Hi everyone I wanted to update you on recent test results.
Xray should no fluid on the lung although i still get pain when i breath in.
Echo scan shows my left ventricle isn't work as good as it should however at nearly 40 so it isn't as bad as i first thought.
I have been referred to the heart failure nurse who I have seen this morning. She has changed my medication and I have further appointments to see how I get on.
I have also had an MRI and discussed the changes since my triple bypass. It appears that two of the grafts have not taken hence the diagnosis of heart failure.
I would like to say a great big thank you to each and everyone of you that replied to me 20 days ago. I really didn't think i was going to live the rest of that week. However here I am feeling much better than ever. I have had PTSD in the past due to a car accident and i have a bit of a relapse with depression. I came on hear and read all of your replies again and I have a smile on my face Thank you.
So let us see how the new meds work and hopefully I may get to ride my bike again. Being out on my bike is definitely my Happy Place
Take care everyone
August 24th 2022 out on a bicycle ride with my friend. It was a 20 mile off roader, one we have done before. I kept getting a pain in my back, stopped and stretched and carried on.
Long story short. I rang the doctor after my shower he insisted it was a pulled muscle. I insisted it wasn't. Take painkillers you will be fine.
One week later I rang the doctors again. Got a female doctor whom i had seen before. Within 2 minutes this is what happened. "Pat i'm stopping this conversation and you are to ring 999 got to A & E, I'll send them a note. I asked why? She said suspected heart attack "WHAT"
Apparently i had had 3 heart attacks. Six weeks later I had a triple bypass operation on the 5 October 2022.
I have been recovering really well, i was back at the gym to rebuild strength and stamina.
To be honest i never really felt ill. If i had a tick list of 100 things a heart attack would not be on. I have coped extremely well and just got on with living.
That was until last week. My bloods appointment was cancelled but i mentioned that i wanted to speak to the nurse about feeling a bit breathless. I had a doctor call back the same day and was asked to go see him the same day. He asked lots of questions. My bloods appointment was the following Tuesday and i had an xray on the Monday.
The outcome and diagnosis is "Heart Failure" you could have knocked me down with a feather and I have found it very, very difficult and emotional. The complete opposite to hearing of the heart attack.
I have appointments for an echogram this month and another with the cardiologist next month.
My family went through the trauma of my heart attack, not me as i felt fine. How on earth do i now tell them i have heart failure. I'm thinking i will wait until i see the cardiologist next month when i have a better idea of how serious it might be.
What do people think, how did you cope with this kind of thing.
thank you for reading about my story
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2wheeler
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I’m very very sorry to hear about your heart attacks and now, the heart failure.
It’s a very scary term, and you will find that a lot of people on here can empathise with you on that front when you’re first diagnosed.
However, you will hear very positive stories on here about how people have almost reverted back to their normal lives whilst having heart failure as a result of medication and lifestyle changes.
Please know you’re not alone. The echocardiogram should be able to tell you what percentage your heart is working at.
As for telling your family, they sound incredibly supportive so I believe it is up to you as to whether you want to wait for your appointment to tell them or tell them sooner. Either way, I can’t imagine they’ll be any less supportive and you may find that it also helps you cope better emotionally in terms of coming around to the diagnosis.
I don’t have any experience of heart failure however, I hope others will be by to share their stories.
OMG - sorry to hear that. This is one of my worst fears. You think your heard disease being managed well but you always have this hanging sword.
In terms of informing your family - it really depends. What will be their reaction if they realise you didn't tell them for a while. On the other hand, if you wait and get details from cardiologists, then you may be able to construct the message carefully without making them overly worried. I assume you don't have any symptoms or need help that others notice and are able to manage it without any risks. If it can't wait safely, then you should inform them but take some time to articulate so it lands it not too bad. Also, medical conditions happen and most of the times they are beyond our control. So, one should not really feel guilty about any diagnosis and how to share. Families and friends are there to support and can provide and gather strength when going gets tough.
When i was told to ring 999 i rang my daughter to take me to A & E. She was there from the beginning and when i went from the waiting room to resus she was visibly upset.
I do have symptoms which she would not recognise and so i can get away with it for now. I thought by the time i had a result from everyone i could then tell her.
Thank you very much for your reply it is much appreciated
Hi 2wheeler, I can see from your post you have been through so much the heart attacks and now the heart failure that certainly would be a shock! 💔. Glad you have your echo and you will be able to see what your EF is. I personally don't have any experience in heart attacks or heart failure but I just wanted to say hi and welcome to the forum and to wish you all the best with your appointents and keep us updated on how you get on. It can't be easy processing this yourself let alone telling your family aswell so tell them when your ready to. Take care ❤️
It is always good to get things off your chest to people who understand. Just taking about it and not keeping it bottled up somehow makes it easier. We are all here for you.
