Ana and Isa’s blog

Dear Friends,
It is time for another update on our lives. Thank you for your ongoing interest.

After a week of staying at home while my immune system recovered from heavy duty steroids, Ana and I went to a CF education day at California Pacific Medical Center in San Francisco on Saturday the 23rd. It was truly a trip down memory lane. We met Dr. Hardy, whom we hadn’t seen in nearly 15 years! We also saw a favorite nurse from LA Children’s Hospital, DJ, whose support group we used to attend as teenagers. DJ and Ana and I remembered a few precious friends who are long gone. I appreciated my new friend Rich coming to see us speak, and our connection is amazing. Ana and I spoke to a handful of families, and enjoyed to see two young teens meet and learn more about CF. Truly life is repeating; there are others fulfilling their lifestories now, learning, growing, becoming their own people while managing their CF.

Ana and I are privileged to both be healthy enough to have our first of three road trips the day after, on Sunday. We drove to Orange County; next week we head to Seattle, and we continue to plan our cross country book tour road trip in April-May!

The little Honda was packed to the rim for a 3 day road trip. The bickering has started already. On Sunday, after three hours of driving, we switched drivers, and an hour or so later, Ana yells, “Shit! The gas light is on!” We were on one of those remote areas of highway 5, and the accusations started: “You should’ve told me the gas was low!” “You’re the driver! It’s your responsibility to notice the gas level!” “You are too focused on talking on the phone!” “We should’ve gotten gas earlier!”

Then we burst out laughing.

This was 400 miles. What will 6000 miles be like?!?

Thankfully, after a few detours we found a gas station just in time.

Along the ride, Ana and I spoke to a few long lost friends. I called Denise, my former CF camp counselor, to invite her to our reunion. She couldn’t make it but we reveled in how long it has been. Denise was my age when she was a counselor for “The Famingos”, my cabin. She was thrilled to hear that we had made it, and I hope we can stay connected. Ana also learned that her camper from CF camp’s (who died in 2001) mother was engaged to a man who works with a friend, and learned about the book. Ana called this mother to reminisce about this camper. What miracles!

Six hours later, Ana and I spent an hour at home, visiting with Dad briefly. Dad happily reported about his jury duty experience last week. It was the first time he served on the jury, and he spoke with energy and enthusiasm that only a recently naturalized citizen could have! Meanwhile, my Mama was also called to jury duty and was just as passionate. “I hope they call me! I hope they call me!” she kept telling us. Oh, the pride of being American!

Then we head to Seal Beach for a precious “Cystic Fibrosis Summer Camp reunion”. We reconnected with some of the 50/60 year old-plus men who created and sustained our Heaven on earth when we were kids. Since 1968 or so, CF camp was the most sacred place to celebrate friendship, freedom, and life, and cultivate depth, trust, hope, and love while sharing a tragic illness. We saw a few friends we hadn’t seen since the camp closed in 1995. Our book has allowed us all to make that extra effort to reach out. We spent 5 hours eating and laughing and drinking beers, reminiscing about the old camp days and all the friends who came and went. It seems that 90% of those kids and young people, as far as we know, have died. There are so few survivors and I don’t know why we are so lucky. But I think our friends were happy to see us alive and well, along with Denise, who is 11 years post -transplant. These guys worked their butts off for 30 years to raise funds for camp and prepare to offer a free week of respite from disease that these kids so desperately needed. They spoke of the old CF- where kids died so young, when they suffered immensely from chronic diarrhea and coughing, when we didn’t know a thing about cross infection but only knew camp was the most healing environment these kids would ever get. Besides all the interesting characters who walked through that camp, we laughed about the ‘death hike’ and the skits and the behind the scenes insanity that would be impossible in today’s legal world. Most of all, we remembered my hero and role model Bob Flanagan, for who he was, not what he did. These friends talked about how, for many of these kids, CF was only one challenge in their lives, but they faced so many other social and personal problems. The one consistency in their lives was the loving care and dedication of the CF camp staff. These men gave blood, sweat, tears, and pure and utter exhaustion year after year to make sure the CF kids had one joyful week in their lives to live for. That night, my heart expanded to a whole new level as I finally realized how these men exhibited an immensely godly level of love for these kids. They made a difference. And we’re still here to tell them that. And we shared that with the world through our book.

