Normal

[Jackabee]

a silly question I expect but nobody talks to me. I recently had a stress MRI ( with the chemical injected) which showed that my EF had improved from 30 to 50 with. ‘Good’ function. I got the letter from the cardiologist telling me this. Then I was called for an ECG as there were some concerns about leakage around my heart. The results have come back in a letter saying that my heart is operating within the parameters of normal with minimal leakage. What puzzles me is, if my heart is operating as normal, why hasn’t anyone been in touch to say stop the meds…or is it operating so well because of the meds? Why won’t anyone see me face to face. I appreciate that you cannot answer medical problems but I feel as if I am in limbo…am I well, do I have heart failure now, or am I well with heart failure?

[Tos92]

Hi Jackabee

I’m happy to hear your recent results have come back okay for the most part a part from the minimal leakage you are having.

I presume they have not asked you to stop the medication because the medication is what has helped improve your EF. Therefore, the longer you take it, I suspect that it may continue to improve your EF. If you stop taking it, you may find that your EF becomes lower again and you will start to be symptomatic which is not what you want.

I believe 50%-70% is considered the normal range for an EF level, though these estimates can vary slightly depending on your cardiologist and what they use.

I can’t see why it should be an issue for you to have a face to face appointment with a GP or your cardiologist so that they can explain your results to you. Have you tried calling your cardiology department for an appointment?

All the best.

Tos

[Jackabee in reply to Tos92]

thank you for your reply. I haven’t seen a gp at all since diagnosis 13 months ago. Cardiology gave me a hotline number but the phone is never answered and messages do not receive a response, e mails seem to be unacknowledged or described as ‘lost’

[Tos92 in reply to Jackabee]

Have you thought about contacting your PALS (patient advice liaison service) at your local hospital and explaining the situation to them that you’ve been trying to contact cardiology over the course of the last 13 months but you’ve had no response. You can also contact PALS via email. You should be able to find this information on your local hospitals site. They can then escalate an appointment for you or have someone reach out to book one for you.

[Jackabee in reply to Tos92]

thank you. I will do that.

[Jackabee in reply to Jackabee]

I have had two cardiology appointments but none since my MRI in February ( apart from the ECG) . I know that I am not a priority as all seems to be well now but I am not sure if I should be pushing myself as I would have done before diagnosis or whether I should treat myself as if my heart is still poorly. I still get really tired sometimes and I had a funny turn at the supermarket in the heat, for example but why, if my heart is up to normal function?

[JeremiahObadiah in reply to Jackabee]

I think you have plenty of questions for which your cardiologist could give you sensible/helpful answers. It’s not unreasonable to seek a face to face appointment. If you don’t manage to get an appointment another way, you could go to your GP and ask then to refer you for a follow up. You do need to be told by an expert who has looked at all your results how long you are to take the meds, when they will be reviewed, what you should expect in terms of fatigue, what you should do in terms of fitness…. otherwise you feel as if you are forgotten and off radar.

[1234_6]

Hi JackabeeGetting a face 2 face appointment does appear to be difficult and waiting times are long, but do push to get a face to face consultancy appointment if you feel things need discussion.

Try to see if you can get to the Cardiologist's secretary & say you have have things to discuss with the Cardiologist and want a face2face appointment scheduled.

( I was in a similar position recently. Managed to get a follow up face2face in 4 months time. So it's worth chasing.)

Then go through PALS if you still need to do so.

Good luck

[DoggieMum]

I had a similar problem with getting no responses. However, a friendly local pharmacist advised me to be persistent, so after four letters to the surgery and, my daughter a local councillor, getting involved, I had a call from the local heart nurse and have an appointment to see her and also had a conversation with the GP. Both of which have given me some reassurance.

It's a shame that we have to use these measures in order to get heard, which inevitably gives the staff more work and in turn slowing the process down for everybody. If they would only realise that, if they sorted things out without being hassled, it would be easier for all concerned. This is probably not what you want to hear, but I am afraid it seems to be the way of things these days. Take care

[Shar28]

Hi, my husbands heart has a “normal” EF of 64% and he’s still in ACE inhibitor, betablocker and diuretic. But he doesn't have a “normal” heart as he has Dilated Cardiomyopathy and a mechanical aortic valve. The meds are to support his heart in staying as good as it is and to control his BP. He only found out his EF is normal as he needed surgery for a completely unrelated issue and the surgeon asked cardiology for their input. He hadn't had a cardiology review for 2 years or so.

I suspect you're still on meds for the same reason, but of course only your own cardiologist or maybe GP can say.