Day 111

Hi. Well, I guess I'm not invincible like I thought. Had some swelling all along the incision, so I called my Transplant Coordinator who called the doctor who said come in Monday. So I went to the hospital Monday and he said that the wound was fine and that I probably tore scar tissue inside when I carried the 2 cases of water into the house from the car. Then he proceeds to tell me that they learned from the last biopsy that I had a fungus growing in my lungs. He didn't seem really concerned and he put me on a 90 day antibiotic treatment. I have to go back tomorrow to have blood drawn for lab work because this antibiotic is tough on the kidneys. They have to reduce the anti-rejection medicine Prograf, because it is also tough on the kidneys. Wow, what a balancing act. Now you know something like this wreaks havoc with your mind. I feel good, albeit still low energy. I have a little bit of a cough, but feeling good. Sleep is an issue once more, can't get more than 2 hours of sleep before I wake up and start thinking.
   My Dad came down this week. We had lunch yesterday. He looks good. My sister, Chris and her husband Andy invited us to meet them in Orlando for the weekend. Chris has had health issues recently so I haven't seen her for quite some time. Thank God she seems to be back to good health. It should be a great weekend. Oh, we're also going to see Andy's brother Matt and his wife Joanne. Matt and I actually went to high school together and started a fence company, (short lived), while in high school.
  I asked the doctor when am I really going to see a vast improvement in my ability to do things or is this as good as it gets? Remember they said at 3 months I would feel 20 years younger. Didn't happen, I feel good and I don't have to use oxygen, but not 20 years younger. Anyway, he said because I had the stroke, my rehab has been slowed. He said I will definitely see a great improvement at 6 months and then even more at 1 year. I hope so. This is really frustrating. Everything I do is a struggle. I know it could be a lot worse!
   Enough boo hooing, I am really thankful for everything. Every once in a while the mind goes to a dark place. Thanks to everyone for their love and support. Thanks to everyone who ordered cookbooks. Especially, thanks to everyone for their donations.
   Now, go out and do something good for someone today.

Day 104

           I know it hasn't been a week since my last post. Good news, I got a call with results from Tuesday's biopsy and clinic. Biopsy came back negative. No rejection and no infection. Lab work came back great all levels are good and kidney function is good. They also cut back on some of  my steroids from 20 mg per day to 15 mg per day. The goal is by the end of the first year to have these steroids down to 5 mg per day. I also asked if they thought that I would be able to stop the insulin injections at some point. The answer was an educated yes. Oh, and now clinic will be once a month instead of every two weeks. Yeah!
         I started walking again, after getting scolded at the hospital on Tuesday. Somewhere around 2 miles per day. I'm over the 7 to 10 mile walks. Remember it's mid 90 degrees here.
        These are the reports that I like to hear. It shows real progress and it lifts the spirits. Have a great day.

Day 102

     Had my lung biopsy this morning. Had to be at the hospital at 6 a.m., and Lovely Linda had to drive me. She also picked me up afterwards at 12:00. This was a rough procedure. Not sure why, but while waiting for Linda I felt like I was going to pass out and felt nausea as well. Came home and slept until 4:30. Feeling better. I was told that I need to exercise more, that is the only way to build the stamina. Okay, I already knew that but I guess I've been lazy. Going to look into a low cost gym in my area.
     Thanks to Linda's push,  I've begun trying to give back in my own small way for this gift of life. I am getting re-involved in a website called Transplant Buddies. When I was searching for information, this was a great resource. It is a web site that people that have had transplants can share their stories. It is also an area where people who are diagnosed with ailments and may be in need of a transplant can go and ask questions and get more information about the process. That was something that I felt was needed, a place to get specific information. Not just medical information from doctors and hospitals, but actually experience information from someone who has gone through it. It is a scary prospect learning that the only way to get back some quality of life and continue living is to have an organ transplant. Who'd a thunk it? Something like this that usually happens to the other guy actually is happening to me.
    I've been discussing moving with Linda. It is too much to try and keep up this house and we need to cut expenses, so we are thinking condo. We have to stay close to here for Lin's job, which enables us to get health insurance albeit expensive. I also need to stay close to the hospital, which seems like my second home. I visit every 2 weeks. Anyway, we'll see.
    Most importantly, I'm feeling good. Wow, can you believe no complaints from me? I've got a lot of ideas in my head about other ways to continue this journey and to contribute to society. Don't just go through life, let's participate. There is a lot of anger out there, especially now with the economy, the Gulf crisis and other world events. Let's start showing more compassion in our little world and watch it spread. It could turn into an epidemic, a good one. Take care.

Day 96

    Passed the 3 month point. Feeling good. Just disappointed with the level of stamina, or lack of stamina. Still weak on the right side, but overall I feel good. My appetite is good, maybe too good. I've gained another 3 pounds. Better start slowing down. With the energy level low, I don't burn as many calories as I need to maintain a low weight. Trying to maintain at 175 lbs, I am at 174.
    Linda and I went on a road trip to Kentucky to visit our good friends Mike and Gloria. They just transferred to Louisville from Portland Oregon. Beautiful house, beautiful area and such good friends. Thanks for a great time. We drove up on Friday and returned Tuesday. Good trip, except it took two hours to go through Atlanta. The trip turned into a 15 hour ordeal. Fortunately we broke it up into 2 days.
   It's hot here in Florida and that makes it more difficult to get out and do things. Especially in my condition, I have to cover up and protect myself from the sun. Hat, long sleeves, long pants and sunglasses are usually the dress to do outside tasks. My immune system is compromised by the medications that I am taking. Remember the doctor said that it is not if I will get skin cancer, it is when will I get skin cancer. Boy, if that's not a pleasant thought. Speaking of doctors, I have a lung biopsy on Tuesday the 8th. Wish me luck.
   It seems that every week I am ordering more medicines, what a mess. Thanks to all for their support, it really helps offset some of the medical expenses. Hopefully at some point, I can repay your kind generosity.
  At some point in the near future I am going to explain, in detail, the psychological impact of this disease, the transplant and post transplant. You don't know how many times you think about death throughout the process. I mean an intimate look at your mortality, and whether this is your time to go or not. I never saw the white light or anything, but I felt sure that I couldn't take anymore. But that is for another day.
   An interesting perspective that I heard this weekend is, when you are beginning to get frustrated by someone, step back and look at them from another angle. Not physically! Look at them as a neighbor or mother or brother, not as a salesperson or work mate. Try to understand there perspective.