ilapreynolds
Member
Hi! I am new to this forum and wanted to introduce myself.
I was just diagnosed with 3 heart valve inefficiencies...aortic, mitral, and tricuspid. All three valves are leaking and regurgitating. None of them have stenosis. My heart chambers are not enlarged. My right ventricle systolic pressure is at the upper limits of normal. My left ventricle ejection fraction is 60-65%. I have trace tricuspid regurgitation, mild mitral regurgitation, and moderate aortic regurgitation. The aortic valve is trileaflet. The aortic root is normal. This was a limited echocardiogram with bubble study.
Last year I had a regular echocardiogram. It only showed Rheumatic Disease of the mitral and aortic valves.
I have also been diagnosed with ventricular premature depolarization and atrial premature depolarization, as well as palpitations. My blood pressure monitor has flagged atrial fibrillation, but it was not caught on my holter monitor and I am not diagnosed with it.
I do have shortness of breath, extreme fatigue, and sometimes a dry cough. I deal with swelling and edema.
I also have hypermobile Elhers Danlos Syndrom (hEDS), a connective tissue disorder. I have Rheumatoid Arthritis.
I have been diagnosed from a Pulmonary Function Studies test with mild restrictive lung disease. However, my pulmonologist does not think I have it, since it is so close to border for the cut off of diagnosing it. But, my cardiologist and ENT do think I have mild restrictive lung disease, most likely interstitial lung disease, and do not agree with the pulmonologist. They think it is just in the early stages of the disease.
My blood oxygen levels (SPO2) drop as low as 70, but usually when it drops it is in the low 90s or upper 80s, and often hits 80. But, it's only gone down, as far as I know, to 70 a few times. I am not on oxygen. They have run several tests and do not know why it is doing this. Could this be from the heart valve insufficiencies?
My resting heart rate is in the 70s usually, or the 60s. But, it drops as low as 30 quite often. My heart rate also goes up very high, especially when standing. I have it recorded at home as high as 162, but it has been recorded in the high 180s on a sleep study test. Usually it goes over 100 when standing, or over 116, or over 132 or something like that. It often hits over 130.
I did have a tilt table test and was diagnosed with orthostatic hypotension. I have also been diagnosed with dysautonomia. My cardiologist won't diagnosis me with POTS, even though I meet the criteria, because my blood pressure goes up when standing also. I have talked to him about it being hyperandrenergic POTS (I meet all the symptoms of that) and he thinks that might apply, and could be it, but he hasn't officially diagnosed me with it. He is treating me for my hyperangrenergic state, though.
As far as other diagnoses go, I have 7 pages single spaced of those, but probably over 20 major diagnoses. So, I do have a lot going on in my body.
I have not had my follow up with my cardiologist yet, so I do not know what he will say. I have just seen my medical report and the diagnoses in my patient portal. I am assuming that he will just watch my heart valves.
Have any of you had 3 leaky heart valves? It is concerning that it went from none last year to 3 this year? Or is that normal? Also, I know they usually wait until a heart valve is severely leaking before they do anything, but I read something from a heart doctor that said with multiple valves leaking that they sometimes do surgery before each valve can qualify. Has anyone had any experience with that?
I know everyone is different, but I do wonder how long I might have until this progresses and I have to have valve replacement surgery. If anyone has any advice on typical time frames or how long it takes things to advance, I would appreciate it. I realize that you might not be able to answer that, also. From what I understand from looking things up, it can stay mild, but once it progresses to moderate (like my aortic valve is) then it typically does progresss and eventually advances to needing surgery. Does that sound right with what you have learned? I know that looking things up on the internet is not always accurate.
Any stories or advice is welcome. I am very concerned.
I was just diagnosed with 3 heart valve inefficiencies...aortic, mitral, and tricuspid. All three valves are leaking and regurgitating. None of them have stenosis. My heart chambers are not enlarged. My right ventricle systolic pressure is at the upper limits of normal. My left ventricle ejection fraction is 60-65%. I have trace tricuspid regurgitation, mild mitral regurgitation, and moderate aortic regurgitation. The aortic valve is trileaflet. The aortic root is normal. This was a limited echocardiogram with bubble study.
Last year I had a regular echocardiogram. It only showed Rheumatic Disease of the mitral and aortic valves.
I have also been diagnosed with ventricular premature depolarization and atrial premature depolarization, as well as palpitations. My blood pressure monitor has flagged atrial fibrillation, but it was not caught on my holter monitor and I am not diagnosed with it.
I do have shortness of breath, extreme fatigue, and sometimes a dry cough. I deal with swelling and edema.
I also have hypermobile Elhers Danlos Syndrom (hEDS), a connective tissue disorder. I have Rheumatoid Arthritis.
I have been diagnosed from a Pulmonary Function Studies test with mild restrictive lung disease. However, my pulmonologist does not think I have it, since it is so close to border for the cut off of diagnosing it. But, my cardiologist and ENT do think I have mild restrictive lung disease, most likely interstitial lung disease, and do not agree with the pulmonologist. They think it is just in the early stages of the disease.
My blood oxygen levels (SPO2) drop as low as 70, but usually when it drops it is in the low 90s or upper 80s, and often hits 80. But, it's only gone down, as far as I know, to 70 a few times. I am not on oxygen. They have run several tests and do not know why it is doing this. Could this be from the heart valve insufficiencies?
My resting heart rate is in the 70s usually, or the 60s. But, it drops as low as 30 quite often. My heart rate also goes up very high, especially when standing. I have it recorded at home as high as 162, but it has been recorded in the high 180s on a sleep study test. Usually it goes over 100 when standing, or over 116, or over 132 or something like that. It often hits over 130.
I did have a tilt table test and was diagnosed with orthostatic hypotension. I have also been diagnosed with dysautonomia. My cardiologist won't diagnosis me with POTS, even though I meet the criteria, because my blood pressure goes up when standing also. I have talked to him about it being hyperandrenergic POTS (I meet all the symptoms of that) and he thinks that might apply, and could be it, but he hasn't officially diagnosed me with it. He is treating me for my hyperangrenergic state, though.
As far as other diagnoses go, I have 7 pages single spaced of those, but probably over 20 major diagnoses. So, I do have a lot going on in my body.
I have not had my follow up with my cardiologist yet, so I do not know what he will say. I have just seen my medical report and the diagnoses in my patient portal. I am assuming that he will just watch my heart valves.
Have any of you had 3 leaky heart valves? It is concerning that it went from none last year to 3 this year? Or is that normal? Also, I know they usually wait until a heart valve is severely leaking before they do anything, but I read something from a heart doctor that said with multiple valves leaking that they sometimes do surgery before each valve can qualify. Has anyone had any experience with that?
I know everyone is different, but I do wonder how long I might have until this progresses and I have to have valve replacement surgery. If anyone has any advice on typical time frames or how long it takes things to advance, I would appreciate it. I realize that you might not be able to answer that, also. From what I understand from looking things up, it can stay mild, but once it progresses to moderate (like my aortic valve is) then it typically does progresss and eventually advances to needing surgery. Does that sound right with what you have learned? I know that looking things up on the internet is not always accurate.
Any stories or advice is welcome. I am very concerned.