mamalu
Member
First post here, but I have been reading and absorbing the wealth of information on this site for a month or so. This is the most useful lurking experience I've ever had, and I thank you all for your willingness to share your stories. The breadth and depth of knowledge and the kindness and wisdom among your members is truly amazing. I thank you for the support that I've received even though you don't know me.
So now, I'm ready to fix that a bit - the knowing me part, that is.
I am a 60-year-old woman living in the Chicago area who was diagnosed with mild aortic stenosis in 2005. The cardio said, "You have the heart of an 80-year-old, and it's not a matter of IF but WHEN that valve will have to be replaced." When I asked how I'd know, he said, "You'll know." That was useful. Not.
Fast forward to 2010 when I went to the hospital near work after a few hours that morning with unrelenting pressure on my chest. No pain, just pressure, like someone was pushing on it so that I could not really get a good breath. I feared that this was one of those atypical symptoms of a heart attack that can happen to women.
It was not a heart attack. They kept me in the hospital running a gazillion tests. I told them about the AS but it seemed to be trivialized. By the time I left there, I was convinced that I should have never bothered. I walked out feeling stupid for having even gone there. I felt like a hypochondriac that had been brushed off by those "in the know" and it was all in all, an embarrassing experience.
They did not forward the records to my internist as requested. I called to let her know about it, though. And when I saw her 6 months later she said she still had not received the records, so I made arrangements to get them to her.
The next time I saw her was April 2011. She said that my heart murmur no longer sounded "musical" and that there were notable changes on my EKG and that I MUST see a cardio immediately. My original cardio never answered his phone, so she referred me to a new one, and she forwarded my stuff to her.
During my appointment with the new cardio, she explained that my aortic stenosis had gone from mild to severe in the 2005/2010 timeframe. The valve measured 0.6. That was from the hospital records a year earlier! THIS was the first time I ever heard SEVERE, and I was stunned. I would not ever had ignored SEVERE, but I was clueless. Why? Because I had no idea of what to look for. I had no idea that my fatigue and my lack of stamina and my shortness of breath were clues to anything other than being overweight with asthma! She ordered an echo the next day, and although the pressure had increased, the size of the opening had not. But she said the time is now...
So I began my investigation into doctors and hospitals, including Cleveland Clinic and Mayo, along with several well-known hospitals in the Chicago area - 8 in all. What an eye-opener that was. Wow. Mortality rate, morbidity rate, hospital acquired infection stats, and on and on and on... And then the surgeons... Yikes! Daunting and overwhelming.
Meanwhile, I was having a bunch of other tests at my local hospital, and it did not take long for me to eliminate that place from my list! For one thing, they only did 34 of these surgeries last year - at less than 3 per month, I knew the ineptitude and disrespect that I'd experienced during these tests would not likely improve for a surgery that was done so seldom. I wanted to be confident that I was in the best care, and that was just not going to happen at this place. (And no, I'm not naming it.)
So I decided on Northwestern Memorial Hospital and Dr. Patrick McCarthy. Right after making that decision, the Chicago Tribune published a series of articles naming him in some kind of deal about the annular ring that he'd invented (or co-invented) which did not have all the proper FDA approvals... I scrutinized these allegations, and decided what I need from a surgeon are his brain, his eyes, his hands, and his experience. That was not going to change, and further, my procedure would not be using that device. I got some serious grief from family members for sticking with my decision, too.
Fast forward to this week and the reason I am posting this now... On Tuesday, I went to NMH for yet another echo, an appt with a new cardio, and an appt with McCarthy. The echo went well - in fact, it was the most thorough echo I've ever had. And the woman who did it made such a good impression... She draped a towel across me for privacy, and I was never exposed. That meant a lot to me, and I thanked her, telling her that's the first time in years that had ever been done. I know I will have to check my dignity at the door tomorrow, but with luck, they'll have already knocked me out...
Then the big glitch occurred... Turns out Dr. McCarthy has suffered a back injury, and has been out quite a bit, and he was not in that day for my appt. I got the call while walking in to see the cardio, and that just threw me for a loop. I was raving - another day off work to see him MAYBE tomorrow, but more importantly, I'd be leaving that day without knowing when my surgery would be scheduled, and I'd still be in this waiting game... Oh, man! I was sweating rivulets and I just couldn't think straight.
The cardio, Dr. Kansals, was wonderful, and she calmed me down as she reviewed my records and asked me a ton of questions. She is the one who explained about the missed appointments and rescheduled surgeries that Dr. McCarthy has had because of his back injury. Then she said - you cannot wait for his schedule to open up. You need this now; it is that pressing. She said that if she needed this surgery, she would be fine with any of these heart surgeons at NMH - that they're all experienced and had worked under Dr. McCarthy for years... And stressing the urgency again, she said she'd go see who was available to see me today and check the OR schedule.
