Oct 15: Reflections on the 6 year anniversary
When finally downloading all these postings a couple months ago, it gave me an opportunity to reflect on the last six years. One of the best things was seeing the progressive improvement in my physical abilities. I'm glad for so many times of documenting seemingly small accomplishments, because it reminds me of how far I've come.
If you have time, please re-read last year's Oct 16 posting of my climb on Oct 15.
When I was last seen in Boston, February 2009, it was 18 months after heart surgery #3. I still didn't feel that great and asked Dr. Baughman when, or if, there would be any further improvement. I had little energy, rapidly fatigued, walking some but out of breath with anything more than mild exertion. All these symptoms were much improved from before #3 and while I didn't want to sound ungrateful it was not as good a return to function as I'd been hoping for. So, I asked Dr. B, is this it? Is this the best I'll get? He responded that my echo looked great and since it was over a year post-op my current level of functioning was probably now my baseline. He urged me to lose weight, try to exercise more and that maybe I'd feel better. But, he reminded me, as improved as my echo looked it was still with the caveat that I would always be inhibited by the small valve size. My visit with Dr. Cohn was more casual, as his part regarding the surgery is obviously finished. My question to him was when, or if, the pain from my sternum would ever be any better. Younger patients seem to have more problems with sternal non-union, which is why you hear so much about the minimally invasive valve surgery in advertisements. He doubted any further improvement, with these other factors and having my chest cracked open four times there was little chance of recuperation from that kind of repeated trauma. His basic message was 'it's not as bad as some people's, and your body doesn't like surgery, so learn to live with it.'
Then I came home and fell down the basement stairs. As you know, the recovery from the broken left foot took an excruciatingly long time, hampered by my osteopenia/osteoporosis making the bones so weak. I pushed myself in England, it was more my heart and lack of exercise tolerance than the foot that kept me restrained.
Then about 7-8 months ago I started feeling better, wasn't as tired after working a full day, less exhausted on four day weeks. Increasing my exercise didn't leave me as short of breath as even six months before that. For the first time since being sick I was able to increase my exercise, increase my speed and tolerance. I reveled in these new abilities, didn't say anything out of fear it was a fluke, afraid that if I spoke it out loud that it would somehow disappear.
But it's continued. The increased walking in training for climbing the mountain in NH would absolutely not have been possible the year before, even taking the foot into account. I began to be able to run errands after work, and am not as tired on Friday as I used to be after two days in a row. Instead of needing the entire three day weekend to rest I can do some things on Friday, while taking it easy, and then make plans for the weekend. Sitting, instead of having to lie down, is often enough of a rest. And possibly the best thing: no horrible 'pump-head' feeling when tired--it's actually rare now.
So what's been going on? I thought about this during my hour long walks, increasing steadily the pace and distance covered. And suddenly one day several months ago I experienced an epiphany.
Heart surgery has been streamlined more and more in the last ten years. Valve surgery is, contrary to most people's understanding, more invasive than having heart bypass done. (Valves inside, coronary arteries outside.) The mitral valve is harder to get to than the aortic valve. With more and more patients having minimally invasive surgery, recuperation times are now down to about 4 weeks, by 3 months it's expected that almost everyone will be fully recovered. If, however, you have complications then the recuperation timeline extends.
So, I had three complicated heart surgeries in less than three years. There was no recuperation after the first two heart surgeries because of my abnormal physiology and surgical complications causing continued problems, keeping me with elevated lung pressures and in heart failure. Having the dreadful thoracotomy after #2 didn't help matters. But then why didn't I feel better a year after #3? Because, my epiphany goes, my body was not recovering from one complicated heart surgery, but three of them. Recuperation couldn't start until things were actually fixed with surgery #3. So, if each surgery takes up to a year to recover from then it would only make sense that my body would take at least two and a half years to rebound from three difficult heart surgeries.
It's such an obvious explanation that the response is "Well, duh!" (The two cardiologists now involved did opt for a more professional "Well, that makes total sense.")
It seems clear when spelled out like that, of course someone should have told me it was a matter of time. But the problem with being a patient with a unique problem means that there isn't anyone else to hold a yardstick up to, no one else who has been through the same thing. Even at Brigham they had never had anyone with three valve surgeries needed in such a short time frame. There are, rarely, older people who have had three valve surgeries--my office manager's mother is one, but all of them have had these surgeries over decades, not months.
My local cardiologist retired in March. He briefly introduced me to the much younger cardiologist he had decided to turn me over to with a synopsis of "She's had (turns towards me) how many? Five, five that's it, mitral valve surgeries. They kept trying to repair the damn thing, finally put in a St. Jude's." New younger doctor is clearly surprised, turns to me and says "Impressive." "Thanks!" I replied, "I've rarely been able to accomplish this degree of over achievement." (BTW: the five refers to the three done during the first surgery, then #2 & #3) In August I saw young local cardiologist, RG, for my first official visit with him. His opening remark on entering the room was "Here's the famous Laura Brooks!" My response was that I hadn't realized I was that famous, but he assured me that within their cardiology office I am. I also have the distinction of being his most complicated patient. As we went through my case in more detail he just kept shaking his head and muttering "incredible, just incredible." He was the Chief Resident for our newest Harvard educated cardiologist, who tells me he is brilliant. RG also has told me that he is fine with admitting when he doesn't know something, has no objection to my being followed at Brigham, but thinks that my level of stability is well within his abilities. Due to Dr. B's death, my being followed at Brigham is not clearcut. The argument was that as Dr. B was thoroughly familiar with all the complications of my case it made sense for him to continue following me. But anyone else there who would have me as a patient would be starting from scratch. Much as I love Boston, it is an expensive and time consuming trip, so we'll see how RG does with any possible complications.
