TenuousGrip
Senior Member
- Messages
- 297
It's been a rough go for me lately but I feel like I should push myself to write this in the hopes that something ... anything good might come from it. I've said some of it before ....
@debored13 is having some cardiac symptoms. Many of us are. I suggested that he look into Cardiology and an echocardiogram.
But that probably isn't the end of the story; it's likely the beginning.
I've had four or five echos since my cardiac symptoms came on suddenly in September 2014 -- echo, stress echo, bubble echo. They were all deemed pretty normal in the report of the MD tasked with interpreting them.
But I wasn't so sure, so I took an immense amount of time and non-existent energy to look at the actual numbers from the echo, and not the MD's interpretation of those numbers. That obviously means that I had to learn what every single abnormal parameter meant (puzzle pieces), and then put those puzzle pieces together until some sort of picture formed.
And the picture that I saw looked like heart failure.
Five Cardiologists and Electrophysiologists (specialists in heart rhythm disorders) disagreed with me. None would order the next logical test -- right heart catheterization -- to see if I was right.
So I sent my echos to Brigham and Women's Hospital -- David Systrom. He totally agreed with me. That's how I got to Boston for iCPET (Invasive Cardiopulmonary Exercise Testing) last November, where I was diagnosed with Heart Failure with Preserved Ejection Fraction (HFpEF) and exercise-induced Pulmonary Hypertension (WHO Group II).
Now my task is to figure out what's causing my heart failure. Since traveling to Boston I've had others look at my echocardiograms AND my iCPET results and pronounce them 'normal,' even though the report attached to the iCPET clearly states that I have HFpEF and the Pulmonary Hypertension.
[It makes you wonder if some of these doctors can even read English, much less whether they can properly interpret the actual results associated with the test.]
I have, again, turned my meager resources toward understanding my iCPET results. I have come to believe that they are most consistent with something called a restrictive cardiomyopathy. I figured out who the top restrictive cardiomyopathy people in the US are and reached out to a couple of them, saying "Hey. Does this iCPET report look like a restrictive cardiomyopathy test result to you ??"
It does.
I'm now working on being seen at any of a couple of the country's best Heart Failure/Cardiomyopathy clinics. The things that are likely possibilities for what's wrong with me are pretty much all bad but ... I gots to know.
So ... the "wisdom" I'm trying to impart is .... don't give up. Don't give up on refining your diagnosis. But maybe more importantly ... don't trust that your doctors know what they're doing with us outliers (patients with rare diseases/disorders). Look up all of your (abnormal) test results at the most granular level you can. Understand what abnormal values mean. Come back to PR and get help interpreting those test results (as so many do).
In my very personal opinion ... ME/CFS describes a cluster of symptoms but there may be a couple or dozens or hundreds of different underlying causes among all of us. I think "subtypes" will be of immense value to researchers going forward.
Even if we figure out what happened to my heart (via a biopsy) it will still not answer the critical question -- why ?
But I will try my very best to figure out the answer to that one too -- given enough time.
Don't give up. Don't EVER give up.
I have surrendered but I have not given up. They aren't the same thing. That's something I've learned along the way.
@JBoneske .... this one's for you, too
@debored13 is having some cardiac symptoms. Many of us are. I suggested that he look into Cardiology and an echocardiogram.
But that probably isn't the end of the story; it's likely the beginning.
I've had four or five echos since my cardiac symptoms came on suddenly in September 2014 -- echo, stress echo, bubble echo. They were all deemed pretty normal in the report of the MD tasked with interpreting them.
But I wasn't so sure, so I took an immense amount of time and non-existent energy to look at the actual numbers from the echo, and not the MD's interpretation of those numbers. That obviously means that I had to learn what every single abnormal parameter meant (puzzle pieces), and then put those puzzle pieces together until some sort of picture formed.
And the picture that I saw looked like heart failure.
Five Cardiologists and Electrophysiologists (specialists in heart rhythm disorders) disagreed with me. None would order the next logical test -- right heart catheterization -- to see if I was right.
So I sent my echos to Brigham and Women's Hospital -- David Systrom. He totally agreed with me. That's how I got to Boston for iCPET (Invasive Cardiopulmonary Exercise Testing) last November, where I was diagnosed with Heart Failure with Preserved Ejection Fraction (HFpEF) and exercise-induced Pulmonary Hypertension (WHO Group II).
Now my task is to figure out what's causing my heart failure. Since traveling to Boston I've had others look at my echocardiograms AND my iCPET results and pronounce them 'normal,' even though the report attached to the iCPET clearly states that I have HFpEF and the Pulmonary Hypertension.
[It makes you wonder if some of these doctors can even read English, much less whether they can properly interpret the actual results associated with the test.]
I have, again, turned my meager resources toward understanding my iCPET results. I have come to believe that they are most consistent with something called a restrictive cardiomyopathy. I figured out who the top restrictive cardiomyopathy people in the US are and reached out to a couple of them, saying "Hey. Does this iCPET report look like a restrictive cardiomyopathy test result to you ??"
It does.
I'm now working on being seen at any of a couple of the country's best Heart Failure/Cardiomyopathy clinics. The things that are likely possibilities for what's wrong with me are pretty much all bad but ... I gots to know.
So ... the "wisdom" I'm trying to impart is .... don't give up. Don't give up on refining your diagnosis. But maybe more importantly ... don't trust that your doctors know what they're doing with us outliers (patients with rare diseases/disorders). Look up all of your (abnormal) test results at the most granular level you can. Understand what abnormal values mean. Come back to PR and get help interpreting those test results (as so many do).
In my very personal opinion ... ME/CFS describes a cluster of symptoms but there may be a couple or dozens or hundreds of different underlying causes among all of us. I think "subtypes" will be of immense value to researchers going forward.
Even if we figure out what happened to my heart (via a biopsy) it will still not answer the critical question -- why ?
But I will try my very best to figure out the answer to that one too -- given enough time.
Don't give up. Don't EVER give up.
I have surrendered but I have not given up. They aren't the same thing. That's something I've learned along the way.
@JBoneske .... this one's for you, too