When she left the room, I just gave in and prayed. I said, "I can't drive this bus any more, Lord, You need to take over." And instantly, I felt a sense of peace and calm. By the time Dr. Kansals returned, I was a different person. Both the anxiety and the sweating subsided... I realized that no matter what I plan or how I figure, things just happen that are out of my control. That is sometimes a hard pill to swallow, but swallow it, I did.
I met the surgeon, Dr. Malaiserie, and I liked him right away. He's clearly intelligent and receptive to questions. We discussed everything on my list (which I had gathered from so many posts on this site!). He explained that this was "more severe than just severe" and that I should not delay. I inferred that I've been on borrowed time for awhile now... I'm happy to know that my luck is not confined just to casinos! (Thank You, Lord!) And now I'm on the docket. Yikes again.
So the plan is this: Dr. Malaiserie will perform the surgery on Friday, June 10th. He said I am a good candidate for the minimally-invasive incision which would be a shorter incision to the left and on a slight angle rather than the longer straight up the center incision, but I should be prepared for either if he deems it necessary. He will use a bovine valve which "has a 90% chance of lasting 10 years and an 80% chance of lasting 20 years." All my tests indicated that there were no blockages in the coronary arteries and no apparent other issues, so it should be just valve out, valve in, and go. Ha! Would that it were that easy!
My son and a couple of siblings will be there, so I've got a decent support network. My anxiety level is down, I've accepted my circumstances, and I'm ready for this, as ready as I can be.
My crystal ball says that although recovery from surgery will be challenging, in the long run, my life will be vastly improved. I'll be able to walk more than 150 steps without resting. I will have a good working pump getting that much needed oxygen to all my body parts... My sweating and incessant peeing should ease up. My ankles and legs will eventually stop swelling. And if that really is true, I'm gonna buy a pair of RED STILETTO HEELS to show off those ankles! And then I'm going to put them in a glass viewing box so I can see that I COULD wear them even though I can't (and wouldn't really ever) walk in them! LOL! And with increased energy and stamina, enhanced by some cardiac rehab, I will lose a chunk of weight...
A year from now? I'm gonna be proud of myself again. I remember liking that feeling...
In the meantime, I'm committed to doing what I have to do to recover and to thrive.
So there you have it - my Ticker Tales. My sister or I will come back here to report once I'm on the other side of the mountain. Thanks to you all for your support and your generosity of spirit in participating on this site.
Mary Lou
So now, I'm ready to fix that a bit - the knowing me part, that is.
I am a 60-year-old woman living in the Chicago area who was diagnosed with mild aortic stenosis in 2005. The cardio said, "You have the heart of an 80-year-old, and it's not a matter of IF but WHEN that valve will have to be replaced." When I asked how I'd know, he said, "You'll know." That was useful. Not.
Fast forward to 2010 when I went to the hospital near work after a few hours that morning with unrelenting pressure on my chest. No pain, just pressure, like someone was pushing on it so that I could not really get a good breath. I feared that this was one of those atypical symptoms of a heart attack that can happen to women.
It was not a heart attack. They kept me in the hospital running a gazillion tests. I told them about the AS but it seemed to be trivialized. By the time I left there, I was convinced that I should have never bothered. I walked out feeling stupid for having even gone there. I felt like a hypochondriac that had been brushed off by those "in the know" and it was all in all, an embarrassing experience.
They did not forward the records to my internist as requested. I called to let her know about it, though. And when I saw her 6 months later she said she still had not received the records, so I made arrangements to get them to her.
The next time I saw her was April 2011. She said that my heart murmur no longer sounded "musical" and that there were notable changes on my EKG and that I MUST see a cardio immediately. My original cardio never answered his phone, so she referred me to a new one, and she forwarded my stuff to her.
During my appointment with the new cardio, she explained that my aortic stenosis had gone from mild to severe in the 2005/2010 timeframe. The valve measured 0.6. That was from the hospital records a year earlier! THIS was the first time I ever heard SEVERE, and I was stunned. I would not ever had ignored SEVERE, but I was clueless. Why? Because I had no idea of what to look for. I had no idea that my fatigue and my lack of stamina and my shortness of breath were clues to anything other than being overweight with asthma! She ordered an echo the next day, and although the pressure had increased, the size of the opening had not. But she said the time is now...
So I began my investigation into doctors and hospitals, including Cleveland Clinic and Mayo, along with several well-known hospitals in the Chicago area - 8 in all. What an eye-opener that was. Wow. Mortality rate, morbidity rate, hospital acquired infection stats, and on and on and on... And then the surgeons... Yikes! Daunting and overwhelming.
