Scared

[Pockets22]

Hi everyone my me is Lisa & I am 45 and last year I was diagnosed with severe leftsideed heart failure. Have had all my tests done and waiting to find out the results of my 3d MRI . My chest has became very whezzy and my legs and ankles have started to swell aswll as rapid weight gain . Are any of uses in similar situation and knows and understands it more than I do please help. Xxx

[Love100cats]

I have left ventricular heart failure but I'm old! I'm so sad when I hear young ones suffering heart failure. All I can say is that the 10different tablets I am taking are doing the job and I can see my ankle bones, my heart has slowed from 140 to 70 b.p.m. and I'm no longer sleeping sitting up at night. For those things I'm grateful though I do still have irregular chronic heartbeats. They will sort you out I'm sure. We have some amazing cardiologists. I hope you let us know how things go. X

[BARTLETT1965 in reply to Love100cats]

Hi , can u tell me what they class as irregular heart beat. Mine carries from about 40 to 180+ , had one at 220bpm .

Same as u can’t sleep because of shortness of breath laying down but have the shortness of breath from making a bed and walking from room to kitchen.

But Cardiologist discharged me because I had 30+ episodes on 7 day recorder listed and the recorder only registered 10.

Jeff

[Love100cats in reply to BARTLETT1965]

My heart is no longer racing but the cardiologist in hospital described it like four horses all galloping at different speeds and paces and that's what it feels like. I suppose technically it's an Atrial fibrillation. I can feel it happening but I'm not breathless indoors now if I take it slow but affected by the cold weather so I don't go out. It's taking time to get my mind round everything and I just keep reading stuff. Take care!

[donkeybaby in reply to BARTLETT1965]

Hi Jeff, I would go and see my gp if I were you. Don't leave it..have you been diagnosed with heart failure, as these are some of the symptoms. Also, if you have a HF nurse specialist team contact them as they work closely with the cardiologists. Hope you get sorted soon.

[Lezzers]

Hi, there's a foundation charity called Pumping Marvellous who are a dedicated charity for people with heart failure, their families & carers. They have a closed Facebook group also called pumping marvellous, which is a really lovely caring group who may be able to help, advise & support you. Xx

[Pommel]

Hello Lisa, sorry to hear about your diagnosis, I'm guessing you haven't long found out. It is really scary but there is some really good medication that can help a lot. I was diagnosed very similarly over two years ago now, with severe heart failure but the treatment has improved this and you learn to manage your symptoms too. Have they given you some medication? There are lots of people on this forum in the same boat as you so please don't worry, there's lots of help available x

[chrisbattle]

Hi Lisa. I was diagnosed in August with an EF of 15%. My echo last week showed that the EF has gone up to 35%.

It sounds like you have fluid retention, have they given you diuretics?

The meds they have can work wonders and I’m sure that everything will work out for you.

[dawnz]

I totally back what 100cats is saying. I had a series of 'events' when I was 53 which left me with left side ventricle failure, and the Cardiologists at both my local hospital and London really look after me. I take several meds daily and the only advice I feel able to give is to have the same person or team tweak your medication. Please follow what they tell you, and I hope you see an improvement. Keep posting how you are doing, wishing you the very best...

[Grayjay]

Hiya, Sounds like you have a fluid build up in your body. See your GP and ask about water tablets. Fluid not only bloats you up but can get into your lungs as well, hence the wheezing. Don't worry,I suffer with this myself as do lots of others. The only problem is that the tablets make you Wee a lot.😦

[Teddy66]

Hi, I’m sorry to hear that

Have you been diagnosed with dilated cardiomyopathy? it’s when the left ventricle is dilated and you can have heart failure, I was diagnosed 13 years ago when I was 35.

[Heartlady123]

Hi Lisa... I too have left sided severe heart failure... and yes it's damn scary.. . But honestly there IS life after this diagnosis.

I think, like others have said, you need to get the swelling checked out sonnest, as sounds like water retention which the GP can subscribe medication for this. I know you are currently under going the tests.... which is the hard part as you are in limbo until all the tests are back. However don't hesitate to chase the hospital up to find out when you will next be seen. I go through the consultants secretary who has been brilliant. Once yr test results are collated it helps the dr's see exactly what is going on and can help them decide what plan to put in place to help your heart.

For me I had HF back when I was 33.. it felt like a death sentence at the time... however they put me on medications which helped improve my heart function (these were called ace inhibitors) and this medication does help protect your heart. I am now 57 and altho I have recently had a small op to now add a device to help my heart.. . I am stable and able to both work and socialise. There is lots that the medical profession can do to help stabilise, protect and sometimes improve your heart function and has come on in leaps and bounds in the last 24 years since my diagnosis.

What is important now is for the dr's to work through a plan on what is the best way forward to stabilise and protect yr heart and help you feel better again . My advice would be get checked asap with GP 're ankle swelling.. .. Chase up for results and timetable as to when you will next meet your cardiac team... and in the meantime a great resource is the BHF nurses.. who you can call any day 9-5 and they gave me help advice and reassurance... and we're invaluable to me when I wasn't sure what was going on. Please check out the BHF website for their number.

And remember there IS a good life following this diagnosis for us wonky hearties. Do let us know how things are going with it all Karen x

[Traveller85]

You’re very young to have heart failure. What’s the cause?

[Dockdog]

Try not to worry, the weight gain sounds due to fluid build up as with the swelling of your ankles. I had this and at one point while on holiday abroad the local hospital had to drain off 10 litres of fluid! Once I was on DIURETICS - the fluid balance became better and helps tremendously. Diagnosing what was wrong was much more complex in my situation but you already have that, so please have faith in the cardiologist and although heart failure, which I am left with after open heart surgery last year,, sounds awful it is far from a death sentence. There may be surgical intervention you can have followed by suitable medication to help thereafter. Have faith, talk about your issues with understanding people, maybe a cardiac nurse and you will get over the scary part and face a much better future, I know I went through this mill too but you will get there. Very best wishes.

[donkeybaby]

Hi Lisa, I also have just been diagnosed with left sided heart failure. Is there a Heart Failure Nurse Specialist you can talk to? If not I would phone your gp; perhaps you need your medication adjusting. If you don't get anywhere, phone the hospital consultant's secretary or someone at the Heart Failure clinic.

[Semley]

I can only speak from my own experience that, as others have said, on being diagnosed with Heart Failure (a terrible term that sounds terminal but usually isn't and can be managed) I was prescribed diuretics which very rapidly reduced my fluid retention and my ankles got thinner and my weight reduced thankfully. That was over 5 years ago.

Good luck!

[gal4God]

I have a valve issue that causes swelling and right sided heart failure amd am feeling out of breath which I’ve been told can be any heart issues

[Delphiniumsblue]

Hi Pockets22Sorry to hear about your diagnosis.

It is scary to find out you have a problem that is so serious.

I spent many years being afraid of my health when I was diagnosed at 29 with DCM. My EF was around 30% and I felt like shit.

The most important thing to do is not to panic, as you can learn to live with this illness. The doctors will look after you as well and the medication will really help you. Make sure you find one that you can take without too many side effects. There are different ones out there.

Have you tried to change your diet?

The Ornish diet is supposed to help heart disease. I only discovered it a few days ago (!) after being told I couldn't have more children due to my condition (I am now 40) so I am trying to improve my health which apparently you can with this diet.

Also start to do meditation.

Stop working if you haven't already done so for the moment.

Relieve all pressures on yourself until you feel acceptance of your situation.

Then you will feel more at peace and can focus on your recovery / handling.

All the best!!