First I want to welcome any new readers that have found me through Ronnie's blog. Thank you Ronnie for our nice exchange of words yesterday.
As many know, I am struggling with the idea of becoming activated on the transplant list. I have already been evaluated and accepted at Brigham and
Women's Hospital in Boston. At my last appointment they really expressed that I should be activated. They stated my CF doctor is really concerned about me and has called several times.
Yesterday, my phone rang. It was my CF Doctor, Dr. Z. He had heard that I having a tough time making the decision to become active. I told him I needed more information. Here is a list of why he would like to see me listed:
1.I have a lot of scarring. In layman terms, there is no way to improve your numbers.
2. There are not treatments to add except IVs when I get sick. I already do what they would do for me in the hospital.
3. It takes me a long time to recover from a flare up. This past time I was on IVs for 5 weeks. Which has been the norm lately.
4. My weight. I loose it so easy and have a hard time gaining it back.
5. He thinks I spend too much time on my CF. This one I just don't understand
because I always have. The only thing I have added is daily Chest PT from a home health nurse.
6. I am physically healthy now to handle a transplant and he doesn't want me to loose that window.
I am very glad Dr. Z called. We talked for a good 45 minutes. He really gave me some things to go on.
I don't have the traditional case where I need Oxygen 24/7, I only need it with exercise or
exertion. I don't think my body is retaining CO2 but i may be wrong...none has discussed this with me. My
FEV1 is higher then a lot of people that have a transplant. My biggest issue is when I get sick, I get really sick and this scares everyone except me. I have always kept a positive attitude and that I will fight until the end. I just look at an infection as a bump in the road. I guess that is where my attitude needs to change. I guess I need to think about that one bad infection and be scared of it. I just never have lived like that.
I have made a promise to myself that I will not allow myself to waste away. I watch my weight and calorie intake. I have also been very committed to exercising. I need to keep my muscle ton up so I have every chance for a great recovery from the transplant.
So where am I in this decision? I am giving one last effort to see if I can keep any infections away by being very active on the treadmill. I am going to make a daily diary of how I feel/how my current condition is hindering my quality of life. For example, yesterday the treadmill was hard. After a minute, I felt I was huffing and puffing. I only did the treadmill for 20 minutes. So this tells me, I have a low tolerance to damp heavy air which is what the air quality was yesterday. That kind of sucks since I live in Maine and it is very humid during the summer months.
Another example, if I wake up in the middle of the night to go pee and I lay in bed
contemplating getting up to go. Why you ask? Because as soon as I get up, I cough and cough and cough. Sometimes this lasts for 10 minutes other times an hour. It is very hard to go back to sleep after a coughing fit.
Wow, this is a long post. I have so much more on my mind. My next post will be shorter I promise. I hope you all have a great day.