the silence.

 ”Three words.” Pant. Pant.

“Leg cramp tonight.”

Ana responded, “Two words.” Breath. Breath.

“Ass kicker.”

We laughed. I loved Ana’s feistiness. That’s what got her from her breathlessness from end-stage rejection to her breathlessness from snowshoeing in the Rockies.

But with Ana, we were ‘mutch’ or mutual. there was no whining, no dissonance, no awkwardness, no disagreement about what to do next, just complete and total compatibility. There was unspoken agreement that we had to keep going. Of course, Ana compared that I was stronger. Yeah, maybe, but I wondered what other double-double lung transplantee could do this.

Eventually our breaking trail led to a broken trail, so we think we met up with the trail of the guys from before.  It was indeed easier to walk in someone else’s trail, except this trail just kept going and going and going, uphill. It was tortuous. “How much longer?” went over and over in my head. Ana said she was losing it. This sucked. It neared misery. But what should we do? Give up? Where’s that damn lake anyway? How long is 1.5 miles anyway? I swore it was just around the corner. But with pouring sweat for 3 hours, no breaks for food, we were depleted. Instead of “I can’t”, we bargained, “Let’s just take a break.” I patted a flat area of snow with my snowshoes, laid down my gortex rainjacket, and sat down with an “Ahhhhh.” I was hoping someone would come down the trail to tell us how much further… but noone did.  I gobbled up the best tasting tuna sandwich and granola bar I ever tasted as I started to shiver. Within ten minutes, we had to get up and keep moving. Sweat and snow don’t go well together.

We made a deal to go 15 more minutes. I swore the lake was around the corner, but as usual, the trail just kept going and going, with a steady incline. If only we had a GPS… oh, but that’s so unnatural. Besides, the thrill is the process not the product. Or do you say the thrill is the journey and not the destination… You know what I mean, but the thrill had diminished 3 hours ago. Finally, finally, finally, I say, (well, within 15 minutes), we heard voices in the distance and saw a clearing in the forest. We saw a group of about ten, including the two guys we had followed earlier. They greeted us with ‘You made it’! and gave us a hard time for not trusting them. We got even by asking them to take our photos.  The vast frozen Bierstadt Lake was peaceful and still. The white table top seemed to welcome risk-taking snowshoers over the illusion of a meadow. The closer we approached to the flat of the lake, the deeper the snow. Instead, we admired from a distance. The snow had stopped, the mist was lifting, and for the first time since we arrived at Rocky Mountain National Park, we saw a mountain sillouette in the distance. Hallelujah.

We eagerly marched back down the mountain, and arrived at the car by 4pm. A five hour snowshoe expedition! (Watch, we come back in the summer and this hike will take less than an hour). God seems to always be on our side, and with the warming weather the roads had been opened and plowed. We drove to Bear Lake, 8900 feet, where Dad and I had started our backcountry hiking last September. Now, the signs were deep in snow and nothing looked familiar. We left the snowshoes in the car, and walked in thigh-deep snow towards the vicinity of the lake. Again, we saw a meadow of white flatness- completely lifeless compared to the summer, when it was sprawling with tourists. We climbed back into the monster truck and head to Sprague Lake for more site-seeing. I was eager to snowshoe again but my muscles were not, nor was Ana. We climbed over a fence to walk toward Sprague Lake. This manicured, handicapped accessible trail was totally hidden in deep snow. We snapped photos and head back to town. With soaking cold feet, we barely stopped to shop, except for the Rocky Mountain Chocolate Factory. We knew it was a tourist trap but “we have to, it’s the original…” Yeah, right. We bought our obligatory caramel apple, a vacation treat, and shopped briefly. I could take the numb toes no longer and begged to take out pizza. We rushed to our hotel, checked in again, and tore off our wet socks as soon as we entered our room. We gobbled up hot, melted pizza, and lay lifeless on the beds by 9pm. Then we got drawn in by the last episode of “Little House on the Prairie”, a real edge-of-the-seat drama. There was no way- NO WAY- our men would have tolerated a day like today. Especially the ending.

Little House kept us up til 11am, whereby we were too tired to sleep. We tossed and turned, giggling and loving each other until we drifted asleep as much as our achiness would allow.

On Sunday morning, we awoke to a sliver of sunshine coming through the shades. It was 6:45am and we jumped out of bed, wobbled, and got ready to hit the snow. By 8:35AM, we arrived at the highest point of Trail Ridge Road, which crosses the park at its highest point, 12,000 feet (Dad and I were there last summer), but this time it was closed off around 9000 feet. We broke trail again in the thick snow. One leg after another, we walked higher and higher up the road. After 15 minutes, my mind repeated, “How much longer? How much longer?” as we both panted heavily. We’d take turns breaking the trail, because it was such hard work. Thank God for having a trail assistant! Again, the layers came off, the sweat dripped into the eyes. But this time, we were afforded stunning views of perfectly white mountaintops, endless white and green trees in the distance against a backdrop of bright blue sky. We saw the meadows below that looked like clean sheets on a bed, with only a black snake squirming through it- the road. The sun on the snow was blinding, but the snow glistened like sparkly diamonds. What eye candy for Californians!

After 45 minutes, we turned back regretfully, but our muscles were relieved. We rushed back to return the snowshoes, stop at the visitor center again for some souvenirs and toilet, and then made one more 20 minute stop at the shops where Ana got some (dry) socks. At 11:45 AM, I drove out of a perfect park on finally a perfect day, wishing it didn’t have to end. 

