Hello all, I'm a 59 years young wife, mother & grandmother.
At the end of August I was admitted to hospital after booking myself in to A&E due to severe breathlessness & oedema.
After being hooked up to a machine, I was told my heart rate was over 180bpm, my blood pressure was low, & that I had HF & AF.
I was in hospital for 11 days, I pestered the staff daily to be discharged after a week before being discharged with 7 prescription meds, I was on no meds prior to this.
I had an echocardiogram whilst in hospital that revealed -
severe tricuspid regurgitation with complete loss of leaflets,
moderate mitral regurgitation but functional.
Severely impaired Left Ventricle
( EF biplane: 23% )
Impaired Right ventricle and dilated in size.
I'm awaiting a rescheduled appointment with cardiologist that will hopefully let me know the results of the MRI scan that I had at Papworth recently.
I'm trying to remain positive but in all honesty I'm not coping very well with the waiting & the uncertainty of it all.
I also live in a rural area with no access to group meetings etc plus I've never been keen on social media sites such as FB.
I guess what I'm trying to say is that I feel very frightened & alone with no idea of what to expect.
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Butterfly65
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I have had severe tricuspid regurg. for many years,no leaflets either so they cannot operate.I am now 86 and ,walk daily,pretty fit and active .i have a busy social life,do my own housework and generally try to forget the heart issues .I was told I have heart failure but it is only a name that encompasses a bucketload of heart issues.I take 4 meds including Apixaban for Afib.
I had asymptomatic mitral valve regurgitation and aortic valve regurgitation for the better part of 20 years. They waited until I started to show left ventricle hypertrophy before operating. At the time they knew that my mitral regurgitation had reached severe, but my aortic regurgitation was only moderate/severe. They recommended mitral valve repair via open heart surgery so they could also check on the aortic valve and replace it if need be.
I had it done 6-1/2 weeks ago. The aortic valve turned out to be in really bad shape, so they replaced it with a mechanical valve. I'm recovering well; even got to start driving again earlier in the week.
Given that you are symptomatic and showing LV & RV impairment, I'd guess they're going to want to replace your tricuspid valve sooner rather than later. If they think your mitral valve is likely to progress to severe regurgitation at some point, then they might want to do both at once and have it all done and dusted. If they only do the tricuspid they might want to do that with a less invasive procedure.
I had had long enough to process it that I didn't *feel* that stressed, but I clearly was. The last 2 weeks before the surgery I became increasingly scatter-brained and it became hard to focus on anything. Even reading the paper was a struggle. I don't think there's any way around it. Just keep courage.
I had a bypass operation and I tried to focus on the positive- if you do have an operation itโs because you will need one . Try to think of it as something thatโs going to give you your life back . Good luck
It is a terrifying thoughts and I completely fell apart when they told me I had to have open heart surgery as I use to stress about everything but I had it done 14 weeks ago and can honestly say it wasnโt nearly as bad as I imagined and even now I canโt believe Iโve actually had it done and life is now getting back to normality.
Try not to worry, easier said than done - I did talking therapy whilst waiting and it did help
( something else I never thought Iโd do)
I absolutely know you will be fine , if I can do it you can , do let us know how you get on x
Myxomatous degenerative valve disease. My sister required open heart surgery when she was 40, so it's almost definitely genetic in our case.
We both have a few traits of Marfan Syndrome, but not enough to actually have it. So probably some related connective-tissue genetic disorder. (I found this out when my kids were young; they decided we were Mini-Marfans. ๐ )
Morning Butterfly, hope youโre having a decent day today. My diagnosis is very different to yours but a lot of the emotions are similar Iโm sure. That sudden feeling of mortality and not knowing what happens next can be overwhelming. The one thing Iโve found is just how many people are going through something similar and how supportive people can be.
Youโre definitely not alone in this and every concern is definitely warranted. Youโre in the hands of the experts now though so trust theyโve got you covered. (Easier said than done I guess!)
Hopefully itโs a good overwhelmed. Thatโs probably a good word to use with most emotions when youโre diagnosed - overwhelming. Nothing quite prepares you but it becomes easier.