This anniversary is, in many ways, even more of a celebration than last year's. Last year was the foundation for what has come, was an integral part of my healing. Since then there has been more physical, psychological and spiritual healing then the five previous years combined. Of late there has been a deliberate shift in my thought process from what my body can't do to what it can accomplish. My boundaries are becoming larger and larger and with this has returned more of my positive reactions and attitude towards things than has been present for years.
All of this wonderfulness does not mean that I'm able to do everything, or that there are not physical restrictions. But, as my frequent phrase went during the earlier parts of recovery, it's all relevant. In comparison to what was predicted by the medical establishment, in comparison to last year and the years before, in comparison to what my daily life had become, the improvement is tremendous. There will probably always be the sternal pain, flares of the thoracotomy site pain, issues from being on the coumadin. Certainly my physical exertion will always be inhibited by blood flow through the tiny valve opening not able to meet high demand. But I'm SOoooo much better than before.
There are many reasons for this improvement. I'll take credit for continuing to push myself, always trying to do a little more each time. Many times the refrain in my mind was like a mantra: 'You can do it, you can do it, a little more, you can do it.' Some has come from other people, from the Spirit putting certain people in my path at the right time, when I was open to receive wisdom. Sometimes it has been comments from you guys, sometimes other friends, sometimes strangers. Cris, who worked the FSM on my foot, was probably the biggest single healing force for me, not only improving my foot, but opening up my mind to release some of the anxiety and pain planted there during the surgeries, especially the first and most horrific one. The Universe/Goddess/Spirit has now put Gael in my path, a yoga instructor but also trained and gifted as a healer of the mind and psyche. Continuing to have a good paying job with great health insurance can not be underestimated in keeping me calm and allowing me to heal.
Joanne and I are scheduled for a long overdue dinner. I'm hoping for a walk in Valley Forge Park if the weather is good. In nature is where I feel the most spiritual and it would be good to walk in the crisp fall weather while expressing my gratefullness to all and everything which has contributed to my healing.
Thanks to all of you for your love and support during this tough journey. For you and so many others in my life, I am truly blessed. Laurie
If you have time, please re-read last year's Oct 16 posting of my climb on Oct 15.
When I was last seen in Boston, February 2009, it was 18 months after heart surgery #3. I still didn't feel that great and asked Dr. Baughman when, or if, there would be any further improvement. I had little energy, rapidly fatigued, walking some but out of breath with anything more than mild exertion. All these symptoms were much improved from before #3 and while I didn't want to sound ungrateful it was not as good a return to function as I'd been hoping for. So, I asked Dr. B, is this it? Is this the best I'll get? He responded that my echo looked great and since it was over a year post-op my current level of functioning was probably now my baseline. He urged me to lose weight, try to exercise more and that maybe I'd feel better. But, he reminded me, as improved as my echo looked it was still with the caveat that I would always be inhibited by the small valve size. My visit with Dr. Cohn was more casual, as his part regarding the surgery is obviously finished. My question to him was when, or if, the pain from my sternum would ever be any better. Younger patients seem to have more problems with sternal non-union, which is why you hear so much about the minimally invasive valve surgery in advertisements. He doubted any further improvement, with these other factors and having my chest cracked open four times there was little chance of recuperation from that kind of repeated trauma. His basic message was 'it's not as bad as some people's, and your body doesn't like surgery, so learn to live with it.'
Then I came home and fell down the basement stairs. As you know, the recovery from the broken left foot took an excruciatingly long time, hampered by my osteopenia/osteoporosis making the bones so weak. I pushed myself in England, it was more my heart and lack of exercise tolerance than the foot that kept me restrained.
Then about 7-8 months ago I started feeling better, wasn't as tired after working a full day, less exhausted on four day weeks. Increasing my exercise didn't leave me as short of breath as even six months before that. For the first time since being sick I was able to increase my exercise, increase my speed and tolerance. I reveled in these new abilities, didn't say anything out of fear it was a fluke, afraid that if I spoke it out loud that it would somehow disappear.
But it's continued. The increased walking in training for climbing the mountain in NH would absolutely not have been possible the year before, even taking the foot into account. I began to be able to run errands after work, and am not as tired on Friday as I used to be after two days in a row. Instead of needing the entire three day weekend to rest I can do some things on Friday, while taking it easy, and then make plans for the weekend. Sitting, instead of having to lie down, is often enough of a rest. And possibly the best thing: no horrible 'pump-head' feeling when tired--it's actually rare now.