Wow you had no need to feel wary about replying I totally understand where you are coming from.
Yes i had apparently 3 heart attacks possibly more. I got to see the scaring via an MRI scan it was amazing to see.
I am beginning to feel that unless my daughter notices something different i will wait for all the results to come through. I will see and chat with the cardio team after the echo so maybe then i will have more information.
thank you so much and yes i will return with the results
Heart failure, does not mean that your heart is failing and you're going to die. Honestly it really needs to be renamed. What it generally means is your heart is not pumping quite as efficiently as it should. People can live to a good age with heart failure and sometimes with medication it can even be reverted.
I am now beginning to understand what you have just put into words. Yes as i said earlier it was those words "heart failure" that frightened me big time.
I also think that i was getting these results via the phone as the doctor was looking at them. I believe the shock in his voice was what then made me think i was going to die. I was asking questions he was looking at the next result. The outcome was several problems which I believe neither of us were ready for.
My mind has been put at ease by you and all the other lovely replies. I even have a smile on my face again
I’m glad jeanjeannie has replied regarding the use of the term failure. I am not able to speak from first hand experience but have read many posts here where people have been, most understandably , shocked and deeply upset by the term being applied to them.
It seems that if you think of the term as heart not working to full capacity, that is a more appropriate interpretation of the term.
Until you find out more about the extent of inefficiency or any damage, your own diagnosis, and the treatment for it then the blanket terminology is not that helpful and will probably only upset your family as it has you.
From what I have read, the heart is a strong muscle and inefficiencies can be compensated for or medicated.
So maybe have something ready to say to your daughter, or anyone who asks about it to the tune of ‘ My heart isn’t working at full capacity as a result of the HAs and I’m seeing a specialist to find out what can be done to assist it ‘ [would this seem appropriate to others here who do have similar diagnoses? ]
I would emphasise I’m only reporting what I’ve learnt from reading others’ experiences.
Jeanie is quite right. The heart is not pumping efficiently any more but those of us on here are all living with it. In my case I have to pace myself. I have to use a buggy on our hilly golf course rather than walking. I have to garden in shorter bursts and sit down and recover before I start again. May you have many happy years ahead of you.
Yes apparently it is the left ventricle that is not pumping the blood around my body as it should. Roll on the results i will feel better when i know the answers good or bad. I'm a need to know type person
Sounds like my recent diognosis left ventrical distolic disfunction. I've been put on a medication called Jardiance .it's a drug for diabetes that has been shown to help this disfunction. I'm not diabetic myself.The silent heart attacks are a bit of a worry as most people would have thought nothing of having a bad back after cycling .
Good Morning....having been fit and very healthy all my life, the shock of being diagnosed with a heart problem came as a massive shock to me and my loved ones. Please don't go into meltdown about the words heart failure. As someone else has mentioned, it basically means that your heart isnt pumping at its best and needs a bit of support to be able to do it's job. It can affect people in different ways of course but again is usually assisted by lifestyle tweeks and fantastic medications and of course, your attitude and the way you deal with it goes a long way. Have a look at information on British Heart Foundation site but also another excellent resource is Pumping Marvellous. Please don't just Google!! Make a list of questions to ask your consultant so that you are armed with all your facts and also make yourself knowledgeable about any medication you might be put on. Telling your family will most probably be upsetting and scary if they do not understand your diagnosis so the better armed they are too with information, the better their ability to deal with it and support you. You will also get lots of support from people on this forum who have experienced being told the same as you so never feel uncomfortable about asking things or sharing experiences. Good luck with everything and I hope that you will ge able to move forward in a positive way that is also less scary for you. In having a heart problem, it doesn't necessarily mean you have to give up doing things, especially keeping fit....you just might have to do it all in a way that's more accommodating of your diagnosis. All the best and take care x
Hi, I dealt with the heart attacks because i really didn't believe them and i never felt ill. I had a slight back ache which i put down to acid reflux. Whilst in the LGI i had a little walking group and did 10000 steps a day up and down the corridor.
On the other hand being told i had heart failure has absolutely knocked me for six. Hence finding this chat group which has already helped me tremendously. I like a bit of blood and gore and would have gladly stayed awake to see the bypass operation "giggles"
On thinking back it was the word failure that frightened me. I have many questions for the cardio team and hopefully i will then find it easier to come to terms with.
I have recently been told I have heart failure with preserved EF. And I am breathless ( am perusing the fact that I am anaemic also which also cause some of my symptoms)for me this is coming 5 months following CABG, no heart attack and is a bit of shock so know how you feel. I too like a bit of blood and gore so when I went for said bypass asked if they could film my heart beating in my chest, which the anaesthetist did and I have a 6 second video of my heart beating😃
Haha I also have a video of my heart beating via an MRI scan wow it is amazing. I was also given a photo of the damage the heart attack did and it looked like a zip to me. One of the nurses at the LGI was able to watch my friends bypass surgery and said it was absolutely amazing how it was done. She wasn't allowed to tell us any details. I say my friend because we were in the LGI together and in opposite beds and became really good friends.