I understand your feelings. I am 55 and was diagnosed with HF in June this year. I am on 8 medications and had none before. I have breathing issues and I keep mentioning it to the heart failure nurse. Hopefully you will see a specialist nurse shortly. My consultant was useless but has started to improve. You need to talk to people about how you are feeling. My family keeps forgetting my issues so I have to keep reminding them. Also you can call the British Heart Foundation. They can give you some advice. I called them and it was helpful. One main thing is enjoy your children and grand children. Do everything you want to do. We go out nearly every weekend to things I want to do albeit with restricted walking. My husband keeps booking rugby matches, comedian shows, concert, cinema.... I don't know how long I have here but we are making sure that I have a good time. Take care and somebody told me to keep smiling and laughing. It helps you feel better...
Thanks for taking the time to reply. I too have problems breathing but the meds have helped.
I hate taking drugs of any kind so being told that I needed to take 7 daily was difficult.
How about you?
Unfortunately my only child, my daughter, lives an hour away with her partner & my grandaughter.
We get to see them as often as possible, usually at least once or twice a month but it's not enough.
Luckily we can see one another & talk online but it's not the same.
We can't move closer just yet because my husband still has work to do on bungalow but we plan to move much closer once it's completed.
I have seen the HF nurses twice but they're unable to answer all of my questions at this stage.
The appointment that was made in late September for me to see a Cardiologist this month was cancelled a few weeks ago with no explanation & no further appointment which was quite upsetting because I have so many questions.
The HF nurse I saw on Wednesday said that she's going to find out why another appointment wasn't made.
I'm so sorry to hear about your diagnosis and how you're feeling. I was diagnosed with severe heart failure at the end of last year and spent a month in hospital. It felt like my whole world fell apart. But it really does get easier to accept over time. The term 'heart failure' is horrible, but it's not as bad as it sounds.
Your heart isn't 'failing', it's actually doing an amazing job keeping you going whilst it's not even working at full capacity.
The medication available now is incredible and will hopefully improve the functionality, and if not it should at the least stabilise it for you.
Please try not to worry, you're being seen by the specialists who can help, and you know this is something you have now so you can look after yourself better than you ever did. Eat well, go for daily walks, just enjoy life.
I don't know if this is a helpful thought or not, but it helped me stop catastrophising and put things in to perspective... You can keep worrying that one day your heart will stop, but the reality is, there are so many other ways we could die before that. And it's something I bet you rarely ever thought about before your diagnosis. So why focus so much on this now? If anything, the risk is now lower than it was before because you have medication that's helping you and you'll be under your cardialogists watchful eye.
I completely understand how you're feeling, it's not nice, but it gets better. Take care xx
Thanks for taking the time to reply & for your kind words - much appreciated. ๐I had no idea there were so many different reasons for heart failure.
I'm worrying lots at the moment mainly because I have so many unanswered questions running through my head, but I've been told by many in comments to get in touch with BHF nurses which I will do next week.
I wasn't even aware that there was right & left sided heart failure but I seem to have both.
I've felt unwell for many years but more so since I had my ovaries removed 12 years ago so I'm unsure whether there's more going on.
hello Butterfly Iโm so sorry your going through all this although I cannot relate to your symptoms, but Iโm sure other โheartiesโ on here will be able to give you lots of advice I understand your feelings of worry and waiting to see what happens next that I do understand - there are advice telephone numbers such as the BHF who Iโm sure will give you some valuable advice again our friends on here will Iโm sure give you the relevant contacts - In the meantime just wanted you to know Iโm sending my best wishes Iโm sure everything will be sorted for you soon take care ๐
Whatever your situation it all boils down to this: you've been partially diagnosed with further medical care to be decided; you're alive; even if you need open heart surgery like myself you will be in the hands of professionals; as I was repeatedly told the operation is complex but routine "we do five a day" (this was at the Freeman in Newcastle one of the centres of cardiology excellence. You will have ups and downs post operation but you will eventually feel completely renewed!
feel for you. Two years ago I went for my age 50 check up which had been delayed until I was 54 due to NHS restrictions and was diagnosed with high blood pressure and AF. Further diagnosis 3 months later showed severe mitral valve regurgitation.
