Worried that this is heart failure.

[HelenFS]

Hello,

I’m not really sure why I’m writing this…maybe to feel less alone with it all. Apologies in advance, this is long. If you continue to read, I’m so grateful.

I’m a 47 y/o woman and I have had varying symptoms for what might possibly have been quite a long time.

I started with ectopic beats in the summer of 2021. I’ve had several ECGs including a 24 hr one.

In April 2023, I started taking extra involuntary gasps of air. This was determined to be anxiety. It has continued.

I’m overweight and unfit so I am unsure when I started feeling shortness of breath on exertion. Probably quite a long time ago and I’ve put it down to simply being unfit.

Around 7 weeks ago, I had a bad cold, which was chesty. I had a hacking cough, mucus, but it was quite different for it to be so much on my chest, as I normally suffer with sinus issues but nothing that time.

My cough continued, including bringing up mucus.

Around 4.5 weeks ago, I started with dizziness and lightheadness.

At some point during that time, I’ve become aware that it is harder to catch my breath when laying down at night. I’ve woken up twice gasping for air.

I’ve also noticed that I getting short of breath easier - climbing the stairs, and also sometimes even whilst talking or eating.

Last weekend, I coughed and brought up some mucus with red stripes of blood in it. This was only on one occasion and it’s now back to clear again or sometimes a little white.

The dizziness has evolved to 2 occasions where I felt on the verge of fainting but didn’t.

I feel heavy around my chest. I’m very aware my heart sounds ‘loud’ in my chest.

I have a bloated stomach and I’ve started needing to go to the loo at night, which I’ve never done.

I’m finding it hard to eat, as I have no appetite, so I’ve lost weight.

I generally feel rather unwell.

I’ve sought medical attention in the form of my GP, who thought inner ear issue for the dizziness and then has mentioned asthma. She gave me a steroid inhaler and ordered the blood test for HF (not back yet).

I’ve also attended A&E twice due to how poorly I’ve felt. I’ve had 2 x ECGs, 2 x chest X-rays, oxygen levels - all showing normal. My blood work was normal except a slightly elevated blood clotting factor and I was then sent for a CT angiogram to rule out a PE. They’re now saying asthma again. I’ve not had an inhaler for 10 years so for it to suddenly be this acute feels off to me.

I keep mentioning how I am really concerned I have heart failure and it keeps being dismissed because I don’t have oedema or a bulging neck vein. I have a risk factor beyond my weight/unfitness, as I am hyperthyroid and have been in and out of regulated thyroid levels many times, which results in fast heart rate etc.

I’m in bed feeling very scared, propped up by pillows as it’s the only way I can feel ok (ish).

In desperation, I’ve booked a private consultation for an echocardiogram for this Friday. I just don’t think I can manage to wait for the HF blood test results, which could take up to 3 weeks plus any follow on referral to the NHS.

If you’ve got this far, wow, thank you. As I said, I’m not sure what I’m looking for by posting this.

[TheBesty]

You will find out Friday then

After I was discharged twice from hospital with no answers, i was rushed to hospital the third time with loads of fluid on my lungs and blisters the size of footballs on my feet where my heart was shutting my organs down to save itself. Only then was i diagnosed with acute dilated cardiomyopathy.

Fingers crossed for you

Good Luck

[HelenFS in reply to TheBesty]

Thank you for replying.

It's actually on Saturday morning now, as the cardiologist's secretary informed me that the place where I'd booked for Friday would require a separate appointment with a technician, whereas the cardiologist can just do the whole lot in one go on Saturday morning, which makes more sense to me.

Wow, your experience sounds incredibly scary. I'm sorry that you went through that. How are you getting on now with your acute dilated cardiomyopathy?

