A lesson for me
Typically when I post to this blog I wait until I’m doing well and then highlight the good things that are happening and I briefly mention the problems that have resolved. I think I have avoided mentioning the struggles because I believed that eventually they would just go away. Now it seems to me that maybe it would be helpful if I were a little more open about alll of my journey because the struggles aren't just going away.
Since I received bone marrow from my mom in January of 2008 I have been dealing with the fact that my new immune system doesn’t recognize my body and wants to attack it. As I have mentioned before, I am on immune suppressants which make me more vulnerable to all sorts of infections. In addition the immune suppressants have some nasty side effects. As a result I am on medications to fight the bugs and address the side effects.
My doctors in Seattle want to get me off the immune suppressants to prevent these problems, reduce the number of medications I’m on and help me lead a more normal life. So every six months since the transplant the doctors either lower the dose of my immune suppressants or try to switch me to a different type. Unfortunately my body is not ready. So every six months I have a little crisis that lasts one to a few months, I recover and we try again.
Starting before Thanksgiving I had one of my crises. My immune system was attacking my gut, my lungs and my skin. For a couple of months food ran right through me, I had increasing difficulty breathing, my arm became infected and finally I caught a cold. Antibiotics took care of the infection. I got over 3 pounds of fluid off my right lung. My doctor here bumped my steroids up high and that took care of the gut stuff and seems to have slowed the accumulation of fluid in my lungs. And after more than two weeks of rest I am almost over the cold, my body is digesting food, I'm breathing well and I have some energy. Now that I am stable my doctor is slowly tapering my steroids to my previous dose.
I am thankful for the relief and feeling much better since I have accepted that all the struggles aren't going to just go away. I am moving forward, focusing more on the quality of my life rather than trying to get back to a place I cannot go.
Thanks for checking in on me! Take care.
Since I received bone marrow from my mom in January of 2008 I have been dealing with the fact that my new immune system doesn’t recognize my body and wants to attack it. As I have mentioned before, I am on immune suppressants which make me more vulnerable to all sorts of infections. In addition the immune suppressants have some nasty side effects. As a result I am on medications to fight the bugs and address the side effects.
My doctors in Seattle want to get me off the immune suppressants to prevent these problems, reduce the number of medications I’m on and help me lead a more normal life. So every six months since the transplant the doctors either lower the dose of my immune suppressants or try to switch me to a different type. Unfortunately my body is not ready. So every six months I have a little crisis that lasts one to a few months, I recover and we try again.
Starting before Thanksgiving I had one of my crises. My immune system was attacking my gut, my lungs and my skin. For a couple of months food ran right through me, I had increasing difficulty breathing, my arm became infected and finally I caught a cold. Antibiotics took care of the infection. I got over 3 pounds of fluid off my right lung. My doctor here bumped my steroids up high and that took care of the gut stuff and seems to have slowed the accumulation of fluid in my lungs. And after more than two weeks of rest I am almost over the cold, my body is digesting food, I'm breathing well and I have some energy. Now that I am stable my doctor is slowly tapering my steroids to my previous dose.
I am thankful for the relief and feeling much better since I have accepted that all the struggles aren't going to just go away. I am moving forward, focusing more on the quality of my life rather than trying to get back to a place I cannot go.
Thanks for checking in on me! Take care.
posted by Anonymous | 5:03 AM
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