So what's been going on? I thought about this during my hour long walks, increasing steadily the pace and distance covered. And suddenly one day several months ago I experienced an epiphany.
Heart surgery has been streamlined more and more in the last ten years. Valve surgery is, contrary to most people's understanding, more invasive than having heart bypass done. (Valves inside, coronary arteries outside.) The mitral valve is harder to get to than the aortic valve. With more and more patients having minimally invasive surgery, recuperation times are now down to about 4 weeks, by 3 months it's expected that almost everyone will be fully recovered. If, however, you have complications then the recuperation timeline extends.
So, I had three complicated heart surgeries in less than three years. There was no recuperation after the first two heart surgeries because of my abnormal physiology and surgical complications causing continued problems, keeping me with elevated lung pressures and in heart failure. Having the dreadful thoracotomy after #2 didn't help matters. But then why didn't I feel better a year after #3? Because, my epiphany goes, my body was not recovering from one complicated heart surgery, but three of them. Recuperation couldn't start until things were actually fixed with surgery #3. So, if each surgery takes up to a year to recover from then it would only make sense that my body would take at least two and a half years to rebound from three difficult heart surgeries.
It's such an obvious explanation that the response is "Well, duh!" (The two cardiologists now involved did opt for a more professional "Well, that makes total sense.")
It seems clear when spelled out like that, of course someone should have told me it was a matter of time. But the problem with being a patient with a unique problem means that there isn't anyone else to hold a yardstick up to, no one else who has been through the same thing. Even at Brigham they had never had anyone with three valve surgeries needed in such a short time frame. There are, rarely, older people who have had three valve surgeries--my office manager's mother is one, but all of them have had these surgeries over decades, not months.
My local cardiologist retired in March. He briefly introduced me to the much younger cardiologist he had decided to turn me over to with a synopsis of "She's had (turns towards me) how many? Five, five that's it, mitral valve surgeries. They kept trying to repair the damn thing, finally put in a St. Jude's." New younger doctor is clearly surprised, turns to me and says "Impressive." "Thanks!" I replied, "I've rarely been able to accomplish this degree of over achievement." (BTW: the five refers to the three done during the first surgery, then #2 & #3) In August I saw young local cardiologist, RG, for my first official visit with him. His opening remark on entering the room was "Here's the famous Laura Brooks!" My response was that I hadn't realized I was that famous, but he assured me that within their cardiology office I am. I also have the distinction of being his most complicated patient. As we went through my case in more detail he just kept shaking his head and muttering "incredible, just incredible." He was the Chief Resident for our newest Harvard educated cardiologist, who tells me he is brilliant. RG also has told me that he is fine with admitting when he doesn't know something, has no objection to my being followed at Brigham, but thinks that my level of stability is well within his abilities. Due to Dr. B's death, my being followed at Brigham is not clearcut. The argument was that as Dr. B was thoroughly familiar with all the complications of my case it made sense for him to continue following me. But anyone else there who would have me as a patient would be starting from scratch. Much as I love Boston, it is an expensive and time consuming trip, so we'll see how RG does with any possible complications.
This anniversary is, in many ways, even more of a celebration than last year's. Last year was the foundation for what has come, was an integral part of my healing. Since then there has been more physical, psychological and spiritual healing then the five previous years combined. Of late there has been a deliberate shift in my thought process from what my body can't do to what it can accomplish. My boundaries are becoming larger and larger and with this has returned more of my positive reactions and attitude towards things than has been present for years.
All of this wonderfulness does not mean that I'm able to do everything, or that there are not physical restrictions. But, as my frequent phrase went during the earlier parts of recovery, it's all relevant. In comparison to what was predicted by the medical establishment, in comparison to last year and the years before, in comparison to what my daily life had become, the improvement is tremendous. There will probably always be the sternal pain, flares of the thoracotomy site pain, issues from being on the coumadin. Certainly my physical exertion will always be inhibited by blood flow through the tiny valve opening not able to meet high demand. But I'm SOoooo much better than before.
There are many reasons for this improvement. I'll take credit for continuing to push myself, always trying to do a little more each time. Many times the refrain in my mind was like a mantra: 'You can do it, you can do it, a little more, you can do it.' Some has come from other people, from the Spirit putting certain people in my path at the right time, when I was open to receive wisdom. Sometimes it has been comments from you guys, sometimes other friends, sometimes strangers. Cris, who worked the FSM on my foot, was probably the biggest single healing force for me, not only improving my foot, but opening up my mind to release some of the anxiety and pain planted there during the surgeries, especially the first and most horrific one. The Universe/Goddess/Spirit has now put Gael in my path, a yoga instructor but also trained and gifted as a healer of the mind and psyche. Continuing to have a good paying job with great health insurance can not be underestimated in keeping me calm and allowing me to heal.
Joanne and I are scheduled for a long overdue dinner. I'm hoping for a walk in Valley Forge Park if the weather is good. In nature is where I feel the most spiritual and it would be good to walk in the crisp fall weather while expressing my gratefullness to all and everything which has contributed to my healing.
Thanks to all of you for your love and support during this tough journey. For you and so many others in my life, I am truly blessed. Laurie
posted by Laurie @ 12:00 AM
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