Feeling anxious no sleep

[Meatless]

Hello again everyone. Got a letter following an echo which details the outcome as mitral valve prolapse with severe regurgitation. I knew this already however some of the terminology when you see it written down is terrifying! The reason I’m posting again is that I spoke to the cardio about this and he says I’m overthinking everything as sometimes the blood regurgitation can look pretty bad on the echo and that’s why they want to do a TOE yo get a closer look and also the Atria is only mildly enlarged the efraction rate is normal therefore he says he would expect both of those things to be worse if the regurgitation was accurately severe as it seemed on the ordinary echo. I’m bewildered can anyone identify with my scenario at all? Thanks everyone just for being somewhere to go with all this...

[MichaelJH Heart Star]

Good morning! This is the first time I have replied to you. I have to agree with your cardiologist in that you are overthinking! In a previous life I was working with advanced composites for the aerospace industry. This involved many aspects including NDT (non destructive testing) including ultrasound and high definition X-ray (unusable on humans but giving remarkable clarity on a demonstration on an amputated leg). As you know an echocardiogram is an ultrasound of the heart. The measurement of EF is actually only good to around 5% so I find letters saying things like 62% mildly amusing. It's akin to me timing to a 1/10th of a second on my wrist watch!

The TOE will give the cardiology team much clearer information for deciding the way forward. If ultimately this comes to surgery whilst not the best of experiences OHS (open heart surgery) is not that bad either. All the best going forward!

[Meatless in reply to MichaelJH]

Hello Michaeljh and thank you for taking the time to share that with me it helps to reassure and settle me down. I think I’m fast forwarding to worst case scenario for myself rather than dealing With what’s in front of me at this time only. If I could just get to sleep it would help everything I think. Thanks again much appreciated.

[woodlandwonders]

Hello,

I have to have one of these shortly and while I'm not looking forward to the procedure I'm really looking forward to the end of the ifs and buts, as regards the severity of my valves and the causes of them.

Echocardiograms are good but very subjective to who is looking at them. One Doctor described it by saying if we were both looking at the same cloud, but from different places, we would see different things. For example, my valves have been assessed as severe, moderate/severe , moderate, and at one echo I was told mild (it's not unfortunately)

It's taken me 3 years and a change of cardiologist to get the tests I should have had when my heart journey began. Your cardiologist seems totally on it which I would find very reassuring.

Take care

[Meatless in reply to woodlandwonders]

Hello woodlandwonders and thank you for taking the time to respond to my post. It’s interesting to hear your experience of echocardiogram. My team do seem to be on it however I have been very proactive in pushing for progress and had no choice but to go privately for a CT calcium score for a different heart issue at one stage. I do hope you can get some answers soon as I do agree it is the ifs and buts which are difficult to deal with sometimes. I wish you well and thanks again. Take care.

[woodlandwonders in reply to Meatless]

Hi Meatless,

Everything is much, much harder when you have had no sleep and I really feel for you there. I turn off the tv, phone, tablet for at least an hour before bed and read an easy on the brain book. Then I do 10 mins of a really basic meditation, where I'm normally in a rainforest, next to a waterfall 😁 If I wake up in the night I dont fight it, I get up make a drink and get back into bed to drink it and read my book. Normally I'm gone again within 20 mins.

I rang the BHF Nurses a few weeks ago and they were brilliant at explaining everything and answering my questions. Maybe a call to them would help?

I understand the need to be proactive. 4 years ago I staged a sit-in at my GPs 🙂 And 3 weeks ago i went to see a private Cardiologist. She immediately referred me back to the nhs for TOE, Angiogram and pulmonary physio. But best of all, I now have a consultant who won't pat my knee, ignore my symptoms and treat me like a neurotic woman. So I will get the answers and feel soooooo much better just for knowing that.

Enjoy your day !

[Meatless in reply to woodlandwonders]

Thanks woodlandwonders I can identify with your night time routine and will def give the BHF a call! I’m also familiar with the pat on the knee response when I tried to tell the medics 5 years ago that something was not quite right with me although thank goodness the team I now have seem to be quite joined up and not so patronising... stay well and thank you for this

[imps4 in reply to Meatless]

Had something similiar,ct for a lung problem threw up slight elevation of pressure in pulmonary artery,I paid for an echo as nhs was 3 month wait.this said the pressure was ok but mitral valve leaky,could be moderate to severe and suggested a TOE but when I luckily got a face to face with consultant he said I didnt seem to have no sytoms like breathlessness or swollen ankles so thought he d just monitor for a bit.should be glad I suppose,but also didnt seem to agree with the TOE but could do a ct angiogram.so I still feel none the wiser on where I am.