Mended Hearts Open Forum

Hi, I'm new I'm 45 and from NJ and just found out I have something wrong with my heart. I just want to introduce myself and also see your opinions on if I should look for another doctor or wait for my appointment. I've been seeing my regular cardiologist since I was a bout 29 for high blood pressure through the years I've been on and off blood pressure depending on where I was with my weight when I lost enough my doctors allowed me to go off bp meds. Over the last couple of years I've been getting horrible migraines with high blood pressure readings where the top and bottom numbers are extremely high sometimes even going into the triple digits one time at work it was 181/118 p59 and our head nurse had to give me a Clonidine that was 04/20/23. Now I'm thIe totally opposite end of tthe spectrum I checked my bp today and it was 89/61 p57. It was similar the last time I was at the cardiologist because they remarked that it was lose and asked me if I was hydrating. A few months back my cardiologist had me get a cardiac MRI done and we found out my EF is 45% and now my MyChart says Hypertrophic Cardiomyopathy. He told me I need to see a cardiologist who specializes in the heart muscle. He said there is only 1 hospital in our state that treats it Morristown Medical Center I got an appointment but the doctor can't see me until 04/09/26 and they said send my medical records and if there is a cancelation they can get me in earlier. My doctor also said there are doctors in NYC and upon researching that my insurance plan Horizon BCBS of NJ Omnia Platinum Plan doesn't allow me to see doctors out of state - so how do people manage illness like this and worse when they need to see experts and they can't see the experts they need? There has to be other doctors in my state other than this 1 doctor???  Should I wait 8 months? 

Thank you!

Hi, I'm new I'm 45 and from NJ and just found out I have something wrong with my heart. I just want to introduce myself and also see your opinions on if I should look for another doctor or wait for my appointment. I've been seeing my regular cardiologist since I was a bout 29 for high blood pressure through the years I've been on and off blood pressure depending on where I was with my weight when I lost enough my doctors allowed me to go off bp meds. Over the last couple of years I've been getting horrible migraines with high blood pressure readings where the top and bottom numbers are extremely high sometimes even going into the triple digits one time at work it was 181/118 p59 and our head nurse had to give me a Clonidine that was 04/20/23. Now I'm thIe totally opposite end of tthe spectrum I checked my bp today and it was 89/61 p57. It was similar the last time I was at the cardiologist because they remarked that it was lose and asked me if I was hydrating. A few months back my cardiologist had me get a cardiac MRI done and we found out my EF is 45% and now my MyChart says Hypertrophic Cardiomyopathy. He told me I need to see a cardiologist who specializes in the heart muscle. He said there is only 1 hospital in our state that treats it Morristown Medical Center I got an appointment but the doctor can't see me until 04/09/26 and they said send my medical records and if there is a cancelation they can get me in earlier. My doctor also said there are doctors in NYC and upon researching that my insurance plan Horizon BCBS of NJ Omnia Platinum Plan doesn't allow me to see doctors out of state - so how do people manage illness like this and worse when they need to see experts and they can't see the experts they need? There has to be other doctors in my state other than this 1 doctor???  Should I wait 8 months? 

Thank you!

Hi, I'm new I'm 45 and from NJ and just found out I have something wrong with my heart. I just want to introduce myself and also see your opinions on if I should look for another doctor or wait for my appointment. I've been seeing my regular cardiologist since I was a bout 29 for high blood pressure through the years I've been on and off blood pressure depending on where I was with my weight when I lost enough my doctors allowed me to go off bp meds. Over the last couple of years I've been getting horrible migraines with high blood pressure readings where the top and bottom numbers are extremely high sometimes even going into the triple digits one time at work it was 181/118 p59 and our head nurse had to give me a Clonidine that was 04/20/23. Now I'm thIe totally opposite end of tthe spectrum I checked my bp today and it was 89/61 p57. It was similar the last time I was at the cardiologist because they remarked that it was lose and asked me if I was hydrating. A few months back my cardiologist had me get a cardiac MRI done and we found out my EF is 45% and now my MyChart says Hypertrophic Cardiomyopathy. He told me I need to see a cardiologist who specializes in the heart muscle. He said there is only 1 hospital in our state that treats it Morristown Medical Center I got an appointment but the doctor can't see me until 04/09/26 and they said send my medical records and if there is a cancelation they can get me in earlier. My doctor also said there are doctors in NYC and upon researching that my insurance plan Horizon BCBS of NJ Omnia Platinum Plan doesn't allow me to see doctors out of state - so how do people manage illness like this and worse when they need to see experts and they can't see the experts they need? There has to be other doctors in my state other than this 1 doctor???  Should I wait 8 months? 

Thank you!

Karen,

Please reach out to the HCMA (Hypertrophic Cardiomyopathy Association) - https://www.4hcm.org/ - They are an amazing resource for patients with HCM and big hearts. They are located in NJ and you can schedule a patient navigation call. Call them and they will walk you through. https://www.4hcm.org/ - My suggestion is that you go to a Center of Excellence for HCM. The HCMA can point you toward one and help you figure out insurance. 

I was diagnosed with HCM in 2016 but only learning about the HCMA in 2022. I really wish I'd known about them and worked with them during my entire experience as a patient. They are fabulous and have an annual patient meeting in NJ in October that you should consider attending. What I know about HCM is that everyone's experience is unique. I'll share mine but please know that yours may not be the same. 

I've had HCM my whole life. I am positive for the MYH7 gene. My symptoms and disease progression started in my mid-forties. This is very common as most HCM patients have no symptoms or are misdiagnosed with asthma or anxiety or other issues. I was diagnosed after experiencing chest pains, ( I thought I was just stressed), via an echocardiogram and stress test. If you'd like to hear more about my individual story, I'm happy to share but most of us have unique clinical pathways and there a good and excellent emerging treatment strategies. Good luck!

Hi, I'm new I'm 45 and from NJ and just found out I have something wrong with my heart. I just want to introduce myself and also see your opinions on if I should look for another doctor or wait for my appointment. I've been seeing my regular cardiologist since I was a bout 29 for high blood pressure through the years I've been on and off blood pressure depending on where I was with my weight when I lost enough my doctors allowed me to go off bp meds. Over the last couple of years I've been getting horrible migraines with high blood pressure readings where the top and bottom numbers are extremely high sometimes even going into the triple digits one time at work it was 181/118 p59 and our head nurse had to give me a Clonidine that was 04/20/23. Now I'm thIe totally opposite end of tthe spectrum I checked my bp today and it was 89/61 p57. It was similar the last time I was at the cardiologist because they remarked that it was lose and asked me if I was hydrating. A few months back my cardiologist had me get a cardiac MRI done and we found out my EF is 45% and now my MyChart says Hypertrophic Cardiomyopathy. He told me I need to see a cardiologist who specializes in the heart muscle. He said there is only 1 hospital in our state that treats it Morristown Medical Center I got an appointment but the doctor can't see me until 04/09/26 and they said send my medical records and if there is a cancelation they can get me in earlier. My doctor also said there are doctors in NYC and upon researching that my insurance plan Horizon BCBS of NJ Omnia Platinum Plan doesn't allow me to see doctors out of state - so how do people manage illness like this and worse when they need to see experts and they can't see the experts they need? There has to be other doctors in my state other than this 1 doctor???  Should I wait 8 months? 

Thank you!