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I'm new to this community and my first post.

jefro profile image
14 Replies

Hi... I would think you have read many times before what I am about to write, but after being told you have heart failure, a bit of reassurance would help a lot.

I have had a dry cough for a few months that started to get worse when I lay in bed. I phoned my health centre to get an appointment for something unrelated but they have just started a new system whereby a clinician phones back to determine the severity of your problem. Whilst on the phone I mentioned the cough and I was immediately given an appointment. The doctor I saw asked a lot of questions and prodded my tummy and ankles, checked my BP and listened to my chest and then said I would need a blood test to check my heart was ok and a chest x-ray. I obviously asked for an explanation as I started with a dry cough, had no other symptoms at all and now being told that the cough is probably caused by fluid on my lungs due to my heart not pumping as it should.

At the follow up appointment my GP said my BP is great for my age (I'm 71), my chest sounds clear and my chest x-ray shows no abnormalities but the blood test shows I have heart failure. She also said something like my bloods showed 3 points over normal but I can't be too sure as I had just been told I had heart failure. I am now awaiting an appointment at the hospital which will be a few weeks but within 18 weeks so I will have plenty of time for my brain to fester about my new life expectancy.

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14 Replies
skid112 profile image
skid112Heart Star

Hi Jefro, welcome to the forum

sorry to hear your diagnosis. there have a been a few threads here

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

healthunlocked.com/bhf/post...

which should give you a better idea, plus a BHF booklet here bhf.org.uk/heart-health/con...

Ok, now you have been diagnosed and are waiting for you next appointment, thats all good news, there are some very good people you will be seeing. Plus the added benefit of personal experiences on here too. Some of out members have the same issues and will be along to share.

You also have BHF volunteer nurses here with tier advice and a helpline to call Heart Helpline on 0300 330 3311 is open Monday to Friday 9am to 5pm.

Good luck

Mark

jefro profile image
jefro in reply to skid112

Thank you Mark.

laura_dropstitch profile image
laura_dropstitchHeart Star

Hi and welcome. I have heart failure too, was diagnosed nearly 6 years ago. Receiving the diagnosis (entirely unexpected for me too and delivered very clumsily) was really traumatic. Over time, as I've discovered more about the condition, I find it a lot less frightening.

The name "heart failure" is misleading and unnecessarily scary. It does NOT mean that your heart has failed/will fail to keep you alive, it simply means that your heart is failing to pump as efficiently as it could/should. This can be for a variety of reasons and the severity of the condition varies hugely, but even a very slight reduction in heart "efficency" is still called heart failure. (I vote that we change the name!) Hopefully your hospital appointment will furnish you with a more detailed explanation of your particular case.

In the past, heart failure was very hard to treat/manage and I think there's still a misconception that the diagnosis means a decline towards death or heart transplant. But this is NOT the case. There have been huge advances in medication over recent years. My heart failure is treated by a few different medications and a device that works as a pacemaker and resynchronises the two sides of my heart. Many patients are treated with medication only and there are lots of options, so you should be able to find one that works for you.

I would recommend you don't google heart failure. You'll find worst-case scenarios presented as standard and they probably don't apply to you at all.

I work in the same job I had pre-heart failure and have a young daughter. I'm just about to head to the gym and I have a busy social life. It took me a long time to accept my condition but it turned out not to be anything like I had feared. I do get tired often and can be breathless but I basically live the life I want to.

If you have questions that can't wait or feel like you need to talk to someone before your appointment happens, you can call the BHF phone line on 0300 330 3311 during office hours.

Feel free to message me if you think there's anything I can help you with and best of luck over the coming weeks.

jefro profile image
jefro in reply to laura_dropstitch

Thank you Laura for your interesting reply.

Jo_BHF profile image
Jo_BHF

Hi Jefro, welcome. Really glad you found us - as you can see from the responses you've had already, this is a good place to talk to other people who understand what you're experiencing.

As well as the great suggestions from Mark and Laura, I wanted to share the following link with you. It's a piece on our website that you might find helpful (and lots of links from there that include stories from people who live with heart failure).

bhf.org.uk/heart-health/liv...