I also got to see in detail an x-ray i had taken because i had fluid on the lung. The amount of staples holding the rib cage together was an amazing sight
many many years ago 30yrs+ I was fortunate to be working at a place called the national heart hospital and a doctor there did a heart transplant. They had a viewing gallery so you could watch the surgery. That was amazing too
Your heart isn't suddenly going to fail. We have this discussion almost every week on here about what a dreadful term heart failure is. Almost every week someone comes on absolutely terrified because they just got diagnosed and think their heart's going to suddenly pack up. It simply means y our heart isn't working at full capacity. YOu should be told what your Ejection fraction is, ie the amount of blood your heart can pump out of the ventricle and round your body. my.clevelandclinic.org/heal.... Don't panic if it seems low. That chart will show you that normal is around 50% or just above. It can usually be improved with lifestyle and medication. Heart failure is a dreadful frightening term and should be changed.
I'm not surprised about your reaction to the heart attacks. My only symptom was severe indigestion. I took rennies for 3 days and it was only when I got mild tingling up my neck and down my arm that I did anything. Even then, despite the paramedics seeing suspicious things on the ECG, the triage nurse at A&E didn't get me seen for 5 hours. Heart attacks are not always grey, sweating and clutching your chest.
I completely agree...wish they would come up with a different term rather than heart failure. I've never had a heart attack but have a stent in the LAD and some valve issues - and no real symptoms now. But I am classified as having heart failure. I do understand that the term seems to be an all-encompassing one they use for a myriad of conditions!
Yes totally agree i just had a pain in my back and as i was out on the bike i thought it needed tweaking.
he term heart failure as i said really knocked me for six. I am now more relaxed about the term thanks to each and everyone who has replied.
As someone also pointed out more information is now being found that women may have different symptoms but i suppose looking at yours all of our heart attacks are different.
Women most certainly do have different symptoms and it also depends on which part of the heart is affected but I found that even A&E nurses didn't recognise the signs. I got vaguely offered an aspirin if I wanted one but not realising how important it was I said no thanks because they kill my stomach. It was different last weekend when I was given 4 by the paramedics and told "get them down you". I've found that paramedics are far more aware of the differences.
My A & E experience was a very good one and the staff were brilliant. I was seen by two doctors who asked similar questions and and of course the outcome was the heart attack.
I also had dealings with paramedics after being woken with an extreme pain in my left shoulder. It happened to be fluid in the lung and i was given morphine for the pain. I was also told to take 4 asprin by the 111 operator and told to tell the paramedics when they arrived. The nursing staff at A & E were again so good.
I totally understand why staff didn't recognise the symptoms as they seem to be very different in most of the people on here. The tv adverts need to be updated as they only show one set of symptoms.
I also have medication for acid reflux which was increased because of the other meds i now take
It's now 5 yrs since i had the HA and it re ally wasn't good but when I had problems a few months later I was straight in and seen immediately. This last weekend was a heart arrhythmia so wasn't an emergency . The place was heaving; 600 trolleys waiting and 15 hours before I was admitted. I'm sure a suspected HA would have jumped the queue though. The staff were buckling at their knees.
I do believe that those who use the A & E for miner problems should be fined. I have seen people in the queue who had a scratch on there arm. It makes my blood boil. can our own gp's do more? Should the government have removed thousands of beds. There are so many questions and not enough answers.
I have needed to go to A & E twice since the bypass, first time weird heart beat woke me up, turned out I also had a lung infection. I was bumped immediately to the front of the queue. The second time again i was woken up with a pain in my left shoulder which hurt when i breathed in. The fact i arrived in the ambulance helped me get a bed quicker plus it was 3:15 am.
Lets hope it improves and we get the NHS back to what it should be
Those people go to A&E becausethey can't get a GP appointment. |I rang mine last week urgently about an allergy to the meds I'd been given; never got a call back. I rang again around 5pm and my own GP called me back. He said they'd had 1000 calls that day and that's a teaching practice with at least 9 GPs and 4 or 5 trainees.
I cannot imagine how much of a shock that must have been especially as you must be pretty fit to ride off road for 20 miles. I can't offer much except I have read recently some specialists want to call heart failure by a different name as people can live a long time with it. My mother in law was diagnosed at 68 and lived till she was 93!Good luck to you.
Thank you so much for your reply. A 20 miler was a short ride as being out on my bike is my happy place. I'm not allowed out on her at the moment boohoo.
