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Heart murmur

(13 Posts)
Sallywally1 Tue 07-Mar-23 20:33:49

Went to the GP today. I have high blood pressure and am on medication. I have recently been having dizzy episodes on getting g up suddenly and on a couple of occasions nearly passed out. On home testing my BP was low, but now it is quite high. My GP listened and found a heart murmur and mentioned a leaky valve. I was shocked and was not expecting this.. I am being referred for a scan.I have been down this road with my son who had a valve replacement aged 18 and then another last year, so I am fairly well informed.

But I am scared; I feel that I am carrying a time bomb around with me. I went through hell worrying about my lovely son who is now on warfarin. Worried about what the future holds. I want to see my grandaughter grow up.I do everything I can to stay healthy, eat right, have cut right back on alcohol, though I recognise I need to exercise more. I have lost four stone in the past year.

Just needed to vent. I don’t expect anyone to have any answers. I just feel a bit alone. My two daughters, one of whom is completely estranged, do not care. My son does, but is busy, though I see him a lot. Sorry, I know other people have much worse problems!

Calendargirl Tue 07-Mar-23 20:39:40

I can imagine how worried you must feel.

No advice I’m afraid, but I think it’s partly the shock of finding out you’re not as fit as you thought you were.

I think in a day or so when you’ve got used to the news, and found out more about it, you will feel more reassured and not so worried.

Wishing you all the best.

Doodle Tue 07-Mar-23 20:41:22

Sally it’s frightening isn’t it when we realise how vulnerable we are. My DH is undergoing tests for a heart problem too.
You already know all about the heart surgery so comfort yourself with knowing things can be done to help, Also you have acted promptly which is good.
I hope you don’t spend your night worrying and I will try and do the same. I’m sure there are GNnetters who’ve been through similar and Hope they’ll be along with good advice and support soon .

crazyH Tue 07-Mar-23 20:45:14

Don’t apologise Sallywally- this is where I come when I want to offload my problems, sone of which are small and silly, compared to yours. I’m not medically qualified and I don’t know much heart murmurs. However, I have heard about successful heart valve replacements. One of my best friends has had valve replacements and even open heart surgery years ago. She is doing well. Someone, with more knowledge will come along soon, and give you the advice and reassurance you need. But, I wish you all the best flowers

Oldbat1 Tue 07-Mar-23 20:56:52

Try not to worry too much until you have a definitive diagnosis. Both my daughters had murmurs at birth. One had open heart surgery aged 11 for one leaky valve and a series of holes which required “patching”. She was in theatre for 8hours. She went on to have 3 children 2 by caesarean. The open heart surgery was 30years ago. Best wishes heading your way.

Whiff Wed 08-Mar-23 06:31:01

Sallywally it is scary when the doctor tells you bad new about your heart. After BT in January 2020 my GP told me I had heart failure. My daughter was with me and our hearts sank. Saw a cardiologist who said they really have to call it something else as people think they are dieing . Just means your heart isn't working fully.

Until you see a cardiologist you won't know for such what's wrong while GPs are brilliant well mine is they are not specialists.

I will over run my tail to tell you what happened at my GP in 2020 . He wanted to see me and listened to my heart but didn't like the sound of it I felt fine. He sprayed something under my tongue which did nothing. Called an ambulance and sat me by one of the sectaries with the defidulator by me. I just text my daughter and talked to the sectary . When the ambulance arrive my ECG and BT was fine but had to take me to the hospital. After waiting hours sent home fine.

Back to it saw cardiologist in end February 2020 he asked if I had an echocardiogram. My old GP had diagnosis me with LVH via in house ECG. Cardiologist couldn't understand why I was given that diagnosis without seeing a cardiologist. Any way had echo and he was surprised it showed something. Covid hit and my bubble echocardiogram was cancelled. But did have it in late May. Heard the words we can see the bubbles just not where we expected they did the test 3 times. I have a hole . But as it wasn't causing me chest pain even though I could hear missing heart beats ( had jaundice in 2017 left me hearing my heart beat in my left ear very annoying. ) . Didn't see cardiologist rest of the year because of Covid.

