Congestive Heart Failure And Never-Ending Issues

It has been almost a year and a half since our lives unraveled before our eyes and it just kept being “interesting.” 

We lost our son and then Brian had what the doctor called “worse than a widow-maker” heart attack. I still don’t have any idea how he survived but I’m sure glad he did. 

Three stents later, he was ok and we proceeded to go back to trying to establish our new normal. But it turns out that he wasn’t ok. 

Soon he was extremely fatigued and very short on breath. During a follow-up ekg, we learned that he had severe mitral regurgitation. What’s that? Due to the damage, the valves were not closing properly and blood was leaking back into the left ventricle. 

The Mitral Clip 

After months of struggling to breath, he finally was scheduled for a mitral clip procedure. They basically clipped the valve back together. When they got in there, it was worse than they thought and they had to put in two clips. 

He was ok so we went home and proceeded to go back to establishing our new normal. But he wasn’t ok. 

The breathing never got completely better. It did improve. For awhile, though. 

But, before long, he started really struggling to breathe, he needed naps to make it through the day, and he just felt lousy. The doctors kept saying that it was normal, he would never be the same, etc. 

Then it was getting worse and he felt some chest tightness so we went to urgent care.  

The same doctor who called the ambulance when we went to her last April said that she couldn’t “safely discharge him” and sent us straight to the er. (This time we requested a different hospital). 

Back In The Hospital 

So he was admitted. We finally felt heard. The cardiologist explained to him that he is at high risk for sudden cardiac death. 

Man, those words hung in the air for a long time after hearing them. 

They did a bunch of tests and checked a bunch of stuff. They said Brian would have to wear a life vest which would shock him if his heart stopped. The endgame plan was a defibrillator, but he would first need to be monitored with the vest for around 6 weeks. 

He wasn’t ok but he was able to come home, wearing the life vest. It looked horribly uncomfortable. It’s like wearing a tight, bulky sports bra and it was attached to an external battery pack that he had to carry around. 

While it was keeping Brian alive, it also gave him a whole new appreciation for why women fling their bras off when they get home. And he was always quite jealous of me when I did just that. 

The ICD 

About a month later, Brian has a double ICD unit installed: a pacemaker to keep his heart regulated and a defibrillator to zap him if his heart stops. 

And we came home. He was in a lot of pain and had to wear a sling until enough scar tissue formed to keep the unit in place, but we were hopeful that it was the beginning of a higher quality of life and that we could proceed to go back to establishing our new normal. And that he would be ok. 

And Now Here We Are 

*I came here to finally finish this post  and it’s interesting to see how my perspective has changed. I have become a person who doesn’t trust doctors. It’s also disheartening to see how many times we had hope and then he was not ok. 

Well, it has been several months with Brian’ s ICD in his chest. (He has named him Hal.) He hasn’t gotten shocked which is super cool. He is breathing well and his numbers, in the words of the PA who I don’t have a lot of faith in, are “stable.” He has been going to Cardio Rehab and has built some arm muscles.  

But he has no energy. And by no energy, I mean he is tired all the time. And by tired all the time, I mean he is struggling to get out of bed. 

Everyone keeps saying that fatigue is normal. And personally, I am very fatigued of hearing that. 

We saw his cardiologist about a week ago. She adjusted meds, she ordered extensive blood work and she started him on Ozempic to help him lose weight and manage his Diabetes. Did I mention that he also has Diabetes?? 

So we went home and felt hopeful that we could go back to our new normal. But a few days after, his fatigue worsened. He has been sleeping most of the day and has a decreased appetite (without the Ozempic). He is depressed and feels hopeless. We are still waiting for the blood work results, and he stopped the Ozempic because it was too much to take on at the moment. As for me, I’m trying to be supportive and not think about how scared I am that I’m going to lose him. God, please don’t let me lose him. 

Hope…? 

I am cautiously happy to update that he has had two good days. He hung out with the chickens and even washed some dishes (to see if he could). Hopefully, he is turning a corner. Hopefully.  

Because we both would like to establish a new normal that is way more nornal.