The next day, we joyfully hung out with our cousin Britta’s inlaws, the Hirsches, in Seal Beach. We shared so many compatibilities and enjoyed the conversation so much, I felt like I was talking to lifelong friends! I took a jog to the beach, and struggled with my muscle weakness, but sprinted along the water! The air felt fresh, even in Long Beach. We shared a meal together and prepared for a book club gathering in the evening. Mrs. Hirsch has been a member of her book club for 20 years, and about 15 people came, most of whom had read the book. I was especially grateful that my other cousin Julia and my friends Sally and Ethan joined the event as well. I felt so grateful for the Hirsch’s hospitality, openness and generosity to host this event.

Ana and I spoke for about 25 minutes and then opened up the gathering to questions. Although I am getting very tired of talking about myself and my disease and my transplant and my life, I appreciated everyone’s interest and sincere questions about CF and transplantation, which is the reason we wrote the book- to educate! People also seemed interested in the characters in our book, and the family dynamics. Ana and I tried to split the discussion and talk as naturally as possible, which is always a challenge, but the comfort of the group made it easier. All of the friends were so loving and supportive, and seemed to genuinely like the book. I love how some people feel more comfortable talking about their health issues or family problems because our honesty in the book has given them permission to do so.

Late at night we drove to our parents’ home in Pacific Palisades to sleep. We woke early to spend some time with Mama before she rushed off to jury duty, and Dad to work. We shared the events of the weekend happily. Then Ana and I packed up and drove back north, passing green hills and fields, and the peach, plum, almond orchards of the Central Valley just started to burst with blossoms. The sky was blue and the sun was shining, we had plenty of gas in the car and we felt so uplifted by the love we had been part of with these very special people in our lives. How fortunate!

We truly recognize that the greatest gift of this book has been reconnecting us to all sorts of people from each day of our lives, creating a reason to reunite. We are all the same people as we were back in 1983 and 1990 and 1995 but just our outsides have changed, and now we have courage to talk to each other at a different maturity level. I feel we all have a deeper awareness of life that allows us to relate more authentically, without fear of judgment. It feels to great to grow older, and to learn where people have been in their ‘memoir’.

Ana and I drove home and went straight to the pool to swim. We swam together for the first time in over 13 months. It was amazing! Ana is just slightly slower than me, and I am blown away by the miracle of her recovery. It also means I have to train like hell because I have serious competition now. She coached me on butterfly and managed to swim 10 laps without stopping just shortly under my time. Amazing! What a celebration. I thank God, her donor, and the spirit of Ana!

I wish you all a beautiful week. Please take care and thank you again for all your support for our book, our blog, and our lives. May this spark an interest in you to reconnect with someone you miss… Yahoo People Search does wonders!

Isa

Dear Friends,
Thanks to those of you who shared supportive comments and insights on my last posts. What I wonder about this blog is why people care to read it, but mostly I’ve decided people read it and then reflect on their own lives and that’s the real point here. In a nutshell, we are all in this together, trying to figure out why we are here and what we are supposed to do while we’re here.

Anyway, I realized my second to last post was pretty manicky with plans and activities. Now I humbly write more than one week later from the tight confines of an isolation room in E Ground at Stanford Hospital. That’s right, on Tuesday the 12th, after a grueling muscle workout, I developed a runny nose and just in case, I got a nose swab, which came out positive for RSV again!!! These were new cold symptoms that came on suddenly and were caught quickly. After a day or two of ribavirin, symptoms have disappeared, so I am glad I caught it early.