The anticipated ski traffic was no where to be found. I stopped leisurely to take photos and to buy a homemade cherry pie at a tourist trap.  In less than 2 hours we were close to Denver. Since we couldn’t imagine waiting aimlessly at the airport for our 5pm flight, we took a detour and drove to Boulder. We went to Chautauqua Park and spent only 15 minutes walking up to the Flatirons, an interesting rock formation in the mountains. The hills were covered in thin snow, but it was warm and people walked around in short sleeves. What a brief cold spell- welcome to Spring. Again, I remembered this location fondly as I had been here last summer with a good friend.

We rushed to the airport, filled the enormous tank of this gas-guzzler ($50 for 3/4 tank!), and met up with our brother, who had come to Colorado to ski at Vail this weekend.   I carried on my pie, and made it home to the loving arms of my husband, in time to watch his college friend Victor at 8pm on “The Amazing Race”. From snowshoeing at 9500 feet to cuddling on the couch, with Rupie and Andrew at my side, I ask myself again, why am I so lucky and blessed?

Anyway, this was a very long post. Thank you for your patience. Brevity is my weakness, but with adventures in nature comes a keen awareness to every detail. I aim to pay this close attention to my every day. Now, I’m home resting until Wednesday. I leave on Thursday to Santa Fe for more hiking… but no more snowshoeing, please!

I hope you all are healthy, and dreaming of snow during this West-coast heat wave. Please save water; despite the snow even the Rockies is in a drought. I wish I could share some of my good life with you. Well, only in words for now. Thanks for your friendship.

Keep climbing YOUR mountains, in any season.

Love, Isa

Dear Friends,

Thanks to one friend in particular, who asked, “Are you no longer writing your blog!?!”, I’m writing again after a good hiatus. Ana is simply too busy to write, but luckily she is healthy and engaged(ask her how literally) in a very rich, connected, happy life. I have more time to muse about the last few weeks. I’ve been busy with normal day to day life: loads of laundry, home improvement, walking the dog, emailing, bagpiping, reading, exercising, keeping in touch with friends, finally spending time with Andrew. The ordinary is precious and I wouldn’t change a thing! But the extraordinary part of life includes ongoing book-related connections with people all over the world touched by CF and transplant. All over the country people waiting for transplants have emailed us, sharing their narratives and reaching out for help. It is amazing how much life repeats. If CF is such a rare disease, think of the parallel lives in the cancer, AIDS, or heart disease communities. So much suffering, but by connecting, it need not be in silence.

Ana and I have been discovered by a group of passionate Japanese strangers-turned-friends, who are on a mission to plan a book tour extraordinaire for Ana and me in October, when our Japanese translation comes out. They are eager to have shameless, happy, active and proud transplant recipients share their stories and mobilize the public about organ donation in Japan. I am absolutely blown away by the energy offered to us, with such generosity and grace. I feel like the luckiest person in the world. Gosh, if only my Japanese didn’t sound like a first grader.

In March, I gave two successful talks at Seattle Children’s Hospital, and spent a few days with my two cousins and their girls. It was my cousins’ mutual birthdays (they are born two years apart on the same day), and it was so special to be all together, with Ana, to share this celebration for the first time in our lives. One cousin is living in India and is visiting just for a month. As they blew out their candles, I noticed some grey hairs and a few lines around our eyes as we laughed. The Stenzel women are all getting old together… Even more fun included going to my cousins’ kids preschools and playing bagpipe on St. Patrick’s Day. Ana warned me about going into a germ den, but I chose to take my precautions and go anyway. With a crowd of 5 year olds gathered around me on the floor, I talked a bit about the history of bagpipes (I’m such the expert…) and then the kids each got a green ribbon. We went outside and I taught the 5 year olds to march with arms swinging high, and they marched with me playing around the school. The next day I returned with a teddy transplant bear and I explained why bagpiping was so special for me. I found it challenging to talk about organ donation (the death part) with five year olds, but the explanation was simple enough and death means little at this age… wish it could stay so! Then with a few eager volunteers, we gave the teddy bear a transplant. We put a mask on him (and on everyone helping- how I could feel safe), we put a fake IV in (I used my water bottle), and unzipped his chest, replacing the dirty felt lungs with pink felt lungs.  Then I gave away Donate Life freebies. That was my most enjoyable transplant public speaking opportunity! Whether they got it or not, I planted the seeds. The kids were so innocent and asked so many questions openly. Even if I risked my health a small bit, I felt like I was truly alive in the presence of children.

I spent a few more days visiting Seattle with my two closest friends from high school. We went to Whidbey Island and did what girls do- we shopped, ate cheese, chocolate and high-end food, talked endlessly, walked not enough, and drank wine, bickered, laughed and cried and gabbed til 5am. We opened up our hearts and souls with nonjudgmentalism, acceptance, listening and nurturing. We gave and asked for advice. And, yes, we talked about men…everything. It is such a gift to get older with our childhood friends! In one store we met a group of ladies who were celebrating the 20th year of getting together as friends; Ana and I are proud to have shared 5 years of reunions with Nancy and Sally… and we aim for many more. These are the gifts that donor families have no idea they are giving… a continuation of love that extends beyond the recipients’ survival and family.

