It is finally time for my long anticipated vacation. Today I will travel from North Carolina to Pennsylvania. I like to travel by myself, the conversation is good. I spend time talking to myself, talking to God, talking on the phone. I have to consult my map often because it is easy for me to get into a groove and just keep going not paying attention to details like turning. For me "lost" is just a word that describes an unscheduled adventure.
For the past several years I have been on the road to transplant. I've known for a while that some day I will need new lungs. It's always been looming in the the future. I've rationalized that with each hospitalization I was a little closer. I have anticipated there will come a time that I will slow down more; that some day I will need oxygen to exercise then some day I will need oxygen to breathe. I have anticipated a gradual decline slowly leading into transplant. Someday.
Since I am feeling fairly healthy and not on oxygen I was not anticipating what the Duke Doctors told me yesterday. Apparently, pneumothoraxes (holes in the lungs) are red flags that expedite the transplant process. The more you have, the more you are likely to have. My x-ray showed another pneumo on my right side. Fortunately this one is relatively small so no chest tubes. They used strong words to describe the possibilities, words like respiratory distress that could lead to expiration. I always thought that was a funny way of describing death, like some cold cut that has gone bad. ("OK, You're time is up, out of the fridge.")
The transplant team is meeting this week and they will review my case. Given my recent challenges it seems that transplant could be closer then I had been thinking; it could become real, not just some far off destination. Someday it will come and when it does I will rise to the occasion. However, today I will live in the power and peace of the moment. Today all I have to do is enjoy the road I'm on now. So I'm off to enjoy my vacation, wonder what adventures I'll find.
Friday, July 18, 2008
Wednesday, July 16, 2008
Anticipation
Remember the old Heinz 57 commercial showing the juicy hamburger just waiting for one drop of ketchup to drip off the bottle. In the background Carly Simon sang about how anticipation is making her wait but of course the ketchup is too rich and thick to plop out. The next scene is just a perfect hamburger with a perfectly round circle of ketchup. You never see where the scene where the ketchup user is hitting the bottom of the bottle talking to the ketchup trying to convince it to come out. Then when that does not work he gets the old butter knife out and pulls the red, glue-like substance out in big, gooey glops. No, all you see is the end result, a perfectly round ring of ketchup on a perfect burger just waiting to be devoured.
Often when I am waiting the song often comes back to me. (ah, the power of media, that commercial was on TV at least 20 years ago.) This morning I am waiting to go to Duke Medical Center. I have appointments through out today and tomorrow. I was scheduled to go for a routine review at the end of this month but now, with the recent lung collapse, they want to see me earlier. I don't like going there. They see me as a patient, they think I am sick. I do not always acknowledge how sick I am until reality smacks me in the face again and I cannot turn away. Today I am forced to face my sickness, to talk about transplant, to anticipate the future.
Often when I am waiting the song often comes back to me. (ah, the power of media, that commercial was on TV at least 20 years ago.) This morning I am waiting to go to Duke Medical Center. I have appointments through out today and tomorrow. I was scheduled to go for a routine review at the end of this month but now, with the recent lung collapse, they want to see me earlier. I don't like going there. They see me as a patient, they think I am sick. I do not always acknowledge how sick I am until reality smacks me in the face again and I cannot turn away. Today I am forced to face my sickness, to talk about transplant, to anticipate the future.
Thursday, July 10, 2008
Coming home
I watched the sunset tonight. I was outside, breathing wonderful, humid, air. I drove in a car today. The world seems so busy, everyone with an agenda, rushing by, busy to go somewhere. Most unaware of the moment because it melts into all the other moments in the chorus of a day.
After nearly two weeks in the hospital the sunset was gloriously beautiful, not to be taken for granted but to be savored. I am free of the tube in my side, free of my IV line dripping relief for my pain, free of the confines of four walls, free of watching the world go by from the view of my ninth story window. I am free to live in the moment, knowing that I am safe, I am healthy (relatively speaking), I am at peace.
After nearly two weeks in the hospital the sunset was gloriously beautiful, not to be taken for granted but to be savored. I am free of the tube in my side, free of my IV line dripping relief for my pain, free of the confines of four walls, free of watching the world go by from the view of my ninth story window. I am free to live in the moment, knowing that I am safe, I am healthy (relatively speaking), I am at peace.
Friday, July 4, 2008
My birthday
I have a wonderful problem, it's really quite a delightful dilemma. Today is my birthday. I am forty years old. There have been plenty of times that I wondered if I would live to be this old. The last ten years have been especially challenging. I shifted from having a disease that served as a footnote in my life to a disease that orchestrates my daily routine, dictating my schedule, what I can do and what I can't do.