2021 from Spring back and forth to A &E with heart going crackers but once on ECG everything fine. Until finally woke one Saturday morning heart crackers again my daughter me to the hospital before 7am straight on ECG was in AF told not to move. And put onto a resuscitation ward. Heart monitor all day ,doctor read all my notes talked to me and phoned my daughter for a chat. He was going to refer me to AF clinic and urgent referral to cardiologist. Had appointments on the Sunday for AF clinic on the Thursday and cardiologist in 2 weeks. AF clinic is nurse run but consultant there in case they need to be consulted. Put on heart tablet and blood thinners. Turns out I have paroxysmal atrial fibrillation. Had to go to AF clinic once a week for month ,twice a month for a month then once a month for 2 months if ok discharged to GPs care. Second visit changed my heart tablet as consultant realised it could interfere with tablet I was taking for nerve pain. I take Flecainide 50mg twice a day and Apixaban 5mg twice a day.

Saw the cardiologist and arranged for a MRI on my heart which I had in the November. Turns out the hole isn't in the connections between the chambers of my heart and have strong heart function. Before you are born there is a flap between your heart and lungs mine didn't close like it should have.

Had several ECG tapes showed I miss heart beats but also have extra ones .

Saw my cardiologist recently even though I can get out of breath is I over do it but because I don't have any chest pain and doing well on the heart medication happy just to be looked after my GP.

I know you have experience with with your son having a valve replacement and he is on warfarin . You mentioned you are estranged from your daughter. I am with my son he decided to give me the boot as his mom even though he knew I was waiting for the bubble echo so he doesn't know about my PAF.

My daughter has told me at the time of my PAF diagnosis that I had to live 2O+ years to see my 2 grandson's with her grow up. I have 3 with my son hope one day they may look me up.

I know how hard it is not to worry. But until you see the cardiologist and have tests run worrying will only make you feel worse. You may say what does she know. I have had pain and problems with my legs and falls all my life. Things got very bad in 1988 my daughter was 4 son 6 months old. Our life changed over night I was 29. Very long tale cut short finally last year aged 64 found out what has been wrong with me my whole life I was born with a rare Neurological condition called hereditary Hyperekplexia gene mutation SLC6A5 type 3. Had my blood sent for genetic testing in January 2020 but my neurologist only got the results end of March last year. But he out me on Clonazepam in March 2020 and after 32 years of limb jerks and 4 months of full blown seizures. My limbs became still within 2 weeks and remain so. I was like a demented puppet. Still have all the problems associated with HPX.

Life has taught me no point in worrying about anything until you know you have something to worry about. My darling husband died 19 years ago aged 47 from cancer. I have been ill my whole life and yet my fit healthy husband died.

So please Sally tried not to worry as you will only make yourself worse. Hopefully you see a cardiologist very soon. And vent away we can talk about things that worry us on GN and know we are not alone.

Ashcombe Wed 08-Mar-23 07:08:45

Three years ago, after experiencing chest pain, I was diagnosed with a leaky mitral valve by a cardiologist at our local hospital in Torbay. Since then, I’ve had annual echograms and a scan which confirmed the valve problem.

Last year, my cardiologist referred me to a colleague of his at a bigger hospital in Plymouth and it was decided I should have open heart surgery to repair the valve. This took place on Hallowe’en so I’m now over four months into recovery and everyone says I’m looking well. I spent five days in hospital.

It is major surgery and I needed full time care in the weeks that followed. No lifting allowed so I couldn’t even use the kettle! My DH, whose home is in France, stayed with me and was a tower of strength. I didn’t suffer any real pain and within weeks weaned myself off the recommended paracetamol.

I was driving after six weeks and we went by car to France in mid January. Regular exercise, especially walking, is recommended to restore fitness levels but that isn’t always easy to achieve in Winter! It is a joy to mount stairs without breathlessness. Last week I managed a solo train trip to Crewe, although my chest muscles were a little cranky afterwards from lifting my case on and off the train.

Since January I’ve been able to attend my Move It or Lose It class and participate fully, including with gentle dance routines. The only evidence of my surgery is the scar from my throat to just below my bust but, at 72 years of age, I can live with that!

There was good support available online and by phone by a team of cardiac nurses. In the early days, I was on a lot of medication and found it helpful to record in writing what I’d had and when. Now, I just take my usual BP tablets plus a soluble aspirin.