I was put on an operating list in February 2023 and had my op in January this year.
The waiting is the worst. You feel anxious, lost and it seems difficult to stay positive. Iโm now 9 months post surgery and on holiday. Went back to work 12 weeks after surgery and full time after 4 months.
It will be ok. They need to change the name. Heart failure sounds terminal and itโs not.
Thanks for taking the time to reply. The waiting to know more is awful & seems to cause us more stress & anxiety unfortunately but your comment is reassuring.
Whilst I was In hospital,
like most, I was sleep deprived, still in shock & on several new meds so although I saw several consultants, unless my husband was there, I couldn't really take in everything I was being told by them.
I was nodding but not really fully understanding, or maybe not wanting to.
You know you've been in hospital too long when you find yourself actually sleeping through the night. ๐คฃ
The information overload never improves (or at least didn't for me). You still find yourself wondering 5 minutes after they leave: what exactly was it that he said?
I hardly slept a wink in hospital, despite having a room to myself during the last week. I couldn't eat much either.
Maybe the bedside consultants need to allow us to record what they tell us so that we can play it back, so eventually sinks in before we leave hospital.
Thanks for replying. It is a terrible shock. All I kept hearing from hospital staff was - you're too young to be going through this. I was by far the youngest on the ward I was on but I'm sure there are many much younger than myself who have HF.
Good morning.... this sounds almost like my own story and the way I found out. Firstly, please try not to go into meltdown over the HF diagnosis. Most of us will agree that it should be a renamed condition. Medications and corrective surgery are fantastic now and are changing constantly to make life better for people who have heart events. It sounds as though you will be needing valve repair or replacement and yes, the thought of OH surgery is scary but it is an operation that is carried out so regularly now with so many of us still here and doing well. You will get great support from the forum and there's are so many of us that can help you through by reassuring you. There is a site...Pumping Marvellous and also BHF for great information. Don't go filling your head with information from Google. If you want to pm me at anytime please feel free to do so but I know everyone here will be very supportive so don't be worried about asking questions. Take care xx
Thankyou for taking the time to reply & apologies for my delayed response.
I appreciate your kind reassuring words but I'm concerned because I have watched videos on YouTube where American cardiologists have called the tricuspid valve the forgotten valve & compare right sided heart failure to a balloon being left out in the sun for a week & how it can affect the liver, kidneys & other organs.
I don't know about you but I've felt very unwell for many, many years so although I was shocked to discover my heart wasn't pumping efficiently, I was also relieved they'd found a cause.
The only time I've felt considerably better during the past 12 years or so, was two years ago when I lost just over two stone over a 10 month period on the ketogenic diet & was able to get back into my size 10 clothes with ease.
My energy levels soared & the eodema seemed controlled but It was a difficult diet to maintain, especially during the winter months.
I'm not obese but I now realise I've carried lots of water weight for years.
During my recent stay in hospital I was given diuretics intravenously & lost a stone & half within 11 days.
I've had puffy ankles & lower legs since being a young child, especially during the summer months but I'm aware from talking to others in hospital that not all heart patients have oedema, not sure why that is but would like to know why.
The eodema I've suffered with has been so bad at times that I've broken several pairs of expensive flipflops which have been the only type of footwear I could wear during the summer for many years.
I also had to have my wedding ring & others stretched considerably.
The thought of open heart surgery terrifies me, I know there are less invasive procedures but until I can speak to a cardiologist I won't know what my options are.