I was diagnosed with Cystic Fibrosis when I was eighteen months old. At the time the doctors told my parents I would be fortunate to live to be eighteen. Much has changed since then , early diagnosis and better treatment means someone born today with the disease will live an average of thirty-four years. I am forty years old! I made it to the next decade. I am blessed.
I am plagued with a question. Why me? Why am I fortunate enough to live while others with the disease fight harder and live shorter lives, many dying before reaching adulthood. I do not know the answer. However the inquiry leaves me with a hyper awareness that our lives are not to be taken for granted, each day is a gift bestowed on us by the author of life and death.
The problem I spoke of earlier involves a lack of planning. I never pictured myself living this long. It felt a little presumptuous to think I could live to be forty. Even now, the idea of being this old is settling in. I'm thrilled to be here, quite curious to see what the next chapter of my book will look like.
I was diagnosed with Cystic Fibrosis when I was eighteen months old. At the time the doctors told my parents I would be fortunate to live to be eighteen. Much has changed since then , early diagnosis and better treatment means someone born today with the disease will live an average of thirty-four years. I am forty years old! I made it to the next decade. I am blessed.
I am plagued with a question. Why me? Why am I fortunate enough to live while others with the disease fight harder and live shorter lives, many dying before reaching adulthood. I do not know the answer. However the inquiry leaves me with a hyper awareness that our lives are not to be taken for granted, each day is a gift bestowed on us by the author of life and death.
The problem I spoke of earlier involves a lack of planning. I never pictured myself living this long. It felt a little presumptuous to think I could live to be forty. Even now, the idea of being this old is settling in. I'm thrilled to be here, quite curious to see what the next chapter of my book will look like.
Thursday, July 3, 2008
The pain of truth
It's nightfall, the end of another long day. I'm waiting for the nurse to bring me a shot of morphine. Today they took out the chest tube only to insert a bigger one. They hope this new and improved, super size straw will adequately suck the air out of my chest cavity so my lung can expand again.
The nurse is exiting my room now. I feel the bliss of relief as the drug blocks my pain telling my brain all is well in my body. I will rest in this falsehood and slumber until the lie wears off and the truth prevails once again.
The nurse is exiting my room now. I feel the bliss of relief as the drug blocks my pain telling my brain all is well in my body. I will rest in this falsehood and slumber until the lie wears off and the truth prevails once again.
Wednesday, July 2, 2008
Stuck in the hospital
I hate the feeling of being stuck. I'm in the hospital now. The doctor's discovered that my left lung has collapsed. Silly me, I thought I was just having some back spasms. I'm extremely frustrated because I've worked hard at staying healthy this summer. I go to pulmonary rehab twice each week. I just biked seven miles on my exercycle. I am actually feeling pretty darn good which makes being in the hospital all the more challenging. I want to go home. I want to hang out with my friends who are vacationing at my house. We've been planning our camping trip to Cades Cove since February. Today they will go without me because I am trapped here.
Picture quick sand that sucks you down, the more you wrestle, the deeper into the mire you sink. Here is a survivor's tip for the day- if you're ever trapped in quick sand, to escape you must relax. It's true, check your boy scout guide. To get out of the pit it is best to lay back as if you are floating and thus redistribute your body weight until you are resting on the surface of the muck, only in this position of surrender can you make any real progress in your attempt to get free. I know this to be true about the hospital as well or any situation where we have no control.
Think about it, the things that matter most are the things we have the least control over- our health, our future, our relationships (ever try to control someone else? not a pretty sight). All our striving, all our effort to make life work for us, most of it is far beyond our control. I've spent the last twenty-four hours crying, longing to be released from my current predicament. I've cursed, I've screamed, I've hit the pillows, I've prayed, nothing changes, I'm still here. Today the best I can hope for is to relax in the moment, kick up my heels and float along. Perhaps I can get hold of some good narcotics while I'm here, that might help.
Picture quick sand that sucks you down, the more you wrestle, the deeper into the mire you sink. Here is a survivor's tip for the day- if you're ever trapped in quick sand, to escape you must relax. It's true, check your boy scout guide. To get out of the pit it is best to lay back as if you are floating and thus redistribute your body weight until you are resting on the surface of the muck, only in this position of surrender can you make any real progress in your attempt to get free. I know this to be true about the hospital as well or any situation where we have no control.
Think about it, the things that matter most are the things we have the least control over- our health, our future, our relationships (ever try to control someone else? not a pretty sight). All our striving, all our effort to make life work for us, most of it is far beyond our control. I've spent the last twenty-four hours crying, longing to be released from my current predicament. I've cursed, I've screamed, I've hit the pillows, I've prayed, nothing changes, I'm still here. Today the best I can hope for is to relax in the moment, kick up my heels and float along. Perhaps I can get hold of some good narcotics while I'm here, that might help.
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