Oct 15: My 10 year anniversary (This is going to be lengthly....)
Ten years. Ten long years. An anniversary no one else will remember, not even my mother. It doesn't matter as much to anyone else. It probably shouldn't matter as much as it does to me. It is, after all, only a date on the calendar, worthy maybe of only a notation as 'history'.
Have you ever thought about the worst or best days of your life? Major milestones: weddings, births, deaths; those are all considered 'worthy' of being remembered and marked in a specific way. But what about the life altering days that don't fit into those narrow categories?
The day I saw my heart on the echo screen was shocking and horrible, but it did explain a lot. The day I was told I needed open heart surgery at 41 years old was a relief, because my symptoms were so severe at that point I couldn't have gone on. Ten days before the surgery I met with the surgeon, who saw an abnormality hat had been missed before, and made my condition more critical with sudden death being likely within two months without surgery; that was a relief because I knew I was dying, despite others telling me 'Now that you know something is wrong you're just more aware.'
Obviously I was unconscious the day of the surgery, and was so unstable that it didn't look as if I would survive the night. I briefly woke on the ventilator twice, don't remember pain being foremost in my fuzzy brain, that came the day after surgery, when the remaining anesthesia had worn off. It was days later before I understood how difficult the surgery had been, that they had stopped my heart 3 times, had done 3 repairs and left my electrical system so stunned that I was pacemaker dependent for several days afterwards.
All of that, and more, are certainly noteworthy in a person's life. But as this anniversary got closer and closer I got more and more depressed. Because, at ten years post open heart surgery, most younger people are celebrating 10 years of feeling better, looking back on their surgery as a horrid memory but knowing it gave them a better life. For me that hasn't been the case.
That difficult day, the second open heart less than two years later, the incredibly horrid thoracotomy to repair the lung hernia from the first surgery, the mind-numbing news that I needed a third surgery....all of that was made tolerable because there was the promise of feeling better. Going through all that was supposed to give me a better quality of life, allow me to be more active, do things that maybe I'd never been able to do before since I'd been in heart failure my entire adult life. For years after that last surgery I kept thinking that my exercise capacity would improve, that the pain in my sternum from being repeatedly sawed open would be gone, that I'd start to feel better. That's what is supposed to happen, and that is what happened to patients and friends who were younger at the time of their open heart surgeries, which had been for a variety of reasons.
After the scare of last fall into winter (refer back to 'What I haven't been telling you....' in January of this year), and what the extra consults and testing have shown is this: my heart is never going to be better, I'm never going to be without symptoms and restrictions. Aside from the addition of this damn autoimmune disease giving even more fatigue, my heart condition will never improve.
My diagnosis now is almost identical to what it was going into the surgery 10 years ago. In 2004 it was severe mitral regurgitation resulting in heart failure and pulmonary HTN. In 2014 my diagnosis is mechanical mitral stenosis resulting in heart failure and pulmonary HTN. So, after everything I've gone through in the past 10 years, the end result remains unchanged. The difference is that then I was critically ill with a very short life expectancy, and now I'm chronically ill with a longer life expectancy and the same symptoms. Yay. Even my usually overly optimistic cardiologist has conceded: best case scenario for me now is that I stay stable for a while before getting worse again, which is inevitable. Yipee. Sword of Damocles comes to mind.
So I'm allowing myself to wallow, especially today. The annoyingly positive side of me is, however, slogging it's way through the muck and mire: I've started a list of all the good things that have happened in the past 10 years, experiences I never would have had, people whom I wouldn't have met, the positive differences to others that I'm aware of. There has not been one moment that I've ever thought 'Now THIS was worth still being alive for!', but I'm hoping that looking at quantity, lots of smaller moments, will add up to something larger.
From the beginning, months before the first surgery, life was made more difficult by the recognition that I couldn't control what was happening: not in my heart, my body, my work, my friends. Not having control over your body, the one thing you always count on, is life altering. As the CHF worsened, my breathing became more ragged, my abilities rapidly diminished, I came to a recognition: the only thing I had control over was in choosing how to react to all of these things. Even that control was gone for a while due to the brain damage, memory loss and permanent neuronal damage. In these last few months it was no longer a conscious recognition. Then, last week, while looking for something needed for jewelry making, I saw a metal component with this saying: Choose Happiness. It couldn't have shown up at a better time.
Choose Happiness. It's not a directive, not a suggestion, not just a phrase. It is a decision, one only each person can make for themselves. We can make that decision. It doesn't mean every second of every day, but it is a reminder that we do have a choice how we live in ourselves, as well as in this world and interactions with others. Today it isn't within my abilities to make that choice, but it can be tomorrow or the next day. It is my decision, open to me at any time, in any moment. The goal is to make it be the choice for as many moments as possible.
