hello I joined this group a month ago, but have only just come back on as I think my diagnosis was so hard to take in. I have been diagnosed with a prolapsed mitral valve, with thickening of the valve too.
up until a few months ago I was a regular runner, but started getting very breathless, tired and episodes of “ giddiness “ I thought I was just tired, and getting old! ( I’m 60) I was totally shocked to receive this news , I’m finding it hard to process. I haven’t seen a cardiologist yet. What happens now?
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Plum44
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Hello
It does take some processing doesn't it and quite normal
When you get the appointment they will go through the options available they might suggest a new valve but now a days these are routine ops to them but whatever they suggest it will make life better so just keep focusing on that thought
I hope you get an appointment come through soon and let us know when you do and how it goes x
Thank you BeKind28 I think it’s the waiting and wondering that’s the worst 😬 I am trying to focus on all the positives, but I am now hyper aware of every twinge ( that I probably would have taken no notice of previously 🙄) I will certainly let you know what the outcome of the cardiology appointment is.
What you are feeling is natural for so many of us when we are told something is wrong but if they thought you were in any danger they would not have sent you home to wait for an appointment so when you get these thoughts tell yourself that
I really do hope that appointment comes soon as I know how it feels but use the Community to help you get through this it is what helped me and I am sure will help you to x
That is very true! I will certainly now come to this community more. As I said in my first message, I did join up about a month ago, but at first I found it all too much to take in, 😬 i wanted to know, but at the same time, really didn’t.
I'm assuming that you may have been given some information about your mitral valve/thickening from a sonographer who did an echo if you have not yet discussed your situation with a cardiologist?
When I had my echo, the sonographer told me she'd found a mitral valve issue (leaky) but would not give me more detail other than to assure me that cardiologists can fix any problem with a mitral valve these days.
My advice based on my experience is to try not to worry. I think your next step will be like mine, an appointment with a cardiologist. They will explain what's happening to your heart, why it's happening and propose next steps to manage your condition, which might or might not involve intervention i.e., surgery.
At this stage you don't know what's what, so don't try and predict anything before that consultation. Just take it easy, look after yourself (without strenuous exercise!) and think positive.
If you have any new symptoms or become worried about something, don't hesitate to call a specialist nurse at the cardiology clinic to talk things through. I've found specialist nurses to be excellent sources of advice and reassurance and they would much rather you call them than sit at home worrying.
Thank you so much for your reply. Yes it was the person doing the cardio gram that told me. I am waiting to now have my cardiology appointment, I am hoping it’s not too long, but I imagine it’s a very busy department, plus the rising Covid cases are going to impact staffing etc, so I’m not expecting it any time soon. I had my cardio gram in mid September.
I had no idea I could call and speak to a specialist nurse, and will certainly do that if I get worried…….. I am worried!! And very anxious, and since the diagnosis I have become more aware of periods of breathlessness and “ twinges” in the chest area of the heart , but I think it’s because I’m focusing too much on it now!
Thank you so much this has certainly reassured me 😊
This is good supportive advice. It’s always disturbing when you haven’t talked with a cardiologist about test findings. As far as I know the person administering the test isn’t qualified nor should they comment on what they see. I was assured after a recent TEE to look more closely at my Mitral valve function that if there was anything urgent or serious I would be contacted right away. I see the cardiologist in a month. It is hard though not to let your mind run wild to worse case scenario. I hope you are able to a cardiologist soon.
It is hard not to get anxious about it all I have to admit! But reading all the lovely supportive, and informative replies on this forum, I certainly feel mentally stronger . I hope that my appointment comes sooner rather than later.
Best wishes to you too when you go for your appointment.
I really relate with the wanting to know more, and not ready to hear more.
Though my diagnosis...not the same as yours... is longstanding I've had a lot of medical intervention this year following general deterioration and so much more to take on. Been doing pretty well in myself lately but having had 3 medical appts already this week and another tomorrow, I'm back feeling overwhelmed!! It comes in waves.
Hope it can settle for you soon. Its all pretty normal. Try to roll with it and not add another layer by being hard on yourself for your responses. Ask questions and give yourself time and space to absorb what you learn.
and all best wishes to you. Its an up and downy kinda ride but hopefully you'll find a rhythm that works for you. Give yourself time. Go easy on yourself
I found out 6 months ago I had severe mitral valve regurgitation and prolapse. My valve isn’t thickening it’s floppy and not closing properly. The complete shock I felt back then has still not left me. I have good days and some not good days. Mentally I feel exhausted by the thoughts I have every day about the whole situation. I am waiting on my surgery date. And everyone I’ve interacted with on this platform assures me this waiting period is the worst bit. So hang on in there, you’ve got a bit of time still to find out and explore what’s happening with your valve, but again it’s reassuring to know these valve issues are fixable! Stay strong and take care, you can and will get through this. ❤️
When I had my cardio scan, they said I had “ regurgitation, thickening, he also mentioned stenosis and leaflets??? By this stage I was quite shocked and to be honest I didn’t take it all in. I honestly thought it would be a case of “ nothing to worry about”
I used to do a lot of running, I walk everywhere, but I started to really get breathless, and remember one day walking into town and thinking “ I can’t walk another step I just want to sit down on the pavement”
Like you say at least these days these things are very fixable, so fingers crossed that’s what they’ll do 😊
I hope you don’t have to wait too much longer for your op, please let me know how it all goes.
