Hello, everyone. I'm a 66-year old heart failure patient living in rural Tennessee. Here's some background on what eventually brought me to this forum.
Let me preface this by saying that when I retired 4 years ago, it was with no intention of sitting in a rocking chair on the front porch waiting for the Grim Reaper to show up. I was in good health, very active, working out 5-6 days/week, doing volunteer work at church and at a local social enterprise that I helped found. I had lots of hobbies to keep me busy in cold weather, loved gardening in warmer weather and cooking every day whatever the weather. I looked forward to traveling overseas again (having spent 20+ years of business travel in Asia, India, Europe and South America). Retirement was wonderful at the start, then was overshadowed when my (retired) husband started having seizures, and finally came to a screeching halt this January 2019 when I suddenly began having heart palpitations and breathing problems. I had never had any kind of cardiac symptoms or issues before, then one morning during circuit training, my heart and lungs went crazy.
When it happened again the next day, I was too scared to go back to the fitness studio. At around the same time, I suffered a severe cold/flu illness that kept me housebound most of the time. It was caused by a bad reaction to the Lisinopril I began taking in December for elevated blood pressure. Meanwhile, the cardiac symptoms got worse and worse. I could barely climb up 3 steps, struggled to get up from a chair, reach into a kitchen cabinet, you name it… and I went on feeling the symptoms more and more often until I felt that I no longer had any control over my body. Being housebound, especially out here in the country where our nearest neighbors are cows, really did a bad number on me. For the first time, I felt every minute of my age. I went from being superwoman to being a pitiful old lady who could speak of nothing but medical problems.
After months of tests and backing and forthing to my internist, a heart rhythm cardiologist, and a general cardiologist who is also an internist, I was handed a big load of diagnoses, some of them congenital and others probably caused or worsened by my hypertension:
Heart failure
Hypertrophic obstructive cardiomyopathy
Left ventricular bundle branch block
2 heart murmurs
Atrial septal defects (2 holes in my too-thick septum)
I couldn't believe it when my cardiologist told me I have heart failure. It came completely out of the blue. There's a history of hypertension in my family, and my mother had a heart murmur, but otherwise there's nothing cardiac. How could my health go from being wonderful one day and then in big trouble the next day?
One piece of good cardiac news at this point is that I have very little carotid plaque. I'm taking 5 medications for my heart along with 3 that I was already taking for high cholesterol and depression. I have dealt with depression since my teens. I've survived a suicide attempt and 4 psychiatric hospitalizations. I've been in and out of psychotherapy for 30+ years. I have finally found the right combination of meds to control the problem, and although I'm sure it's lurking in there somewhere, depression is not what I'm struggling with now.
What I'm struggling with now are: frustration with my physical limitations, disappointment, and weight gain. To put it bluntly, I am angry and I feel betrayed. Every time I visit my cardiologist, I see dozens of other patients who are far worse off than I am, grievously ill and unable to care for themselves, dependent on caregivers and doctors to stay alive, never mind thrive. But the next day, I wake up feeling my heart and lungs jumping around in my chest and all I can think of is heart failure's ruination when before the dx, I would have been looking forward to my day.
Since all this began in January, I have gained 12 lbs. Weight gain didn't surprise me when I was too sick to work out. I was delighted when my cardiologist gave me the OK to go back to my fitness studio. I thought that burning more calories would at least prevent further weight gain, but that didn't happen. When gardening season began, I thought that being active outdoors would help prevent further weight gain, but that didn't happen. So although I love being with my friends at the fitness studio, and I love working outdoors, my body is still betraying me. My BMI is still in the normal range, but most of my wardrobe is too small and I'm very self-conscious of the rolls of blubber around my midsection. I don't understand why that blubber has built up like that because it wasn't there when I weighed 100 lbs. more than I do now. I was shaped like a bowling pin, but without the fat rolls.
And this brings me to my bariatric situation. After about 20 years of morbid obesity, I had bariatric surgery in 2007. The journey has not been easy, but I lost 120 lbs. by changing my eating (behavior, food choices, cooking) and by making exercise a big part of my life. I had always hated exercise but somehow I learned to enjoy it and even looked forward to it. Working out did (does) wonders for my mental/emotional health as well as my physical health.
I worked so, so hard to improve my health. I got rid of a CPAP machine, got my blood sugar under control and gained a sense of control over my health. I also got my chronic (fibro) pain under control and then dealt with the side effects that the pain meds (Tramadol, Gabapentin, and more) caused and eventually stopped taking them. I finally did something about the hearing loss that had been diagnosed in my early 30's and (when I got up enough $$) bought hearing aids that reconnected me to important sounds – everything from human speech to environmental sounds. My hearing is still a problem, but I'm grateful for those hearing aids – I'd be in even bigger trouble without them.
Since losing all that weight, I've published 2 non-fiction books (a self-help book and a cookbook) and attended several bariatric conferences, even participating as a panelist during an ask-the-expert session. I made dozens of new friends, both in-person and online, from all over the country. I published an e-newsletter and wrote a popular bariatric blog for 3 years. I joined a fellow workout pal when (in 2012) she started a social enterprise to help marginalized women in our poor rural community get jobs and improve their quality of living. Working with those women has benefited me at least as much as it's benefited them.
A few years ago I was baptized and became active in my church, working in the church office, and loving being part of a wonderful church family. Finally, after years of struggle and hard work, my life somehow achieved some balance. But now, like my maternal grandmother when she lost a leg to Paget's disease, I'm mad at God. Why is this happening to me?
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Jean McMillan
TN
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Original Message:
Sent: 02-23-2017 11:14
From: Andrea Baer
Subject: Welcome! Introduce yourself!
Hi everyone!
We are just now starting to build our amazing online community. Welcome aboard this exciting new project. Please take the time to introduce yourself. I'll start!
I am Andrea Baer, Director of Patient Advocacy here at Mended Hearts and Mended Little Hearts. I also have a son who was born with a congenital heart defect and have been a part of this organization since 2009. I'm also your community manager here at Connections in a Heartbeat! You can reach out to me anytime with questions or help.
Looking forward to connecting and sparking some great conversations.
Andrea
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Andrea Baer
Grapeville PA
(724) 396-7820
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