Author: Stacey

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

Felix, thanks for your kind words! I talked to Miki last night, and we discussed high school “chronic rejection.” I’m starting to feel better, not throwing up so much. I had a blood draw yesterday, and I go in for a clinic visit with the doctors today, along with another Pulmonary Function Test. Stacey, from Belmont

Miki, thanks for writing. That is a great picture. Good luck in the relay. I have been feeling sick for the past couple days, not able to keep any food down. I must have vomited five times yesterday. I do not have a fever, so hopefully this is nothing serious. I am going in to the hospital to get a blood test done, and I will probably talk to a doctor as well. Stacey, from Belmont

The fluid tap (thoracentesis) did not work, so I will need to schedule another procedure which will involve an ultrasound so they can tell exactly where to insert the extraction needle. Tomorrow (Sunday, March 12th) there will be an article coming out in the Burlingame, San Mateo, and Redwood City Daily News about my participation on the Skyline Badminton team and training for the U.S. Transplant Games. If anyone is interested in an electronic copy of the article, e-mail me. Today, I participated in the Shamrock Showdown ABS Bouldering competition. I entered the Recreational category since I am a bit of a chicken about bouldering since the transplant. I took second place, which I was really excited about until I realized there were only two people in my category. My biggest win was actually the chalk bag I got in the raffle drawing. Stacey, from Belmont

Felix, thanks for your encouraging note! I will drop you a line soon. I am writing from the Stanford hospital cyber cafe on the third floor. It is 12:45 and I am almost done with my day here…I arrived at 8:00 a.m. and took the PFT (Pulmonary Function Test), then went to have x-rays taken. At 9:00 a.m., I visited with the nurse, social worker, and Dr. Nador. Afterwards, I got my blood drawn, and I have one more procedure left–a tap of the fluid that is blocking my lung capacity. I have good news! The PFT shows that my lung function went back up 10 percentage points, to 55%. This must mean that the new treatment for chronic rejection is working. Dr. Nador said “It is a good sign.” He also mentioned that 43% of transplant patients are currently in a state of chronic rejection, and the further out from the transplant the patient is, the higher the chances of experiencing chronic rejection. Despite the chronic rejection, I have continued exercising (with Dr. Nador’s permission) with the Skyline College badminton team and the sheclimbs group (on Wednesday nights.) I am polishing a lot of skills and learning strategy. The practices are two hours a day, every weekday, and I can barely keep up but I like the challenge. My legs are sore from both running around every day and the octreotide shot on Tuesday. I do not have as much time or energy for climbing, and have been having trouble finishing overhanging 5.11 climbs. Hopefully, with chronic rejection, my greatest loss will only be bearing life without being able to climb 5.11’s. Oh, dear, wouldn’t that be awful. So far, I have not gotten much sympathy for this predicament from my climbing friends. Hmm, I will have to pick up new hobbies and goals to preserve my pride. I think that’s where badminton and the U.S. Transplant Games fits in., Stacey, from Belmont

Denise, thanks for your cute picture of Mia and the funny stories! Felix, great to hear from you again. I am glad to hear that you are rock-climbing again. Unfortunately, I have some bad news. On Thursday, Mar. 2, I went in for a hospital clinic visit and I was diagnosed with “chronic rejection.” I am changing medications and hoping for the best. The outlook is unpredictable. My lung function, which dropped 13 percentage points in two weeks, could go back up, stabilize at this level, or get worse. During the week, time is being taken up by medical matters again. More runs to the pharmacy, and frequent visits to the hospital for tests and procedures are interfering with classes and daily life. Tomorrow, I have an octreotide shot at 11 a.m., and Thursday I will be at the hospital all day with labs, clinic visits, and a “tap” of the fluid in my lungs. With a lung function of 45%, I can still do daily tasks and even play badminton and climb. And all I can do is hope for the best, and have the courage to live life against the odds. The weekend was pleasant. Friday, I celebrated Carrie’s birthday with her family, and I attended Joshua’s red-black belt Tae Kwon Do test. It was very interesting! On Saturday, I attended a youth climbing competition at Twisters Climbing Gym. The director, Allison, held a silent auction benefit in my honor. I was really grateful! Sunday, I gave a climbing lesson, then in the afternoon, Dave took me to see the Calder exhibit at the SF Museum of Modern Art. Later, I had Cindy over for dinner and we had a really enjoyable evening., Stacey, from Belmont

Cherie, thanks so much for your note. I have been thinking about how fun the ice skating party was, too! I have been watching the Olympics, too. I have to admit I became an Olympic couch potato for 17 days. I celebrated my young friend Joshua’s 12th birthday with his family last weekend. It was extra special, because he just won the U.S. Bouldering Championship for 12-13 year-olds in Colorado. We are all very proud of him. I have started badminton practice two hours a day. It is a lot of running around. The drills are good; I think I will improve a lot practicing with this college team. I have still not been feeling too well on a consistent basis. I changed medications and maybe I am just having trouble adjusting. I have been cooking more and gaining a little weight, though. Stacey, from Belmont

Felix, thanks for your Valentine’s greetings. Yes, the bronchoscopy went well. The results from my annual are back. There are no signs of rejection or infection, so all is well. My lung function is up to 58%, a little higher than last time I was tested. In addition to going to school and working on the newsletter, I have been climbing a lot recently. Last week, I on-signted my first 5.11a on top-rope since the transplant so that was encouraging. I find the harder climbs a lot more interesting. I have also started up my women’s climbing club again (sheclimbs)and met some new friends. I have been trying some other activities, too. A couple weeks ago, I played tennis with Ana and Isa. (Rupie, Isa’s dog, wanted to play but she had to watch from outside the fence. Luckily, she had two bones to occupy her.) Last Saturday, I also played table tennis with Robin and Robert, and took a 3-mile walk around the lake in Fremont. Table tennis may be my new event for the Transplant Games! On February 13th, I talked at the LAM support group. The members of the group are not yet at the stage of the waiting list, but it may become their only option for extended lives, since there is no cure for LAM. It was good to be able to share my personal experience with them, and it was something I could do for others. Stacey, from Belmont