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25,000 PVCs QD for Years/Cardiomyopathy/LVEF Dropping
by Keen7, Oct 24, 2009 02:22PM
I have been seen and evaluated for multi focal PVC's, documented at 25,000+ daily for six years at a world class teaching institution. I have not been considered a good candidate for ablation due to the many foci involved. After several medication failures, I took verapamil to very little effect for five years. From my point of view, my quality of life has declined steadily, while my physician has repeatedly dismissed my concerns, saying no ablation or other treatment was possible, and reassured me that I will live a long life, dying from something other than my heart's condition.
When I first developed symptoms, my LVEF was 65%. On 2-D echo, my LVEF had been dropping, but my physician kept saying it was measurement error, or because I was a great athlete (I am not). My doctor had never done a stress test with me; this spring, when I complained of chest pain, one was performed which revealed my LVEF was 41%, a 9% drop in one year. When I asked (he did not volunteer), he said that my heart was enlarged to the maximum of normal. Now that I have my records, I see that my heart's functioning has been going down for years.
When I asked for possible causes, one was PVCs, but only if I had 25,000/day...which is what I have. He had forgotten.
Because this happened "on his watch," I sense my physician is primarily concerned with making me and my problem go away. He does not answer direct questions and has actually been truly rude and dismissive with me. Thus, while facing a health "crisis," the physician I have seen for so long is not the person to whom I can turn. This alone is frightening. He started me on Coreg. My pulse in his office was 48 at that time. After my pulse dropped even farther, he stopped the Verapamil.
Personal Background: I'm an active mid-50's-year old mother of two grown children, married many years, who has exercised, eaten right, has not smoked, don't drink alcohol, my entire life. I have back trouble, but am very active. I've taken Lipitor and meds for my back (Celebrex, Neurontin) for many years. I work two part time jobs. I am tall and average weight. I have a rich, full life...but one I am increasingly pressed to enjoy as the result of my heart. I have for some time felt increasingly "cruddy," especially later in the day; this stands in stark contrast to my personality. My physician has assured me that my symptoms are in no way related to menopause, which is past. I have literally felt like I am just slowly dying, which seems like a pretty extreme way to feel!
Today: I am on Coreg 25mg QD. My BP is okay. My pulse is low. I have chest pain and shortness of breath a great deal. I have learned to talk thru my breathlessness (masking the symptom). I sleep on 3 pillows; until I did so, I awoke in the middle of the night frequently with what seemed like my heart racing. I primarily have chest pain/neck/arm pain upon exertion and after eating. I am occasionally very dizzy, about to faint (with the rushing/ringing in the ears, etc.), and it is often (oddly, to me), when I am sitting, often after eating. When I stand, I walk or do slight knee bends to keep my blood flowing.
Interval: Over the past two weeks, the right side of my face is tingling, especially my lips. I assume it is low-level migraine. I have a history of gastritis, with a couple of trips to the ER for this. One was last year. My Celebrex really irritates my stomach. I currently take omeprazole and half the Celebrex dose I once took. The Celebrex also helps control my migraines, which are very very severe since my last pregnancy. I rarely have one now.
When I increased the Coreg to 25mg/QD this past summer, I ended up in the ICU with chest pain and an extremely abnormal EKG at our local small hospital. They asked me to follow up with my doctor, who did not even call back.
Family history: Two grandmothers who died in their 90s. Two grandfathers who died of apparent sudden cardiac events in around age 60. My father is 85. My mother died at 69, of PEs brought on by a medication given to her for Alzheimers which caused sudden onset Parkinson's disease. Two brothers, both healthy, one with high BP.
While I have not had a significant virus in many many years, I have had a stressful home life. My mother died in 2002, a great tragedy to me, and I literally said (when this started), that I felt like my heart was breaking. Her presence in my life also buffered stress in my home life, which is significant and has increased dramatically.
