Disappointing: I am disappointed that... - British Heart Fou...

British Heart Foundation

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Disappointing

17 Replies

I am disappointed that there is a block on Chrissie55's email re. "the Thing that we can't mention".

I also appear to have had a reaction to It over nine months ago now and although I have had echocardiograms and a heart monitor I am still waiting for some sort of result as to what has happened to my heart. I had a prosthetic aortic valve replacement in 2017 and all seemed well until last November a couple of weeks after the third dose. The echo I then had in January showed what I can only describe as the valve closing up. I have been on blood thinners now for more than 6 months (originally should have been 3 - 4 months) and these cause "silent" migraines which are hateful. I was booked in 4 weeks ago to have a TOE but because of my blood pressure being so high it was cancelled. However, the cardiologist did perform a transthoracic echocardiogram and passed the results onto the specialist I have been seeing. That was on the 26th July and I am still waiting and feel completely in limbo...........

I would also say that I personally know of two others who have had a similar problem to mine and I cannot help thinking that there are many others out there who have had reactions which haven't been acknowledged properly.

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17 Replies
Qualipop profile image
Qualipop

The cause of your problems is no longer relevant. The treatment is

Dear uppercombe

Please enjoy the life given and not the life that might have been,

Please stop looking and start seeing.

Ewloe profile image
Ewloe in reply to

I love the advice

in reply to Ewloe

From my Grandfather who had loads, he was a Hell Fire and Brimstone minister who was the softest and most loving thing that our family ever produced, even after 40 odd years of losing him, not a day goes past were at lest one of his sayings doesn’t pop up in my mind to share.

Heather1957 profile image
Heather1957

Please join a Facebook page or start your own web page - in the words of the song 'Let it go'!!

Hi, Certainly a difficult situation you've found yourself in. I'm presuming you had a Tissue Valve fitted, given you only started on blood thinners a few months ago. Previous health problems or not, five years is early in its life for a valve to start having problems, but, unfortunately it does happen. There's obviously a reason for the change in how it's operating, irrespective of the cause, but, let the medical team determine that and try focusing on matters going forward. From personal experience, you can get caught up in a lot of if's and buts, and it does you no good.

I hope you get sorted.

in reply to

I just want to thank you for your reply and for actually reading my post. From some of the responses I received it would seem that they were reading someone else's email.

There is no point in going over the reason for my post as it seems to have gone over some people's head.

Thank you for your good wishes.

Qualipop profile image
Qualipop

bUt here are plenty of other places t o do that. THis forum is about how to deal with problems and possible treatments rather than the whys and wherefores. The most important thing in my mind is that people can get advice on how to deal with their problems.

Milkfairy profile image
MilkfairyHeart Star

Hello Chrissie55

Do you mean you had a heart attack without obstructed coronary arteries , known as MINOCA, Myocardial Infarction non obstructive coronary arteries?

Please note Chrissie55 has now left the forum and deleted their posts and replies.

Milkfairy profile image
MilkfairyHeart Star

Hi Chrissie55

Perhaps ask your Cardiologist why they thought you had a heart attack?

It's important so you receive the appropriate treatment.

Not sure who you are writing to, but as I only weigh 7st 11lbs there is no way I have ever been interested in weight loss! Neither have I ever had a heart attack. Have you actually been able to respond to Chrissie55?

Uppercombe

Milkfairy profile image
MilkfairyHeart Star in reply to

Chrissie55 has left the forum and their replies and posts have been deleted.

This maybe why this thread has become ' disjointed'

in reply to Milkfairy

Thanks for letting me know that Chrissie55 has left the forum. I am not surprised because I am pretty sure some of the comments directed at me were probably meant for her and I shall probably close my account as well. It is pointless corresponding with people when they don't appear to know who they are writing to.

Milkfairy profile image
MilkfairyHeart Star in reply to

I am sorry you feel this way.

I just wonder where you have read in my post that I have said I am physically fragile? I most certainly don't feel that way, and neither was I criticising anybody.

From some of the responses I have received I wonder if they have actually managed to read Chrissie55's post because some of their comments don't apply to me. In particular the one who says my Bio states that I am interested in weight loss - I don't think so; at 7st. 11lbs I would quite like to put some on!

Bio - your word from a previous reply; assume you mean profile. Since you assumed I wanted to lose weight and also had a heart attack which thank God I haven't, do you not think you are responding to someone else's post? In fact you have said the weight loss reference was directed at another member who has now left. The only thing you have written which makes sense is that the medical profession do underestimate how frightening some symptoms can be. I don't however, mention the symptoms which took me to the doctor in the first place. I am not surprised the lady who I assume all these replies were meant for has left considering there seems to be a complete mix-up with responses, and also I would add that the platitudes from some members may not be welcome by all and just appear flippant.

OK I see where you have got it from, but you are referring back to 2017 when I had O/H surgery. That has nothing to do with my present state of health. You mentioned the HA two days ago when you also mentioned my interest in weight loss! which as I said before is the last thing I need. All this makes me suspicious that somewhere along the way the lines have got crossed and all these odd and unwelcome remarks from various members are not actually directed at me but at the unfortunate lady who has now left which is what I intend to do as it is stressing me out.

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