Stacey left us this morning. She died just after 9 a.m., after a wonderful, joyful day and evening.
It is hard to describe how much this last week has meant to her, and how she has treasured and valued the chance to connect with you all. Stacey loved you. Her heart was so good and so big, and she loved you. We are crying rivers and we are glad that she is not suffering.
In Thanksgiving spirit today, the first thing that popped into my mind was that I was grateful that the kindness and skill of the Stanford Interventional Radiology staff. It made today one of my best hospital experiences yet.
I’m dozing after spending the day at the hospital for another procedure to replace the jejunal feeding tube. It was a quick, out-patient surgery that was necessary because the little balloon of the feeding tube inside my body bursted, letting the tube pull out too far.
In the pre-op room, I had three friendly nurses, including one of them who remembered me from 2 months ago. It is nice to go places where “everybody knows your name,” even if it is the pre-op room instead of a climbing gym.
I told them the reason I knew to come in [to the hospital] when the feeding tube started coming out was that I had a very painful experience a year ago. “I think the [original} feeding tube got displaced when I was rock climbing.” Apparently, that is not a very common reason, and they had a good laugh!
Both of the Asian nurses had tried climbing and told me about the their experiences. “You inspire me to try it again…it’s so… meditative..” Knowing that she was talking about her first time, I was confused. “Most people are scared to death the first time, and hang on for dear life as they near the top!” She said she was calm because trusted her belayer [friend holding the rope for her] completely. We continued chatting about climbing and how wonderful the sport is, because you get stronger and it’s also so fun.
After that, she said she (unfortunately) has the honor of putting in the IV needle. “Honor?” How sweet and respectful is that! She found a vein on my arm (IV’s on the hand hurt more.) She then succeeded in inserting the needle on the first poke, and it hardly even hurt…it felt like a little blood draw.
The nurse on the other side of me was also a gym climber. She said she should get out her harness and start climbing again, but she was worried that she was out of shape. So, I said it’s best to start out again on the slab climbs. That way, she won’t even notice a difference in a recent weight gain, because almost all her weight will be over her feet.
Back to business: after explaining to her that there is no way I could be pregnant right now, I was spared the pregnancy test. She went on to review my long medical history, and over 20 drugs and vitamins I take daily.
A young surgeon popped in with a smile, and assured me that the balloon on these feeding tubes burst at random, and I was not at fault. In fact, he said he was amazed that my previous tube had lasted a whole year. However, I did not have time to ask if he liked rock climbing, too.
A new nurse rolled me into the cold operating room. I only had mild sedation, so I was curious if I could watch…Remembering how listening to the Indigo Girls made me cry, ( since it reminded me of a transplant friend who had recently died) I chose to fall asleep to 80’s pop music…
In the recovery room, I awoke very groggy and feeling nauseated, but satisfied that I have a new “button” tube that stays inside now.
Today is my lungaversary… I have survived 11 years!
There have been some dark times in the past 2 years, but knowing there is a chance for a better life through a second transplant lifted my hope! It is the light at the end of the tunnel. To focus on the light is the only way to gather strength and move forward. I have been on the Stanford lung transplant list for almost 11 months.
I am very thankful to my donor. It is a sobering thought to know that my first transplant would not have happened if my donor had not died suddenly, and passed her lungs to me, allowing me to live.
Thank you to my mother, Laura, my sister, Denise Wirth, and my friends near and far. You have nursed me through weak times, listened to me at stressful times, cheered for me during stronger years, and even collectively paid for the majority of my rent! (I need the bigger, 1-bedroom apartment in order for my caregivers to live with me, before or after the impending re-transplant.)
My transplant mentors, Mari Matsumura, the late Ana Stenzel, and Isabel Stenzel Byrnes gave me inspiration and hope and as they conquered huge health challenges, and guided me as a transplant candidate (and later as a recipient.) Isa brought delicious Japanese food over on Friday. This is her twelfth year, too. We are grateful to still be around!
I wish Ana were also here to grow older together, and see what a fine, loving, smart dog Timony has become! Timony must be guided by Rupie’s spirit. (Rupie was previous Stenzel dog.)
Tonight, Alyssa and Bryan came over and we celebrated this day by making bruschetta, attempting yoga, getting used to the selfie stick, and trying to fit into the chair together. (She said to sit on top of her, but I didn’t want to squish her!)
A lot has happened in the last month…some sad, some glad! Some of the sad news is that my friend Gwen passed away; she had a transplant one month after me. She was a loving, affectionate young person and we will all miss her. She suffered a lot all through her life, but I am happy she got to get married to her boyfriend David before she died. She was very religious and I am sure she has gone to rest in peace.
My friend Ana is also having severe troubles with her health. A year ago, she earned a gold medal in the Transplant Games in the butterfly stroke, and now she is having trouble walking, even with oxygen. She is keeping her sprits up, and has many people to love her as she awaits another transplant. Ana had her first transplant 7 years ago, and she recovered beautifully. Please keep her in your prayers.
Greetings to my long-lost readers! I am sorry for not posting in a while. I thought I’d better get on the ball when my mother said, “Now I only check your website every two weeks, and I’m your mother!”
In December and January, I was diagnosed and treated for acute rejection. By mid-February, it was determined that the IV treatments and new medicine had worked and I was cleared of any rejection!
In late February, I had a dermatology appointment to check on skin cancer. I am happy to report there is no evidence of any skin cancer, despite the extreme high risk of skin cancer in transplant patients, and coaching soccer outdoors last fall!