I had my mitral and tricuspid valves repaired. It sounds like you may have had something going on for a few years...that you can't change, so try to now focus on the fact that they know what is wrong and that something can be done. Other less invasive options are available other than open heart surgery but my surgeon told me that the less invasive methods are for people who wouldn't cope with the full surgery. I might be corrected in that but it's what I was told at the time. It is all scary initially and the thought of the surgery petrified me but after 3 cancellations with my health deteriorating I just wanted it over and done with. The staff are all amazing and so too is the aftercare. You really do not know a thing about the operation and you are awake again on what seems like a click of the fingers.....and on the way to recovery. I would be lieing to say it's a breeze....it's major surgery but the recovery is quite surprising and I am sure you will feel much better after. To the heart surgeons, valve ops are almost routine now and are carried out frequently with fantastic results. Try to focus on the fact that yes, you do have a problem but it's very fixable..I suggest you write down any questions you want answering, stay off Google and have faith in the wonderful people whose very safe hands you will be in. As I said before. If you want to PM me please feel free to do so. I hope you get reassurance from replies you get on the forum. Take care xxx
hi โฆ Iโm fairly new here and also had news about my heart recently I wasnโt expecting (significant RWMA in my LV, and I also have LBBB) Iโm waiting to see the cardiologist in three weeks to discuss what this all means. I just wanted to say that; goodness it is scary isnโt it! โฆ I can so empathise with how you are feeling. My BP pressure isnโt good as Iโm stressing so much, so itโs a catch 22! This forum is really supportive, so reach out when you need to, Iโd also recommend ringing the BHF cardiology nurses, I rang yesterday and felt much better afterwards, she was super helpful and very reassuring. Our hearts are super adaptable and with the right support they will keep on beating so hang in there ๐ โฆ sending virtual hugs and lots of positive vibes your way.
Thanks for taking the time to reply to my post. So sorry it has taken me so long to reply but I've had quiet a few comments to respond to & I'm a slow typer at the best of times.
Also sorry but I'm not familiar with all of the abbreviations to do with heart health yet so unsure what your heart problems are.
Thanks for the virtual hugs & positive vibes - I definitely need them. Sending you the same. ๐
I understand the trepidation. I was told I had mild heart failure at age 46. It was quite overwhelming. Mine was from years of uncontrolled AF which is now behaving (following 3 ablations)and my EF has risen from 35-40 to 63.
Yours sounds more significant but there will be treatment options that I hope are being discussed with you. If the waiting feels too much, a private consult with a cardiologist is around 2 to 300 pounds. Not light change but if you do have the means this might feel like an option.
This forum can also be a great resource as can the BHF helpline. I found them very useful when I had medical questions.
Hello & thanks for taking the time to reply, much appreciated. Firstly can I ask you if you were told why you had AF & how long they thought you'd had it for?
How did they detect how long you'd had it for?
I am waiting for the results of an MRI scan & the MRI stress test.
I haven't spoken to a cardiologist since leaving hospital on the 11th of September & I am waiting for an appointment to be rescheduled with cardiologist.
"Firstly can I ask you if you were told why you had AF & how long they thought you'd had it for?"
There really aren't any definite "whys" with AF.
I have other chronic health conditions also, despite living healthily. I've given up on why.
I can only say symptoms started in my late 20s and took over a year to diagnose as I was repeatedly told I was too young to have heart problems. This was 20years ago.
"How did they detect how long you'd had it for?"
They don't investigate how long you've had it. As above I can only say when I first experienced it.
An ablation is a surgical procedure to treat AF. If you Google you'll find plenty of info and/ or check BHF for further details.
Cardioversions offer temporary relief for many. Often used to ascertain if an ablation would be successful as a longer term treatment.
I'd suggest giving bhf a call with some questions ready. Sounds like you'd find that helpful.
My symptoms of AF were/are dizziness, fatigue, breathlessness and chest pain.It's easily identified via ecg. It's essentially a rapid and irregular heart rate. People experience it differently. Mine was very frequent very quickly and moved to persistent (constantly switched on) as opposed to intermittent but some people just get a few events a year. Treatment depends on how much it impacts.
I had 3 ablations in 2022. 1st two were not successful. Last one took 5 months to show benefits.. since then no AF. So obviously greatly improved.
I have similar symptoms but had never experienced dizziness until this year. A week or so before I took myself to A & E I was feeling dizzy & seeing tiny shards of silver flashing before me.
I had an unexpected heart attack whilst on holiday 7 weeks ago, had an emergency stent fitted. Since the episode I have been anxious as the first available cardiologist appointment is Aug 2025. Despite my procedure being relatively minor compared to others on this forum, anxiety is very common to us all.
Although its difficult at times , focus on the positive aspects of your life and if you need reassurance , reach out, you will find support here.
