British Heart Foundation

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I'm 59 and new to all this. I was well until August when a routine appointment for my depression medication turned up a heart murmur. Since then I've been on a roller coaster. I have to have AVR and am waiting for the appointment with my surgeon on 29th January. I have deteriorated a lot in the last 3 months and get very breathless - I thought my breathlessness was just lack of fitness but it is now obvious that it has been more serious!

I am terrified about the op but I guess that is normal! I also have no idea how long I will have to wait for it and I now just want it over and done with - I feel like I'm living in limbo and can't make any plans.

It's reassuring to read all your posts and to see you being so positive about it all.

Sorry to waffle on

Mo

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welcome to the forum Mo, hopefully your op happens soon and you begin to recover

Mark

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Welcome, Mo. My heart condition was also picked up at an appointment for something entirely different. It is such a shock, isn't it? Hope you get a date for your operation soon, waiting is often the worst part. All the best x

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Hi Mo. I was diagnised with a heart murmur when I was 16 but didn't need an AVR until I was 52. I have just had a second AVR as my first tissue valve had developed severe regurgitation, this time I've had a mechanical valve due to the added complication of having my spleen removed last year.

Hopefully your surgeon should be able to give you some idea of when your op is likely to be. Mine should have been about 6 weeks later but ended up being another month on due to cancellations. I suggest you make a note of any questions you want to ask otherwise you may forget, however if you do think of something afterwards use ring them, they are usually really helpful.

I can understand you being scared about the op, but I'm sure you've already read a lot of our comments about our operations and recovery etc and hope it helps.

If you have any questions just ask away, there are many of us who've been through the same or similar ops.

Wendy xx

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It's interesting to hear how many of us have a murmur diagnosed after going to GP for something else, I was the same. The cardio seems to think I have had mine for several decades and it gradually got worse over the years. My brother had a triple heart by pass 10 years ago aged 60 and they found his mitral leak then, and repaired it at the same time as the bypass, He's still OK 10 years on. I was diagnosed 4 months ago with mitral heart leak, I've had some tests and still waiting for an angiogram before they decide what they will do, as laura-dropstich said "it is the waiting that's the worse."

Lets hope we get some news in the new year.

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Hi Mo, welcome to community. You've definitely come to the right place. If you need any further help, please do get in touch with our cardiac nurses at the BHF: bhf.org.uk/heart-health/how...

Really hope this helps Mo.

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hi mo i found out last december threw a murmer i had my avr 4 weeks ago due 2 my age i went 4 the mechanical 1 im now ticking away nicely lol you have joined a great bunch of ppl who will help you on anything you want 2 know goodluck and if ur out of breath keep on 2 them.

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Hi Mo,

Can so identify you, I was being treated for continuous chest infections and a nurse practitioner went to fetch the Doctor and within a week I was seeing a Cardiologist.

It is a very scary place to be, and our families can be understanding and support us, but they aren’t like the people on this site. Someone always answers you, no matter what time of day or night, and even if their diagnosis is different it such a comfort.

I am sure all will go well for you, aren’t we the lucky ones to have been diagnosed and under investigation, must be thousands out there unaware of heart conditions.

Best wishes

Lizziepea

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I know that I'm really lucky that they found it - sometimes though I don't feel very lucky! Sometimes I feel quite angry that it is happening to me. Last year I lost both my parents and my daughter got married and left home. Now there was supposed to be time for me and this wasn't what I had anticipated doing!

Sorry - does that sound really negative?

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It does sound negative, but understandably so. I think feelings of anger and "why me" would be something all of us on here have experienced. (If anyone tried to tell me I was lucky in the beginning, as they so often did, I wanted to rip their faces off! Ha!) I felt that way for a long time, but genuinely do feel lucky now, though I still have my spells of being right royally p***ed off!

I was diagnosed while pregnant with my first (now only, thanks to my heart) child and she was delivered prematurely a day and a half later, so I can totally relate to your feelings of anticipating a new phase in your life, only to have the rug pulled out from under you. It's a huge mental adjustment to make.

It's hard to see beyond the panic/uncertainty/disappointment of diagnosis at first, but things really will get better and easier over time and you will be well looked after and have lots of time to enjoy still, hopefully feeling well and full of energy while you do. You're in one of the hardest phases right now and things can only get better from now on. Lots of love x

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Thanks for your kind words

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Hi mo and welcome, I am also 59 and got diagnosed with heart failure this year, I went to my GP with what I thought was bad sinusitis! Never got home for two weeks as the doc phoned an ambulance straight away, I still get teased for my medical 😷 knowledge lol, I am going in to get an icd fitted on Friday and I know it's nothing compared to a lot of my heart friends on this forum but I am still scared and it's so near Xmas 😭 keep us posted how you are feeling, sometimes it's great just to write it down and get it off your chest we are all here to listen and offer support any way we can, take care char xx