Please PM me if you have any questions, Sallywally1. I wish you well with your treatment.

cornergran Wed 08-Mar-23 07:54:38

I do understand sallywally. Mr C had lost a lot of weight in a very short period of time three years ago. No reason could be found and in passing a doctor asked how long the heart murmur had been there. What heart murmur was the response. An urgent echocardiogram followed plus BP tape and ECG. We were both shocked as Mr C seemed completely well. This was all during the first lockdown, although I wasn’t allowed to be with him for procedures or face to face appointments there were telephone consultations which I could be part of.

Three years later Mr C is on the surgery list at a centre of excellence in a city some miles from home. Although it brings logistical challenges which worry me the care is first class. Two day ward procedures confirm major deterioration of the valve, other than increased tiredness and some breathlessness on exertion Mr C feels well.

We were both shocked initially, Mr C has always been physically well, the GP surgery uncharted territory for him. He’s currently offended at being advised to take a daily statin and aspirin. Our daughter in law, as your son, has had a valve replacement, we saw her recover and have every belief Mr C will be the same.

There have been four consultant cardiologist appointments this year which have brought it sharply into focus. Next stop a surgeon. To be truthful we’d like surgery to happen sooner rather than later, Mr C is 80, however there are many people in his position. The hospital takes referrals from a huge area so we wait.

Does it worry us? Less than it did on diagnosis, the initial shock has settled, I guess we’re both used to the knowledge now. Day to day nothing has changed, we are out and about, see family, have a holiday booked with friends and another with family. Give yourself time for this to settle, sallywally, it will feel better. I well understand the initial shock which does pass. It’s helped us to realise although heart valve repair and replacement is huge to the individual it’s very routine to the surgeons.

foxie48 Wed 08-Mar-23 09:43:16

I've got a heart murmur, I've had one for a very long time and it's always been considered of little clinical significance. I had an echocardiogram a couple of years ago and a mitral valve was leaky but didn't require replacement. I think heart murmurs are very common in older people and frequently don't require treatment, so I'd try not to worry (difficult, I know). However, if you do need treatment heart valve repair and replacement are quite common place these days and people make a good recovery but hopefully you won't need anything done. good luck.

BigBertha1 Wed 08-Mar-23 09:58:35

sallywally1 you are not alone. I have had my heart murmur for years and years with no problems except occasional palpitations. I had an ECHO a few years ago and yes its an insufficient Mitral valve but I'm told it should present any problems and it hasn't. I have also had high blood pressure since pregnancy in my twenties but its well controlled on medication. I am 70. I wont say don't worry because you will but try to put it to the back of your mind if you can and know that you are not alone.

Visgir1 Wed 08-Mar-23 11:54:23

I was an Echocardiographer (still working in NHS in Cardiology but not Echo anymore).
Murmurs are very common (I have had one since birth) it could be caused by so many things.
High BP, stress (witnessed white coat syndrome induce a Murmur once) or the valve needing to be watched.
Lot depends on which valve is the problem.
Most people have a bit of Tricuspid regurgitation, that's never going to be a problem, other valves depending on severity can be fixed without replacement. They will be carefully assessed.

We all get a bit leakey over the years.
Please try not to over worry, it hopefully won't be too bad as it has been picked up now.

Ask lots of questions when you see the Cardiologist, they are the experts.
Best of luck you will be fine.

Sallywally1 Fri 10-Mar-23 18:16:46

Thank you all for your replies and for sharing your experiences, it does make me feel less alone. The situation with my son was so very traumatic for us I think it made it all more of a shock. I have a date to see a cardiologist in April, so will try not to dwell too much!

Thank you all, it means a lot. X

M0nica Sat 11-Mar-23 13:10:42

For 25% of us the two parts of the heart that are meant to seal up before birth do not do so completely and for the vast majority of us that will never cause us any problem.

Following some medical investigations a month or so ago I was told that I have a slight heart murmur and sent for a bubble something or another to check the problem.

It seems I am on of the 25% and although my hole causes a murmur, it is actually so small that if it was even fractionally smaller they would not have been able to measure it.

So while hearing that you have a heart murmur may be a bit of a shock and, for some, it will indicate a serious problem, for most of us it is something quite ordinary thta is never likely to ever cause us any problems what so ever.