Day In and Day Out

So it’s been a month since my last update. It’s been an interesting month. As I left you, I had just been released from the hospital where I spent several days being tested as to why my liver counts had suddenly gone through the roof. The counts returned to normal, and all tests were inconclusive. The docs suspended the use of one anti-fungal drug that’s critical to my health as it fights fungal infections I may get. My immune system is being suppressed still so I am unable to fight those battles without medical assistance. That drug was replaced with another that has all the same good capabilities but it doesn’t affect the liver. The down side is it’s a liquid. I take a spoonful 3 times a day, so it’s a little inconvenient as compared to a pill, but since we made the switch, the liver counts have been normal for 4 weeks now. I guess I’ll stop complaining.
Fatigue has been a factor recently. I’ve been doing some research on the matter and it seems the fatigue I’m dealing with is not your basic tired. Chemo or drug induced fatigue is very common and can last for years. It is not necessarily alleviated by sleep. In other words, I can be very tired, take a nap and wake up tired. Other times, I can’t get to sleep or stay asleep. Recently I’ve been sleeping poorly at night and been tired all day. I listen to my body and sleep when I need to. The doctor gave me a sleeping pill that helps me sleep at night, but sometimes it’s hard to wake up in the morning. It may take 2 hours to become functional. Other times I wake up ready to go. I started physical therapy 3 weeks ago and that has helped.
My physical therapy sessions take 2 hours. We are working the major muscle groups while focusing on the legs and back. As a result, I routinely walk 1.25 miles without pain. More importantly, before the physical therapy, my calves would become so tired at .25 to .5 mile that I could not lift my feet properly. My walking was at a 30 minute per mile pace. Yesterday I walked 1.25 miles with no pain, and calves working properly at an 18 minute per mile pace. My goal is to walk 50 miles this year since I was released from the hospital in March. The other goal is to ride STP in July 2009. Incidentally, I’ve been riding 2.5 miles daily on a stationary bike. The real bike is out and ready and gives me about 2 miles each time. It’s now a lot easier to do that 2 miles and I expect to increase it next week.
My steroids have been reduced several times. When I left the hospital last month, I was at 30mg daily. I am now at 15mg, having reduced it yesterday from 20mg. That pleases me on several levels; I’ve been taking it for a long time and it has some negative effects not the least of which is beer belly and fat face! It also acts as an immune suppressant which is good, but we’d rather use it for that as needed rather than on a daily basis. The immune suppression is more easily controlled if we do it with one drug, rather than two. Then we could use the Prednisone as a stop gap if needed. I look forward to the day I am off it or requiring a dosage less than 5mg daily.
Dave Albertine visited for a week. The first two days we did nothing. He asked me if this is what a vacation feels like. Poor guy hasn’t stopped since the third grade! The rest did him good. On day three I put him to work. He moved 21 forty pound bags of potassium 3 times as we moved them out of the way, then we build a shelf under which they could be stored, then he filled the garbage containers purchased for the purpose, then he put the containers under the shelf. It took a good part of the day, and he did ALL the heavy lifting. Thank you David, I could not have done it myself. The next day, I removed the screens from the downstairs windows then took a nap. While I slept, David cleaned the outside of all the windows. Another project checked off. Another day we went to San Francisco for my clinic visit after which we went to China Town, then to the Wharf where we had lunch at Scoma’s. A great day in the city. He got a pretty good glimpse into what goes on around here on a regular basis.
This morning, Beck’s sister Martha left for home. She visited for a week. Her stay wasn’t as fun filled, but we did get to San Francisco for a clinic visit followed by (wait for it) lunch at Scoma’s. She did clean out a couple of closets (check off another item on the to-do list). Thanks to you Mart for all your help around here.
Today is day 196, Sunday will be 200. No special significance, just a nice round number. I am in communication with a friend of a friend who also had a transplant. His disease is different than mine, but his therapies are similar. He is responding differently, but we are kindred souls none the less. It’s nice to talk to someone who knows what it’s like. Keep a good thought for Gordon.
That’s it for now. Thanks again for the calls, emails and letters. As life settles down to a somewhat mundane existence, I feel good and look forward to continued improvement in the coming months. Love to all.