Only a number, not a sentence

I just got a call from my cardiologist... my other message for today was somewhat of a vent session on my apparent lack of "care" with my current doctors. I had left a discouraged message for him after my last appointment when it was clear that he really wasn't feeling well and told me he had Covid the week before. Well... I guess he felt bad about that because he called me just now and said he wanted to talk over my concerns with medications and my EF. What I wrote in my message had to do with my very low EF (16) and why it seemed as though no one seemed to be bothered by that except for my primary doctor and the echo technician. He explained that since I'm doing very well in other aspects of my health, and haven't had breathing issues or been in the hospital, that my EF really isn't an affirmative factor in deciding whether I'm really very sick or not. He also assured me that if I don't tolerate higher doses of Carvedilol, that we can always go back to less of it. 

I see all the time, people with much higher EF, doing much worse. And quite frankly, that's scary. I feel like I'm walking a thin line between doing fine and ending up in the emergency room. At least there is a place to go, to voice these fears and concerns. Again...thank you ALL. 

3 Comments

Pleased to Hear This!

by Penguin - 2024-01-12 18:39:52

Hi Janene, 

I'd just spent 40 mins writing out a reply to your other post and had come online to post it, when I saw this.  I won't bother now, but it was basically to say that fear can come over in a way which isn't always helpful. You are scared - that's clear - and I'm so pleased that your cardiologist has come back to you and recognised this. 

Life can be miserable with loads of meds and doses which go up and up, forgetting how the person who's rattling with pills might feel.  I'm pleased you found your voice and really pleased that your doctor re-thought how he initially reacted. We all have off days and Covid can be really unpleasant. I doubt I'd have been patient and pleasant if I was ill too! 

An EF that low, is a worry. I'm so sorry that you're facing this and hearing about others who are afraid and worried with higher EF %s.  We mustn't forget that you're having a really tough time and that you're frightened and try to support you. 

It's been quiet on here recently and some of us aren't getting notifications and therefore we stop coming on to pick up messages. You may have noticed this. 

Keep posting when things get hard Janene.  There is always somebody listening.

Take good care of yourself. 

Best Wishes 

Thank you Penguin

by R2D2 - 2024-01-12 20:09:29

I so appreciate your support and input. I did notice I'm back to not getting email notifications again, so I did a manual check today. 

Some days I try to avoid coming on here and checking messages because I like to try and forget I have heart failure... if I can. It seems my life revolves around it and I want off the HF merry-go-round. I bet most people with HF or major health issues feel the same way. 

We can live well with heart failure

by Gemita - 2024-01-13 06:38:55

Janene, can I bring you back to what has been said:  Your cardiologist has now explained that you are doing quite well (yes you are) and haven’t had major breathing issues or needed emergency hospital support recently for your heart failure, not even when you received a shock.  Your low EF number alone therefore is not such an urgent concern for your cardiologist whereas a need for ongoing emergency treatment clearly would be.

To hear your cardiologist’s views would give me strength and confidence since I believe his comments to be absolutely true.  I only seek help when my body tells me I need urgent medical care.  Being able to stay away from emergency care, is in itself a very good sign.  We always go by symptoms here, not by those numbers.

You then go on to mention:  “I see all the time, people with much higher EF, doing much worse. And quite frankly, that's scary. I feel like I'm walking a thin line between doing fine and ending up in the emergency room”. 

With respect, I think we all need to start believing that we can recover strength.  A complete reversal of our condition may not always be possible, but I have seen members here and my own family members too, living well and for many years with heart failure and other conditions.  

I still have confidence that you will improve your EF and be able to lead a quality of life again Janene, if only I can get you to believe this too?

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