I am in the middle of switching doctors (it took over 5 months). The new physician, at another world class institution, ordered a LV echo/stress test treadmill and a 48 hour holter (now wearing it). During the stress test this past week, my heart revealed some kind of serious cardiomyopathy. The cardiologist overseeing the test actually was afraid to send me home. She said that my heart muscle was doing the opposite of what it is supposed to do under stress (I think she said it was going in, not out; I was scared and lightheaded, on 02). They reluctantly released me with a plan to come right back for a full surface echo and to see my doctor immediately thereafter.
I am frightened.. I am not clear about what the Coreg is to accomplish, because I am not clear on what I have, what is wrong, what caused it. I am concerned about what my options are if it does not "work". If my LVEF decreases 10% a year for three more years, I fear I will be dead.
So the questions:
1. What questions should I ask when I see my (new) doctor this week?
2. Should I continue to see my (old) doctor? I have a follow up with him this week as well. He told me at my last visit that he would treat himself if he had the same condition, because he's "the best there is."
3. What are the chances that my condition is caused by stress...broken heart syndrome...? It's been 7 years since my mother died. What treatment options exist?
4. What are the chances that my condition is caused by 25,000+ multi focal PVC's daily? What are my options? Most meds have failed and I'm a poor ablation candidate. (Altho' my new MD mentioned that ablating a primary focus might help, as the multi focal PVCs might be a "cascade effect" from a primary focus.)
5. Is a virus possible? {My brother developed viral myocarditis years ago and was in the CICU for an extended time. He's incredibly fit. I mention it as family history.} Could a virus I had literally ten years ago have caused this? Or started this process? (I have had influenza once, and a severe, sudden onset respiratory infection/bronchitis which was weird...it started after I had played a hard sports game, within hours I could not breathe.). If so, what treatments exist, and what results? My brother's LVEF improved over time; mine is going down.
6. The last I heard, my arteries were clean and clear on echo. If they are not today, what treatment options exist? If treated, what will my heart health look like?
What can I do other than pray? I feel like it is very difficult for me to get good medical care. I am shocked that I can see someone at a top institution for many years, the best in the country, and get to this place. I am not looking to sue anyone, by the way. But I don't know what to do.
When I first developed symptoms, my LVEF was 65%. On 2-D echo, my LVEF had been dropping, but my physician kept saying it was measurement error, or because I was a great athlete (I am not). My doctor had never done a stress test with me; this spring, when I complained of chest pain, one was performed which revealed my LVEF was 41%, a 9% drop in one year. When I asked (he did not volunteer), he said that my heart was enlarged to the maximum of normal. Now that I have my records, I see that my heart's functioning has been going down for years.
When I asked for possible causes, one was PVCs, but only if I had 25,000/day...which is what I have. He had forgotten.
Because this happened "on his watch," I sense my physician is primarily concerned with making me and my problem go away. He does not answer direct questions and has actually been truly rude and dismissive with me. Thus, while facing a health "crisis," the physician I have seen for so long is not the person to whom I can turn. This alone is frightening. He started me on Coreg. My pulse in his office was 48 at that time. After my pulse dropped even farther, he stopped the Verapamil.
Personal Background: I'm an active mid-50's-year old mother of two grown children, married many years, who has exercised, eaten right, has not smoked, don't drink alcohol, my entire life. I have back trouble, but am very active. I've taken Lipitor and meds for my back (Celebrex, Neurontin) for many years. I work two part time jobs. I am tall and average weight. I have a rich, full life...but one I am increasingly pressed to enjoy as the result of my heart. I have for some time felt increasingly "cruddy," especially later in the day; this stands in stark contrast to my personality. My physician has assured me that my symptoms are in no way related to menopause, which is past. I have literally felt like I am just slowly dying, which seems like a pretty extreme way to feel!
