Oct 11
BrendaDnNC
BrendaDnNC , Posted on SUPPORT NETWORK Blog

Nothing much is wrong, but it's slowly killing me nevertheless....

I was diagnosed with inflammatory breast cancer in 2009 and received dose-dense (every two weeks) chemo for 4 months, followed by surgery and then 6 weeks of daily radiation.  The rads were on the right--not the left, where the heart is.  But the chemo contained quite a bit of known cardiotoxic drugs. 

Immediately after my treatments were done, I was debilitated but more or less functional in my daily life.  I began an exercise program for cancer survivors, which I participated in for 3-4 months (the limit).  During that program, my target heart rate was 120, and I'd have to walk on a treadmill briskly for 12-15 minutes to reach that heart rate.  After the exercise program, I walked half a mile twice a day (on an incline), 5 days a week.  I also walked up and down a flight of stairs at least 3-4 times a day, 5 days a week. 

As the years went on, I became progressively less able to do these exercises.  By the end of three years, I couldn't walk up the stairs even once without my heart rate zooming into the 130s, my muscles burning and hurting like I'd just run a marathon, my heart thumping out of my chest, and my breath hard and heavy but I still felt like I wasn't getting enough oxygen.  I couldn't walk my half-mile course without feeling like I'd just run a marathon.  Eventually it got so bad that merely getting up out of my rocker to put a load of clothes on to wash would make my heart rate jump into the 140s.  And if I pushed myself to do the things that I could do fairly easily immediately after my cancer treatments, a couple of hours *after* I had finished the chore I would get an acute manifestation of symptoms that included extreme weakness, shakiness, racing heart that felt like it was working WAAAAYYYY too hard for what I was asking it to do, feeling like I just couldn't get enough oxygen, going ice-cold from the inside out,.... 

Even without these extreme symptoms, I can develop SOB that feels obstructive---it feels like something is in the way of my diaphragm and won't let me breathe deeply enough.  I have spells when I have palpitations that can send me to the floor to lie down so that I don't fall down (even if I'm sitting in a chair at the time it happens). 

As my functional ability declined, I searched for answers: what was causing this and how do I stop it?  I got evaluations from a variety of specialists, including a cardiologist.  Nothing.  I started telling my doctors that it was OK that they couldn't find a reason for my decline.  They'd figure it out at the autopsy.  And I was not entirely joking. 

Then a pulmonologist gave me a cardiopulmonary stress test, which, on the face of it, I passed with flying colors.  (Test a consequence of following up on a possible cancer recurrence.)  No surprises there.  I was passing every medical test with flying colors.  On paper, I was healthy as a horse!  But a couple of hours later, when I was home that evening, the acute symptoms came on again.  Since the doctor knew exactly how much effort I had expended for the test, I reported to her via EPIC messaging, in real-time, how I was feeling.  This freaked her out, and it freaked her out even more when I refused to go to the emergency department because experience had shown that these symptoms were NOT a heart attack.  She looked more closely at my test results and found an anomaly--not a big one, but one suggestive of a heart issue. 

I went back to the cardiologist, who this time managed to find something on echo---diastolic dysfunction.  I wore a holter monitor, had a nuclear stress test, etc.  What she diagnosed me with was a LITTLE BIT of diastolic dysfunction due to left ventricular hypertrophy and mild tachycardia.  MILD.  She kept insisting I do not have heart failure.  A little bit of a beta blocker (metoprolol succinate) would fix it.  And the reason I had become progressively unable to do my regular exercise program was because I needed to exercise -- I was deconditioned.  (Yeah...go figure out how you become deconditioned due to lack of exercise WHILE you are regularly exercising!) 

I, meanwhile, was doing a bit of reading on my own in the medical journal literature and realizing that I had been reporting the exact symptoms of diastolic heart failure with preserved ejection fraction for the last 5 years--with slowly increasing severity.  I found an article about exercise for heart patients that described the exact symptoms I was having when I exerted myself too hard.  And I found the NYHA classification system and realized that "too hard" didn't take much for me, nowadays, because I had been (before seeing the cardiologist this time) entering Class III functional status. 

The beta blocker has backed my functional status off to a Class II again, but I'm noticing, after taking it for 6 months, that it's not working as well.  I've had some episodes of sudden weight gain -- like 5 lbs overnight -- so have taken Lasix on an as-needed basis to reduce fluid build-up.  But the Lasix never removes all of whatever I gain overnight, when I gain significant amounts like that. 

But, says my cardiologist, I'm not in heart failure.  (Or rather, my cardiologist's NP, who is the person I see.)  And despite my having sent her the medical journal article that perfectly describes the post-exertion symptoms I have reported, she says she can't figure out why I have those symptoms.  They mystify her. 

So....  My official diagnosis is mild left ventricular hypertrophy, preserved ejection fraction, and a bit of tachycardia.  However, functionally I'm in Class II and hovering on the edge of being Class III (thanks to metoprolol, only hovering, now) -- a level of debility not likely with such a low-grade diagnosis.  If you listen to my symptom pattern over time and not just the formal test results, I have diastolic heart failure with preserved ejection fraction.  It's your call, how you want to think of me and my situation. 
3 Comments
  • AHAASAKatie
    AHAASAKatie,
    Thank you so much for sharing this story. I did want to encourage you to visit our Heart/Cancer Support Community and share there as well. http://supportnetwork.heart.org/groups/home/55 Best Katie
  • BrendaDnNC
    BrendaDnNC,
    Would love to visit said community, Katie, if I could only figure out where it is!!!
  • BrendaDnNC
    BrendaDnNC,
    Oh, oh! Wait. I think I found it. Thanks for the suggestion, Katie. I've been looking for a group like this for 6 months.
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