2020 - A Calendar Thing? OR a Clear V... - British Heart Fou...

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2020 - A Calendar Thing? OR a Clear Vision on MY Heart Failure?

10 Replies

First off, a Happy New Year to all - suffering or not.

Tomorrow (yes, really, the 2nd January) I am off to the new Papworth Hospital to undertake my Heart MRI.

Last Friday, I undertook an Endoscopy to see if I am good to undergo and Enderscopic Ultrasound on mu Aortic Valve - and that gave positive results meaning I can undergo such a procedure.

It appears we have now found a working formula of medication to manage my heart conditon, certainly in terms of how I feel or symptoms no longer being experienced.

SO, with the above in mind, I'm hoping that before too long we will achieve a much more defined diagnosis as to what is failing in my heart to cause the concerns and symptoms that need medication. AND with that - we will be able to achieve a much more clearer insight in to what needs to be done to manage my heart to facilitate as near to normal (if not normal) lifestyle...

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Sunnie2day profile image
Sunnie2day

Happy New Year, SuffolkLad - although the procedure won't be the most fun thing you've done in Life, you're in ultra good hands at Papworth and it's a great place and way to begin a new year and a new decade.

Update us when you can and don't leave off any details of the procedure.

in reply toSunnie2day

I've ever enjoyed MRI's because I tend to think the actual 'hole with which you pass through' tends to be on the small side. I know the actual vibrations against touching skin can upset some people, but i'm good with it.

Will certainly update you with my experience - hopefully tomorrow evening.

in reply toSunnie2day

Well, it was a fun experience. 1h20 stuck in the MRI.

Apparently they come in different sizes according to body size - who knew?

Staff at the Royal Papworth were great - friendly, helpful and explaining of all that is likely to happen.

It was a different type of MRI to previous versions - or maybe just latest tech?

Had my arms wrapped in some protective material to protect them from the MRI, and had some light framework put over my chest - apparently this is normal for most MRI's - a new one to me.

I was getting bored at the end, almost falling asleep, if I didn't have some power naps. Sure I heard myself snore a few times... Well it does get boring: breathe in, breathe out, hold your breath............... breathe normally for over an hour with mixed durations inbetween requests.

The hardest part about the whole experience was finding Royal Papworth... They call the area the Biomedical Campus - I've lived in towns that are smaller! Certainly worthy of its own railway station now. 1 building amongst many...

Now just to get the results back to tell me WHY i kneed to be taking the current medication.

Sunnie2day profile image
Sunnie2day in reply to

Mine is still waiting for booking - the queues for machines locally are miles long and emergency bookings keep knocking everyone back several places. Great to know you were bored as it wore on! Gives me hope mine will be as boring when/if it ever happens.

Thank-you for updating, hopefully you'll update again when you get the results.

in reply toSunnie2day

will do - though probably under a separate post...

Hope you get an appointment soon. Have you checked that they have alternative hospitals to use in your area. Whilst Royal Papworth is the default, appears we can also make use of Basildon... 50 miles is 50 miles - which ever way im having to drive!

Sunnie2day profile image
Sunnie2day in reply to

I live in NE Scotland - the nearest next best is Glasgow and they are so booked up they aren't making any new bookings for the foreseeable future. I've been told it might be mid-late March before I'm rolling through the local tube.

Fine with me as the reason for the scan isn't urgent (they want to know if I have microvascular angina) and my symptoms are improving every day. I'm just about clear of a pericarditis acute flare so every day sees enough improvement to drop me even further down the queue for a booking.

in reply toSunnie2day

Glad it's not urgent... Scotland is a bit of a drive to everywhere. I love the place. Only been the 4 times but every one leaves me not wanting to leave...

But, as you say, everythign is a bit of a drive. If they can make Scotland suitable for electric cars etc - then they can make them work anywhere...

Hope you get a cancellation come through sooner

Sunnie2day profile image
Sunnie2day in reply to

Thank-you:) Meanwhile I'm looking forward to your update on the results. Waiting to hear must be a bit of a bear for you, I know I'd be biting my nails to the quick.

in reply toSunnie2day

Nah, not too fussed tbh.

12 years ago i spent a year fighting to get a diagnosis for lymphoma and then get treatment. I done all my crying and stressing then. It left me a mental wreck fo rsome time and cost me my job.

Now, I no longer care. If its gonna happen, its gonna happen.

Already told them i wont be going on the list for a heart transplant.

All I want is the ability to get back riding my bike again as close to days of old as possible and do a bit fo travelling. Maybe get a part time job or similar would also be nice.

GETTING the tests done is the hardest part... The waits are attrocious and need to be addressed with a large degree of urgency...

Sunnie2day profile image
Sunnie2day in reply to

I like your style:) I take my conditions seriously but not too seriously, if that makes any sense.

And oh how I agree the wait time for results wants addressing double-quick!

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