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hello moken please try not to get to stressed about the op that you need to have i can assure you that you will be in good hands i had my treble heart bypass in 2007 aged 68 so that was 10 years ago last october and the treatment i received was second to none the worst part about it was the time i had to wait to have it i was in the hospital a little under three months every day for me is now a bonus and i can't wait to get out of bed to start my day so be positive my friend and i assure you that you will be fine i will wish you all the very best you'll be great

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Hi Mo

I always knew I had 'the murmur' which was diagnosed as an 'innocent flow murmur' when I was 5. Due to this I never worried about it until my Gp insisted on an echocardiogram around 4 years ago. I must admit I thought it would be a waste of time and NHS funds. When I got the frightening outcome that it was a bicuspid aortic valve which was already badly stenosed and that I would need a replacement in due course I did panic a bit. However, my cardiologist assured me I'd get a few more years out of the valve so I continued my life as normal interspersed with six monthly echocardiograms. The time came in September when I had an angiogram and then he said it was time for the surgery. It's been a bit of a rollercoaster and I totally understand your fears. I've now been 'done' and feeling positive about my recovery and the future.

Plenty of people on here have been a font of knowledge and support and you are in the right place for all the info you need.

wishing you all the very best.

Claire x

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I’ve just had a valve replacement in August and still recovering. Still on pain meds and getting unusual tiredness.

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Hi Mo I completely understand how you are feeling, although iv had pain & breathlessness for years my bicuspid valve only recently got diagnosed so it was a complete shock to be told I needed open heart surgery! But since meeting my surgeon last week I feel so much better about everything & all my questions have been answered. Because of my age (53) iv been put on the urgent list so I can get my life back and op will be feb/March. As you are still young the same should happen for you so try not to worry too much enjoy Christmas, see your surgeon and I'm sure you will feel much better about things. This group is amazing helped me so much x

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Hi Mo, back in June I too was getting breathless, it started when I was out walking, then just going up the stairs, doing simple housework tasks like changing the bed or hoovering. I also but it down to being unfit, then in July I passed out while shopping, put that down to the heat and dehydration, then 2 weeks later I passed out big time fortunately I was in a hospital car park after taking my mom for her check up, the nurses were just about to start CPR when I took a big gasp and came back. A heart murmur was found, the loudest the Doctor had ever heard. I was kept in hospital and not aloud home, I had chronic Stenosis and needed AVR. So all this came as a massive shock, it was a birth defect I knew nothing about and 4days before my 57th it announced its self. I was in my local hospital for 2wks and had all the prep work done then I was transferred to Southampton. Got there Wednesday evening and went down the next day. It’s is scary and overwhelming, but take it from someone who’s been there it’s not half as bad as you imagine. AVR nowadays are routine operation, the technology is so advanced it amazed me. I had a biological value, my recovery was amazing, no real pain just discomfort. I was discharged on day 5, the 1st week at home took some adjusting as I had become a little institutionalised from being in hospital for 3wks, I found it hard to sleep, my GP gave me some sleeping tablets which were a godsend and I had the best sleeps ever and this aids your recovery, I only took them for 9evenings and my sleep pattern returned. On day 3 I went for a 15min walk, by the 2nd week you feel a lot more settled, and it just keeps improving. I see from your post you have depression, please be aware that depression is the one thing most of us face after the operation, some people only have it for the 1st month or so, others longer, I am experiencing this black cloud that I can’t shake off, I am now getting the odd day when I start to feel like my old self, but I am seeking help. Maybe you should mention this to your GP or consultant before the op.

I never felt angry or “why me” just very fortunate it had been found.

If they had any concerns you would of been kept in hospital like me, I know the waiting is hard, and your imagination will be in overdrive. I resigned myself to what was going to happen, and that the consequences weren’t worth thinking about, so I took a deep breath and you will be amazed just how brave you can be. So I am in week 21 and have been back at work since Nov 7th. If and when you want any questions answered on our experience we are always here. Now try and relax, enjoy Xmas, and think this time next year you will be a new woman with so much too look forward too. Take care Kaz 💕❤️💖

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Thanks Kaz. That’s really reassuring. Everyone is so supportive on here - I am blown away by it!

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All I can add is that my experience is much the same. I'm 4 weeks post op now and recovering well. I'm walking a mile and a half each day, but still need lots of rest. It's not all doom and gloom. It's entirely fixable and now you are in the system try to relax. Have a wonderful Christmas and best wishes for 2018. Xxx

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Hi Mo, I only found out I had a heart murmur when I went into hospital last June for an operation on my hand. I was told I have probably had it all my life - why it took till I was 66 to find it I have no idea! I have had various tests and been told I need a valve repair. I am waiting for an appointment with the cardiac surgeon. Luckily I don't have any real symptoms - just slight breathlessness which I had put down to being old, unfit and overweight.

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It’s amazing the things we put down to age and weight - I’m hoping to feel like a new woman afterwards!

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Me too!

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