I seriously do hope they change heart failure to something less scary.
I have been a first aider for many years and the way heart attacks are described was nothing like mine. I was lucky in as much the second doctor picked up on what i was saying and that i was absolutely certain it wasn't a pulled muscle. She was spot on.
Yes, we are all different and deal with things differently. I have had a few broken bones etc and love to watch my bloods being taken hehe. I feel sorry for the nurses sometimes.
I also make a list of questions. I really asked the question when the cardio team arrived to see me. I said "is what i have been diagnosed with serious then" The cardio nurse looked at me and said, You have had at least three heart attacks so YES it is serious. ooops. I put it down to not feeling ill and again not quite believing
My HA started whilst I was swimming. All I had to begin with was an ache in my left forearm that I attributed to a muscle pull. I did feel very sick afterwards but that passed and I then had chronic wind (belching). Walked home and kipped on sofa. Was only later I didn't feel "right" so wife rang 111 who sent ambulance. Several ours later HA was diagnosed and treatment started.I do know the Sports Centre reviewed their first aid stuff and held staff training in light of what happened to me.
That just shows how different we all are. When the doctor in A & E was taking me to resus i heard the words Silent Heart Attack, I looked at my daughter and said did he just say what i thought he said. I had to ask him to repeat it. I had my eyes on the exit sign at the end of the corridor and telling my daughter look they are going to give me some meds and send me home, haha
I live in Bradford and we have BEEP Bradford Encouraging Exercise in People. It is a brilliant service with a gym discount. You are also assigned a personal trainer my was level 4 and she was very good and showing what i was allowed to do and NOT allowed to do.
I hope you are recovering quickly Take care and thank you
My wife and I did a double take when the Dr said, somewhat casually, you are having an ongoing heart attack! I was doing fine until a month ago but have been having some issues since, so much so that I saw a cardiologist yesterday and he is arranging tobook me in for "another look".
I hope that all goes well with "another look" and that you recover quickly. We just never know what is around that corner. My doctor wasn't casual at all, poor chap.
Hello 2 wheeler, I am fellow HF suffer of 2 years which was also out of the blue (mind you I avoided any heart attacks).
So yes I know what those words mean and they are not nice.
The best way of telling the family is that they have discovered my heart isn't pumping as good as normal (That what my cardiologist told me).
Can I refer you to the pumping marvellous website the charity for heart failure pumpingmarvellous.org/ it's down to earth explanations advice etc. Well worth referring to also it might be useful for the family to have a look at.
Lifestyle changes/meds and exercise will help to keep it in check, unfortunately there is no cure yet but they are working on it.
My life is different but I still find it rewarding.
One other thing you will be told at some point the % your heart is pumping at, do remember one thing when they tell you this that it is considered a healthy heart pumps at around 60% plus (Never 100%). So if you got a reading like me 20% to start off with it doesn't mean your heart is only pumping at 1/5 of its normal capacity for you.
Thank you for your reply I have now decided that when i have all the results and seen the Cardiologist that will be the time to speak to my family. My family and close friends were the ones traumatised by my heart attack. I feel that i can save them some worrying and feel that is right for me and them.
I have taken a little look at the site and it looks very informative. I will look at it in more detail later and i have saved it for then.
Thank you again and Take care
Sorry to hear of your problems. My issue is completely different to your problems. But we all suffer in some way mentally. From what you have written you seem to be a strong character and you are also interested to learn more. For one thing heart failure is really the wrong terminology. Yes your heart has been damaged and section's of the heart muscles has been compromised. So basically it does not pump very effectively. I presume that as you done alot of cycling then your heart muscle must have been reasonably strong before your heart attacks. So it is now a little weaker than it was. With modern medicine the heart can be stabilised and the ejection fraction can be brought back to normal limits. I hope that you can get back to normal, but remember it will be a new normal. Good luck.
Thank you for your reply, yes I always felt strong and I do believe that my cycling and general good health made the attacks seem less serious. Although they obviously were.
Physically I repair very quickly and always have done. Mentally because i appeared to be doing so well it was difficult to hear those two words. However after reading all these wonderful replies I have been feeling much more positive.
Thank you again and take care
Yes those two words heart failure are hard to take. I have a faulty tricuspid valve from birth and right ventrical is compromised from the congenital disease. But I don't have heart failure. As my body and heart has compensated for many years. But that's what my medication I take will help, to reduce my heart to go into heart failure mode. But the body is incredible in being able to compensate and keep going. Keep cycling just be careful.
I'm not allowed on my bike at the moment. I have also have other symptoms including dizziness, not a good thing when i love the downhills haha. I may have to sell "all" my bikes and buy an e-bike
Oh so you have a problem with the flap between the tricuspid valve and another valve, I think.
