HF Going in the Right Direction

Although I'm someone who doesn't get too concerned with Heart Failure I still like to see some improvement with my EF.

My latest Echo in March produced a 30% EF, so I was back with the HF team for a second time. Different and increased dosage meds certainly seemed to make a difference although the likes of breathlessness and fatigue aren't going to disapear in any case due to other conditions.

Cardiologist is considering having a CRT device fitted, but, knows I dont particularly fancy one, so decided on a Perfusion Scan for more accurate results before commiting to the device.

The results came back at 46% so a significant increase in my EF, which will probably put to bed the idea of a CRT. Saying that my Pacemaker still needs new batteries before too long, so who knows.

I'm still awaiting Rehab, but, in the meantime I'm doing the BHF Cardio Rehab Levels 3 and 4 on You Tube every couple of days which I find good exercise.

Anyway, a bit optimism on my EF, given its the highest its been since pre-pandemic.

[Yumz199725]

Glad to hear your EF has improved x so have they decided you need a CRT not sure what that is, is it similar to a pace maker?? X

[Hidden in reply to Yumz199725]

Yeah, its similar to a pacemaker, more or less an upgraded version. I also have complete heart block and underlying AF which the pacemaker happily deals with, so the way I see it, ifs not broken why try and fix it. However, the CRT resynchronizes the left and right lower ventricle chambers and would probably improve my EF. To be honest, I'm just sick of hospitals and want the least intrusive option.

[Yumz199725 in reply to Hidden]

Ahh glad it's getting sorted then sounds like it's gona be fixing 2 things at once x wish you all the best with your procedure 😘

[Harveyone in reply to Hidden]

Hi glad to hear your doing so well,just shows how much you've improved.CRT D may even improve you more.I originally had a crtd bout 20 months ago,was unable to do much at all.When Cr t d device eventually got going,now doing 8 to 10 miles each day bike or walk.I dont really fatigue now although I tire bout once every 10 day or so which is just few naps.Doing more now than before being diagnosed with cardiomyopathy.Hopefully this encourages yourself and others,we can improve.Move to improve.

[Hidden in reply to Harveyone]

Thank you for your reply. Been doing this for so long, that I've learned to 'never say never' to anything. The final decision will come down to what my Cardiologist recommends, which I'm more than happy with, as there is no one I trust more. So, if he says go for the CRT, thats the way it'll be.

It's good to see your doing well yourself, may it continue...

[MountainGoat52]

Great to hear things are on the up... your EF at least. That's really good news. Hopefully there will be further improvements and the need for hospital visits will reduce.

[Hidden in reply to MountainGoat52]

Thank you for your reply.

Reduced hospital visits😂.

I'm not sure what I'll do with my time.

Actually though, this year is a quiet one to date, I've only been admitted the twice (10 days) then there's A&E, 2x Pre-Assessments, a Colonoscopy (+overnight stay), 3x Same Day Emergency Care (SDEC), 2x Cardiologist appts, 6x Heart Failure team appts, an Echo, MRI, Pacemaker check, Cardio Rehab assessment, countless INR/Warfarin checks aswell as being weaned on/off Warfarin, and they've taken that much blood it's no surprise my haemoglobin is low.

Luckily, I live close to the hospital.

To be fair, I've not bothered my GP that much.

[Fred1954]

I was also upgraded to CRT-P. It may depend on model, but in my case the 'box' was bigger than my old pacemaker and sticks out more. It also has a third lead which needs feeding in. Works well for me, but a bit more to it than a straight box swap.

[Hidden in reply to Fred1954]

Thank you for your reply.

Yes, the size is one of the things that sort of puts me off. My Pacemaker sits there very nicely, its never bothered me other than the hospital having to re-open the wound after valve surgery as the wiring had become detached from the heart. Rather than reconnect, they changed the wiring in its entirity which took longer than the original operation.

[Anon2023]

hi. That’s really good news. I find that the perfusion scans always come back with a higher EF and the HF team tell me that they are the more precise test for measuring it. I wish I could have one each year instead of the echo as I always feel depressed when the lower results come back. I think the echo is probably much cheaper to do though. Really good news that your EF has improved.

[Hidden in reply to Anon2023]

Thanks Anon, This was actually the first MRI I've had since 2014 at the Freeman, so this was relatively new for me. Now having had the result, its made me think that an Echo isn't the best option, as far as determining EF for HF patients, and an MRI is the best solution.

Aside from the fact that an Echo is only as good as the Sonographer doing them, and I've had some dodgy ones over the years, who have had to ask how many mech valves I have and get assistance for the Shunt. Just last year, the original report incorrectly highlighted severe regurgitation for both Aortic and Mitral Valves, which apparently caused a bit of a stir, not least because the Freeman want to leave them alone.

Getting back to the EF question, many peoples treatment is being determined based on what is essentially a best and potentially flawed estimate.

That said, for seeing how valves are sitting in place, and in my case how the Shunt is getting on, an Echo is probably best. Which of course means they would have to double up on appts and costs. Time to stop rambling.

[Anon2023 in reply to Hidden]

Hi. I agree. They said the echo was better for seeing the position of my valve but the perfusion scan for EF. Like me, you probably have an echo every year to check the position of the valve but it’s probably not ideal for checking EF. I hope that you are starting to feel better and that everything continues to go well for you. Enjoy tomorrow, getting your new puppy. 🙂