Last week, Ana and I spoke at Google for Authors@Google, thanks to a friend named Aly who works there and collaborated with CF Foundation. We gave a well-received talk to an intimate crowd. It will be on youtube soon. We had a fabulous buffet (free) lunch on campus. If I worked there, I’d gain many, many pounds!

On Saturday, I went to the California Transplant Donor Network Annual Donor Ceremony with my bagpiping band. We played two tunes in the processional. I was very nervous, but it was such a tremendous privilege of me to play in front of 1200 donor families. I attended this event in 2004, two months after my transplant, and saw another band perform here. I was so inspired and mesmerized by the bagpipes, I called the CTDN organizer and asked for the contact. Through that connection, I found a teacher and then joined the San Francisco Stewart Tartan Pipes and Drums! Thus the dream began. As usual, I was deeply touched by the large number of Hispanic donor families. There were only 5 people of Asian descent in the 1200 donor family members. How sad is that!

Ana has been busy working on a project for lung transplant recipients. She organized a big meeting and this weekend we hosted two of the visiting recipients at her house, who happened to have CF. Melissa is 11 years post-tx, and Chris is 3 years post-tx. We are all in our mid-30’s. We had a great feast Saturday night, and the four of us CFers competed on who could eat the most. I think we ate for 8! On Sunday, we all went to the redwoods and took a nice hike through the forest. It was warm and the ground was fresh with green carpet. New blossoms were coming out, and all of us are so ecstatic, we noticed everything.  We talked about the amazement of being alive, how transplantation changes everything, our goals and dreams, our eagerness to live hard and try everything… when these friends talked I felt like I was talking!

Our tour took us to the town of Pescadero, where we bought the Stenzel favorite, artichoke bread, and drove down to the beach. We climbed down some pretty cliffs to sit on the sand and tear apart the bread, savoring each bite. We shared enzymes and hand gel, laughing like this was just like CF camp. Our mid-continent friends waded in the ice-cold ocean and got excited over the seals basking in the sun on the islands nearby.  We absorbed the sun, the salt, the mussels, the clear and foamy water, the anemones, the glorious life all around us. One friend nearly died in ICU last year while Ana and I competed in the Transplant Games, missing her as our greatest competitor.  As we screamed together on the beach with our toes immersed in the ice water, she reminded me that miracles do happen, that positivity can literally keep a person alive. The four of us, for one poetic day, stopped time and relished a moment we wanted never to end.

As I reflect on the last few months, I have been trying to adjust to a calmer life than the last year. I think I developed an addiction to email because of the constant unexpected, exciting email ‘hits’ that would offer the next event, talk, trip, or opportunity. I got caught up in the excitement of being so public and I’m not sure why. This blog is public and I am slowly stepping away from that life. I think the validation for overcoming the challenges of CF has been gratifying to the ego. But I don’t do it for ego. I like to be needed and wanted, and I love to connect to families who are seeking some hope, some solace from their fears of the future with CF. Today, for example, I got an email from a stranger with CF who had a dry run for transplant and was feeling pretty depressed and sick following anesthesia for nothing. I was entranced by his blog and found myself getting sucked into someone else’s crisis. In an email response, it helped to offer a tiny bit of solace through openness and sharing of our mutual stories. But I also feel like I’m doing what I love- social work or counseling- because I have the time. I think it’s time for me to get a real job.

Anyway, this blog entry ended up to be pretty long. I have no wise words to share, just a pleasant rehashing of a good, content life. I know many people who are pretty miserable these days and my heart goes out to them. I hope by reading this you’ve been distracted briefly. That’s all I can offer to you besides my prayers.

 May you be blessed with routine life, good friends, sunshine, warmth, and nature. Thank you for your loyalty to our blog.

Love, Isa

Dear Friends,
I thank you for reading this post again. I’ve been waiting for Ana to write something but she is simply too busy with her life, so here I am again. Ana is busy working 4 days a week, working part-time for a drug company, keeping up with a million book-related emails, taking care of her house, exercising and spending time with Trent. I admire all she does, because the book related emails are a full time job for me!

My winter hibernation is slowing coming to an end as I fill my calendar with more commitments in the next few months. Right now I’m ambitiously planning a Japanese book tour in October. I have some wonderful supporters who are trying to organize speaking opportunities. I will be glad to go to Japan again but this time with a mission- to explore Japanese views on organ donation, share American views, and find common ground. You may be aware that Japan does virtually no transplants despite having the technology and money to do it. The general public believes living with a dead person’s organs is as taboo as an American woman having an abortion. Generally, this is how I understand it: most Japanese don’t believe in brain death; they believe that a person dies when the heart stops, so essentially a recipient is killing a person if they turn off the machines of an American-defined brain dead person for the organs. They feel organ donation is against “God’s will” (though I thought most Japanese don’t believe in God). Going to share our book and speak cannot change deep-seated values and judgments in this very different culture. I expect any kind of reaction, and certainly must have reasonable expectations that change doesn’t happen quickly.

Anyway, that was a digression. I have been very busy the last few weeks. I haven’t exercised much but I am spending my time working on several projects. I have a few job prospects so please keep your fingers crossed for me. I am planning a few more book-related events and have updated our website (www.stenzeltwins.com). Ana and I are trying to pace ourselves and only travel twice a month. We need to learn to say no or else we’ll just get too tapped. But we did say yes to some opportunities that couldn’t be passed up- we are excited to speak locally for Google, the US Women’s EXPO, and for a CFF fundraiser in Livermore. Also, I just received copies of “Chicken Soup for the Twin Soul”, where I submited an entry that was accepted for publication. Those things take time and add to some excitement in life. There is so much going on. We have an addiction to email because we never know when there’ll be something exciting around the corner.

