Fight for Life

<sigh>

I have accepted that life isn’t fair. I try not to whine about that, but instead do what I can to change the things I have control over. That’s why I’ve pursued the ultimate cause of what was making me sick – I’m not content to just lie about and accept a life of nothing. I’ll tell you, though, life is trying to take me down.

I’ve gotten some of the test results back, including all of the heart-specific tests. I’m now certain there is something wrong with my heart, and I desperately fear that the cardiologist (Dr F) will try to tell me that it either isn’ t really a problem or that it isn’t serious. The Holter monitor, which records every heart beat for 24-hours, showed that my heart beats at a rate over 100 beats per minute for most of the day and night. I can only sleep when my heart slows down enough, but even then I get woken up in the middle of the whole sleep thing when my heart rate rises. The comments on this test just pointed out that I have sustained sinus tachycardia with sinus arrhythmias (which Dr F said aren’t “real” arrhythmias). From what I’ve read this can be very dangerous.

Yesterday I got the echocardiogram data – both the resting echo and the stress echo. The report with the stress echo said that there was nothing they could find wrong with my heart, but they did at least note that my blood pressure was really low and didn’t get all that high, even when they got my heart rate up to over 180. They also noted that my resting heart rate was in the 120s. The regular echo report was more distressing to me. I think that maybe the tech who wrote the report was just trying to write what she saw without judging it, but it looked like she was saying there was nothing wrong. She noted mitral regurgitation and the machine noted tricuspid regurgitation (basically, the blood flows the wrong way through the heart, either because the valves are messed up or there is some other sort of blockage). She used the word “trace” to describe it, which makes me think that she’s saying “no big deal”. The only thing she noted that was really abnormal is that my heart is hyperdynamic with an ejection fraction (what percentage of the blood in your ventricle is pumped out with each stroke) over 75%. This is a measurement that Dr Cheney said is suggestive of left ventricular dysfunction, the idea being that the atria are working harder to compensate for the lack of filling in the ventricles. I found this chart on a website with American Heart Association articles. The illustration at the top right shows how the ratio of E-waves/A-waves indicates degrees of left ventricular dysfunction, and the measurement I had showed the my E/A ratio is 1.79. That puts me over the threshold for severe dysfunction. That means I am at risk for diastolic heart failure. I know that I have this kind of heart failure right now. Heart failure doesn’t mean you’ve had a heart attack, it just means that the heart isn’t working appropriately, failing to deliver the blood supply your body needs. What usually happens is the blood that can’t get pumped through the heart backs up into the lungs, raising blood pressure in the lungs to the point where blood leaks out and interferes with breathing. Anyone who has spent time with me recently can tell you that I have a persistent cough, which indicates the heart failure. The treatment for this kind of dysfunction depends on the reason you have it, but I don’t have any of the common causes for diastolic dysfunction (hypertension, coronary artery disease, atrial fibrillation, or diabetes). Dr Cheney said that the kind of diastolic dysfunction experienced by those of us with ME cannot be cured right now (it’s a metabolic disorder), so all we can do is support the compensatory mechanisms. The worst part of this whole thing is that once someone has exhibited signs of heart failure, prognosis is poor.

So, all right, bad news, but at least I have Dr B, who has always believed me, puts in the work to understand my condition, and can help support the compensatory mechanisms, right? Well, life just kicked me while I’m down. Due to forces beyond his or my control, Dr B is moving. Out of state. Soon. I’m going to remain a patient at his practice when he moves, but it will not be the same as having a doctor right here who can do something right away. I will have to travel to Minnesota to see him in person (which I think is important, so I’ll be doing that a few times a year). I told my Nurse Practitioner, C, about the situation, and she’s willing to step in where she can, but I get the impression from her that my condition is over her head. I appreciate when someone can admit this, but it makes life even harder for me, as if it wasn’t enough of a struggle. It took me 30 years to find a doctor who recognized that the way I am sick is not normal, understands that I am intelligent and I have good ideas, and works with me and treats me how I want to be treated. I just don’t think I have another 30 years to try again. In short, this is devastating.

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