So, things were going quite well, but last Saturday I came down with a nasty cough and phoned the doctor on call to ask what to do. He said to come into the emergency room immediately to get it checked out. So faithful friend and caregiver Dave Allen came and picked me up, and we spent six hours in the emergency room. They did all sorts of tests, including blood tests and nose swabs and determined that I didn’t have influenza, strep throat, pneumonia, or anything terrible like that. In my follow-up visit on Monday, they concluded I had a case of acid reflux, which isn’t so serious. I have since just been sleeping a lot and using over-the-counter medication, but the cough still persists, though not so awful as to keep me up all night like at the beginning.
Despite the cold, I am very pleased to be climbing at?my highest level since the transplant. I’ve started a new goal chart I wrote for myself. It is comprised of 100 climbs rated 5.10a-5.11b that I’m going to climb without falling (on top-rope.) The hardest part will be completing the 20 climbs rated 5.11a or 5.11b. The Friday before I went into the emergency room, I surprised myself and some friends by climbing a 5.11c without falling on only the second try! I am now almost half-way done with the goal chart; I have done 45 of the 100 climbs.
A lot has happened over the winter vacation, including receiving the 2nd year annual check-up results.
The good news is that I had a wonderful, relaxing vacation with my mother for the Christmas and New Year’s holidays. She came to visit me from Florida, and we had a delicious meal of stuffed chicken, green beans, potatoes and carrots. We also had a sweet New Year’s Eve get-together with Mark and Dave. We ate homemade sushi, stayed up until midnight, and watched fireworks from the balcony!
The bad news is that I am putting all the fund-raising money to good use already in 2007. The bronchoscopy results showed evidence of A2 (acute rejection) and I have been to the hospital for three days of IV treatments of high-dose predisone. I will have another bronchoscopy on Feb. 2 to test the results of the treatment. It is somewhat mild rejection so hopefully the medication stopped the downward progress in its tracks.
The only symptom was that last month I was having trouble climbing 5.11’s at the gym. (This symptom has varying degrees of validity with the different doctors.) The great news is that on Wednesday I completed two 5.11a’s and a 5.11c (with several falls.) I felt stronger and did not have coughing fits after the climbs, so I think the treatments have worked, and I will get better.
I have also started a new full-time job as a program coordinator at the Little Gym, a motor-skills/gymnastics school for children. I am working 42 hours per week, running around with the kids and it is going to be a big challenge for me. So far the training is going pretty well and I am looking forward to working with the little children.
Thank you so much to all the contributors to the 4th annual Mt. Everest climb-a-thon, including Mary Zasio and Rob Trelford, who did a very successful make-up climb-a-thon in January! Mary climbed with an injured ankle and raised over $1000 herself!
My friend Ana Stenzel is in the hospital this week, fighting rejection as well. She had a double-lung transplant 6 1/2 years ago and is losing lung function quickly. Luckily,she was in great shape to start with. If you know Ana and would like to send your best wishes, please e-mail me at [email protected] and I will pass your message on. She remains one of my best friends and a great inspiration.
Tori, thanks for posting the pictures and keeping the website going. Felix, I hope you are surviving the snow in Colorado!
Thanksgiving in Seattle was fun and interesting. I saw Angie, and we spent the first day browsing Pike’s Peak Market. There were a lot of tourists, different types of food, bright flowers, and fish being thrown around the display cases. The next day we went over to her cousin’s house and had a huge turkey dinner. I also met the newest addition to the family, baby Dalin. On Friday, we went to the huge Seattle REI and I saw my friend Stephanie Rowe, who moved to the Seattle area from the Bay Area a couple years ago.?During the?whole trip, it was very cold and rainy. I don’t know how the Seattle people deal with the weather so well.
The big news in December was the 4th Annual Mt. Everest Climb-a-thon. 27 climbers got sponsors and gathered at Planet Granite Gym on Dec. 3rd. Joshua Levin, 12, was the guest of honor. (Joshua was on my climbing team and took private lessons from me for five years.) Josh did a speed climbing demo and climbed a 50′ 5.7+ route in 11.72 seconds. Everyone else climbed their hearts out, too, and collectively climbed well over the height of Mt. Everest. In fact, they almost climbed it twice, achieving a collective total of 52,741 feet. Lei-Lei Shi was the top fund-raiser, and also climbed over a vertical mile in three hours! I am so grateful to the many friends who volunteered, climbed, and sponsored the project this year!
This week I had my annual check-up for my transplant. I am finished with all the tests now. On Monday, I had a physical and a bone density scan. Tuesday, I had a bronchoscopy. Today, Friday, I did an x-ray, a draw, a Pulmonary Function Test and a six-minute walk. I did a little better (than last year) on the six-minute walk–1950 feet. It was a brisk pace, but my oxygen saturation level did not go down below 97%.?The PFT was about the same. I haven’t gotten the results back from the rest of the tests yet.
It has been a good building year. I am happy that I had a chance to compete and earn the badminton gold in the 2006 Transplant Games,?as well as?spend time with the family there. Climbing has been going well; I took a few?small, local road trips this year and have been top-roping some 5.11’s lately in the gym, something I didn’t know if I would ever do after the transplant. I am also glad I have been healthy enough to coach soccer this fall, and I am looking forward to the holidays. I have kept old friends and made many new ones this year, and my family is closer than ever.
Many warm holiday wishes to all of you who have supported me throughout the year and shared the joys of my new life!
Felix, thanks so much for your note! I am going to start volunteering for the Lam Foundation to help raise awareness for a cure.
I’m up early today to catch a plane to Seattle to see my step-sister Angie for Thanksgiving! I just wanted to let everyone know that today is my official transplant birthday. I’ve been the proud owner of new lungs for two years now!
Things are going pretty well. I’m still at about 50% lung capacity but I can do almost everything I want to do, although I would like to be able to hike and carry a pack so I can take climbing trips with my friends. I’ve held a job for the season, and I’m looking for a more permanant situation. I have my annual check-up (two days of tests) on Dec. 18-19.