[TheBesty in reply to HelenFS]

As long as im not in hospital and I still have a pulse, im golden

Best of luck tomorrow

[DLS25]

I know exactly how you feel. I am 52 and spent the weekend in a&e. They told me my blood markers said I was in heart failure. I have hcm with AF so things are really hard but I manage and haven't need diuretics. I am due to have a holter on 2 Dec to see what is happening. Mentally these conditions are so hard. I am really struggling.

[HelenFS in reply to DLS25]

I'm sorry to hear that. It must be a very anxious time for you - waiting is always difficult. I hope you have the support of family and friends around you at this time. It might be worth calling the BHF nurses for more support.

[Happyrosie]

I can only sympathise. I wonder why you have self-diagnosed “heart failure” ? Which is a horrible description of the heart not working and pumping as it should.

In the meantime while waiting for your tests - it’s not just the NHS that’s in charge of your health, it’s you. The NHS can only help and advise and maybe treat. So, is there more you can do for yourself?

You say you are unfit, so what can you do for exercise? I DONT mean running, gym etc. I mean making sure you get up and walk around once an hour, for ten minutes. If you have stairs, go up and down them.

And your diet? The older we get, the more protein we need. Perhaps have a spoonful of peanut butter instead of a slice of toast.

If you feel you are doing something for yourself I think you will feel calmer.

[Nanny1971]

bless I was like you thought I had chest problems then I ended up having heart attack not even entered my mind at the time until the ambulance turned up when I couldn’t breathe and they done ecg in the ambulance I needed to have two stents put in and a pacemaker hopefully you won’t have that and you get it sorted soon xx

[HelenFS in reply to Nanny1971]

I'm sorry that happened to you. Thank you for replying to me, I really appreciate it. xx

[PadThaiNoodles]

Normal chest X-rays and oxygen levels are good signs. Even if your heart does turn out to be struggling, it's managing to keep up with things OK at present.

Getting your echo done and the results all in one go is also a big win.

Keep courage; Saturday isn't too far away....

[HelenFS in reply to PadThaiNoodles]

Thank you so much. I hope they are good signs like you say.

I'm very relieved that I will know more tomorrow so fully agree with you that this is a big win and I recognise how fortunate that is.

[HelenFS]

Bumping this, as I am feeling at a loss over what to do. I know I am very fortunate that I have the private echocardiogram booked for tomorrow but I am feeling really terrible. I don't know how else to describe it other than I feel like I am fading away. My arms and legs feel really weak and I keep having the bouts of dizziness whilst sitting down. My breathing is generally ok when resting upright but when I move around it becomes difficult. I feel absolutely exhausted, which I hadn't previously.

I've checked my blood pressure and it's high for me at 139/69 but ok. My pulse rate is normal at 64.

I've not been able to eat much due to feeling nauseous and uncomfortable in my stomach so I'm losing weight on average 0.5-1lb a day. I forced down a quarter of a bowl of cheerios this morning and now feel even more uncomfortable in my stomach.

I can't present myself at A&E again, as they just keep repeating the same tests - ECG, bloods and then sending me home with different medications - reflux meds were given last time.

[GratitudeOnShow]

Hi Helen

None of us can diagnose but we can reassure you that you are doing the right thing in getting checked out. There is a chance that anxiety could be making your issues worse but please let us know how things go after your test results if it helps you to talk about things.

[HelenFS]

I wanted to update:

I got the results of my brain natriuretic peptide blood test last night, as my GP knew how worried I was, and so she sent me a text. These results were normal.

I went along to my cardiologist appointment this morning for the echocardiogram and the results of this was also in range.

They're saying that they think a lot of my symptoms are down to asthma so I will continue with my steroid inhaler.

I want to say a big thank you to those who were so generous and kind in your replies to me. x

[PadThaiNoodles]

Great news! (Asthma’s still no fun, but at least it’s a “known” thing.)

[HelenFS in reply to PadThaiNoodles]

Thank you for your support.

I hope that you are doing ok, too. My 82 y/o dad had OHS to replace his aortic valve in April of this year so I am wishing you all the very best with your continued recovery.