Last Friday the 6th, I went to a Stanford Alumni Association workshop for women who want to find balance. It turned out to be a day focused on career networking and entrepreneurialism in women. It was indeed a challenge to my self-esteem. Most women were older- in their fifties, and everyone I talked to was in the corporate world- MBA-types, executives, management consultants, lawyers. I was clearly out of place (as a social worker) and I was completely out of my comfort zone. But it was a good place to be, just for me to evaluate myself. The two people I ended up talking to ended saying, “Oh, I’m getting over a cold,” and of course I freaked out and recoiled into my past shy anti-social insecure self. I went to this event hoping to hear some insight about how women find work that balances family (or in my case health), time, and pleasure. This event was more about networking and business tips like getting venture capital for new ideas. I didn’t like how the advice given was based on connecting to people in order for them to give something to you in return. As a social worker, it is more in my nature to connect for the sake of connecting, and that expecting in return is self-serving and phony. Maybe I’m really naive and unrealistic. I met a few people my age, who ended up talking about how trustworthy their husbands are to look after the kids. Not my world. The motivational talks were about climbing the corporate ladder, and what defines success as a Stanford graduate (eyes roll). Fifteen years ago at Stanford, this kind of indoctrination would have left me feeling resentful, envious and angry at these normal people for the lives they have and I don’t. I have to admit part of me admired and envied that they could be so ambitious without any fear of health problems… at least not for 20 years or more. But now, at 37, I look at these women with envy mixed with acceptance and even some pity. Not that I really know, but it seems to me that being in the corporate world grasping for “success” (as our modern male-dominated corporate society defines it) is extremely addictive, exhausting, stressful and disconnecting from self and others. That’s the world they choose, for their own happiness. I admired the independence and responsibility of these women. I admired how they probably earned a great deal of money, all by themselves. They were probably respected by men as well as women. I wished I could be like that.

I decided women in their 50’s are in the primes of their lives. They look beautiful with their gray hair and wrinkles, exuding a sense of confidence, wisdom and credibility. They speak with authority and groundedness. I want to be like that. I even thought, “I wanna die my hair gray”, but I guess Loreal doesn’t make that color. So, in the midst of a CEO’s lecture my mind wandered as waves of insecurity would come and go, and then, right then and there, an epiphany came to me: God chose me. God chose me to have an unconventional life. He picked me, of all these smart and ambitious women in this room, to learn lessons early about dependency, love, essence when I have had no health, job, money, 401k, professional network. He chose me to have CF and to forgo all the other external cares of this world, except trying to breathe and be surrounded by people I love. I was chosen to write and share this story, to pass on some other message to others.

The next day, Ana and I attended the Women on Writing (WOW) conference at Skyline College. I’ve attended WOW many times since 2002 or so, when I wanted to start writing my book. I met women then and joined a writing group and memoir class because of this great event. This time, we came back with the product- our book! Ana and I had a booth and tried to sell our book, but we didn’t sell any ($30 is a lot). Lots of women were interested and chatted with us in compassionate ways. Again, most women in the group were in their 50’s to 60’s, and interested in writing memoirs. Some of them asked, “Aren’t you a little young to write a memoir?” We get that a lot. As usual most people addressed us by, “Oh, did you girls write this?” I’m too old to be a ‘girl’. I was annoyed that being younger comes with disadvantages-I want to be respected, convincing, wise. But as published authors, I have to admit it was fulfilling to offer advice to women who were just getting started. I was also inspired by a workshop leader who is doing what I want to do: teach therapeutic writing.

So, these two days as a witness to older womens’ lives made me yearn and reflect. I guess it doesn’t make sense to go green with envy. I tell myself I can’t go green. It’s unfair to myself and to others. I can just hope and pray I’ll be old and wise someday. I can walk one step at a time, learning and growing, going in and out of my comfort zone, and hopefully, God-willing, someday I’ll be like those mature women.

I’m just grateful to already be halfway there. On Tuesday, Andrew and I celebrated fifteen years since we started to go out. We went through some old albums and admired how young we looked! My skin was great then… so was his hair! We had many wonderful times together. Having CF wasn’t all that bad at all. Life now is just easier.

Then, on Thursday, I met my old CF friend Anna. I lived at her house one summer when I was 20 and she was 9, and we’d walk to her local mini-mall for ice cream. That was seventeen years ago! Now, she’s 26 and I’m 37, we are both married, both college and grad-school graduates, I am transplanted and she is avoiding the transplant list and hanging in there. We can laugh and joke like we’re immature kids and we can have real, intimate life and death conversations. My maternal feelings towards Anna have transformed long ago into sisterly love, where I’m okay if she’s okay. This afternoon made me realize how lucky I am to grow older with my CF friends. We’ve lost so many, it makes me want to hold on tighter to those still here.

I am going to Seattle next week for two talks and to spend time with my cousins and my dearest high school girlfriends. I’ll also play bagpipes on St Patty’s Day at my cousin’s kids’ preschool. It is times like these when I am glad to be unemployed! I am grateful to have the opportunity to combine speaking opportunities with pleasure.