When I got the call that my RSV was positive, I felt like a spoiled child. One part of me was completely tempted to just ignore the phone message and pretend it didn’t exist. I would not stop my life; I would not pack my things and drive to Stanford. There was a glimpse of that thought. Then reality hit and I faced the fact that short term inconvenience is for long term gain, and I must be mature about this. No more pouting. Because I remember surrendering to the hospital in my days with CF when I felt so shitty I had no choice; now I had a mild cold but otherwise felt great, and to admit to being sickly enough for a hospital stay is a blow to the ego. My life doesn’t belong to me. My body still owns it.

Others reading this might think: Duh.

I also realize this is good timing since I don’t have much going on this week and next; the real fun is in early March, and mid April to May. Now, it is time to focus on the body.

So I reluctantly share this news with you. I don’t want sympathy, attention or lamentation. I didn’t want to say anything because it might spur a concern that I’m overdoing it, that I’m bringing this on myself, etc., because of our hectic book plans. This is a glaring reminder that I need to find BALANCE in between plans, goals, activities and REST. But unless I stay at home all day, I will be exposed to people and colds. I am exercising at the gym, eating out meals with friends, and going to church, which are good for body and spirit, and possibly where I caught my newest cold.

Sadly, I missed Geoffrey’s funeral yesterday and another transplant acquaintances’ memorial service today, and the reminder of my vulnerability and friends’ passing has left me a bit shaken about the fragility of this life.

My discouragement has made this stay less positive, and more than usual glitches in care have made me ornery. But overall, I remain defiant to insist I am strong, having jogged around campus twice since Wednesday (after recovering from sore muscles). Because of another 1500 mg of solumedrol (prednisone steroids), I feel muscle depletion. I am energetic but exhausted, wired but depleted. But very productive. I transfered address books and sadly crossed out so many names of friends who have gone. I transfered important numbers from my 2007 calendar to my 2008– finally, and updated my contacts lists. I’ve bagpiped outside and practiced my piping chanter in my room. I’ve been working on medical tax paperwork (oh the fun!), book budget, grants, travel plans etc. I have a US map on the wall and Ana and I are dreaming of driving across the country. Thank God for hospital email access.

I am proud and concerned that Ana started a relief genetic counseling job yesterday! I hope she can handle it. She wants to return to her normal life. She is so driven, which I admire. But I hope she can balance health needs, book tasks and work now. Timing is not the best. She just must learn to say no. Luckily, despite lots of exposure to me, I left her house last week at the immediate sign of a cold, and her RSV was negative. I hope it stays that way!

I hope you all enjoyed a love-filled Valentines Day this week with your partners, family and friends. Andrew was so sweet to bring by a delicious meal from California Cafe, the restaurant across the street where we have gone after each of our transplants. On Feb. 14 2004, he ordered a meal and the restaurant lent him a tablecloth, real silverwere and plates, and we had a romantic meal in the ICU after my transplant. This Valentines’ Day, we had another romantic meal in my isolation room. With my steroid-induced appetite, I ate everything- the truffles were fabulous! More importantly, though, it is still such a gift for Andrew and I to be together, relate the way we do as a couple that has been married for nearly 10 years, and be reminded that it doesn’t matter where we are or what the circumstances, as long as we are still together. I am so blessed. I hope many of you are too.

Anyway, I get my last dose of ribavirin tomorrow and hopefully will go home. Because my immune system is extremely low, I will hermit for a week. I thank you for your support and appreciate your interest in our lives.

