A Rainbow Kind of Week
This has been a perfectly imperfect week. It was filled with good stuff, great stuff, and sadness--but hey, isn't that life in a nutshell?
One of this week's high points happened when I went back to my CF doc to follow-up after finishing both of my antibiotics. Much to our surprise, my PFT's completely rebounded from the dramatic drop I had just one month ago and then some! I can feel it too--I've actually been lying in bed at night relishing in the unfamiliar ease of deep breaths, appreciating it while it lasts. My doc asked me what I thought made such a big difference and for me it was a no-brainer: the "new" [inhaled Colistin] med that I have never used before--a med that found its way to me by a lucky accident. It was well worth the fight.
While my lungs are holding their own, my other organs continue to give me a run for my money and the CT scan my new nephrologist ordered to look at my kidneys just so happened to show other areas for concern, including my lungs and bladder. It earned me my first ever appointment with a urologist, whom I will see on Monday. Who says an old dog can't learn new tricks? As far as the areas of concern for my lungs, it's most likely long-term damage that's happened over the last 2 years and nothing to act on considering my great appointment this week (which is a good thing by the way.) My GI doc and I are also heading back to the drawing board after an experimental pancreas medication failed to solve my problem. That's okay, insurance doesn't cover that med anyway.
Back to my CF clinic appointment, I left it with lots of pep in my step. However as soon as I learned that a CF 'friend' of mine was in the ICU and not recovering so well, the wind was taken right out of my sail. Without going into too much detail I will just say that I began following this guy's blog a few years ago after discovering how much he and I had in common from a clinical CF standpoint; I'm talking eerily similar for a disease where no 2 cases are exactly alike! Now, the same thing that blindsided me into the ICU (and laded me in a drug-induced coma) in 2009 has blindsided him into the ICU. Understandably his experience brought me right back to that emotional place. Back then it never donned on me how dire my situation was or how things could have turned out completely differently had my team not made such smart decisions. Looking back over the past 5 1/2 years I feel so goddamn lucky at how far I've come and how much life I've lived since then! It brings tears to my eyes every time. Grateful doesn't even begin to describe it. I hope that with a second child on the way, this guy has the same luck bestowed upon him and many many healthy years to come. He and his wife are strong and resilient, they've got this!
The thing about taking the good with the bad is that it's where the truest beauty lies. If every day was blazing sunshine we would take it for granted (and have skin that purses could be made of.) If every day were rainy we would be pruny and depressed like most of Seattle (I kid!) A delicate balance between the two is when the most beautiful rainbows appear. As far as I'm concerned, being able to find joy and happiness amidst life's heavy curevballs not only gives us the gift of perspective, it's a pretty sweet spot to kick back and enjoy the view.
One of this week's high points happened when I went back to my CF doc to follow-up after finishing both of my antibiotics. Much to our surprise, my PFT's completely rebounded from the dramatic drop I had just one month ago and then some! I can feel it too--I've actually been lying in bed at night relishing in the unfamiliar ease of deep breaths, appreciating it while it lasts. My doc asked me what I thought made such a big difference and for me it was a no-brainer: the "new" [inhaled Colistin] med that I have never used before--a med that found its way to me by a lucky accident. It was well worth the fight.
While my lungs are holding their own, my other organs continue to give me a run for my money and the CT scan my new nephrologist ordered to look at my kidneys just so happened to show other areas for concern, including my lungs and bladder. It earned me my first ever appointment with a urologist, whom I will see on Monday. Who says an old dog can't learn new tricks? As far as the areas of concern for my lungs, it's most likely long-term damage that's happened over the last 2 years and nothing to act on considering my great appointment this week (which is a good thing by the way.) My GI doc and I are also heading back to the drawing board after an experimental pancreas medication failed to solve my problem. That's okay, insurance doesn't cover that med anyway.
Back to my CF clinic appointment, I left it with lots of pep in my step. However as soon as I learned that a CF 'friend' of mine was in the ICU and not recovering so well, the wind was taken right out of my sail. Without going into too much detail I will just say that I began following this guy's blog a few years ago after discovering how much he and I had in common from a clinical CF standpoint; I'm talking eerily similar for a disease where no 2 cases are exactly alike! Now, the same thing that blindsided me into the ICU (and laded me in a drug-induced coma) in 2009 has blindsided him into the ICU. Understandably his experience brought me right back to that emotional place. Back then it never donned on me how dire my situation was or how things could have turned out completely differently had my team not made such smart decisions. Looking back over the past 5 1/2 years I feel so goddamn lucky at how far I've come and how much life I've lived since then! It brings tears to my eyes every time. Grateful doesn't even begin to describe it. I hope that with a second child on the way, this guy has the same luck bestowed upon him and many many healthy years to come. He and his wife are strong and resilient, they've got this!
The thing about taking the good with the bad is that it's where the truest beauty lies. If every day was blazing sunshine we would take it for granted (and have skin that purses could be made of.) If every day were rainy we would be pruny and depressed like most of Seattle (I kid!) A delicate balance between the two is when the most beautiful rainbows appear. As far as I'm concerned, being able to find joy and happiness amidst life's heavy curevballs not only gives us the gift of perspective, it's a pretty sweet spot to kick back and enjoy the view.
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