Thank you for listening to my rambles. Happy St. Patricks Day, and incidentally, I hope you don’t go green. Not to be self-centered, but I sometimes wonder if anyone who reads this blog has gone green with envy, because of my fabulous life. If this is you, it is a natural instinct to envy, especially if you’re in the throws of CF or illness. I hope you can reflect on what helps you and what doesn’t. We are all evolving in our own self-awareness.

I wish you all a wonderful week and a beautiful March.

Love and hugs, Isa

Dear Friends,
Once again I appreciate your comments and compatibility. I just wanted to give an update.

I’ve been thinking a lot about guilt. Why we have it.

I’ve been living for the last 10 days at Ana’s home, until Tuesday. Andrew had a terrible flu, with high fever and cough, as well as a sore throat preventing him from talking. The minute his symptoms started I said, “You’re sick? Okay, I’m outta here.” What kind of wife does that? Isn’t that the point of marriage? So that both spouses can help each other, in sickness and in health? I live an extremey selfish life, because it’s always all about me… and my health! Of course we can rationalize and say our separation is an investment in the future. It is a sad situation that his flu can mean the end of my life. It is what it is. We have both been feeling a lot of guilt, me not being there for him, and him worrying he already spread something to me. My transplanted friends, I believe, feel some of the guilt I do- did any of us go to support group harboring a virus, because the following week nearly all of us went into the hospital, like dominos, with RSV and parainfluenza?

I’ve been reading Dacher Kiltner’s book “Born to be Good,” which is about why humans have emotions like compassion, awe, truth, empathy. He believes we are all evolutionarily wired to feel others’ pain (when we are raised in an emotionally healthy way), and when we do, we feel helpless. Helplessness leads to guilt. Some people have stronger empathy than others. Some people, like Catholics and Japanese, are bread to feel guilty.

So how have I dealt with my guilt? I brought Andrew chicken soup and wore a mask when I entered the house. I walked the dog to prevent her from harrassing Andrew. I ran errands. I called the doctor for him. I came to a realization: the bottom line is that we cannot be responsible for someone else’s suffering. Andrew is going to be sick, even if he is a healthy person, because healthy people get sick too, and he is going to feel miserable and weak and like he’s going to die, and there’s not a thing I can do about it. Ultimately we are all very much alone in our physical struggles. So he has to go through this himself as I have to go through my illness by myself. We have to find ways to sooth ourselves and take care of ourselves. The help we get from others- is just that, help. The rest of coping with illness is finding out how to cope by ourselves. We are under no obligation to take away someone else’s physical suffering, because we can’t. We can’t even take away someone else’s emotional suffering- because that’s also up to them to figure out. We can show we care, ask questions, offer practical help. But that’s all we can do. I think this is even true for parents of CF kids. Ultimately, there is nothing a parent can do to take away their child’s illness experience. The child has to figure it out him/herself.

Okay, I’m really rambling.
I’m spending my days hibernating, swimming, piping, planning the CFRI Conference and hiking when my joints permit. I have terrible joint point after steroids so I have to go slowly. I actually fill my alone-time with wonderful self-enriching activities.

But I’m happy to be home tonight with Andrew. Ana will write next to share her adventure in Hawaii!
Please take care, friends. Thank you for reading this blog.
Isa

Dear Friends,

I am deeply touched by many of your calls and comments regarding my last blog entry. Your main messages were that many of you feel similarly about your health limitations, whether you have an illness or not… because we are all human. Even healthy people have to budget their time, energy and be realistic… and face disappointment. Even Bear Gryllis in ‘Man vs Wild’ has limits. I dared to turn on that show last night and realize it doesn’t matter whether one is physically healthy or not- it’s our minds that create goals we want to pursue and then we strive toward them- sometimes successfully or not. If we’re strong like Bear we just aim higher.

Five days has passed quickly. The night I wrote my blog venting my frustration, I finally turned the lights off at 1AM and lay back in my bumpy bed, in the dark, and led out a deep sigh. A really deep sigh. I had a peaceful conviction that I was exactly where I was supposed to be. No more fighting. This was it. And I was completely okay with being here. I thanked God for that peace. That is what therapeutic writing is all about for me. I write, I organize, I let it out, I feel better. Better than a shrink.

On Wednesday, while I was stuck here at Stanford, Ana’s flight to Tucson was cancelled and we went back and forth by phone trying to get her to Tucson (via Phoenix) in time for her speaking gig. It didn’t work out and the event was cancelled! After all that! Fortunately, arrangements were made to be videotaped the next day, and a few families did show up to hear her talk. And Ana successfully gave another talk on Thursday morning, as anticipated. But the stress of the cancellation was both embarrassing but uncontrollable. Another reminder that these things happen, and it’s ok. She was such a trooper. I am so amazed by her strength. Of course there was a lot of nagging and complaining that we tend to overcommit and need to set limits. Next thing I know she just booked another commitment! What the?!?

I’ve survived my days here relatively well. The steroids have made my joints hurt but my sugars and appetite aren’t too out of control. I’m stuck to a mask 6 hours a day so I’m forced to be still and focus. I’ve been working on talks, plans, projects and scrapbooking. I’m reliving the amazing book tour road trip Ana and I took last spring, filling pages and pages with photos of red rock canyons in the Southwest. I remind myself that sleeping under the stars in Utah has been the grand reward for a few nights locked up in the hospital like this. Whatever difficulty comes ahead, my carefree travel days remind me it has all been worthwhile.