Wishing you all the very best and thank you for your reply
Thanks for your reply. I will keep you posted on my surgery, the waiting for the date has been and continues to be one huge life lesson in patience! Do keep us all up to date on your own journey too. This is a great place for good advice and positive support. Just knowing there are others out there who have got through it and came out the other side and got their lives back gives the ones still waiting so much hope and encouragement.
Laguna23 patience is definitely not my forte 😬🤦🏻♀️😁 but I shall endeavour to become more chilled ( that made me laugh… if you knew me well you would laugh too 😆)
I do feel very much better after tge feedback I have received from people on here
I can understand how you’re feeling at the moment, I also experienced the shock and disbelief on diagnosis of my mitral valve prolapse earlier this year. I thought I was fit and enjoyed exercising hard then woke up at the end of April with shortness of breath that persisted. The cardiologist picked up a heart murmur that my GP didn’t hear and an echo confirmed that I had mitral valve prolapse with regurgitation. I found it hard to believe this was happening.
What followed was a CT scan to check the blood supply to my heart, which was clear thank goodness, and a TOE ( trans oesophageal echocardiogram) to confirm the cause and severity of the regurgitation . Waiting for these and the follow up consultant appointment was extremely stressful, not knowing what lies ahead and whether to push yourself or rest to manage the breathlessness and fatigue was the hardest
In August my consultant told me I had a Barlow valve, it seems to be congenital, I have had it all my life, and has thickened edges with floppy tethers that aren’t working properly as I have got older. He described it like an umbrella with the spokes no longer opening and closing 😬 and it’s classed as moderate regurgitation
I’m now adjusting to life with this condition. I have been started on furosemide to help with the breathlessness and try to listen to my body as far as exercise levels, walking a lot, running up one flight of stairs as I always did to push a bit but avoiding the three floors to my son’s flat and getting the lift now. I’m to be monitored and at some stage will need a repair or replacement valve.
I hope this helps explain a bit of the journey you’re on, although I’m in the early stages too. Like many people I have found this forum so helpful and supportive. It can be a hidden condition and difficult for family and friends to appreciate as how you feel can vary from day to day
I hope you have some answers soon and can feel the support from this lovely group of people. Take care ❤️
Goodness that almost sounds identical to what I have experienced.
So will your condition just be treated with medication? Also if you don’t mind me asking, have you been told to restrict exercise? Or do you just feel a bit less able? I hate the thought of not being able to run again 😕
I really hope I get to hear soon too… watch this space 😊
Wishing you all the best too and thank you so much for your reply 😊
The furosemide I take is a diuretic to help me manage the breathlessness. I started getting slightly swollen ankles in the evenings last year and also found I had to wear looser fitting clothes. The Consultant said that my kidneys are retaining fluid because of the regurgitation, so the diuretic should get rid of it. I will have another echo next year to check if any deterioration in the valve. He said that I would probably need a repair or replacement some time in the future. I wish I had asked more questions about this, such as when do they decide surgery is necessary , there’s so much to take in
He told me I’m ok to exercise, in fact he encouraged it, but I’m finding vigorous exercise hard as I still get short of breath. Also fatigue. I’m trying to build up my walking distance and am adding in bursts at a fast pace.
Your running is obviously important to you so do ask your Cardiologist about it and what exercise is safe for you
I am glad to hear they encouraged you to exercise. I do walk most days, and I’m on my feet all day at work which is busy, but I’m still a bit nervous to run, I think until I get to see a cardiologist I’ll bee a bit anxious. 😬
The shortness of breath and extreme exhaustion is my problem too, that’s what prompted my initial visit to the doctor.
I think when I go I might take a notebook and pen to write things down that they say, like you said it’s hard to take it all in 😬
it doesnt always mean a valve replacement. I had a mitral valve replacemt with a mechanical one when i was 18 im 42 now. The main thing is to discuss it with your cardiologist. There are so many new methods of operations now. Do some research if you like but dont scare yourself by it. Look after yourself. Hugs sara
That comment did make me chuckle because it’s exactly what I did! “ don’t scare yourself”!! google has a lot to answer for hasn’t it 😬a little knowledge is a dangerous thing. Which is why I am so glad I found this forum.
Thank you so much for your reply 😊
Hi, There probably was a time when I was anxious about surgery or of potential at least, but that's long forgotten these days after multiple surgeries. In my experience, its best to wait until you see the Cardiologist and get a clearer picture of the situation. I've had enough Echocardiagrams to know that whilst the Technicians may mean well, it's not their job to diagnose, and I'm surprised that yours divulged so much detail to you, so, it's bound to be giving you the jitters. In the circumstances, the sooner you see someone to explain matters the better.
At my most recent Echo, the Technician had me down as having severe regurgitation of the Aortic Valve, which isn't particularly good considering it's my third replacement. As it happens, she said nothing, and my Cardiologist reviewed the Echo results and deemed otherwise.
As someone has already said, don't scare yourself looking into it.
Also, better to know if there's a problem, than be oblivious to it.
I was quite surprised how much they told me too! But as I said after a bit my brain just didn’t take it in because I was quite shocked. As you say best to wait and see. I’ve had some informative and comforting ( and very sensible) advice on this forum which really helps 😊
Have a great weekend 😊
Hi, I forgot to say, and it may already have been suggested, but, when you get to see the Cardiologist, have someone accompany you if it helps. There can be a tendency to miss things or misunderstand, so having another person with you can be useful. My Wife always come with me, as I sometimes just hear what I want to hear or get mixed up (allegedly)
yes I definitely need someone there. The first time I saw the cardiologist I was so shocked he said I neede surgery, my brain just went to mush and I couldn’t take anything he said in 😬 luckily he put it all in a letter 😊
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