Voices of Heart Failure

(This page features writing from heart failure patients, shared and submitted to this blog site. For more information and submission guidelines, Contact Sharon by clicking here. )

What Can I Say About Heart Failure?

By BMK, heart failure patient

What can I say about heart failure? For one thing I have had to change my life style. Of course everyone has to be constantly changing their lifestyle….eating less meat, watching the fat, the sugar the salt.  But with heart failure it changes from “wouldn’t it be nice” to “I have to do it today and always” or my weight will go up. If my weight goes up, I have to take more diuretic and if I have to take more diuretic, my kidneys will wear out faster.  And then I must weigh myself. Every day when I can barely walk because of morning stiffness and grogginess  I stand naked on the scales  because I don’t want the weight of even the sheerest nightie to augment the bad news of  those numbers staring back at me. Gone are the days when I can breezily enjoy a coffee and newspaper, dress and get on with the day without once thinking about such a depressing subject as my WEIGHT.

So that’s a start. Then I have to take my pills and think about the day’s food. I spend a great deal of time grocery shopping because a) my husband doesn’t cook and b) all our food must be made by scratch to avoid sodium loading. I had hoped earlier on after my diagnosis that my husband might step up to the plate to help with cooking. But every time he tries, it is a disaster.  One weekend with company staying over, I asked him to bake bacon in the oven on our largest baking sheet which is a sheet pan that fills the oven. He chose a cookie sheet without sides which caused flames and black smoke to leap out of the oven. He put two heaping teaspoons of decaf instant coffee in my cup instead of one. How can you ruin decaf?  Why decaf?  Because the Mayo Clinic advises that caffeine may be a trigger for atrial fibrillation which in my case was uncontrolled and the trigger for my HF. Along with alcohol too sadly.  Its not easy to make food palatable when sodium is omitted and I’m the one with the skills.

But he tries, he really does and he can grate parmesan cheese well. But then I’m not really supposed to have parmesan cheese or any hard cheese or bacon for that matter. Or ham or even chicken unless it’s air chilled. Or pizza or bread or Mexican or Asian food or soup…..in fact just about any food at all that is served in a restaurant or packaged in a grocery store. I find myself scanning frozen meat patties for sodium and discovered that they are so loaded that even a burger patty must be made from scratch.  Seriously, a heart failure nurse shared with me that the hf diet is even harder to follow than the diabetes diet. So what I’m saying is that heart failure requires one’s hourly and daily attention and intention. You can never ever forget.

Next up is exercise. You might think I get a lot of exercise cooking and I suppose I do but it’s not really the type I need. Because my heart is weak, I have a goal of 7000 steps a day. It is a modest goal but even with the greatest of intentions I achieve it less than half the time. Time is my big enemy and fatigue and arthritis. X-rays show that my left hip has only moderate arthritis, but it does make walking difficult. I have a pronounced limp and I am told an unusual gait. I know I do. I can feel it but can’t seem to change it. Last winter I walked daily in our village indoor arena which was cold and often dark but warmer than outside and had the advantage of being climate controlled. No ice underfoot or rain from above. But it was VERY LONELY and DEPRESSING. Nevertheless, she persevered!

This spring and summer I was able to cycle again and it has been a life saver, especially emotionally. On a bicycle, I do not limp and have no pain. I can fly through the fields and countryside around my village. I relish the minute gradations in the changes of the weather and seasons. It is truly exhilarating, and I can now cycle 15 kilometers quite easily which, if I put my fitness tracker around my ankle, is 7000 steps. I have even signed up for a cycling trip in France which I leave on soon. I had thought that that part of my life was over.

I am lucky. My heart failure is stable. My cardiologist only wants to see me every six months. I am doing everything in my power to preserve the heart function that I have, knowing that my condition is progressive. With cancer, one is always on the lookout for the fact that it could return. But with heart failure we know that it WILL return. The acute stage of heart failure two and a half years ago seared my memory with images of constant nausea, the need for three pillows to sleep at night, difficulty walking to the car, or even making my bed or setting the table.  I know that these good times can’t last forever. But I do know what I have and I am grateful. I did not ever think I would feel strength and exhilaration again but I do now.  ##