I was allowed to view my heart beating via the MRI scan, it was truly amazing. Yes our bodies are quite amazing.
Thank you again I will try to be careful when i can play out again hehe
Yes I have epstein anomoly. Yes I have had ct scan two echo scans and an mri. If you read my bio there is a little bit more information. But when they found my my faulty valve I was also looking at the echo scan and it was when the technician said that should not be down there it should be up there. And there iam looking at the screen at the same time. Any way I have another cpet test some time this year on an up right bike my cardiologist says she wants more effort I thought 7 minutes was good enough. So iam down the gym practicing I think I need to get up to 250 watts on the bike but the trouble with a cpet test is they make it harder to peddle until you carnt do any more. If I can push for 9 minutes I think I will be proud. But it is what it is. Is the dizziness from the medication? Iam on lisinopril and spironolactone.
Thank you for the information about your diagnosis I have learnt so many things from everyone who has replied, I am so grateful.
I am on a cocktail of meds and my Ramipril has just been increased because of my BP readings. I am currently taking my bp at home to hand in next week. As for the dizziness i have no idea why that is. another question on the list I suppose.
Oh I so dislike the static bike however if it is going to be helpful i will do it. Whatever the weather i am an outdoor person but changes may have to be made and I am up for that.
You are welcome. I have to admit the static bike is OK but to sit for at least 10 minutes not going any where and the peddling gets harder and harder. I think it increases every minute until you carnt pedal any more or your heart goes to 85% of your maximum? I might see if I can listen to some music. Might help me push a bit harder. Any way a couple of famous people who have had heart conditions are Roger Black and Graeme souness. I think there stories are on the British heart foundation site
On the bikes at my gym they are all singing/dancing with usb ports for your mobile. They have the tv, pretty pictures and routes on them. It is the fact that my rides and routes are to actually set up to go and see things. I am not one for getting A to B as fast as i can. I like to stop and take photos and do recces however it is what it is.
I don't think the nhs has that luxury would make I more interesting. I suppose I could keep looking over to the computer screen see my heart rates. Or should I just shut my eyes. I took some nice photos last week of the flying scotsman. Nice afternoon out.
I am very lucky to get to a gym that has such things and i am not complaining about it. I just prefer to outdoors.
Ah the flying Scotsman what is not to like. I have ridden so many reclaimed cycle tracks. I did a return ride on the Cinder track Scarborough to Whitby and back.
I live in Bradford and we have the Queensbury tunnel which is 1.4 miles long. If only Highways England would see the potential of reopening this tunnel for people to use. I will resist with the politics of this matter haha
I'm like you I had my cardiologist put my angiogram on a CD so I could send a copy to my daughter who was abroad I always like to watch things I'm having done just fascinated with anything medical
Oh when i had my angiogram shortly after being admitted i was absolutely fascinated by it. Looking at the big screen and asking "is that my heart" hahahahahah. Like it could have been some random picture he had put up there.
I remember being told that i may be in there for about an hour however within 20 minutes he was removing everything. He just looked at me and I don't have enough stents to fix that. We need to talk
Yes i'm the same answer all my questions truthfully and let me look at every test, scan, xray you need to take
Sorry to hear about your health problems. When you see the cardiology team, maybe also check out side effects of any medication you are on. My husband had a double bypass and has heart failure but we’ve discovered that the dizziness, breathlessness and tiredness are brought on by by his beta blocker. These symptoms didn’t start straight after taking the medication. It took a while
I did ask my doctor about these symptoms but at the time he wasn't really saying much. I do get to speak to the cardio team when i go for the echo and i have a list of questions.
The breathlessness came on pretty quickly but 8 months after the bypass. I had no side effects in all of that time. The blood results were given over the phone and again the doctor wasn't answering all my questions. I will be asking them all again though.
Bit late to the conversation, but just to chip in my two pennorth.
Spin instructor and road cyclist here. No previous, and no symptoms, so routine health check Feb 17th this year was expecting the usual "very fit for someone your age, carry on", not "Oh, you seem to have developed a heart murmur, see a cardiologist".
Obviously I think can't be much and go on 3 weeks holiday.
March 14th see the cardiologist and world turns upside down in pretty much the exact same way as yours.
Cancel all holidays planned until at least end of May, get an echo, you should be crawling in here, suspect heart failure.
I now know, of course, that inefficient heart would be the appropriate description, and hopefully that'll change one day.
Spoke to my wife, and we held off talking to anyone else until after echo (booked for the next day, given the cardiologist was pretty concerned).
Have the echo, sure enough efficiency closer to 20% than 30. And to add to the mix, cardiologist comment was "referring you immediately to a surgeon as there is a hole in your aortic valve, most likely caused by some sort of bacterial infection, but we will probably never know!".
Same as you again, how can this possibly be, and how do I explain this?