Thanks to the few of you who have followed my journey, Laurie
Have you ever thought about the worst or best days of your life? Major milestones: weddings, births, deaths; those are all considered 'worthy' of being remembered and marked in a specific way. But what about the life altering days that don't fit into those narrow categories?
The day I saw my heart on the echo screen was shocking and horrible, but it did explain a lot. The day I was told I needed open heart surgery at 41 years old was a relief, because my symptoms were so severe at that point I couldn't have gone on. Ten days before the surgery I met with the surgeon, who saw an abnormality hat had been missed before, and made my condition more critical with sudden death being likely within two months without surgery; that was a relief because I knew I was dying, despite others telling me 'Now that you know something is wrong you're just more aware.'
Obviously I was unconscious the day of the surgery, and was so unstable that it didn't look as if I would survive the night. I briefly woke on the ventilator twice, don't remember pain being foremost in my fuzzy brain, that came the day after surgery, when the remaining anesthesia had worn off. It was days later before I understood how difficult the surgery had been, that they had stopped my heart 3 times, had done 3 repairs and left my electrical system so stunned that I was pacemaker dependent for several days afterwards.
All of that, and more, are certainly noteworthy in a person's life. But as this anniversary got closer and closer I got more and more depressed. Because, at ten years post open heart surgery, most younger people are celebrating 10 years of feeling better, looking back on their surgery as a horrid memory but knowing it gave them a better life. For me that hasn't been the case.
That difficult day, the second open heart less than two years later, the incredibly horrid thoracotomy to repair the lung hernia from the first surgery, the mind-numbing news that I needed a third surgery....all of that was made tolerable because there was the promise of feeling better. Going through all that was supposed to give me a better quality of life, allow me to be more active, do things that maybe I'd never been able to do before since I'd been in heart failure my entire adult life. For years after that last surgery I kept thinking that my exercise capacity would improve, that the pain in my sternum from being repeatedly sawed open would be gone, that I'd start to feel better. That's what is supposed to happen, and that is what happened to patients and friends who were younger at the time of their open heart surgeries, which had been for a variety of reasons.
After the scare of last fall into winter (refer back to 'What I haven't been telling you....' in January of this year), and what the extra consults and testing have shown is this: my heart is never going to be better, I'm never going to be without symptoms and restrictions. Aside from the addition of this damn autoimmune disease giving even more fatigue, my heart condition will never improve.
My diagnosis now is almost identical to what it was going into the surgery 10 years ago. In 2004 it was severe mitral regurgitation resulting in heart failure and pulmonary HTN. In 2014 my diagnosis is mechanical mitral stenosis resulting in heart failure and pulmonary HTN. So, after everything I've gone through in the past 10 years, the end result remains unchanged. The difference is that then I was critically ill with a very short life expectancy, and now I'm chronically ill with a longer life expectancy and the same symptoms. Yay. Even my usually overly optimistic cardiologist has conceded: best case scenario for me now is that I stay stable for a while before getting worse again, which is inevitable. Yipee. Sword of Damocles comes to mind.
So I'm allowing myself to wallow, especially today. The annoyingly positive side of me is, however, slogging it's way through the muck and mire: I've started a list of all the good things that have happened in the past 10 years, experiences I never would have had, people whom I wouldn't have met, the positive differences to others that I'm aware of. There has not been one moment that I've ever thought 'Now THIS was worth still being alive for!', but I'm hoping that looking at quantity, lots of smaller moments, will add up to something larger.
From the beginning, months before the first surgery, life was made more difficult by the recognition that I couldn't control what was happening: not in my heart, my body, my work, my friends. Not having control over your body, the one thing you always count on, is life altering. As the CHF worsened, my breathing became more ragged, my abilities rapidly diminished, I came to a recognition: the only thing I had control over was in choosing how to react to all of these things. Even that control was gone for a while due to the brain damage, memory loss and permanent neuronal damage. In these last few months it was no longer a conscious recognition. Then, last week, while looking for something needed for jewelry making, I saw a metal component with this saying: Choose Happiness. It couldn't have shown up at a better time.
Choose Happiness. It's not a directive, not a suggestion, not just a phrase. It is a decision, one only each person can make for themselves. We can make that decision. It doesn't mean every second of every day, but it is a reminder that we do have a choice how we live in ourselves, as well as in this world and interactions with others. Today it isn't within my abilities to make that choice, but it can be tomorrow or the next day. It is my decision, open to me at any time, in any moment. The goal is to make it be the choice for as many moments as possible.
Thanks to the few of you who have followed my journey, Laurie
posted by Laurie @ 1:48 PM
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