There is so much to do. I’ve practiced my bagpipe chanter, read a little, talked on the phone and have been doing email. I’ve taken walks/jogs and had a few meetings in the hospital. Yesterday I walked around campus, talking with several friends for two hours until the battery died. What a great healing experience! I feel like the richest person in the world, measured by so many loving relationships.

While most of the care is going well here, I’ve decided the key to staying content in the hospital is to have low expectactions. I can’t expect to have my needs met, have things be on time, have people make eye contact, introduce themselves, wash their hands, greet me, offer something, excuse themselves, or have common courtesy. Everyone has such vastly different background when they interact with me, with a entire host of influences, so my demands on them are just that- my demands. If I need anything, I have to get it for myself (or find out how), ask for it, or do without. I don’t want to waste energy being pissed or upset. Because that’s my choice then to be upset.This mindset has given me peace this hospital stay.

Sadly, Andrew has come down with a bad feverish virus so we are not seeing each other. I feel badly to not nurse him when he has nursed me so often over the years. How unfair is it that taking care of my husband is potentially life-threatening? We spent Valentine’s Day on the phone, but he couldn’t talk too well because of his throat. Ana left to Hawaii this morning so when I go home I’ll go to her house for quarantine. She and Trent will be visiting my 93 year old grandmother and our uncle/aunt, and then visiting Kauai for romantic adventure together.

I look forward to being discharged this afternoon and going home for a good night’s Ambien-free sleep. Quick, to the point, recovery… let’s hope. Praise God.
That’s it to report. I wish you all health and warmth this cold season. Thank you for your precious friendship and well-wishes.
Love to you all,

Isa

Dear Friends,

Thanks again for reading this blog. After celebrating a joyful trip to the Inauguration and my healthy five year transplant anniversary, I am now being admitted for a cold and five more days of ribavirin and steroids. I am so furious. This is my fourth round in one year. I have a mild cold (thankfully, just parainfluenza and not the more severe RSV) and it seems so out of proportion to be poisoned by toxic medications. My muscles, my bones, my resistance, my warts, my mood will go haywire once again.

I know I have no right to complain. This is a small price to pay to ward off rejection. There are people with end-stage CF desperately waiting for a transplant, there are people with severe rejection and all kinds of critical health problems. But herein lies the temptation for me, who is gratefully doing so well with transplanted lungs: I feel normal. I am trying to live a normal active life. I have the luxury of planning my future, my career steps, my travel plans and athletic ambitions. And then this happens.

I’m human. I am tired of being the model patient, full of contained positive emotions, so I will share that I’m enraged right now and taking it out on this blog for the whole world to see. This sucks! This is what swear words are for. I hate this part of my life! I hate how my mind lives the illusion that I can do things and plan just like everyone else and then sickness comes back to tease me into submission. I hate how this sickness is always in control. I hate how the nurses act like it’s no big deal for me to drop everything and come right in. I’m so pissed that I can’t just set commitments like my healthy peers who have virtually no risk of their health falling apart to cancel everything. I hate how I’m told to drop everything and come in right away, there’s a room waiting for you; only to arrive and have them say there’s no room available so I’m sitting in the hallway waiting. This is all just bullshit. I just have to vent.

I feel defiance, rage, hostility, rebellion, angst towards my fate yet there is something liberating about all this negative energy. It reminds me that I am very much alive and I have the fight in me. It’s this very anger that has kept me, Ana, and so many others alive, day after day, despite the odds. F’ing A.

I was supposed to give a talk at UCSF tomorrow, fly to Tucson, give a talk tomorrow night, and give another talk on Thursday morning. I feel like a failure to cancel these arrangements when people spent money and time arranging the events. I hate letting people down. I spent the last week consumed by futuristic career planning, unlimited ambitions, resume writing and passionate project goals. Now, like a slap in the face, my reality is here.

What am I supposed to do? Live in a bubble? I stay at home all day, I go to bagpipe band to exercise my lungs, I go to jazzercise, the pool and gym to exercise my lungs, I go to the grocery store to buy nutritious food, and no matter what I try to do to take care of myself, I catch something. Damn! Do I need to avoid people December through March? What kind of job can I really get?

Ana said I am “yowai”, or weak, because she never catches squat. Knock on wood. She’s just an extremely unusual transplant patient. Andrew is wonderfully patient and understanding.

Okay, time for you to tell me to get a grip. In a major way.

In the big picture I do get it. None of this really matters. I’m okay. Really. My basic needs are met. It’s just my stubborn ego talking that wants her own childish way. This is just my life and I have to accept health upsets. There is always a risk to book events in the winter. I know people cancel things. The events will go on. Thankfully, Ana will go and represent me. I won’t risk exposing her to my virus because she’s going to Hawaii next week and shouldn’t get sick. Keep your fingers crossed for her.

It’s the symbolism of being caught between temptation of wellness and reality of sickness that makes this life harder. This limbo is more frustrating than knowing my identity was that of a patient versus knowing I can be a healthy person.