Mentally horrible. What happens now? Is this it?
Had to tell close family. Not easy, given the uncertainty of what next steps were. Well worth it though, because talking does help a lot. Saves bottling it up alone.
I appreciate I was very lucky to be able to see a surgeon pretty quickly, and as I've discovered these guys are very confident in their abilities to fix stuff! He said he'd give me the biggest valve he could and I'd be stronger afterwards than before.
Rushed in within 3 weeks for valve replacement (end April). Came out of hospital after 8 days thinking it'll be months before I can do much more than shuffle about.
Here we are 9 weeks later, back on the bike (with max heart rate limit, driven by cardio rehab team, who are a must I would say).
Strength training with rehab twice a week, 2 or 3 cardio sessions (they want to see about 150 minutes working at 80% heart rate max across those, so although the max rate is a bit frustrating, it's not easy by any means!).
Echo mid June showed efficiency now around 45-55 (turns out its not an exact science), so happy with that.
Main message I'd say is yes, your heart is not as efficient as it should be, and the echo should show up why that might be.
Get that sorted and you can work on improving that efficiency again.
Will it ever fully recover? Will probably depend on how distorted the heart may have become whilst it has been trying to adjust to whatever is wrong (and of course without bothering to tell you there is a problem, by way of symptoms !).
Mine had become pretty messed up, but advice is that as long as you do the rehab, things will definitely be closer to normal than if you were to sit on your backside.
Drugs will almost certainly be needed to help with that. I am not a fan, but have to accept my 5 a day cocktail is very necessary.
Yes, it's mentally still hard to take sometimes, having thought I was doing the best for my heart beforehand, but there is a lot of bad luck about the place and why should I be immune?
Wish you all the very best, and here's to future London to Brighton bike rides for the BHF 😊
From one biker to another Thank you, being out on my bike is my happy place. I'm an off roader and was going 3-4 times a week. The 20 miler was a short ride which maybe turned out to be a good thing I suppose. I have a little group and depending on what i get called whilst out determines how good i think my route was lol. I've been asked not to go out just yet but i can go to the gym and maybe the pt will need to change my exercise card.
I've been accepted as a volunteer for the UCI World cycling championships in August so fingers crossed i am allowed to go. I'm in Athlete services so an easy post and just hobnobbing with world champions haha.
I'm watching the TDF at the moment so at least i'm happy with that.
my experience is not the same, having been diagnosed with severe arrhythmia and a leaky valve but like you I had not experienced any symptoms, and the problem only detected during a routine health check. However I am assuming you are female ? So much has been coming to light how women’s heart problems present totally different symptoms from men; it was a female doctor in the first instant who recognised that you might have experienced a heart attack ! Sorry if I have made the wrong assumption.
Please no apologies are needed and yes I'm female and yes the female doctor picked up on the symptoms straight away. I just know my own body and knew there was something not quite so top marks for the doctor.
Yes i have heard that new information is now being seen between male and female HA's. As i said to someone earlier if i had had a tick list of 100 things a Haert attack would NOT have been on it.
I totally sympathise as I got the same message one and a half years ago. I still remember sitting in A&E being told I had heart failure asking what does that mean, and how many years left did I have. Heart failure sounds dreadful, and they should change the wording.
First thing to remember, your heart has not failed it is just not pumping as well as it should.
Second, super important, DO NOT google the statistics for survival rate of heart failure!!!
There is a new medication out there called Entresto, and it is working wonders on heart failures. It is complete changing the story and survival rate, but the stats have not caught up with the new numbers. This means you will just be looking at irrelevant information that will scare your socks off.
My EF was 39, I was put on Entresto and various other stuff. Last test my EF was up to 61. I am back in the gym and feeling great. Looking forwards to seeing my kids grow up and enjoying life. Heart failure can take up to a year to recover from as basically your heart has been beaten up, and needs time - but you can get there. I would say tell your family, they sound amazing. Remember your heart has not completely failed, it is just under performing at the moment - you will get there. I wish you all the luck with your future. Take care of yourself and stay away from Dr google 😊
Totally agree about DrGoogle and i would never rely on that information. I have a lovely family my daughter has been amazing. I also have a son who buries his head in the sand and that fine too. As i have said before i will tell her when i get the echo results.
You sound so positive and I am so pleased that you are doing so well.
I'm strong and the eternal optimist and each message I have read on here has helped so much.
