Heart failure

[Mijmijkey74]

Why is there not just a group for heart failure?

[Captain_Birdseye]

Only organisations can set up groups on healthunlocked.com, there must not be an organisation that's been able to do this.

If you know of any heart failure specific organisations, you could ask if they have a support group or would be willing to set something up?

There are members here with heart failure, I'm sure they'll be along soon - and they'll be happy to offer support here, or if there are any specific groups they could share them.

[DaveTR]

In light of Captain_Birdseye's comment, you could try Pumping Marvellous who are a heart failure support charity

pumpingmarvellous.org

[Lilredsz]

There are various forms of heart failure. Anyone who has a heart related condition is categorised as having heart failure. If you have a specific heart condition, there are various groups you can source

[Hidden]

I dip in and out of this page and Pumping Marvellous. I think the difficulty with the term “ heart failure” is that it is an umbrella term which covers many heart health issues….some people more recently prefer to refer to it as “heart inefficiency “ for some this probably is the correct term but for others such as my husband heart failure is accurate.

My husbands journey to heart failure has been very quick - was fit and well , didn’t even take a paracetamol or get colds then suddenly suffered mitral valve collapse, that’s why I joined this site to gain support for MV . But his health trip altered very quickly- MV surgery was successful via portal access but surgery complications resulted in irreparably damaged to his LV , post surgery he had two cardiac arrests, developed AF then had an ICD fitted all in the space of 24 days. That’s where this site was really helpful - I could dip in and search for answers specific to these conditions.

Post surgery there was no mention of HF , cardiac rehab and let the heart mend and hopefully he we would be back to full health . Unfortunately 18 months later the true extent of LV damage and damage caused by 2 cardiac arrests meant he was diagnosed with level 1 heart failure, but within 8 months this escalated to level 4 and within 15 months he is now reaching end of life.

But there are lots of stories / journeys on here of folk who have HF diagnosis and their journey is very different to my husbands and for many they live a full life with very few symptoms and with meds / exercise / diet improve .

I do think there should be more discussion around heart failure and the levels within it - mildly symptomatic to full blown symptomatic end of life ….that I feel would reassure recently diagnosed people.

[Alceno3 in reply to Hidden]

Am very touched by your story, Thankyou for sharing with us and I wish you both the very best

[Hidden in reply to Alceno3]

Thank you

[HHH2017 in reply to Hidden]

What a difficult & rapid journey you and your hubby are on. Im so sorry to know your husband is so poorly. So brave of you to share, you have given me more insight into EF and I will be better able to ask more questions at my next appt thanks to you. Sending you strength at this difficult time and my thanks for being so brave & sharing.

[Hidden in reply to HHH2017]

Thank you, I shared because it shows how each and everyone’s journey is so varied and it shows how complex the heart failure label is …people mention EF but for my husband this has never been mentioned …..his is symptoms and tests

[Mijmijkey74 in reply to Hidden]

