Category: Random Musings

It has been a good week. On Friday, I joined Clare and Isa at the track. We had a great time practicing sprints and the long jump. Isa did a personal record of 9’1″. Last weekend I went to the Pet Parade with Isa. She dressed her dog Rupie up like a doctor. It was very cute. We also volunteered at an art exhibit called the Breathing Room, at the Root Division Gallery in San Francisco. It is a moving show of photography and poetry about living with Cystic Fibrosis. Check out the website, www.breathingroom.org You can also view the TRIO newsletter that I edit by going to www.bayareatrio.org. Stacey, from Belmont

I had a fun breakfast with Mary, ten drove to Stanford for a blood draw. After the blood draw at the hospital today, I went to badminton practice. We worked on long serves. Later tonight I will climb with some friends at the gym. Stacey, from Belmont

Mary, I guess I do like to set records. If I get specific, I can make some good ones up. (Best climb in the Bay Area by a double-lung patient whose name is Stacey.) Trying to enjoy life and not think about longetivity. I’ve learned that life is unpredictable. Honestly, I’ve had a lot of dreams broken in the last couple years. I do feel sad and discouraged sometimes, and it’s hard to write about that in the journal. I want to be strong, and I don’t want to admit my weaknesses or ruin other people’s hope. But now that I am getting stronger and living more normally I am getting ready to make up some new goals. And I take life as it comes. One thing to be grateful for and look forward to is the Transplant Games. I am now making plans to go and meet my family and friends in Louisville, Kentucky. In addition to badminton, I am entering a swimming relay, and will be doing the backstroke for 50m. I am also starting a summer internship with the City of San Mateo today. I will learn about some new mapping technology. Stacey, from Belmont

Felix and Mary, thanks for writing! I am excited about being able to do 5.11’s, although I still have trouble with the overhanging climbs. To make myself feel good, I do balancy 5.11’s! I have also been swimming at the Pacific Athletic Club. I am up to 20 laps, resting after each one. Since I am going to enter the swimming relay, I am going to start practicing 50m laps, since that is what I am going to do in the relay. I have also been practicing track and field with Isa and Ana. We went to the track on Saturday and she ran circles around me. It was a very cheerful and inspirational experience to watch how strong and healthy she is becoming! But we are pretty even when it comes to 100m sprints. I cannot run very fast compared to before I got sick. When I run, it feels like slow motion. But I am definitely running. It feels good to be able to run, even if it is only a short distance. I have also had to go the hospital quite often to get blood draws. I am getting used to getting stuck with the big needle. The technician reminded me that it hurts more when you watch, but I like watching the needle go in. While I was walking around the hospital, I ran into another transplant patient named Mary. I found out that she is a heart-double lung transplant patient and she has survived for 15 years. That is almost the record that I have heard of for a lung transplant recipient. She seemed healthy, but she has to come to the hospital twice a day for IV treatments. She gets attached to one of those IV poles for a couple hours. Stacey, from Belmont

On Thursday, I had a wonderful dinner with Isa and Andrew, and played with their adorable dog, Rupie. Friday, I had my monthly octreotide shot at the hospital. It was not too painful, but made me sore so I just watched at badminton practice instead of playing. Saturday, Rene and I took a walk along the Steven’s Creek trail in my old neighborhood in Mountain View. I have many memories of walking along that trail with my oxygen tanks, and it was nice to travel without all that equipment. It was the first nice day in a long time. It has been raining constantly all throughout the month of March and the beginning of April. Sunday, I spent at Twisters with Ilan, Mary and Michelle. I did a climb and much to my surprise, flashed a 5.11b! Then Rhona invited me over for lunch and then we took a walk to the Dish from her house, near the Stanford campus. Later that evening, Dave, Eva and I celebrated Eva’s birthday at my house. I made avocado and tuna sushi for the occasion. Somehow, it did not turn out too pretty but it sure tasted good. Monday, I had clinic at the hospital. The x-rays showed that the fluid is dropping so I do not have to have a thorocentesis, (tap of fluid around the lungs.) Also, my PFT showed that I am now at 63% of normal, the highest since before my setback last year. Later, I attended a support group for patients with LAM at Stanford. Tuesday, Robin took me to lunch and we had a great time! We went to Kamei Sushi Restaurant in Mountain View. It was wonderful to see her, since she is a very busy lawyer these days. Later, I climbed with Mary at Belmont. I perservered up two 50′ 5.11 climbs but fell quite a bit! Stacey, from Belmont

