Dear Friends,

Thank you for taking time to read this blog. We hope you have had some relaxation and time off from your routine to enjoy Christmas. We are in the tail end of 2010, a time when I look forward to the upcoming year, feel grateful for making it another year, and for sighing with relief as I look back on a very intense, full year. I hope you are doing the same. I left my computer behind and relish a true vacation. I’m using my Dad’s awkward Mac to write.

The Stenzel family Christmas was warm and as wonderful as it gets for our family. After a long drive from Northern California on Christmas Eve as I scribbled the last of our 250 Christmas cards (being finished in my Christmas gift to myself), we arrived Christmas Eve to a set table and a full house, so full that Andrew and I stayed at a local hotel.  My Dad was in unusually in charge of the Christmas feast (Germans celebrate Christmas on the 24th) of cornish hens from Costco, salad, potatos, and brussel sprouts.  Like past Christmases, there was the typical medical inconveniences, including my brother’s baby’s high fever on Christmas Eve. As new parents who have never had a sick baby, this involved 2 trips to the ER and many calls to their local doctor, followed by a simple diagnosis of, “Give her some tylenol and it’s probably a virus.” Fortunately, Ana and I were not exposed to the baby on Christmas Eve.

The next morning we gathered in our home for breakfast, including Andrew’s family’s tradition, enjoying cinnamon bread that I made.  The baby was several feet away from Ana and me, and when we opened gifts, I chose to wear a mask. Such is our life.

We were not raised materialistically, so the value of our gifts to each other was minimal. It didn’t matter. We traded baked and hand-made edible gifts, including my fruitcake and fudge for family, my mom’s poppy seed cake, and my dad’s jars of homemade orange marmalade made from the next door neighbor’s front yard orange tree, possibly without their knowledge.

So, without my brother, his wife and sick baby, my parents, Andrew, Trent and Ana and I went to our family friends’ home in Seal Beach, who happen to be our cousin’s in-laws. The immaculate table was set for 15, and with the 2 kids the volume of chatter was just like the scene in the movie ‘Christmas Vacation’. My cousin Britta prepared a gorgeous German feast including sauerbraten, sauerkraut, and spatzle, all homemade. The sauerbraten had been marinating for several days and was beyond tender and delicious. I ate more than my fair portion! Rupie enjoyed a few bones in the backyard. After the meal we exchanged mostly non-material gifts. I love my friend’s philosophy- she doesn’t exchange gifts to defy materialism, she recycles EVERYTHING, uses everything multiple times, walks everywhere, and even brings a tupperware to restaurants to avoid having to use disposal containers. If we all lived like Sally, the world would be a better place. Then we drove to a local neighborhood on the water and took a nice walk along the Venice-like path along nicely-decorated, multi-million dollar homes covered in colorful lights. Our cousin’s child, 5 year old Panchita, ran up and down the path tugging at Rupie, but with such joy and excitment with her responsibility. In the car, Rupie threw up. Overall, we left Seal Beach after a long loving day surrounded by wonderful friends and family. I felt truly alive, truly appreciative of such warmth and hospitality. It was all perfect.

The following Sunday morning, Ana and Trent, as well as my brother and his sick baby, left my parent’s home early to avoid traffic heading up north. I awoke exhausted. I lay there, relaxing and reflecting on how tiring the preparations for Christmas were, and how tiring Christmas day actually was. After several hours of laying in bed at the hotel, and believe it or not, applying for two jobs, I decided my aching body was telling me something. I called off a brunch date with a friend and by the time I made it to my parents’ home, dressed ready to hike with Dad, I was shivering and nauseaus. Oh Shit. My Dad scrambled to look for a thermometer that hasn’t been used in a decade, and my temp read 103. Their tylenol was expired in 2005 and probably purchased by Andrew. After a call to the Stanford transplant team, my hopes for Disneyland dashed as he said I should go to the ER instead of driving up north. After 2 tylenol bought immediately by Andrew, off I went to the UCLA ER, which was part of the newly built, God help me, Ronald Reagan Medical Center. Membership has it’s privileges and just mentioning I was a lung transplant recipient got me escorted immediately to a private room. The wait was typical but service was immaculate, and superb, and no wonder it’s the Number 5 hospital in the nation. Sure enough, despite my protest I was admitted, even though my temp was only 100.3 the first hour and normal the following 6 hours I waited in the ER. I felt they were making a mountain out of a mole hill, but alas, I cannot take chances, and must give in.