2wheeler, it sounds like your response to your events to date is very positive. None of us wanted to have HA's or be told we have HF. I've had three HAs, muliiple stents, and all this happened from 44 yrs on (18 yrs ago). Like you, very fit and active. My last HA resulted in a measured LVEF of 30%, and I was told it meant HF - it scared the shit out of me! I thought it was a death sentence to someone who was very fit and active. My future life looked like I was well aged before my time. I read a lot of science, physiology on HF, as well as medical research and classifications. I learnt a lot! Firstly, it turned out my being told I had HF was due to my immediate post HA LVEF being measured as <=30%. That, in NZ, meant I could get subsidised access to the drug Entresto. 6 weeks post HA my LVEF was measured at 45%. I have remained, and never was symptomatic of having HF. I continue to exercise quite vigorously. And that was the main thing I learned from my reading - some folk have very high tolerance for exercise despite having relatively low LVEFs. Indeed, there is no reliable correlation between measured LVEF and exercise tolerance. In NZ, the HF nurses are called Heart Function nurses, and as others have said, your heart now likely is less efficient, but it is likely far from failing. I hope your ECHO tests reveal good news. Exercise, meds, and a positive mindset means you will continue to live an active life, just as many now do like me with reduced heart function. If you end up with a heart that functions only 60% percent of a normal one (i.e. 60% of 60% = LVEF of 36%), understand that it may well be more than capable of doing what others can't even do with a LVEF of 60%. The pumping marvelous website/group is highly recommended, but so is understanding heart failure is a multi-varied classification - some folk have it from HAs and damaged muscle, others from malfunctioning valves, others from congenital disease, etc.... This is a very good source of medical information on HF in all its variety, and severity. ahajournals.org/doi/full/10...
Yep that is just how I felt. I thought i had months to live. I was recovering so well from the HA. I have over the past four weeks replaced my decking phew it has been warm. I have also barrowed a ton and a half of gravel from from of house to the back.
I love my bike and the gym and i did think i had been given a death sentence. However listening to everyone on here I will deal with the results as and when. I will not give up.
It might mean getting an e-bike but if i can out and about i will
I'm already an old lass hehe I didn't get here without a fight. It will be my 74th birthday next month and I aim to see many more
Good morning, I haven't had the trauma of HF or HA, but I have Angina. We were on a cruise when I became ill with a severe chest pain.The doctor on board diagnosed the angina after over 3 hours of tests.He looked at me and said 'you are very relaxed about it', I replied 'well there is nothing that I can do to change your diagnosis'. Back home my GP went through everything, medication, lifestyle and fitness. I was refered to an Angina help group, and I took my wife. We were both told that while the pain is not nice, the heart is trying to heal itself. We were told how different medication helps and having a healthy lifestyle. Because my wife was with me at those meetings, she was able to pass the information onto our three children. It also took a lot of the worry away for her, she now knows that I can keep the pain under control. My keeping the family informed, has helped them to come to terms with my illness, and cut some of the worry out. Is it 'Better the Devil You Know' or worse by keeping them in the dark?
I do hope that you can get the help required to sort the problem out, and I wish you well for the future.
My daughter was with me when I had all the test after being sent to A & E so she knew everything that was being said. My reaction was very much like yours i was totally chilled.
My reason for the delay in telling her the recent diagnosis is because it shocked the hell out of me. I therefore have decided to wait for all the results and will then have a much more informed understanding myself.
I'm pleased to hear that you are able to manage your illness and all the best for the future
Thank you for your reply always very helpful advice
I am so pleased you posted your story. I am 72 and in the last year have had to drastically cut back my bike rides and can't even ride with a beginner group because of the frequency of breathlessness and severe neck pain. Despite being in A&E last August and an echo showing a leaky heart valve my GP refused to refer me. I am at last having a more thorough echo in 2 weeks and a fast track cardio appointment in 7! I've bought an electric bike but not able to use it much yet. After every bit of exercise - cycling, walking, dancing, gardening - I need a sleep. This waiting period and not knowing is so hard. I live alone, but the only thing my adult kids say is to go private. Reading yours and other's stories has really helped me in thinking I may be able to get back to what I love doing most in life.
I dislike the fact that some authorities believe that when you get to a certain age you should be put to the bottom of the queue or not referred at all. I am 74 next month and all my cycling friends are around 20years younger than me. They often found it difficult to keep up with me. I pride myself on my fitness and love the bike and the gym. I am not giving up and I hope you don't either.
I also live alone and yes the not knowing is hard to come to terms with.
Do not give up though, insist on a second opinion if need be. Insist on being told about the echo results.
As much as i like the challenge of my hybrid and 29er if i need to get an e-bike then i will.
Keep doing what you are doing because we deserve to enjoy life.
I am so sorry that you have had 3 heart attacks and subsequent surgery. It sounds like you have been very healthy up to this point, and led a healthy lifestyle, so all of this has probably been a huge shock to you and your family. Plus, it is even more shocking to go through all of that—-come through okay—-and then learn about possible heart failure. My thoughts and prayers go out to you and your family.