After badminton class today, Javier and I went to the Golden Gate Badminton Club in Menlo Park. One of the founders of the club, Mike Yang, gave me a warm welcome and offered to sponsor me for the U.S. Transplant Games. He gave me two rackets, wristbands, a shirt, a discount on shoes and a good luck bear. I am a sponsored athlete now! I would like to thank the GGBC for their generosity! Stacey, from Belmont

Yesterday was a good day. The coach had us pick numbers for partners and we played a doubles tournament. Surprisingly, I won 3 out of 4 games. I felt good that I could keep up. After badminton I went out to dinner with the team. I tried to recruit them for trying rock-climbing, but was only able to hook one person, Stephanie. Stephanie was an Olympic alternate in badminton ten years ago, so she has the confidence to try lots of sports. Later, I went to the climbing gym. I climbed with Kelsey and Laura, who climbed in the December climb-a-thon for me. I led a 5.9, then then tried a 5.10b that they were doing and got stuck about 25 feet off the ground because it was a big roof and the rocks were far apart. Stacey, from Belmont

Last Thursday’s tests went pretty well. My PFT score was 57%, a little lower but still within a good range. I continue to play badminton with the team. They are good players, and I have a lot to learn. I am finding it a very humbling experience to play actual games. I tend to lose a lot, but I am hoping that I am at least improving my skills and fitness level. The assistant coach, Jon, showed me some important moves for singles strategy that I’m hoping will help my game. To me, sports are more than a game. Participating makes me feel more alive and gives me a sense of accomplishment because it is working towards improving my health. Stacey, from Belmont

Mary, thanks for your note and your encouragement! I am at the hospital again for a blood draw. I am getting used to them and do not mind being poked that much. Tomorrow, I will come back to the hospital for a clinic day. I will have more tests, including a Pulmonary Function Test. I’ll see the doctors and I’ll keep you all up to date on the progress. Dave (my housemate and caregiver after the transplant) was in the hospital last week with Crohn’s disease. Since it is not contagious, I was able to visit him three times. (I wore a mask while I was in the hospital and was very careful to wash my hands of any germs from the hospital.) Dave got out of the hospital yesterday and is recovering at his parent’s home. His spirits seem to be okay, and he is eager to go back to work. I am at the hospital cybercafe. I have so many memories of this place. Mostly I remember not being able to sleep because of frequent visits to my room, and early morning noise. But there are good things, too. I remember some very meaningful and deep visits with family and friends. It was a time of need that brought out the best in people. That support that people mustered from their busy lives was crucial to my survival. The Stanford hospital music and art therapy programs are also very good, as well as the dog-visiting program. A guitarist came to my room, and the art therapist was very loving. Funny-looking dogs came to visit. (None as cute as Isa’s dog, Rupie, however.)Beautiful art lines the walls, and there are gorgeous fountains and flower gardens outside. The doctors are kind and knowledgeable, and they used to visit every morning. I am grateful to be a Stanford patient. Stacey, from Belmont

Hi Denise, It was great talking to you on the phone this morning! Thank you for the picture of Sophie and Lacidaci. I’m feeling fine this morning. It is a relief to know that I can get sick and survive without going to the hospital. It was the first time since I have had a transplant that this happened. I spent yesterday morning at the hospital for tests. I have a PFT score that is the highest since my setback, 61% of normal. So the chronic rejection must be receding. Stacey, from Belmont