Now, I was finally put into an isolation room. Ironically, this is the same room I was in when I was listed for a transplant January 23, 2004. This is where my dog Rupie was snuck in and visited me (the photo is in the book). This is where I started to gasp for breath and my world got smaller, where I wrote “Mental Travels” (www.thebreathingroom.org/py/py_is01_mental). I was in this room when I made the decision that being in the hospital was making me sicker and I insisted on getting discharged on January 27 and conducting a support group for work. I practically went into respiratory failure driving back to the hospital. Even then I was fighting this role of patient versus professional, wanting, yearning, longing to just be normal, to be healthy. And look how far I’ve come. God is reminding me.

Okay, more venting. The sweet nurse who just accessed my port has a cold. Go figure. Time to put a note on the door, saying, “Please wear a mask!” Last thing I need is to catch RSV here. I also just got my low salt/fat/cholesterol meal that has about 300 calories. No order for insulin. It will be a long five days.

Tell me again to get a grip.

On my transplant anniversary, 2/6/09, I went to a lung transplant support group and witnessed so many people in desperate trouble. Some of them are yearning to breathe, to go home, to be with family, just for the simple things that I have every day. I’m among the most functional patients there. I cannot ask for more. I belong in that cohort, despite my protests. We are all filled with anxiety about how easy our next breath will be. No one knows what the future holds, so this group offers that timeless message to stay in the moment.

Now onto a lighter topic. This made my week. On the evening of my five year transplant anniversary, I celebrated by going swimming with Ana at night in the outdoor pool. I felt it was less germy than the stuffy gym filled with viruses. All lanes were filled. It was very cold so I quickly stripped into my suit underneath and asked a man in one lane “Excuse me, do you mind if I share your lane? Can we split?” He kindly said yes, and I dove in, and started swimming nonstop for at least 30 laps to get warm. Once I kicked him and stopped to apologize, but otherwise I was in a meditative freestyle frenzy. Then he left and I stopped to apologize again for kicking him. Ana joined my lane and we swam for another 40 minutes or so (I think I swam about a mile/70 laps- Praise God). When I got out of the pool, I saw a business card on my swim bag. I ran to the hot outdoor shower and in the light I read it, “Nice sharing lanes. Now let’s share dinner.”

Hey! How about that? I got hit on! First time in my life. Another ‘first’ that my transplant has allowed me to experience. I was flattered and offended at the same time. I admired his boldness. I cringed at the creepiness of the move. I felt sorry that this is how this guy had to meet women. This guy in his mid-50’s didn’t know me from Eve; he didn’t even know my race behind the anonymous swim cap/goggles, and he clearly didn’t see my wedding ring (or did he?). Ana said, “Congratulations, you’re officially healthy enough to be hit on by men.” What an accomplishment! I exuded fitness that was deemed attractive but that guy had no idea what my story was. Then Ana continued, “You also look so old so that older men would hit on you.” Then she lamented why he didn’t leave her a note. Ha! Twin complex. Anyway, I got a kick out of that.

My room is filled with a box of projects and I intend on being extremely productive this hospital stay (thanks to steroids). But I must remind myself to slow down, to reflect and remember where I came from, to meditate, to accept, to breathe, to sigh and be grateful, to believe I’ll be okay no matter what. Job, health, or not, I’m still me, loved and loving, worthy productive or not, rich earning income or not. I am part of something bigger than my own goals and plans.

I end this long post with a message that fits my life today. It is by Shel Silverstein, and it’s called “The Missing Piece:”

Try to visualize this: Once upon a time, there was a circle that was missing a piece of itself. The incomplete circle was very unhappy. So it went all over the world looking for its missing piece… but in vain. It just couldn’t find it. Some parts were too big and some were too small. Some were too square and some were too pointy. None of them fit. Then, suddenly, one day it found a piece that seemed to fit perfectly. The circle was complete again. And now, because it was an unbroken circle, it could roll much faster. And it did. It rolled so rapidly, it rolled past the lakes and through forests. It travelled so fast that the landscape became a blur as did the birds and the flowers. It couldn’t even talk to the insects. Suddenly the complete circle realized that it was moving too fast, propelling itself fanatically without seeing and living life. It put down its missing piece. It began limping slowly away, beautifully, slowly away.

May all those who yearn, hope, long for, or who feel incomplete find solace in these words.

I wish you all health this winter. The plum blossoms are blooming and spring is coming. There is hope ahead and we’re here to see it today. Many blessings and love to you, thank you for your patience while I whined.

Love Isa

Dear Friends,

Greetings from one of the Stenzel twins. Thanks for reading our blog again.

I have fully recovered from the Inaugural activities and thankfully didn’t get sick. I have been spending my days exercising, organizing my home, doing taxes, playing pipes and emailing incessantly. I continue to pursue speaking opportunities for our book and am trying to develop consulting work. Nearing the five year anniversary of my transplant (2/6/04), I am feeling proud of all the experiences I’ve been able to have, thanks to healthy lungs. It’s the little things that matter, the ‘firsts’ I am still amazed I can do because I’m alive. In the last few weeks I changed the tire on Ana’s car; added shelving to a closet and I hung bike racks in the garage, making me feel very masculine and capable. I joined an outdoor docent training class - finally- and have been learning about geology, botany and natural history at a local park. All my life I wanted to be a naturalist, and now I’m finally doing it! Yesterday, I went to a career counselor, to figure out what I want to do with the rest of my life. It feels great to have a future.

