Congestive heart failure

Mizuna I know you are worried but try not to. I know how hard that is. In late 2019 had blood tests done at my GPs in January 2020 my daughter took me to get the results and he told me I had heart failure and refereed me to a cardiologist. The cardiologist was lovely and said they really need to come up with a different term as people think heart failure means they are dieing . It just means your heart isn't working fully. ECG showed no problems and I had an echocardiogram just because I had never had one and he didn't expect to find anything. To his surprise it showed something so had bubble echocardiogram. It showed I was born with a hole in my heart .

In 2017 I had jaundice and left me hearing my heart beat in my left ear and I missed heart beats and had palpitations. This is just a bit of back info.

During 2020 back and forth to A&E due to palpitations but everytime ECG was normal until the August when I woke up with my heart going crackers . My daughter got me to the hospital before 7am and straight on ECG and showed I was in atrial fibrillation. Moved to a unit and monitored all day. Dr was brilliant ask lot of questions and read up on my medical history and said he would arrange for me to go to AF clinic and see cardiologist again. This was a Saturday. I felt fine and sent home. Sunday they phoned me with appointment for AF clinic that week.

AF nurse was brilliant and explained I had Paroxysmal atrial fibrillation which means I get AF every now and then. So started me on heart tablet and blood thinners. I went to clinic once a week for a month,then twice a month then once a month for 2 months and discharged into my GPs care. I saw the cardiologist twice and he arranged for me to have MRI on my heart . Had that done November 2021. In the machine for just over 90 mins. Even though they scare me I have never refused one. Had several as I have a Neurological condition .
Any way showed the hole isn't in the connections between the chambers of my heart and I have strong heart function. Apparently before we are born there is a flap between your heart and lungs which closes before birth seems mine didn't. As it's not giving me problems it will be left alone.

Sorry this is long winded but I don't want you to think you are dieing or going to have a heart attack. I still miss heart beats but a 24 hr tape showed I also have extra beats to make up for it. I don't get out of breath and never had chest pain. I take Flecainide twice a day for my heart and Apixaban twice a day which is a blood thinner. Had no side effects for either tablet. Just have to be careful with cuts as bleed more and bruise easier.

My brother has permanent AF and 2 stents in his heart and takes more tablets than me including statins. He lives a normal live and very attractive.

I am now 64. Saw my cardiologist few weeks ago and he was pleased with me and ECG showed no problems and listening to my heart everything sounded fine.

I should say I have been on blood pressure tablet since 2017 and take my BP every morning as was asked at the time to monitor it. Because of the PAF it can vary widely day to day but know if it goes to high and I don't feel well to contact 111 but since on heart medication haven't needed to .

The shortness of breath and giddiness may but due to blood pressure. Hopefully you get your results very soon. Just hope this has helped you and not frightened you. But this is what happened to me .

Thanks Whiff, very much. It's good to hear all the details, I really appreciate your reply. It's ok, you haven't frightened me because fortunately I'm not a worrier. I'm just confused as I said. My blood pressure is fine. I need to know what I can and can't do. I have two young grandchildren and until I know more I don't know whether to be on my own with them (the giddiness is very obvious when it happens - I stagger). Also I'm due a long-awaited knee replacement in five weeks and hope this won't delay it, though I'd be surprised if the surgeon will go ahead until I get a proper diagnosis. My doctor is excellent so I know I'll have good advice/referrals etc.

Mizuna I'm sorry to hear your having problems. My husband is in a similar boat having had an emergency admission last week (never had heart problems but hypertension for many years). We don't know how it's going to go now and he is very cautious about what he should and shouldn't do. I hope you both get some stability and are worry free soon.

Thank you BigBertha, I hope yoir husband has some clarity about it all soon. My daughter-in-law and I have decided to put my more strenuous grandparenting duties on hold for a while, which I don't mind as the five-year-old lad is a livewire! I live near a beach so I shall take a book and sit on the sand instead.

