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