Meanwhile, I was having a bunch of other tests at my local hospital, and it did not take long for me to eliminate that place from my list! For one thing, they only did 34 of these surgeries last year - at less than 3 per month, I knew the ineptitude and disrespect that I'd experienced during these tests would not likely improve for a surgery that was done so seldom. I wanted to be confident that I was in the best care, and that was just not going to happen at this place. (And no, I'm not naming it.)
So I decided on Northwestern Memorial Hospital and Dr. Patrick McCarthy. Right after making that decision, the Chicago Tribune published a series of articles naming him in some kind of deal about the annular ring that he'd invented (or co-invented) which did not have all the proper FDA approvals... I scrutinized these allegations, and decided what I need from a surgeon are his brain, his eyes, his hands, and his experience. That was not going to change, and further, my procedure would not be using that device. I got some serious grief from family members for sticking with my decision, too.
Fast forward to this week and the reason I am posting this now... On Tuesday, I went to NMH for yet another echo, an appt with a new cardio, and an appt with McCarthy. The echo went well - in fact, it was the most thorough echo I've ever had. And the woman who did it made such a good impression... She draped a towel across me for privacy, and I was never exposed. That meant a lot to me, and I thanked her, telling her that's the first time in years that had ever been done. I know I will have to check my dignity at the door tomorrow, but with luck, they'll have already knocked me out...
Then the big glitch occurred... Turns out Dr. McCarthy has suffered a back injury, and has been out quite a bit, and he was not in that day for my appt. I got the call while walking in to see the cardio, and that just threw me for a loop. I was raving - another day off work to see him MAYBE tomorrow, but more importantly, I'd be leaving that day without knowing when my surgery would be scheduled, and I'd still be in this waiting game... Oh, man! I was sweating rivulets and I just couldn't think straight.
The cardio, Dr. Kansals, was wonderful, and she calmed me down as she reviewed my records and asked me a ton of questions. She is the one who explained about the missed appointments and rescheduled surgeries that Dr. McCarthy has had because of his back injury. Then she said - you cannot wait for his schedule to open up. You need this now; it is that pressing. She said that if she needed this surgery, she would be fine with any of these heart surgeons at NMH - that they're all experienced and had worked under Dr. McCarthy for years... And stressing the urgency again, she said she'd go see who was available to see me today and check the OR schedule.
When she left the room, I just gave in and prayed. I said, "I can't drive this bus any more, Lord, You need to take over." And instantly, I felt a sense of peace and calm. By the time Dr. Kansals returned, I was a different person. Both the anxiety and the sweating subsided... I realized that no matter what I plan or how I figure, things just happen that are out of my control. That is sometimes a hard pill to swallow, but swallow it, I did.
I met the surgeon, Dr. Malaiserie, and I liked him right away. He's clearly intelligent and receptive to questions. We discussed everything on my list (which I had gathered from so many posts on this site!). He explained that this was "more severe than just severe" and that I should not delay. I inferred that I've been on borrowed time for awhile now... I'm happy to know that my luck is not confined just to casinos! (Thank You, Lord!) And now I'm on the docket. Yikes again.
So the plan is this: Dr. Malaiserie will perform the surgery on Friday, June 10th. He said I am a good candidate for the minimally-invasive incision which would be a shorter incision to the left and on a slight angle rather than the longer straight up the center incision, but I should be prepared for either if he deems it necessary. He will use a bovine valve which "has a 90% chance of lasting 10 years and an 80% chance of lasting 20 years." All my tests indicated that there were no blockages in the coronary arteries and no apparent other issues, so it should be just valve out, valve in, and go. Ha! Would that it were that easy!
My son and a couple of siblings will be there, so I've got a decent support network. My anxiety level is down, I've accepted my circumstances, and I'm ready for this, as ready as I can be.
My crystal ball says that although recovery from surgery will be challenging, in the long run, my life will be vastly improved. I'll be able to walk more than 150 steps without resting. I will have a good working pump getting that much needed oxygen to all my body parts... My sweating and incessant peeing should ease up. My ankles and legs will eventually stop swelling. And if that really is true, I'm gonna buy a pair of RED STILETTO HEELS to show off those ankles! And then I'm going to put them in a glass viewing box so I can see that I COULD wear them even though I can't (and wouldn't really ever) walk in them! LOL! And with increased energy and stamina, enhanced by some cardiac rehab, I will lose a chunk of weight...
A year from now? I'm gonna be proud of myself again. I remember liking that feeling...
In the meantime, I'm committed to doing what I have to do to recover and to thrive.
So there you have it - my Ticker Tales. My sister or I will come back here to report once I'm on the other side of the mountain. Thanks to you all for your support and your generosity of spirit in participating on this site.
Mary Lou