Mizuna I was born with a Neurological condition which effects my limbs I used to get limb jerks and seizures. Thankfully my new neurologist put me on a tablet to stop them 3 years ago next month. But even when I was having them it never stopped me playing with my grandson's and my daughter trusted me on my own with her eldest for hours. The youngest was born after I started the tablets. But the eldest thought it was funny when nannies arms or legs did jumping about.

Don't stop being with your grandchildren doesn't matter how young they are if you say nannie needs to rest or sit down to play they do understand.

I started the limb jerks when I was 29 and my daughter was 4 and son 6 months old. They never came to any harm and I never had any warning my limbs where going to jerk. I wouldn't carry them up or down stairs. And made sure I held the tightly and I never dropped them.

The AF nurses told me to live a normal life. I go to a sit fit exercise class every week and it helps me with my limbs and heart plus it's a great social activity.

Your body will let you know when you need to rest. And if you feel tired don't fight it have a nap.

Your GP knows you have your op in 5 weeks and I am sure he will get you sorted out before then. Fingers crossed it goes ahead for you and remember to do the exercises afterwards no matter how much they hurt .

There is a thread on this forum for people with knee and hip replacements they will be able to give you help and tips for after your op .

BigBerthal I hope your husband gets a diagnosis and treatment soon. I can understand he being cautious about what he can and can't do. But he does need to have a gentle walk and not sit all day . Just do what he normally does but his body will soon know if he needs to rest . Go on the British heart Foundation website there are forums he could talk to other people and get help and advice .

This is from my own experience only.

Thanks Whiff for your encouragement. I have been full-on involved with my grandchildren forever it seems and am on crutches which I find tiring, so I don't mind a bit of respite. They all live nearby and I can see them at their homes whenever I want, which for the time being will suit me better. I've had one knee and two hips replaced - am almost bionic - so yes I appreciate the importance of the exercises. And I'm well used to pain so that won't put me off. In fact I enjoyed the regime after my ops because I knew the exercises were helping me.

Whiff... Had given you a excellent example.
I too had similar.. About 18 months ago I went into Fast AF..
Just prior I was feeling really unwell couldn't get out of bed as I kept feeling faint, contacted GP they thought it was Vertigo?
About a week later I went into Fast AF..really frightening contacted 111 totally useless.
Luckily I'm a Cardiac Physiologist, I got in contact with a Cardiologist chum, he saw me was admitted to CCU to get my Heart rate stable with meds, but didn't stop the AF so I had a Cardioversion 6 weeks later..

I have always known I have a small Hole in the Heart, but it has never caused me any problems.

However, back last summer I told my Cardiologist I was feeling sluggish, so my meds were reduced. Didn't really help so I had 4 day Heart monitoring done, to see what was going on.
Turns out my problem was due to Intermittent 2 degree Heart Block which now is the thought that, it was that, that caused my feeling unwell and the start of the AF.

So last July I had a Pacemaker, can't believe how much difference that makes.
I know I'm only about 1 % Paced, so far no AF seen on check.

Back at the gym , had a Hip replacement 3 weeks after Pacemaker was put in. Can't believe how much I was struggling before, now full of beans.

So hopefully you will be well and sorted soon.

..........bubble echocardiogram. It showed I was born with a hole in my heart

For entirely different reasons I had a bubble cardiogram last week, that showed a bit of leakage. The doctor told me that it was so small it was nothing to worry about and that 25% of the population have a slight leak where the flap between the different parts of the heart didn't completely join up before birth and it causes them no problems at all throughout their lives.

Visgirl so glad the pacemaker has made such a difference to your life. My brother felt the same after the 2 stents where put in his heart. It took him 45 mins to walk into the hospital from the car. After he was discharged a few hours after the procedure he felt he could have run home.

MOnica thank you I didn't realise what the percentage was that people where born with a small hole . Also I wrongly assumed the flap would be in just one place. Made me laugh to think before we are born we have flaps in different places. Our bodies are amazing things.

