I made it. I am done with the IV antibiotics. I got rid of my pic line yesterday. I am done with the oral antibiotics. My hemoglobin is low (8.1, normal is 12 -25) and my red blood cells are low. I started on some nasty tasting iron tablets. I will have my blood checked again on Monday. I hope to avoid a transfusion. I understand why I have felt like doing nothing for weeks. I hope my energy will return soon.
I went to Duke two weeks ago. In the past two months my lung capacity has dropped from 31% to 25%, statistically significant. However my oxygen level stays decent (in the 90's). If I can maintain a good Oxygen level with exercise then I will buy myself some time. If not, then they would like me to move to Raleigh, NC to proceed with transplant. I've been to pulmonary rehab twice so far. I can do half of what I used to do (20 minutes as opposed to 40 Minutes). My oxygen level has stayed high. I am grateful.
I recognize that I am not ready for transplant today. (Will I ever be?) I need to get my house in order, literally and figuratively. Where to start when it feels like I have so much to do? I think I need a nap.
Friday, September 19, 2008
Monday, September 8, 2008
Time Will Tell
I usually enjoy politics. I love debates, the crashing of ideas against each other, the battle of philosophies with each candidate trying to get their point across in the most articulate way possible. In November, no matter who wins, history will be made.
However this year I'm having a hard time getting into the political arena. It's not that I don't care who runs the country; It's the realization that I may not be here four years from now. I am not one to be pessimistic but my meeting with the transplant team last week leaves me with a sobering understanding of the future. Less then 2% of people die on the operating table when they get new lungs; 10% die within the first year; 50% die within the first 5 years.
I know I have always beaten the odds with this disease. I assume I'll beat the odds of transplant as well. Yet the statistics still leave me with a sense of desperation. I not only want to live, I want to live fully. I want to surround myself with people I feel connected to, I want to have long talks, I want to linger at sunset, I want to laugh. alot. I want to worship, I want to take my kids to Disney World. I swing between being purposeful and serious to being silly and frivolous, it's a crazy, schizophrenic way of approaching life. I realized a long time ago most things that take our energy are not that important. So then, how shall I live? I don't know. I sense I'm at a new place. I can not assume life will go on as it always has, at least not my life. Time will tell.
However this year I'm having a hard time getting into the political arena. It's not that I don't care who runs the country; It's the realization that I may not be here four years from now. I am not one to be pessimistic but my meeting with the transplant team last week leaves me with a sobering understanding of the future. Less then 2% of people die on the operating table when they get new lungs; 10% die within the first year; 50% die within the first 5 years.
I know I have always beaten the odds with this disease. I assume I'll beat the odds of transplant as well. Yet the statistics still leave me with a sense of desperation. I not only want to live, I want to live fully. I want to surround myself with people I feel connected to, I want to have long talks, I want to linger at sunset, I want to laugh. alot. I want to worship, I want to take my kids to Disney World. I swing between being purposeful and serious to being silly and frivolous, it's a crazy, schizophrenic way of approaching life. I realized a long time ago most things that take our energy are not that important. So then, how shall I live? I don't know. I sense I'm at a new place. I can not assume life will go on as it always has, at least not my life. Time will tell.
Tuesday, September 2, 2008
The End of a Season
Monday was labor day, the end of summer. No more white shoes; no more long, lingering evenings watching the fireflies dance during dusk; no more carefree, unstructured days without the work of homeschooling; This past summer was the best of times and the worst of times.
I've already expounded on the worst of times in my past entries. I am still in recovery mode from my last hospital stay. I have two more weeks of IV antibiotics as well as oral and nebulized antibiotics. All the medicine is wreaking havoc with my stomach, it's like having constant morning sickness without the joy of a baby.
Now let me expound on the best of times. In between hospital stays I went on vacation. I travelled to Pennsylvania where my friends gathered for a 40th birthday party/fundraiser. It is most humbling for others to do for you what you simply can not do for yourself. Not only did they raise a tremendous amount of money (nearly $7000 in donations and pledges) but they wrote and spoke the most beautiful words to me. They spoke of how I have impacted their lives. They affirmed my past, present and future. They blessed me and gave me courage for the journey. I left the party feeling elated. My life has made a difference. My struggles have not been in vain, my pain has encouraged others who have been in pain. All is not lost.
I believe it is through relationships that we receive our wounds and it is through relationships that we receive our healing. My friends have blessed me and brought healing to my life. They have called forth my beauty; confronted my depravity; reminded me of my dignity and have loved me well. My party reminded me of the power of a well spoken word, the need to speak the truth to each other, the tremendous gift of forgiveness, the value of transparency and how much we need each other as we stumble along on our way home.
I've already expounded on the worst of times in my past entries. I am still in recovery mode from my last hospital stay. I have two more weeks of IV antibiotics as well as oral and nebulized antibiotics. All the medicine is wreaking havoc with my stomach, it's like having constant morning sickness without the joy of a baby.
Now let me expound on the best of times. In between hospital stays I went on vacation. I travelled to Pennsylvania where my friends gathered for a 40th birthday party/fundraiser. It is most humbling for others to do for you what you simply can not do for yourself. Not only did they raise a tremendous amount of money (nearly $7000 in donations and pledges) but they wrote and spoke the most beautiful words to me. They spoke of how I have impacted their lives. They affirmed my past, present and future. They blessed me and gave me courage for the journey. I left the party feeling elated. My life has made a difference. My struggles have not been in vain, my pain has encouraged others who have been in pain. All is not lost.
I believe it is through relationships that we receive our wounds and it is through relationships that we receive our healing. My friends have blessed me and brought healing to my life. They have called forth my beauty; confronted my depravity; reminded me of my dignity and have loved me well. My party reminded me of the power of a well spoken word, the need to speak the truth to each other, the tremendous gift of forgiveness, the value of transparency and how much we need each other as we stumble along on our way home.
Subscribe to:
Posts (Atom)