I am sorry this has happened to yourbhusbant and you and his family members helpless to prevent this devastating esculation of heart failure with him when he was fit and well makes it even more difficult to stomach and understand. You are correct that there should be more discussion around heart failure and the levels within it. I had biventricular heart failure I wasn't told that until much later, wasn't even told at that time after waking from my coma (massive critical asthma attack caused) that I had heart failure. Just that my heart hadn't been working properly. Then told heart failure and that my heartb had stopped briefly and rebooted itself and told my body had been shuting down and that had I not had the massive asthma attack, I'd have gone to sleep one day/night soon and not ever woken up again. Cardiologist basically meant I'd have died. Nobody until after my hospital stay mentioned biventricular hf. I read that in my coma diary after icu stay when one a respiratory ward. I was shocked. Got the diary the day I was leaving hospital I believe or day before or possibly the not read.on that ward and diary recieved after hospital discharge. My biological hf was a shock unexpected find for them 3 days into my coma when they were doing a chest scan to check how my chest was looking due to my asthma. Upon admission to hospital they had established I had a unknown viral/bacterial infection just due to how I was presenting. I'd been at home extremely ill for a few weeks and knew/felt I was dying. Had already had chest scan, the hf was missed, I was being dismissed when said was sure it was my heart. Nobody was listening or taking me seriously. I was alone dying at home on my sofa unable to move far, couldn't get upstairs to the bathroom in the end. Couldn't stand up long enough to cook any food. I'd given up. Dragged my very poorly body up my steep stairs with all my might to try get myself moving and cleaned up, and that was obviously to much for my heart and it set off a massive asthma in me like no other I've had before I was suffocating, beiing smoothered, it was like someone had a pillow over my nose and mouth with a plastic bag over top and I was fighting off an invisble attacker intent on suffocating me to death. There was no air, I collapsed on my hallway floor, died briefly on it, and somehow I managed to call 999 on my mobile phone as I couldn't opeerate my home landline phone as my brain couldn't function properly nor remember numbers or how to operate it. By the time.the ambulance arrived I'd been in and out of consciousness smashing my head on the door frame to give myself huge pain to keep myself awake. It was the most windy eerie creepy January night, I managed to walk with support from the paramedics to the ambulance. They were amazed and also commented I remember on whaf a incredibly eerle spooky windy night it was. My heart was doing over 200 bpm the paramedlcs I later found out had thought me having or about to have a massive heart attack and going to cardiac arrest not initally realising it a massive asthma attack. Though with hindsight later they were right in a way, but it wasn't discovered until 3 days into my asthma attack induced coma to try and stop me from dying. I wasn't expected to survive. Someone told me I was expected to be leaving the hospital in a black bag. The asthma attack actually saved my life in a way as it endured my chest was looked at more keenly and closely, and that's how they made their shock find of biventricular hf 3.days into my coma and a call to ecmo was made. Apparently this unknown bacterial/viral infection was attacking my heart or something like that and caused the hf. I'm told the biventricular hf is now gone, but there is scarring to my heart/lungs and a issue with my left ventricle. Have also been told my life expectancy has been shortened by a cardiologist. Have also been told hf never goes away. I'm left in limbo with no idea if the hf is still there hiding away unseen just as it was prior to my massive asthma attack that was critical as they couldn't get it under control (because of the then undiscovered biventricular hf) so could they be dismissing me yet again and not looking closely enough as their are still times now regularly where I must grab hold of things and feel I can't breath properly along with my heart rate going crazy at times when I'm sat perfectly still going over 135 bpm then dropping to lowest 30 something bpm. Nobody has ever explained to me now exactly what now is wrong with my heart if anything at all, I get dismissed, ignored, get mixed messages from doctors, nurses, cardiologists everybody medical. And personally I feel my heart failure is still present mildly. I wish you only happy memories together, tranquility and inner peace.

[Truthseaker in reply to Hidden]

Look at the work of Dr Sinatra and read his book:

The Sinatra Solution

This is what I am going to do, look at how to restore cellular energy production, it should make you husband at the very least feel a bit better and have more energy.

According to Dr Sinatra, some of his cardiac patients were able to avoid surgery by following his advice. He talks about taking supplements, diet and lifestyle changes to support heart function.

I hope this helps

[Deejay62]

Hi there are a lot of us on here in various stages of heart failure. My EF is 23%. Mine began from dilated cardiomyopathy and various arrhythmias, I also have pulmonary hypertension.

I stick to HU because it covers a variety of heart issues some times I scan through when I see the headings I feel are not an interest for. I was in the Atrial Fibrillation group but I left because it became too much for me. I also left the lung group, which I joined thinking I would learn more about pulmonary hypertension but hardly anyone had that. In the end I sent off for some books from their society.

When I had my first device fitted I was given the pumping marvellous booklet by my cardiologist which I still have 13 yrs later. I found it is a brilliant book to have it explains my situation very well.

Eventually you get to know who as the same issues as you. I feel I would have to join a lot of different groups, because of my various illnesses but as you can see I did but eventually left a lot. Years ago I was on a fb group and I found it overwhelming so I left. At least in this group there is a variety of heart issues some I just find interesting and it takes me away from my issues so I do still view a lot of them. All the best.

[Hidden]

Interesting the subject of heart failure. It does vary from person to person. The thing I have found is that heart failure, I like to call it heart inefficiency. Does cover both left side and right side unfortunately more emphasis is on the left side. With my condition my left side has an ejection fraction of approximately 52%. That's not too bad. However my right side has an ejection fraction of 21%. Not good you would say and it is not. But I don't have symptoms of heart failure, however as my condition is congenital then for 57 years my right side has not been right. But do we class it as heart failure? But my condition is congenital so I have to find a group for congenital. Which I have, but even on that forum we are all different. And my group of congenital patients with ebsteins anomoly are all different. Some knew about the condition at birth and have lived with it and have had operations, some like me find out by accident later in life. So unfortunately we are all on different journeys with major part of our body. But one thing that does seem to bring us together is the mental side of exceptance.

[Mijmijkey74 in reply to Hidden]

I have no idea what my ejection fraction is on either side.