Mizuna when you said you are almost bionic I suddenly thought about Lynsey Wagner who played the bionic woman in the TV series. I'm 64 so remember the series well and Lee Majors as the bionic man. Wishing all the best.

My mother told me , very gleefully, she loved attention and making me look after her, that her heart was failing when she was 72.
Her second H had died earlier that year and she was missing someone to dance attendance.
She lived to nearly 102 with no further mention of it.
It was true , she had been told that but her GP assured me that she was under good care.
I think it was then she was put on water tablets, was that a suitable med in those days?

Ann sorry you where subjected to that treatment from your mom. My mother in law was on water tablets and wafin from when she was 80 for her heart trouble she lived until she was 91. She outlived her son my husband by 11 years . She was a vile hateful woman but we never gave up on her ever after my husband died . I looked out for her going every week going to drs appointments with her. But after my husband died she denied she had a son or 2 grandchildren. But like me they never gave up on her. Unfortunately horrible people live long life's and good people die young. My husband was 47. But we all do what our consciousnesses will allow and without her I wouldn't have had a wonderful man in my life and our children. That's why I never gave up on her.

Whiff thank you for your detailed first response, haven't read the rest. I'm sure it was helpful to many of us.

Thanks everyone, so interesting to hear your experiences.

I have complete Left Bundle Branch Block and cardiomyopathy following viral myocarditis nearly 5 years ago, initially I was given a prognosis of 3 years but I’m still standing!
My left ventricle isn’t working because of the disruption to the electrical impulses, so I take medication every day to strengthen its activity.
Recently things have been ramping up so I’m waiting for tests to determine if I now have angina as well because I’m increasingly breathless even after simple things like getting dressed or eating a small meal 🙄
I guess I have to try and pace myself better but I don’t know I have overdone things until it’s too late!
Onwards and upwards 😄

Have read the rest, very helpful information from everyone. I'm sure it answers a lot of questions for people.
Sorry to hear all those living with heart problems.

After further pre syncopal episodes (fainting without passing out: the world goes snowy in front of me) my doctor sent me to hospital for tests on Friday, neatly inserting a cannula at the surgery to save hospital time. No heart disease or clots on lungs etc etc etc. Doctors baffled but have diagnosed arrhythmia. Be interesting to see if they will do my knee replacement in less than four weeks' time.

What a mystery. Hope you're not feeling unwell with it all and that you knee replacement goes ahead on schedule.

Thank you Aveline, it's restricting because I'm still so breathless. Every task has to be done in small bouts. On the plus side I've knitted a cardigan, a blanket and reformed a cord dress in the last 10 days without getting breathless!

Mizuna like Aveline said it's a mystery but glad to read you sound in good spirits and keeping busy in the ways you can. Fingers crossed your surgery can still go ahead .

Thanks Whiff.

I echo what Whiff said.

I was admitted to the cardiology unit in hospital a few weeks ago, with the same symptoms. I had become very unwell.
In my case, a change of medication was required.

After two heart attacks and umpteen tests, a few years ago, (I have all your symptoms ) Mizuma I was diagnosed with heart problems and on seeing my recent blood tests, my GP told me I now had heart failure.
Of course, I thought I was dying!
That's not what heart failure means at all! When I was in hospital, this was explained to me. There are various stages too!

My scans never show up anything, I have clear arteries, low chlorestoral and no leaky valves.
It was only when I had a complicated angiogram as part of a research programme, it was discovered that the micro valves inside my heart have been damaged by my RA.
I'm now on multiple medication to manage it.

Please don't write yourself off, just yet.
I hope the doctors get to the bottom of things.

Thanks Marydoll. Interestingly, my breathing is beginning to get a little better. Two weeks today since it all started. Apparently my white blood cell count showed that there might be an infection somewhere in my body, which could affect my breathing, so maybe it's been that. Baffling. I've been mega tired for weeks anyway (put it down to struggling on crutches for such a long time) and am now wondering if I had Covid at some point without realising it. I may never know!