Have a blessed long weekend. Love to you all, Isa

Dear Friends,

Today I feel a broken heart, because I received news that a dear friend died on 2/5/08. Geoffrey Thomas was a 34 year old heart recipient, and received his gift of life on 3/22/04, and we spent a few months in rehab together. He was full of love, caring, joy, and wanted to help people through his talents as a massage therapist and a drum teacher. He played in a band called Chicken Paws in the East Bay and was so full of life, giving, emotion and romanticism. He loved hiking and Redwood country. He exuded a coolness, an acceptance and loving appreciation of life. His musical talent was shared for the last 3 years at the Heart Lung Transplant Party held each spring at Stanford Hospital. I was privileged to know Geoffrey through our mutual transplant struggles, and he truly ‘got it’, appreciating every day of his gift and each friendship bond he created. One of the best parts of the 2007 Relay was going to the finishing line and finding Geoffrey there to greet us, depleted and exhausted, and he was eager to give massages. I am grateful he introduced us to one of his best friends, Jill B., who walked the Relay on Ana’s Walk Team.

Geoffrey felt severe fatigue on Friday 2/1 and was found to have rapid rejection of his heart, resulting in sudden cardiac arrest on 2/5. I hate that this gift of life is given so quickly and then taken away so abruptly. It’s just not fair. I am so devastated at the fragility of this dangling carrot of our new lives; I can only cry alone, behind the wheel of my car, because it’s a private pain hard to explain. I want to live forever. I wanted Geoffrey to live forever. Because I though heart recipients were supposed to live longer than lung recipients; they were supposed to be able to get off prednisone and not have problems and live for decades. If anyone deserved that, Geoffrey did.

I thank the Universe for Geoffrey’s heart donor, who gave him the healthiest 47 months of his life. Much like we can’t control when the gift is given; we cannot control when the gift is taken away. May God bless his donor forever.

Geoffrey’s friend said so eloquently, “His heart stopped working because he gave it to so many others.” His services are on Valentine’s Day. How appropriate.

Tonight I went to my first Master’s Swim Team class, and swam hard, feeling my heart pound strongly in my chest, thanking God for this gift, and hoping to pass on Geoffrey’s gifts to those around me.

Rob gave me a beautiful CD with the lyrics that remind me of Geoffrey’s legacy:

“Shut your mouth there’s no regrets
We’re all in this together
So raise your glasses high
We’ll toast to life that’s better

We’re all moving in the same direction
We’re raise our glasses higher
And toast to no tomorrow”

Sorry to be a downer but I just wanted to share what is really going on.
Thank you for listening, and for your understanding.
Blessings,
Isa

Dear Friends,
I am a bit overdue for a blog post, and thank you for looking for a post!
I hope you are all health and enjoying the dark winter days.
I have been extremely busy. I am happy to report that I went to New York last week with Andrew and returned safely. I was happy to spend time with my dear friend Andrea E., who is 7 years post-tx, and her wonderful fiance Steve. I spoke at the Stony Brook CF education day, and sold 32 books. The next day Andrew and I visited Strands Bookstore in Greenwich Village, where we hope to have a signing in April, and went to a fantastic musical called Spring Awakening with my other friend Jerry C. We had a nice meal with our other friends Ann and Chris, and roamed Time Square. Andrew staying in NY for work.

On Monday, I visited the Museum of Sex to pay tribute to freedom (plus it’s New York, and I went in honor of one of my favorite shows Sex and the City), before flying to San Diego. I met Ana at the airport and we stayed with another inspiring friend Joi S., and stayed up til 2am (5am EST) talking and talking and learning about life from her. Let me just say it was nice that the air quality was better this time! The next day we had a CF fest reunion with Katrina and Philip and my long lost CF camp friend Denise, who is now 11 years post-transplant. It was funny to go to lunch together, 5 people with CF (4 post -tx); 4 with diabetes, 3 on IVs and all taking pills!! Talk about a bond! Ana and I stayed at the fancy Hyatt, and the next morning we spoke to the Pulmozyme sales team. It was like going back for a family reunion, since we’ve been speaking for Genentech for many years. Afterwards, Ana and I went to the San Diego Zoo. I felt like a kid again running around to see the pandas, lions, bears, and gorillas, even though Ana had to crutch around. I was so happy not just to witness God’s beautiful creatures at America’s most beautiful zoo, but to be alive again to visit this zoo after some 20 years!