If we can help at all, just shout.

Jo

in reply to Jo_BHF

Some great stories there! Thanks for posting, Jo :)

jefro profile image
jefro in reply to Jo_BHF

Thank you Jo.

Hi and welcome to our community, I like yourself thought I had something completely different! I went to my GP with what I thought was sinusitis, my friends still have a chuckle about it although they don't mean bad, I ended up in an ambulance and didn't get home for a fortnight! , I am still getting over the shock, it was in February, I got the full mot, of bloods, scans, echo and mri, angiogram, catheter, the cardiologist and nurses were fantastic, I was diagnosed with heart failure, Dilated cardiomyopathy, I go to the heart failure nurse twice a month and I can ask any questions I am worried about, it is great to have that reassurance, I have also seen my cardiologist a few times and tomorrow I am going to see about getting an icd fitted again for reassurance, I have been on a few different meds to see what works best, and at the moment things are fine, the NHS have been fantastic and it's great to have friends on here that can help on a bad day, take care and keep us posted how you get on with your appointment, if there is anything you want to ask me about any of the tests, procedures or meds please don't hesitate , chaz xx

jefro profile image
jefro in reply to

Hi Chaz... Thanks for the welcome. I am a little worried that my appointment at Musgrove Hospital has gone awry. We have choose and book and the lovely lady who tried to book me in said the hospital computers were down and she would e-mail the appropriate department and if I haven't heard anything in six weeks to phone again. According to the NHS website if HF is suspected then an appointment to see a Cardiologist should be within two weeks. As it is I feel ok but presumably so did you when you saw your GP, so the worry for me is, am I going to get worse in the near future before the hospital appointment.

Best wishes... Jeff

in reply to jefro

Hi it does seem a long time, but mabe that's a good sign that things aren't too bad, I would definitely see if I could get something sooner if any symptoms got worse, breathlessness, a cough or if you are feeling very tired, mabe your GP could ask if they had any cancellations that you could go to, Iet us all know how you get on and if you get your appointment sooner x

Heartlady1 profile image
Heartlady1

Hi Jeff... welcome to this forum and many of us will identify with your shock and worry. It is so scary when you get this type of diagnosis.... but I reiterate everything Laura and the others have said.

My story is I was told at the age of 33 That I had heart failure ( I had a child under the age of 1) I was terrified.

As Laura says HF has many different levels.... mine was medium heart failure.... i was thoroughly checked and given ace inhibitor tablets for my Condition. This has allowed me to live a full and active life ( although I don't do hills) for 22 years. This Feb I was told my heart had worsened and I have recently undergone having a device fitted... similar to what others have said. I am only 3 weeks post op and feel fabulous again. And am planning to be around... And with a good quality of life... for another 22 years 😀

I promise you there is life after this diagnosis... And a good life. One bit of advice I would give is never just wait on the system.. . As wonderful as the NHS are... And they are brill.... things can get lost... waylaid... so i would always chase up to find out if they have your referral and what timescales they are working to for an appt. Keep us posted and we ate all here for you as you go through the process.

jefro profile image
jefro in reply to Heartlady1

Thank you for your warm welcome. Having read your stories I feel very much more relaxed about my "condition" (heart failure sounds so permanent that maybe, as you said, it should have a prefix of severity, but then who wants to hear the worst case scenario) however I had a total knee replacement six months ago and I had a comprehensive pre-op check at the Nuffield in Taunton where I was classed A1. The Nuffield would not take on a patient with a heart condition as they don't have facilities for treating it. Therefore, as I don't appear to have any symptoms apart from a cough and this condition has occurred during the last six months, maybe I am in the very early stages of the condition and I am worrying for no good reason. I'll keep you posted.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to jefro

Great to hear you are feeling a bit more positive about things, and rightly so. Do keep us up to date with your progress.

Nanny72 profile image
Nanny72

Am in the same position already had one app to cancelled and will not get to see cardiologist until late January. My gp said it was urgent because cardiac bloods are off the scale. No cough just very breathless

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