Thanks so much for taking the time to reply David & for your advice. It really concerns me that you & so many others are having to wait such a long time to see a cardiologist & also for important operations.
This sounds so hard. My Mum used to say โLife can change on a sixpenceโ. My situation is different but I found talking to one of the BHF nurses helpful.
It certainly sounds like you are having a bad time of it. There is no escaping that fact, but this isn't the end. I'm going to share my story to be honest about the lows and highs. I'm 54 now and doing quite well. Not bad bearing in mind I was given 18 months at one time and was seeing the heart failure nurse weekly.
I had my heart attack at 46. It was unexpected. I expected to be in hospital for a day as everyone around me was being discharged in a day or so. I spent over a week in hospital as I "did such a good job of f**king my heart" My EF was 37%.
I was able to pull myself together, thinking it was lucky I was alive and went home and tried to pick things up. I was good for a while, but my heart started to decline and by May (2 months later), it was clear I was not good. It turned out that the 3 stents I had received were being rejected by my body. I was told that without open heart surgery, I was looking at 18 months. I cried, my wife cried. They also told us that the surgery would be complex and might not work due to the placement of the stents that initially saved my life. TBH I went home and stopped taking my meds as I couldn't see a good ending to this. Don't do this!!
I called the BHF support line. They spoke to me, helped me see a tiny chink of light at the end of the tunnel. They also recommended I spoke to my doctor and got some chemical help. I think I only took the anti-depressant for 4 days, but it enabled me to see that I had a choice of nothing, or a chance. I grasped the "chance", but I could not shake the fact that I had been given odds of the surgery working. The odds were great if I was gambling on a card table, but I could only focus on the negative, there was a chance I could die. I stopped being able to plan or consider anything beyond my surgery date, which got moved out twice by a few weeks each time. This, I'm told, is one of the typical reactions to such news. I used BHF the helpline often.
I wrote letters to loved ones, shared my e-mail and other system account passwords and generally "tidied up" for the coming end. Keeping busy on these things gave me a morbid sense of completion that actually helped me.
Anyway, as you can guess, I survived. While I felt good physically, mentally, I still was befuddled. I couldn't think about events weeks, then months away. I would guess it took a good year to get my perspective back. But it did come back.
I can't run a marathon now, even with training, but it wasn't on my agenda before, so no real loss. I can live my life, as I want, on my terms, with a pot of pills every day and some breathless moments and the need to stop and take a break more often than I used to. In fact, I love my life now. I adore my children more than ever, even though they have been through the teenage years. I'm aware I'm mortal, but I always was, just ignorant of the fact.
I hope that all the helpful responses here have reassured you that some social networks are good places
I do not have relevant experience to share, but I do know how scary it is to be in your situation, so I hope you find the help you need here and from some of the other resources mentioned, like the BHF site and helpline and Pumping Marvellous pumpingmarvellous.org/
I've used health unlocked for several years, even prior to 2016, even though that's when it states I joined on my profile I know I joined a few years prior to that.
In fact I've just been looking through some of my old posts & getting a bit upset.
I've felt very unwell for many years but was being told by my GP that there was nothing wrong & because of my symptoms;
Fatigue
Breathlessness
Unable to exercise
Edema in feet, ankles, legs, stomach around eyes & hands plus
weight gain/ fluctuation,
Cold hands & feet even during the summer months, feet that turn purple when cold, dry hair & hair fall.
I was told it was all due to the menopause & lack of exercise.
I've always felt much worse in hot & humid weather
My now adult daughter was diagnosed hypothyroid when she was just 14 years of age, I assumed I had the same so that's where I used to post.
I've suffered with oedema most of my life & I'm not overweight,
BMI is just slightly over what it should be.
During my 11 days in hospital I lost a stone & a half in water weight when I was being given diuretics intravenously.
I still don't understand why some of us with heart problems suffer with oedema whilst others don't.
Thanks for taking the time to reply. I agree worrying is natural but it seems some of us might do much more worrying than others.
My mother-in-law is 89,
she's never been a worrier & has never suffered with major health issues.
I've often said that she'll outlive me.