From San Diego, I went to Los Angeles, spent the night at my parents, and then on Thursday met Andrew and went to the Kodak Theater to see the Democratic Presidential Debates! It was very exciting to be among the most passionate and privileged political activists in our state. I saw many familiar politicians, including Gray Davis who sat in the cheap seats near us, and Stevie Wonder, Steven Spielberg etc. I loved watching how poised Hillary and Barack were. Barack pulled the chair out for Hillary, and Andrew said “He’s smooth! He’s smooth!” Hillary clearly dominated the responses; they were both cordial to each other, and the interviewers including Wolf Blitzer were just horrible. But I was very pleased to witness this historical moment. Sadly, we returned to our car to find it had been broken into, and my cell phone, Andrew’s blackberry, my camera and GPS were stolen from the glove compartment (duh, don’t put your valuables in there). Now why couldn’t the thief take the three Hare Krishna books I got at the airport?!?! At least Andrew’s 2 work laptops were left. Andrew and I bickered about whether the car was locked. I was so distracted because I had just infused my last IV and de-accessed my port and left my needle, which wasn’t stolen:)… Anyway, there is nothing we could do in hindsight.

We rushed to the airport to catch our 10:30pm flight, only to find the plane delayed 2 1/2 hours… We came home at 3am after finding my luggage was sent to Chicago. Andrew said, “Outside of your health, this is the worst day of my life.” My response, “Man, you are very lucky.” (sorry, somewhat dismissive) Okay, enough complaining. Seriously, though, we count our blessings that we were not harmed, and more could’ve been stolen. We came home safely. The next day I listened to the CD from the musical Spring Awakening called “The Bitch of Living” and I guess the theft is part of living. When bad stuff happens these days I just think, “What’s the alternative?” and my answer: “dead”.

I spent the weekend recovering. I had a piping performance on Friday night and made an audition tape for the Transplant Games ceremonies thanks to Rob. I also went swimming since I am finally IV free. It was somewhat anxiety-provoking to breathe hard again, since I’m out of shape following my last hospital stay.

On Monday was February 4; four years ago my donor Xavier’s bright soul left his body when his brain died. I went to my annual transplant clinic appointment. Despite some tightness and mild productive cough, my FEV1 was 112%!!! This is the highest it has ever been, and I haven’t even exercised or piped seriously. Thank you, Xavier, for these great lungs.

Today is Super Tuesday, which is almost over. I voted this morning, which was so exciting! Then Ana and I had a chance to meet Dr. Francis Collins (director of the Human Genome Project and discoverer of the CF gene) at Stanford, thanks to my wonderful former Human Biology professor Dr. William Hurlbut. Even though we had a brief chat, it was such an honor to meet someone truly successful in all respects- professionally, intellectually, socially through contributing to knowledge, musically (he plays the guitar), and of course spiritually (he recently published “The Language of God”. I had a fantastic heart to heart connection with Dr. Hurlbut as well, even after 14 or 15 years. He is a bioethicist and renowned for stem cell bioethics. How blessed I felt! Each of these connections seem meant to be, planned by something higher.

Four years ago today I was on a ventilator, as my family and friends prepared to say goodbye. At 5:30pm, five words turned our lives around: “We have lungs for Isa.”

Not to sound morbid, but I still think about what would’ve been if I never got called for a transplant, and my life ended in February 2004. Would Ana have published the book? Where would Rupie go? Would Ana have rejected earlier, and decide not to get a 2nd transplant, and we’d have been reunited in Heaven by now? Four years after my death, I imagine Andrew would have been through the depths of hell but perhaps by now met someone and tried to be happy again. Maybe my parents would have found some resolution in their grief. I would have never reconnected with so many fabulous people who have touched me deeply in the last 4 years. I know the world would have moved on, kept going, and that beautiful things would still continue; I’d just not be able to witness them in this world.

