Category: Random Musings

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

Monday, I got up at 5:00 a.m. to get to the hospital by 6:45 for morning lab tests. These included x-rays, urinalysis, a blood draw, a Pulmonary Function Test (including a six-minute walk test) and an Echo study. Tuesday was another early morning. I checked into the hospital at 6:15 a.m. for my bronchoscopy. I was given the anesthesia at around 8:30 a.m. and did not wake up until around noon, in the recovery room. No memories! I felt okay, but very groggy. Dave took the whole day off work and spent the evening with me. I really appreciated his support. Today, I’m back at the college, trying to get caught up in my classes after all this hospital business! Stacey, from Belmont

This week I was very busy with finishing the newsletter for the Transplant Recipients International Organization. It was the first issue I have published. I think it turned out fairly well. If anyone is interested in a copy, let me know. The cost is $15 for a year’s subscription. With the newsletter done, I had the opportunity to go to another Youth Climbing League comp to cheer on my old team and climbing students, and chat with many of the parents. After the competition, the Levin family had me over for dinner. It was a tasty Thai curry chicken dish! Afterwards, I went home to play Scrabble with Dave. Today, I gave a climbing lesson to my student, 13-year-old Ilan Gray. He is getting pretty strong. Much to my delight, I found out that he did the most pull-ups in his class in a P.E. test last week! About four years ago, I had given him a pull-up bar and it looks like he has been using it. He is also improving his bouldering skills; he has jumped two levels (from V0 to V2+) in just two months, and has joined the Twisters competitive team. My climbing is also going well. I have reduced my current 5.11d project to only two falls. I have yet to send (climb without falling) any 5.11’s on top-rope but I think it’s going to be in the next couple months. Tomorrow I will have my annual physical, along with several hospital lab tests. Tuesday, I will have a minor surgery called a bronchoscopy, in which the doctor takes a small sample of lung tissue and tests it for signs of infection or rejection. Stacey, from Belmont

Denise, Thank you so much for the ski picture. It is adorable! I’ll bet Sophia picked up skiing quickly. That’s great you are able to rent a cabin with friends. I have had a busy weekend. On Saturday, I attended a Youth Climbing League competition in Santa Clara. It was great to see all the kids having fun and visit with the parents. The YCL director, Allison Levy, is having a silent auction fund-raiser for me to help with expenses for the U.S. Transplant Games trip in June. On Sunday, I got sick at the coffee shop…it surprised me, because I have not thrown up for a couple weeks and thought I was over it. The nausea was short-lived, and later I met a friend named Kent to climb at the gym. It was a great climbing day…I worked my way up a 5.11d overhang with four falls. It was the best climbing I have done since the transplant. Later, on a climb next to me, a 3-year-old was crying, stuck and scared 20 feet above the ground. My inner youth coach took over, and I climbed up to comfort her and help her down. She calmed down quickly and made it safely to the ground, much to her relief. Sunday night, my friend Cindy had Dave, Kent and me over for dinner. She made Tandoori chicken, salad, and sauteed apples. We all brought food to add, and it was really enjoyable. It reminded me of old times when we had a tight group of climbing friends. I look forward to hosting a dinner at our apartment. Today, I am working on classes and the newsletter again. They keep me very busy. I am much happier being busy and learning new things these days. Stacey, from Belmont