I’ve Made It Two Years!

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.

More later!

Nice Work

Good write-up, Stacey… very well written! I hope you have a wonderful Thanksgiving out there. When is your next checkup? It is very soon, right? Hope that goes well and have a great time out there! -Felix

A Climber’s Thanksgiving Gift

Felix, thanks for your note! I am glad you are eating well.

Here is a story I wrote about my transplant experience for all to enjoy. It’s a bit long, but it’s the shortened version!

A Climber’s Thanksgiving Gift

by Stacey Collver
Unknowingly, I was about to reach the crux of my life. But I remember shedding only a few tears that fateful August afternoon in 2003.

“I have some good news, and some bad news,” the doctor had begun. The good news is that we have answers for you. We know why you’re short of breath. You don’t have asthma; you have a rare lung disease called Lymphangioleiomyomatosis, or LAM for short.” He paused for a second, getting ready for his next announcement. “There is no cure for this disease, except to get a lung transplant. The survival rate of five years after the transplant is not great, but without the transplant we expect you to live less than two years.”

“Two years?” I whispered in a feeble voice. I became numb, and shivered in my tank top, both from the diagnosis and the cold air of the air conditioning. Confusion set in. At 35, I prided myself on being in the best shape of my life, competing in rock-climbing competitions and coaching a beloved youth climbing team. I was the president of a national women”s rock-climbing club, sheclimbs, inc.

Confusion turned to tears. I wept alone, quietly, until the social worker appeared. She listened compassionately and started me on the road to handling my new challenges. That afternoon, the doctor prescribed supplemental oxygen and arranged for the tanks to be delivered to my house the following day.

At first I only used the oxygen when I exercised, which consisted of mostly rock-climbing. For 2 months, my lung function held steady. My muscles were still strong and I continued my life as usual. After work, I continued to enjoy climbing by taping a 57′ cord to my face and ascending the gym walls, leaving the portable oxygen tank on the ground.

I was determined to keep having fun at the sport. Climbing was always a great way to spend time with friends and a therapeutic way to forget life’s problems for the moment. When I first started using the oxygen, it was an extra boost and I even set some personal records using it. At the end of August, I took a trip to Yosemite with my friend Mark and climbed the boulders around the historic Camp 4. In September, I climbed at Indian Rock in Berkeley. I continued to guide trips for my team kids to nearby Castle Rock in the Santa Cruz Mountains, with the help of the kids and parents, who carried the oxygen tanks.

By October of 2003, however, I started using oxygen 24/7. Daily chores were more difficult, and my mother, Laura Jeanchild, moved in with me to help me cook and clean.

On my 36th birthday, I had a big fundraiser at the gym where I worked, Twisters Climbing Gym. About 80 people attended, and the event raised enough money to enable me to quit work and start living on disability checks.
When she had heard of my diagnosis, my friend, Tori Winters, made an incredible website (www.windsongfoundation.org) which contained a profile, pictures, and a daily journal to record the news of my everyday life and communicate with friends and family around the world. The journal was so important during this time. I wrote about my hopes and dreams, my observations about nature, and my changing view of the world and humanity due to my recent experiences.

One thing that kept my spirit alive was the international campaign started by past president Carolyn McHale, through the sheclimbs, inc. Sheclimbs members from all over the world got sponsors and started climbing mountains in my honor. The first summit was Mt. Washington, and it went on to summits in Estonia, Latvia, Colorado, Georgia, Mexico. In addtion, there was an annual climb-a-thon in December which brought in much needed funds. Every year, climbers came together, got sponsors, and ascended over 29,035 feet (the height of Mt. Everest) in a climbing gym. The summits were such a great honor and they kept my mind off my weakening state.

The waiting went on. A year passed. I was starting to get depressed, because I didn’t have the energy to do fun things and it was hard to be alone most of the day. Then the physical fear set in…at night I was short of breath and could not sleep, even with the oxygen turned up full blast. By October of 2004, I had trouble talking and laughing. I was dying. My lungs were failing, and I was at the end-stage of lung disease. Would I live to the transplant? One-third of patients die waiting for their transplants. It was beginning to look grim.

On November 21st, 2004, the real “call” came! My friends and family came to the hospital, and I was wheeled into the operating room at midnight. The surgery went very well, and I was making a strong recovery. In the ICU, I could not talk because of the tube in my mouth, and I excitedly wrote notes to my friends, and waved at the doctors and nurses. On the third day, I could stand up out of bed, even with the myriad of tubes connected to so many parts of my body.

By Thanksgiving, a few days later, I was able to take walks around the hospital corridors, and in the following week I walked religiously. The doctors stressed that exercise was very important for gaining strength back. By the time of my discharge, two and a half weeks out from the surgery, I was walking a mile throughout the day.

I was released from the hospital and lived with my mother and friend Dave at the Home apartments, located only three blocks from the hospital. For the next month, I had daily appointments at the hospital for drug treatments, clinic visits, x-rays, and physical therapy. I also had several bronchoscopies, small operations in which the doctors sample the lung tissue and check for rejection or infection.

Due to the excellent food provided by my mother, and exercise sessions with Dave, I continued to grow stronger over the next couple months. Each week, I could breathe easier, and walk further and faster than before. In-between medical appointments, Dave and I became obsessed with climbing flights of stairs. By two and a half months out, I was able to complete 100 flights in a couple hours.

At the three-month point, I fell seriously ill to three causes: the CMV virus, influenza, and pneumonia. Within a few days, I was back in the ICU with a face mask on. To get through the trauma of not being able to breathe, I imagined that I was climbing Mt. Everest, and taking a single breath with each step.