To top off our Stanford-intensive day, Andrew and I celebrated by going out to dinner to our favorite California Cafe, a place next to Stanford Hospital, where my family ate after my surgery. We had a lovely meal, and then went to Stanford Memorial Church, where we were married 9 1/2 years ago, to see the St. Olaf Choir. One of our first dates back on Jan. 31 1994. The music was amazing. We sat under the center of the church, the eye of God, surrounded by four angels in the arches of the ceiling, and it was a holy moment listening to the voices of human angels. Our favorite song is St Olaf’s signature song, “Beautiful Savior” by F. Melius Christianson. This song is so mesmerizing and sacred, if I close my eyes when I hear it, I am partly in Heaven. The large choir made the words sound blurred, and I swear I heard “Beautiful Xavier.”

So today I close by telling the Universe thank you for my beautiful Xavier. These four years have been an extraordinary dream, extra credit, icing on the cake, to a life already fulfilled. You all have contributed to the high I’ve felt for four years, and thank you. I feel God’s love through each one of you, and am so blessed.

I am especially grateful to welcome two babies into the world this week, signifying the continuity of life. Congrats, Daniel and Paul, and Mike and Cheryl (of Camp Isa 2/6/04!)

Have a great day and I hope you are happy with the election results. I am so pleased my candidate won my state.:)
Love to you all, Isa

PS Happy birthday to my Obachan, my Japanese grandmother who is 92 on 2/6/08!

Dear Friends,
Thank you for your continued interest in our lives. We apologize that our writings have become less frequent; our lives are full with book busyness.

Tonight, just a few minutes ago, four years ago, we heard the magical words as Isa lay dying: “We have lungs for Isa.” It is well depicted in our book, in chapter 32, but each Feb 5 we remember how our spirits were lifted up and hope prevailed with those incredible words. However, at that time, Isa’s donor family was grieving the loss of their precious 18 year old son, so we think of them tonight. Please join me in reflecting on this moment- the HOPE that transplant brings, the ability to lift families like ours from the depths of despair to the highs of elation when an organ is found. And we remember Isa’s tenacity in holding on… as if her spirit knew that a miracle would occur.

 On Sunday, I had my own miracle. I swam again after 11 months of not being able to do so. It was a glorious moment- to glide under water, to hold my breath, to feel the bath-like water of the heated pool surround me. I held my breath for 12 strokes and felt the muscles of my weakened arms work again. I came up from the water and said “These lungs are good.”   I hope to keep it up and train for the upcoming July Transplant Games. I am weak from high dose prednisone and have a broken foot that floats limp in the water, but nonetheless the gift of being able to swim again brought tears to my eyes and made me pray aloud in the water to praise GOD. Ah the privilege of being alive.

 Today, we had the privilege of meeting Francis Collins, head of the Human Genome Project and one of the discoverers of the CF Gene. He is  to genetics as Warren Buffet is to economics. It was intimidating to stand before such a brilliant and compassionate soul. His book, THE LANGUAGE OF GOD, discusses his views on reconciling science and religion, since he is a world reknowned scientist but a devout Christian as well. His work in genetics and his philosophical thinking epitomize a well rounded and deeply introspective genius.
To me, the lives of Isa and I symbolize that reconciliation between faith and science, for we wouldn’t be here without both- the love that God has shown us and the science that has allowed us to live. I highly recommend Francis Collins book for those of you with an interest in such matters.

I voted today, reflecting on the historic feat of finding a ballot with a woman and African American presidential candidate and propositions favoring Native Americans. The conservatives of the previous centuries may be rolling over in their graves. I hope this is a symbol of how far our country has come, although as we all know, we have a ways to go for improvement. I am honored and humbled to vote, and respect all candidates for their courage to confront the enormity of social and political issues that awaits them, whether or not they win. Bless them for their good  intentions.  

I will sign off prematurely now, with hopes to write again soon. I am off to see Francis Collins present again at Stanford.

Hope you are all well. Wishing you much hope, health, and the surroundings of love.

Ana Stenzel