Yet, still, there are reminders of what could’ve been. Last Tuesday with my piping band we went to memorial service at a yacht club in Tiburon. With kilts, plaids, and ostrich-feather bonnets, the band went out in a small boat, playing tunes while dozens of boats followed us and circled us in the middle of a clear, calm bay. The sun was bright and it was a glorious experience to pipe on the water. As we played “Amazing Grace,” the family boat scattered ashes of the loved one and friends from each of the boat dropped roses into the water. It was the perfect way to go.

On Friday I went to a friend’s funeral. I’ve known this friend for 18 years, and she died of CF (broken ribs due to osteoporosis caused pneumonia) and kidney disease. It is so tragic she never received a transplant. It’s even more tragic that cross infection kept me from meeting this friend for several years. Upon arriving at the funeral, I hugged her partner and longtime friend of mine. I felt so sad he had to fall in love with someone with CF, inviting this degree of pain. I approached the open casket with trepidation because it certainly did not look like the friend I remembered. I looked at her made-up face, her hand, her fancy homemade outfit, absorbing the essence of her body, knowing her spirit was already elsewhere. Next to me came her mother. This petite woman- who is like my mother in so many ways- reached and held her daughter’s hand, broke down, whispered and cried out a heart-wrenching farewell to her 32 year old love of her life, just as the attendants closed the casket. The mother turned to me, emotionally devastated, and said, “She’s resting now.”

Five years ago today, February 4, 2004, marked the end of my donor Xavier’s physical life. I am thinking of his family and friends and how much their lives have been altered in five years. I know the whole blog, my regular words of remembrance and even “The Power of Two” emphasizes over and over how great it is to be alive because of an organ donor. At my five year anniversary, I cannot help but feel repetition of a story so profound to me is necessary and okay. I used to not ‘get it’ when my transplant friends would go on and on about how amazing it was that they had a transplant. Now I’m doing the same.

My father, a mountaineer, writes trip reports for his hikes. For some reason, he wrote a trip report about his visit to Stanford in early February, 2004. I recently discovered this report while organizing my office. As a tribute to Xavier, my father’s perspective and the fate that spared my family from loss for five more years, I thought I’d share his words:

“On Wed, Feb 4, 6pm, Mom received a call from Ryuta and Ana that Isa had seriously deteriorated and that we should come up to see her because she was in the end stage of cystic fibrosis. She had essentially stopped breathing, turned blue and was about to expire. They rushed her to ICU to revive her with a breathing machine. Hatsuko called me at 6:30pm and I dropped everything at work. We met at home around 7pm, packed, called Ryuta again who helped us get a reservation on the last flight at 9:25pm to San Jose. We arrived at 10:30pm; Ryuta drove us to Stanford Hospital where we saw Isa in the ICU. She was on a breathing machine, completely sedated, unresponsive to touch or sound, pale and had cold extremities. The ventilator forced oxygen into her lungs at a rate of 40 breaths a minute, and she was ventilated at an equivalent rate of 20 liters/minute, something she could not possibly do without a machine. Dr. H., who was her primary doctor, explained her decision to put Isa on the ventilator since otherwise she would be so exhausted from the effort of breathing that she would expire. By letting the machine do the work she might regain some energy to fight the infection. The drawback was that in a sedated stage she could not effectively cough up the secretions. This would plug up the lung worse than before, leading to further infections… every CF patient knows that the odds to recover during ventilator treatment are virtually nil.

We spent Wednesday night sleeping in the hospital waiting room. Thursday we visited Isa every few hours. Dr. H. gave us an update on her status every few hours. Her statements were realistic and gave little indication of hope for improvement. We endlessly discussed possibilities of alternative treatments. She explained that there are no better methods available for clearing the secretions; that, once on a ventilator, a lung transplant has a decreasing chance of success and would be totally out of the question after 7 days. Although Isa was approved in January for a transplant, the chance of finding a matching donor lung within such a short time span was extremely poor. Typical waiting times are months to years. Unfortunately, lungs are assigned on the basis of waiting time rather than medical urgency and Stanford competes with UCSF and there were a total of about 200 patients waiting. Living donor lungs was no option since two persons have to donate one lobe each and the doctors would not risk three operations with a questionable outcome…

By Thursday afternoon we were all desperate. The thought of Isa’s death was sinking in. After 32 years of struggle with CF the end seemed to be here. Her husband Andrew was devastated, her twin sister Ana felt that half of herself was dying; mother, father, relatives and friends were fearing more bad news from Dr. H. who was also at the end of her medical knowledge and close to tears. The next news was that Isa was running a fever. This indicated a growing infection. If her temperature would run away, all organs would be affected and it would lead to septic shock, i.e., death. Now it was just a matter of when…. A moment later Dr. H. requested that we gather in order to make an important announcement. Our hearts dropped since it was surely another statement of imminent disaster. A man in blue hospital clothes, introduced as Dr. Lloyd, accompanied her. Dr. H. said only one sentence: “We have found lungs!” We could not believe our ears. Dr. Lloyd confirmed that a matching donor lung had become available this evening. They would fly it out by midnight and start the operation right away. The joy of this moment cannot be described in words. We were all in tears and sure that a miracle had happened.”

Today I will have lunch with Dr. H and another gifted healer, Dr. D, and my transplanted friends. What a special way to celebrate my five-year re-birthday.

I hope you are all enjoying your February. These are the long dark days of winter (everywhere except California, where it has been sunny and gorgeous every day), and I appreciate staying home, nesting, meditating, planning and reflecting on life. I hope you find yourself taking care of yourselves these days.

Best wishes,
Isa