MVP with regurgitation - Upcoming 1st annual review

[_Paul]

Hello all,I was diagnosed with mitral valve prolapse with moderate regurgitation last August. I was told very little at this appointment and was given the impression it was fairly normal and would just be monitored. I didn't really ask much, as I knew nothing about the condition to have any questions. It wasn't until I received a letter following the appointment that I found out it was MVR with MR.

Anyway, I have my first annual review in a few weeks and want to be better prepared. If anyone has an recommendations for questions to ask the cardiologist during this appointment, I would appreciate it. I don't want to miss my opportunity and have to wait another year. I have had some worsening symptoms recently, which I will ask about, but I'm sure it is in part due to anxiety.

The obvious question will be 'will I need surgery', but I'm sure that is a question he is unlikely to comment on.

Thanks for listening.

Take care

[SmileySunshine]

Hi Paul. I usually write down all my questions so I don’t forget anything. But just as importantly I write down all my symptoms even if they seem trivial. Things like how far you can walk, can you climb stairs without puffing, pains how often and where. How long do they take to go. Can you do everyday things like washing or do you need to rest to catch your breath. What’s your BP like, has that changed etc

I would be asking things like how severe is it and how much worse than the last review ( I’m guessing you will have an echo done) if they are suggesting surgery, how long is the wait, what tests will they do in preparation. If it’s surgery what options are there and what does the consultant recommend? If it’s surgery but not yet, when do you need to watch for

Good luck with your appointment and I know is scary, but they are experts and the heart is amazing at recovering. I had OHS 6 months ago.

[Jermum in reply to SmileySunshine]

Hi, how bad were your symptoms before OHS? How did the condition affect your daily life? I am in a similar situation to Paul (MVP with MR), and had a first year review last month. I was told the echo shows again moderate mitral regurgitation with a slightly dilated left atrium. The regurgitant volume was slightly worse compared to last year. Surgery has been mentioned, but the consultant wants to wait until the condition worsens! That makes me very nervous.

[SmileySunshine in reply to Jermum]

it was my aortic valve that was replaced and I’ve had issues all my life not just with my heart, as I have an autoimmune condition that affects my arteries. So I’ve had yearly checks with the cardiologist for about 30 years! The last few years I had got worse, I was more breathless ( but had also had pulmonary embolisms so that was causing some of it). I suddenly got worse and over a matter of 3 months went from ‘let’s think about surgery soon’ to ‘you need it very soon’ I got to the point of struggling all the time, stairs were like climbing a mountain and I couldn’t walk my dog at all. My BP was all over the place .

I went for mechanical valve so I hopefully won’t need another OHS I’m 54 years old now

Good luck to you

[Jermum in reply to SmileySunshine]

Good luck to you too and many thanks for your reply. I hope you keep in good health.

[SmileySunshine in reply to Jermum]

Thanks

[_Paul in reply to SmileySunshine]

Thanks SmileySunshine for the really helpful advice. I will make a note of your questions. I believe I am having an ECG and echo as part of my appointment, so I guess that will be the really telling sign if things are getting worse. I had no symptoms up until April, when I was ill, but now I get a few things, including palpitations, which I never felt before. I will certainly mention these new symptoms at my appointment, but I would say my exercise tolerance is pretty good, so I'm hoping that is a good sign.Thanks again for taking the time to help 😊

[SmileySunshine in reply to _Paul]

That’s great to hear.

My best advice is listen to your body, you know you best!

I kept an eye on my blood oxygen levels, BPs etc and was always asking questions and talking things through with my consultant, I think of us as a team so we discuss what’s going on and any decisions are agreed so I feel in control still, but he is the expert so I have always followed his advise.

Let us know how the appointment goes.

[_Paul in reply to SmileySunshine]

Will do. Thank you 😊

[Jermum]

Good luck Paul with the appointment and let us know how you get on.

[_Paul in reply to Jermum]

Thanks Jermum,I will keep you updated. It is nice to talk to someone in a similar situation with the same concerns ☺️

[_Paul]

Just an updated. Had my first review with my cardio. The echo showed that my MVR is still moderated and not progressed any further, which is great. I asked lots of questions on this occasion and feel a little more reassured. My cardio wasn't that concerned by my palpitations, wheeze and cough, as he said that my heart was coping well and that I had good exercise tolerance. Surgery was mentioned, but only when considered necessary.

Anyway, feeling better for now, until my mind wanders again.

[Yumz199725 in reply to _Paul]

That's a great appointment sounds like your doing well. Sounds like my appointments they always mention I will need surgery but like you only when necessary x

[_Paul in reply to Yumz199725]

Thanks for your reply Yumz. I'm glad he was transparent at my appointment about the reality of surgery, even though it is a scary prospect.

[Yumz199725 in reply to _Paul]

Yeah I appreciate them when they say it how it is instead of saying yeah everything is fine x you actually feel like you have gone for a reason!

[Purpledog69]

I’ve just been told I have Aortic valve regurgitation pvc’s and svt’s. I’m freaking out! Terrifying!! I’m with you on I don’t want to wait and let it get worse I want it fixed and I am looking for a long healthy life. I was in shock when I was told but since have decided I’ve got to be aggressive to fight this as best I can. I live in NC and I will be traveling to Cleveland Clinic March 29. I have appointments all day there. Hoping to hear from them ways to fix this so I can get quality of life back. Will keep you updated.

Please keep us updated on your next appointment. Best wishes ❤️