Wind Song Journal

Monday I attended a LAM support group meeting at Stanford Hospital. There were quite a few people there. One of my doctors, Dr. Roland Nador, gave a presentation on Pulmonary Function Tests. There are 42 LAM patients in the SF Bay Area. If you are a LAM patient and would like to get involved, feel free to e-mail me for more info. I’ve also been indoor climbing with my friends again. Each time I feel a little bit stronger. On Monday, I climbed with Felix and then we came home to stuffed green peppers I had made the night before! Tuesday, Rene and I climbed during the day, and tonight I went to the gym to meet Cindy and Amanda. I saw a lot of people I knew tonight and it was a good feeling. I wore a mask and gloves to protect myself from germs, and it seemed to work out pretty well. Stacey, from Belmont

Stephanie, it will be nice to see you when you’re in town! Thursday was full of surprises. Clinic did not go so well; the PFT showed a drop in performance even though I feel like I am getting stronger. Isa just got back from Japan, and she and I met to go to Ryan Park. There is a great walkway around the lake that we used to open up our lungs. The water was gorgeous, (a deep blue hue)and the breeze felt good because the day was so hot. After the walk, which was about a mile long, we played tennis! It was very fun, and rather amusing since neither one of us have played for five years. We had technical difficulties because we only had one tennis racket, and whoever had to use the short racquetball racket would have extreme ball control problems. Isa used the short racket first, and after a while we switched. After five minutes, I attempted to run to a backhand shot but ended up falling all over the court! My legs just collapsed when I tried to sprint, but I am sure things will improve with time. Nevertheless, we ended up getting in a few good volleys and were delighted to find a new way to exercise. Of course, after falling, I knew I could not run to the ball so I just hit the shots that came within a step or two. We played for an hour and it was good aerobic exercise for us transplant patients. The added challenge of hitting the ball and keeping the ball in-bounds added a lot of fun. Who knows? Maybe we will get good at this if we practice more. Life other than exercise sessions is mostly based on trying to shop and eat correctly to gain weight. Unfortunately, I am still having trouble keeping food down every day, so it’s a real problem. It worries me at night, over the long term, but there’s nothing I can do except try to keep eating properly. The doctors said to gain weight so I’m doing my best to cook good meals for Dave and me, and any of my other friends who can tolerate my non-fat diet. Stacey, from Belmont

Hi everyone, Just a note to say things are going well here. I went for a two-hour hike at the Stanford dish last weekend with the Levin family. It was great to be with them and enjoy the fresh air. The boys, Joshua and Yuri, are off to Oregon to participate in a qualifying competition for the National Championships in for USA Climbing. I am so proud of them. I am at the libary because I’m having problems with my home computer. Hopefully, the problem will be resolved soon. More later, thank you for all your support. Stacey, from Belmont

Yesterday, Eva, Howard, and Eva’s niece and nephew took me on a mini-hike to Laurelwood Park. It was a short trail but the views were wonderful. There were all sorts of different trees in the valley. It was the first time I had been on a hiking trail since I’ve been out of the hospital and it felt great. The most exciting part of the hike was at the beginning, when a snake crossed our path. Six-year-old Alec was so scared, he insisted on being carried the entire hike through the “wilderness,” by Howard and Eva. It’s a good thing it was less than a mile long! Today, I had a great day with my friend Mark. He came over for lunch (shrimp and asparagus) and then we turned on the TV to watch Danika Patrick participate in the Indy 500. She came in 4th place; not bad for a rookie! After the race, we went to the Planet Granite climbing gym where I got back on the walls again! I started off easy, and managed to get up two 5.6’s and two 5.7 climbs. The longest climb was 50 vertical feet. I had to rest a little on that one! We left the gym and went for a walk with his friend Agnes. We walked around a beautiful lake in Foster City, and spent the afternoon talking and admiring the view. There were wind-surfers out on the water today, along with some Mallard ducks. Stacey, from Belmont

Sasha, thanks for writing! I hope your injury is healing nicely. I’ll e-mail you. Wednesday I had a procedure done by Dr. Olsen and Dr. Dhillon to drain the lymphatic fluid from my lungs. The exciting part was not actually the procedure, but the ride to the hospital. We were just turning off El Camino, about 5 minutes from the entrance when I started heaving and throwing up dinner from the night before. Well, Dave had one hand on the wheel and the other hand unrolling gobs of paper towels to hand to me. Not a drop made it to the car seat or my clothes. I was very impressed with poor Dave’s “nursing while driving” skills. By the time we arrived at the hospital entrance, I had nothing left in my stomach and I was feeling comparatively better. It was a simple outpatient procedure done in the ATU unit of the hospital. They gave me a local anesthesia, then inserted a catheter into my lung and drained the fluid into a clear glass bottle. I was surprised how much fluid came out! It was 700 ml, almost 3/4 of a liter! It looked like milky beer, complete with a froth on top. It was hard to imagine that all that fluid was inside of me and taking up space in my lungs. Stacey, from Belmont

I had clinic today, which means a morning of blood draws, x-rays, a Pulmonary Function Test (PFT) and a meeting with the doctors. The PFT showed a little bit of improvement, with lung function (forced inhaling capacity) at 56% of normal. After the hospital visit and a healthy lunch of wheat bread with tomatoes, sprouts and cream cheese (non-fat, of course!) I went to Twisters to say hello to Ron, my old boss, and the Twisters kids, I went for a walk by myself at Shoreline Park. The weather was perfect. The late spring breeze felt good, and the exercise opened up my lungs. The grass has turned green from the spring rains, unlike the normal California yellow. Today I even noticed orange flowers at the baylands, something I don’t remember seeing before. Lately, Dave has been pointing out the beauty of the full moon. I hope everyone has a chance to look outside and enjoy it this week. Stacey, from H.O.M.E. apartments

Denise, thanks so much for writing! It is always entertaining to hear about your girls. Today marks my six-month anniversary from the transplant. Coincidentally, we are moving out of the hometel and going back to my apartment in Belmont tomorrow. I went to the cactus garden by myself today, to reflect a little bit on what has happened in the last six months. Recovery was going great, and then I had the big set-back, and now the second recovery is coming along. It is a slow process, but I am glad to have survived such a close call on my life. At first I thought I would have to start at ground zero, but recovery is going a bit better than I expected. Yesterday at the gym, I made my first walking goal, walking a mile in 18 min. 40 sec. Treadmill workouts are funny, if you set your machine at a certain pace you have no choice but to keep up without falling over. Stacey, from H.O.M.E. apartments