I realize that you want to shield your family from this news. I get that, but my thought is that some members of your family may feel angry, or hurt, that you did not confide in them right away. You want to protect—-but they may feel that they would want to know so that they can offer love, support, and comfort to you along the journey. All people are different and handle this type of news in their own way; however, you can’t undo not sharing with your family right away. I hope that you understand that I am not trying to tell you what to do in this situation. I honestly don’t know; I just wanted you to consider both sides of that coin.
I’m sure that you have received, and will continue to receive, some helpful advice from members of this forum. Best wishes to you for your upcoming echogram and visit to your cardiologist. ❤️🙏
I totally understand where you are coming from and thank you.
I think what i have taken from all these lovely replies so far is that i seriously thought that I was about to die. Those word "heart failure" scared me so much and as i have learned that is not what heart failure actually means.
I need to save my family from the stress that i felt and when i have the results of the echo i will then tell them. I do not keep secrets normally but on this occasion i need answers and the echo will give me those. I feel happy that i will also get to speak to the cardio team who will explain the results to me immediately.
Sorry to hear you’ve been told you have heart failure. I was told I had heart failure 20 years ago I was 42 and it was devastating I didn’t think I would see 43 because I thought it meant death.
At that time my heart function was around 43%, since then it’s gone to 10%, and I actually felt that was it for me, and so did the cardiology team I was under, but with a cocktail of medications it went to 15%, this year I had an echo and it’s now 23%
If I had known what I now know I would of asked what my heart function is and gage it. A normal heart function is around 55% upwards to 70%. When you have the echocardiogram it should tell you what your heart function is. Ask them what a normal heart function is then you can gage it for yourself, but there’s always hope. You can be fitted with a 3 lead pacemaker. I hope you get answers. All the best and let us know how you get on.
Those questions are now on my "to ask" list. I knew nothing of this until you lovely people have answered my post.
Yes I thought i might be dead by the end of the week and was very emotional and upset. However I now feel totally different and am looking forward to living a long life. Yes it may be different from the one I planned last week but I'm still here and I will make the most of it.
I couldn't have possibly had these thoughts on Wednesday when i got the blood results.
That’s tough! I’m sure your family are 100% there for you, there’s a big upside to this, it could have been fatal I guess but you’re here and can still live a great life. Have you been told the likely cause? Good luck, best wishes take care 👍
I wasn't given a likely cause and i really do not understand Why Me. I have a couple of ideas but maybe too controversial to put on here.
My family are amazing and my close friends who i cycle with have also been there for me. I know that when i give them the updated information they will be there for me again
Yes i was told on more than one occasion that i was lucky to still be here. My cardio nurse said that people in the middle of nowhere like i was on my bike usually do not make it. Plus it was a further week before i went to A & E.
I never thought to say that when my mum was pregnant with me she developed eclampsia which damaged her heart. Aged about 23 she was told she had heart failure and should never have a GA and that was that; no treatment at all; just get on with living which she did; through another pregnancy also with eclampsia and more damage, until she was 69. That was 35 years ao and even then she was never given so much as a tablet. She smoked Woodbines and walked her dogs miles every day . The only time it was ever mentioned was when she had to have a hip replacement by epidural.
I can still smell the woodbines and dad's Hamlets. Is it any wonder I started smoking ? I swore I never would. I still love the smell of a big good cigar at Christmas no matter how bad they are.
oh that is so funny, I used to sell my mums woodbines ooops. Yes i totally get the smell of the cigar. My neighbour still smokes one now and again i love the smell of them. A little bit of what fancy can't be that bad
"A little bit of what fancy can't be that bad" . Oh but yes it can. I never managed to stop completely but I did get down to 5 a day. From what I was on, that's huge. But last weekend, 4 days in hospital without one ( and no patches) and with a very erratic heart rate, most probably triggered by nicotine, on the last day I went down to the entrance on my scooter and lit one. Took one puff and almost keeled over; it made me so dizzy. If just one can do that to the blood supply to my brain, that's it- finished.
I was diagnosed with severe heart failure in 2019 after a massive HA where I had to be resuscitated 3 times. Left me with 32%EF which I was told would never increase due to the severity of damage. I was grateful to be alive but was diagnosed with PTSD by a counsellor. Apparently its quite common when a HA is this severe. Anyway 3.5 yrs on and I am fit as I have ever been. I walk 80k briskly a week and do 1 or 2 steady 5k runs . I had an echocardiogram and a full check up with the cardiologist 3 weeks ag and my EF is still 32% but the cardiologist said she was amazed how fit I was . It's difficult to start with but trust me, it gets easier and times moves on. I hope you too can take some positivity as you move forward. Good luck
I have taken much positivity from all the replies i have received her. I have been helped tremendously over the past few days. I believe like many have mentioned the words Heart Failure should be changed.
I very pleased to hear that you are doing so well.
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