Today: I am on Coreg 25mg QD. My BP is okay. My pulse is low. I have chest pain and shortness of breath a great deal. I have learned to talk thru my breathlessness (masking the symptom). I sleep on 3 pillows; until I did so, I awoke in the middle of the night frequently with what seemed like my heart racing. I primarily have chest pain/neck/arm pain upon exertion and after eating. I am occasionally very dizzy, about to faint (with the rushing/ringing in the ears, etc.), and it is often (oddly, to me), when I am sitting, often after eating. When I stand, I walk or do slight knee bends to keep my blood flowing.
Interval: Over the past two weeks, the right side of my face is tingling, especially my lips. I assume it is low-level migraine. I have a history of gastritis, with a couple of trips to the ER for this. One was last year. My Celebrex really irritates my stomach. I currently take omeprazole and half the Celebrex dose I once took. The Celebrex also helps control my migraines, which are very very severe since my last pregnancy. I rarely have one now.
When I increased the Coreg to 25mg/QD this past summer, I ended up in the ICU with chest pain and an extremely abnormal EKG at our local small hospital. They asked me to follow up with my doctor, who did not even call back.
Family history: Two grandmothers who died in their 90s. Two grandfathers who died of apparent sudden cardiac events in around age 60. My father is 85. My mother died at 69, of PEs brought on by a medication given to her for Alzheimers which caused sudden onset Parkinson's disease. Two brothers, both healthy, one with high BP.
While I have not had a significant virus in many many years, I have had a stressful home life. My mother died in 2002, a great tragedy to me, and I literally said (when this started), that I felt like my heart was breaking. Her presence in my life also buffered stress in my home life, which is significant and has increased dramatically.
I am in the middle of switching doctors (it took over 5 months). The new physician, at another world class institution, ordered a LV echo/stress test treadmill and a 48 hour holter (now wearing it). During the stress test this past week, my heart revealed some kind of serious cardiomyopathy. The cardiologist overseeing the test actually was afraid to send me home. She said that my heart muscle was doing the opposite of what it is supposed to do under stress (I think she said it was going in, not out; I was scared and lightheaded, on 02). They reluctantly released me with a plan to come right back for a full surface echo and to see my doctor immediately thereafter.
I am frightened.. I am not clear about what the Coreg is to accomplish, because I am not clear on what I have, what is wrong, what caused it. I am concerned about what my options are if it does not "work". If my LVEF decreases 10% a year for three more years, I fear I will be dead.
So the questions:
1. What questions should I ask when I see my (new) doctor this week?
2. Should I continue to see my (old) doctor? I have a follow up with him this week as well. He told me at my last visit that he would treat himself if he had the same condition, because he's "the best there is."
3. What are the chances that my condition is caused by stress...broken heart syndrome...? It's been 7 years since my mother died. What treatment options exist?
4. What are the chances that my condition is caused by 25,000+ multi focal PVC's daily? What are my options? Most meds have failed and I'm a poor ablation candidate. (Altho' my new MD mentioned that ablating a primary focus might help, as the multi focal PVCs might be a "cascade effect" from a primary focus.)
5. Is a virus possible? {My brother developed viral myocarditis years ago and was in the CICU for an extended time. He's incredibly fit. I mention it as family history.} Could a virus I had literally ten years ago have caused this? Or started this process? (I have had influenza once, and a severe, sudden onset respiratory infection/bronchitis which was weird...it started after I had played a hard sports game, within hours I could not breathe.). If so, what treatments exist, and what results? My brother's LVEF improved over time; mine is going down.
6. The last I heard, my arteries were clean and clear on echo. If they are not today, what treatment options exist? If treated, what will my heart health look like?
What can I do other than pray? I feel like it is very difficult for me to get good medical care. I am shocked that I can see someone at a top institution for many years, the best in the country, and get to this place. I am not looking to sue anyone, by the way. But I don't know what to do.
Member Comments (1)
by L667, Oct 27, 2009 08:03PM
Have you seen an electrophysiologist?
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