I spent a great 24 hours at UCLA hospital, great considering I was constantly interrupted, sleep deprived, correcting medication orders, trying to get a meal, and not learning anything about my condition. The main tests all came back normal, which is great. The rooms were very large and staff was exceptionally polite and nicely , they were also very infection control friendly. I wondered if I was somehow VIP, coming from Stanford, or because my Dad was a UCLA professor?? Or maybe a No. 5 hospital treats everyone like VIP. Stanford could learn a lot.

I met the lung transplant director who seemed to want to prove all he knew, including leaving his card with me saying, “Google my name, you can read up on me.” Very L.A. He should have known I had little doubts in his expertise. UNOS’ data shows UCLA has the best survival rates for lungs in the country. But also one of the smallest programs. I don’t think he knew who he was dealing with:).

That afternoon, Andrew arrived, and I left a note with my cell phone number on my bed and took a walk. We walked through campus as I remember it as a child when my dad used to tour us around. We walked straight to Knudsen Hall, Department of Physics and with a little wandering knocked on my dad’s lab door. How convenient! Dad walked back to the room with us, and visited a bit, til my nurse told me I would be staying a few days. I had no fever, was only on oral meds, and just waiting for test results. It was unacceptable. As usual I was told ambivalent information about my discharge and I had to make a big fuss to talk to the right people to finally get the order to go home,rather than wait another night exposed to hospital germs. I am in my element when it comes to articulating my needs in the hospital and I wish everyone could do that without learning it the hard way. It’s amazing how alittle charm and communication can let me get my way, and with a prescription for Tamiflu and Levoquin, we walked out of the hospital by 5:30PM.

I never found out what I have, so I’m still a bit weak and achey. The fear I have is my immune system had one hellava wake up with that fever, so I will monitor myself carefully for signs of rejection, my nightmare. At nearly 7 years post-transplant, I live with the constant fear of when this party will end.

I do not care to share my medical stories with you as I myself am bored to death. I do however, want to share this year’s greatest gifts. My greatest Christmas gift were actually someone elses’ gifts. First, my friend at Stanford survived her difficult surgery for a complication related to her lung transplant. Thank you, God. She is now back in a regular room and her recovery and resilience amazes me. Imagine being told you’d be given a new life, after years of illness,then having a transplant and going down a path of one life-threatening complication after another, months and months in the hospital and never feeling normal and constantly feeling pain. There is all the reason to give up, to be angry, to feel sorry for yourself and fall into a dark hopeless depression. But this friend just hangs in there, grateful for what she has but persistently holding onto hope and life, making small goals and focusing on them ahead. While I can simply walk away from observing this suffering which reminds me of what’s to come, I do not. Why? To witness this is a privilege, as it is this grace and dignity that I absorb for my rough days ahead.

Secondly, a tremendous miracle has occurred in Japan!! Our friend Akihiro, who at 21 is the oldest Japanese CF patient, was placed on the lung transplant waiting list around June, 2010. He has battled end-stage CF for so long and ‘lives to show Japanese people with CF can live as long as American CF patients’. The normal waiting list for lungs in Japan has been around 4 years; but with the enactment of the new transplant law in July 2010, there have been 27 organ donors since July which have saved 127 people. Last year, there were 9 brain dead donors and it’s a huge, huge step forward! The Japanese people are starting to save those who need organs.

On Christmas Day, Akihiro received the gift of lungs!!!!!!! A believer in angels (but perhaps not Christ), he received his Christmas wish! What an amazing miracle, after only 6 months on the list, he received the breath of life!!!! THANK YOU to his Japanese organ donor! May God bless his donor family forever. Akihiro was the first CF patient in Japan ever to be transplanted! And the lung transplant  surgeon, renowned Dr. Hiroshi Date, took 12 hours to do the surgery, sharing that the ‘adhesions’ were very challenging.  Most CF patients have so much scarring, their lungs stick to the chest wall causing large amounts of bleeding. It is Dr. Date’s skill to still complete this surgery so successfully. After Akihiro woke up, he gave the ‘ thumbs up signal’ that he did it. Banzai! He has a long road ahead and we ask you to please keep Akihiro and his family (who are 5 hours away by bullet train from their home) in your prayers. Now, he and our friend Anna M., who are connected through “The Power of Two”, can recover from their transplants together. What a tie this disease offers.

Thank you for reading this long post. I pray you all have had a safe, healthy Christmas and look forward to much growth and opportunity in 2011. Happy New Year to you. We look forward to sharing the next year’s adventures with you. Blessings, Isa

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