Last updated: February 2022
On April 26th, 2021 I was in my office when my cell rang. It was my PCP. About 10 days before I went to see her with concerns about the shortness of breath. I’ve been pretty healthy for a 62-year-old. No high blood pressure. No diabetes. Healthy. At that visit, I learned I had gained about 20 lbs. COVID hibernation I thought. In fact, that is what she thought. Sedentary for the past 12 or so months. Joking she said you need to move more and eat less.
Everything “must” be okay
Then she asked me to hop up on the exam table. She said wow that was very taxing for you. My heart rate had elevated into the 120s. She casually said she was adding another screening to my labs. Pro BNP. What is that? All I heard was heart failure. What? That is impossible. She reassured me that she did not think I was in heart failure but needed to rule it out. The next day I went for my labs. That afternoon she called. My Pro BNP was 1876. Very high. The following week I went for a chest X-ray and an echo that Friday morning. No phone call. Ok, I thought it must be ok. They wouldn’t wait the weekend if it were anything right? Monday morning I answered that call and was told to go to an ER and to not drive myself. What? I’m at work. She told me it was serious and if she referred me to a cardiologist it would take too long. She wanted me seen and admitted. It was the best way. (That’s another topic for a different day).
Heart failure with reduced ejection fraction
So someone drove me to the ER. It was there I learned I have heart failure with reduced ejection fraction. Seriously what the heck is ejection fraction? I learned. Quickly. My ef was 10 -15%. The next few days are a blur. I had a angiogram and catherization the very next day. It confirmed the echos numbers but also ruled out coronary artery disease. Clean as a whistle and my valves were also good. I was diagnosed with non-ischemic cardiomyopathy. Which means no one really knows how this happened to me. A few could be. And after 10 times repeating no I did not have Covid I think they accepted that. I did tell them back in 2006 I was treated for SVT and had ablation but they dismissed that since I had been ok ever since.
Past medical history matters
Let me get to the good part. By mid June I had really had it with all of this unknown. This happened to me. We don’t know how. What if what is causing it is still happening. No answer. I decided to contact the doctor who did my ablation in 2006. I was told it had been so long (last time I saw him was 2009) I would be considered a new patient. He was booking out into late September! I could not believe this. A friend said why don’t you email him. How? They don’t publish doctors email address on the website. Well it didn’t take a lot of brain power to figure it out so I hit send and thought I wonder if he will even read it.
Paying attention to my body
6 mins later he responded! He came in on the following Saturday to meet with me. Within a week I had a cardiac MRI. That ruled out some scary causes. He also told me back in 06 I had a left bundle branch block (LBBB) that was only present when I was in tachycardia. But today it is present all the time. He explained that an LBBB can cause my type of heart failure. Unfortunately, we don’t know when the LBBB became consistent but I do know for years I had a high heart rate at rest. I regretfully admit I even joked about it at times.
Additional testing and appointments
Next, I wore a zio patch then did a stress test. In August I agreed to have a CRT-d implanted. My implant happened on 11/11/21. I also was invited to take part in a SyncAV study being done by Abbott the maker of my device. Sign me up! As part of the study, I had a pre-implantation Echo and another ProBNP done as a baseline. My BNP was down to just over 400. Still high but better and they cautioned it doesn’t mean it’s better. This doctor is an electrophysiologist so he has me see a cardiologist who just happens to be the chief of their cardiomyopathy practice! Score for me. This guy is all over cardiomyopathy and heart failure. He changed my meds up and said Rosemary we need to be aggressive. We need to do what we can to manage your heart failure.
Making necessary changes
I saw him in September. He was happy with my weight loss and my exercise. He said yes do it. Do it for as long as you can go. And do it every day if you can. So I do. I follow his direction to the letter. I tolerate the low blood pressure understanding it’s intentional. I now walk 4 miles a day. I was cleared to go back to my weight training so I do it 3 times a week. I track everything I eat. Sodium is not my friend and I treat it that way. I try to say 1200 mg or less a day. I drink no more the 64oz of fluid a day. I do this everyday. This doctor told me I have the power to help manage my heart failure. So I took that power and I will keep that power.
Google can be your friend and enemy
Oh by the way my ef in November was 30 -35%. I will have another in May and I’m so hopeful. I’ve learned so much about heart failure. In April that doctor told me not to google. It wouldn’t help me only cause me stress. I did it anyway. Google is my friend and my enemy. But my new team encourages me to learn and to ask them questions. I wonder if they regret that now :-). I learned lessons too. Do not take your health for granted. Pay attention to the clues your body gives you. Don’t make up excuses in your head. I did all of those things. In all honesty I noticed the shortness of breath on Election Day in 2019. It was not because I was wearing a mask and was anxious. I bought compression socks but said I did not have any swelling. I noticed my middle was “swollen” but told myself I was bloated. I noticed some wheezing when lying down. I don’t remember what excuse I told myself. I waited until April to call my PCP. I will not do that to myself again.
Making a change in my life
9 months ago I could not walk up the stairs at my office or walk down the hall without serious shortness of breath. I was so tired all of the time. In 9 months I have changed my life. I’m down 80 lbs. I can quickly walk up the stairs. I exercise every single day. I walk up hills! I can catch the 10 pm news. I have the power. I understand what heart failure is. It is a chronic progressive disease. But today there are so many things we can do and try. But we have to be committed to the power we have to help manage our disease. Be hopeful! Be grateful! Be strong!
Have you ever avoided going to the doctor out of fear?