She doesn't seem to suffer from guilt either so any bad decisions she may have made throughout her life that have negatively affected others don't play on her mind.
Makes me wonder how much of a part worrying & chronic stress play in heart health.
Your feelings are completely normal, given everything you're going through. It takes time to regain your confidence and come to terms with your new situation. There's a period of grief where you have to say goodbye to parts of your previous self, your old way of life, and possibly even some people. Loss is a significant theme here, but remember that through this process, you'll also be building a new life.
I highly recommend speaking to a therapist. It's something I did and found incredibly helpful. Your GP should be able to refer you. I think you are also able to refer yourself via iCope. Please, be kind to yourself and take it one step at a time.
Thanks for taking the time to reply. To be honest with you E-Jay,
I said goodbye to my old self around 11 years ago or more when I first started to feel unwell.
It was roughly at that time that I also closed my social media accounts, cut ties & moved away from my hometown.
I'd become increasingly unwell but was being told by GP that blood test revealed there was nothing wrong with me.
At no time was my heart health ever mentioned or checked, despite suffering with oedema & fatigue & despite my mother passing prematurely from cardiac arrest.
I felt compelled to message you and I am so glad you have found this forum Iโm realatively new here also and I have found many wonderful people, advice and support and I know you will feel the same .
I too live a little isolated with no family or friends nearby in Lancashire so this forum has been a life line.
I totally understand that the diagnosis is terrifying and when you hear โheart failureโ it is all you can think about the term itself sounds so dreadful, the best advice I can give you is the forget heart failure and think heart isnโt pumping well enough but can and will improve
My story is very similar . I was admitted to Blackpool A&E with the same symptoms but with chest pain . The team were amazing and since May 31st I have had all the usual tests and more recently the MRI
Although the NHS has been so slow it really has been excellent care and I hope this is your experience so far (but hopefully quicker)
My EF was 27 and Iโm 43 years old I lost my dad at my age from cardiac arrest so the whole thing has been very very scary.
But I write to you (as Iโm a couple of months ahead of you in treatment and pathway) to tell you that there is hope, you will feel better and your symptoms will improve . In May I was literally passing out , severely dizzy and exhausted and could barely hold a conversation with breathlessness.
Iโve know been on medications , ramipril, bisoprolol, daplagafloxin, eplerenone for 4/5months . And symptoms have massively improved. I had my cardiac MRI last month and itโs shown my EF has gone from 27 to 39 thatโs over a 50% improvement and my symptoms are manageable
Iโm meeting my cardiologist 12th November to discuss the results and next steps .
So there is hope
The MRI is the gold standard of diagnosis and gives a much clearer insight into what treatment is needed but the meds have helped 10x. My diabetes has also improved massively for the first time in years
The first period is harsh and dark and can feel really down but things do get better.
I wanted to reach out to say you are not on your own, donโt face it alone and should you want to talk on here or even by phone Iโm hear from you.
Take care of yourself but keep going one day at a time.
Thank you for taking the time to reply Michael, much appreciated. I also lost my Mother to cardiac arrest in 1999 when she was just 61 years of age, she'd also suffered a pulmonary oedema & toxemia.
My mums death was sudden & unexpected.
It was one of the first things I mentioned to all staff I encounted in A & E on the day I was admitted.
I moved away from my hometown 8 years ago in the hope that the slower pace & quiet life of rural living would be of benefit to my health but it comes with other problems.
I'm pleased you are feeling better, it's encouraging to hear that. Reading these replies has definitely given me hope.
I underwent triple bypass in June, and like you and many of us, I was terrified upon hearing that I needed heart surgery. I had 3 months to wait for the operation, I told myself I was going live everyday like it was my last, and stop worrying, the worry are only thoughts, and are not physical, and cannot hurt me, I'm am ok now, just keep your thoughts on now. I promise you it is not as bad as you imagine, and Papworth are fantastic, we are all here to support you, you are alone.
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Iโm new here and have a question about a low heart rate episode I experienced recently.
Recently Diagnosed with microvascular angina
Impaired Right Ventricular function โ experiences please
Heart echo
From severe HF to mild in 10 months