I spent the next seven weeks in the hospital, barely able to get out of bed, and feeling nauseated most of the time. My mother lived with me in the hospital room for the first few weeks. My friends and family visited every day, sometimes just sitting and holding my hand when I was too weak to talk. They brought food, gifts, books to read and movies to watch. Most of all they brought hope that life was going to get better, and this illness would pass. It was their compassion that kept my spirit strong. To keep my eye on the future, I hung up climbing posters of my friends Hans, Scott and Lynn in my hospital room and talked about the sport to the staff when I felt well enough to be social. On good days, I walked to the computer room and wrote in my journal.

It was a humbling time. This second brush with death made me realize how truly vulnerable I was, as opposed to my previous view of myself as invincible. The doctors keep me on IV medicines for weeks, waiting for me to get strong enough to have gall bladder surgery. Eventually, I did recover and underwent the surgery, and was released from the hospital.

The waiting game and the transplant experience turned my world inside out. It gave me a new respect for life, and for the people who showed compassion for me throughout my crisis. It taught me about humility, some broken dreams, and my own mortality. It was the worst of times, but in some ways, the best of times–at certain points I had never felt more loved. My recovery was a team effort of my mother, Dave and all my family and friends. The support from the climbing community was a warm surprise, and continues to this day. And through it all, I strive to keep up the climbing spirit and stay strong.

Onions, Garlic and Mushrooms

Hi Stacey! Just wanted to say hello and thanks for your onions, garlic and mushrooms tip. Right now I am eating chicken cooked in that, with acorn squash and eggplant on the side. It’s pretty yummy. Anyhow, hope you are doing well! I have been climbing more ever since climbing with you and Alyssa, though all of it has been indoors!

Happy Halloween!

Thanks for the message, Mom! It was such a nice visit last month.

Today I am running around in a Spiderwoman suit teaching soccer. I am getting some amused looks as I walk around town.

What costumes are the kids in the family wearing? E-mail me at [email protected]!

More later…back to work! Stacey

Coach

Hi Stacey, Thanks to Alyssa and Felix for the wonderful photos of your birthday party. I enjoyed our birthday visit too. The cooking was fun and the flavor a pleasure. I have been practising my badmitton serve since you again annihilated me on the court. I do take some solace in the fact I am improving and did not literally fall down on the court like our adult male relatives did when you beat them all without even breaking a sweat or your stride at the summer games. And the sauna night was so fun and funny when someone was stranded towelbound with her glasses locked in the locker trying to braile the lock open as you giggled to my, I mean her, rescue. One of the best memories is the delightful scene of you teaching the children. How cute, adorable and precious when one by one took pride in saying “bye coach”. Love, Mom

Visitors

A week before my birthday, I was lucky enough to have a visit from my mother, Laura, who organized my house and cooked and cleaned the whole time she was here! I was busy coaching soccer every day, and she spent her time going to Mollie Stone’s grocery store, and preparing delicious lunches and dinners. In the mornings, I woke up to the smell of big breakfasts already prepared. I will say, she has a lot of motherly energy! I really appreciated her work.

Another big favor she did was she bought a new pair of glasses for me, which is something I hadn’t thought about in a long time. It had been 7 years since I had my eyes checked, and the prescription was very outdated. It turns out that I have been going around with only 80% vision, so I got a new prescription and happily wore my new specs on my birthday.

?On the Monday after my birthday, my aunt, Lorraine and cousin Brenda took me out for a sushi lunch at Miyaki’s. It was a mouth-watering treat and wonderful time.

Not long after my mother visited, Felix popped over for an overnight stay. He is in the Bay Area and has been getting around?by train and bike, crashing at different people’s houses every night. He carries a 30 lb. backpack while riding his bike and sometimes bikes over 20 miles a day getting around! “You look like a hobo!” I teased. We had a delicious salmon dinner and breakfast burritos in the morning, and then climbed at Planet Granite with Alyssa. Felix, our athletic wonder, not only runs ultra-marathons, but also bikes double-century rides (200 miles in a day!) and climbs like a pro. That morning, Felix and I both made it to the top of a 5.12a with just a few falls.

Alyssa also attended the birthday party on October 8th, and has provided some interesting pictures! Just click below.

http://flickr.com/photos/vacationtime/tags/20061007staceysbday/

Felix’s trip report

Hi everyone!

I had a wonderful time at the birthday Mountain of Youth party. Thanks to all who came, and a special thanks to Rene, whose idea it was to have a party!

I have posted the trip report by Felix here:

“Congratulations on making it to your 39th birthday!” read a postcard addressed to Stacey Li Collver. “That’s a good way to look at it,” remarked Stacey with a laugh.

Not taking another birthday for granted is especially relevant in Stacey’s case. A few years ago, she was diagnosed with an extremely rare, dangerous lung disease called lymphangioleiomyomatosis (LAM). The condition is quickly fatal with the only known “cure” being a new pair of lungs. Thankfully, Stacey was able to get a lung transplant in 2004. A couple of years later, she is doing well enough to be able to work, rock climb, and do most of the things she loved to do before LAM aside from, say, biking 100 kilometers on a 35-lb mountain bike replete with U-lock and a gallon of water (something she did in 1999!) Continue reading “Felix’s trip report”

Climbing the Mountain of Youth

Hi Stacey! I had a lot of fun at the Climbing the Mountain of Youth party. I posted a write-up and some photos here. Happy b-day!

Thanks again for picking me up at the CalTrain station on that day to go to Cragmont. I will be going back to Colorado on Tuesday but maybe I can stop by Belmont Sunday. Still trying to figure out my schedule for the weekend. In the meantime, take care and talk to you soon! -Felix