Many UK / NHS members? Today's routine check up wasn't routine!

[SwansCity1912]

Today's annual echocardiogram did not result in the usual - all good, see you in a year!

My (35m) bicuspid aortic valve was found around 15 years ago by chance when I was experiencing palpitations likely caused by stress at work. I've always been asymptomatic, never given advice or had any real conversation as I guess it's never warranted it. I've always been told there is a mild 'leak' which I've not really understood but I now believe to be known as mild regurgitation.

At today's appointment I was told the regurgitation has gotten worse and I'll need a transoesophageal echocardiogram. This will be followed by a chat with the consultant and then a surgeon. The person doing the scan I've seen for almost all my previous scans; it was at a cardiac physiologist-led clinic and they attempted to get the consultant to speak with me but they weren't available.

I'm now waiting for my transoesophageal echocardiogram and have no real sense how urgent this will end up being. It's too easy to make links that aren't there but these past 6 months I've started having high blood pressure, headaches (reduced a lot recently however) and getting more tired that usual. However lots of change in my life so not so easy to say I'm becoming symptomatic or not. I've also lost a significant amount of weight (planned!) this past 2 years and been a regular at the gym lifting heavy which sometimes makes me feel dizzy. I've been reading on here about weight lifting... almost shocked I've not actually had any advice previously!

Have been reading a lot today and worldwide experience has been very helpful; keen for any UK / NHS experiences in particular - waiting times etc!

Only a limited introduction I guess as I know little about how bad it is. Is surgery urgent or can be planned in to the future etc!

 

[GreenGiant91]

Hey,

Based in the UK. When I had my transoesophageal echocardiogram I was already admitted into hospital. My hospital only seemed to do them one day a week unless they had an emergency patient. The different in the chest echocardiogram and transoesophageal echocardiogram is pretty big from my experience. The chest echo tended to over estimate the blood flow and the transoesophageal was more accurate. Unlucky for me my bicuspid valve had holes in them due to infection.

In terms of surgery I was kept in as an inpatient and had my surgery within 3 weeks but I've heard of people being brought in as outpatients but it tends to take longer (months rather than weeks).

I'm going to be honest, the transoesophageal echocardiogram is tough going so make sure you ask for some sedation (you won't be knocked out but you want to be very sleepy for it). Hope all goes well for you!!

 

[SwansCity1912]

When I had my transoesophageal echocardiogram I was already admitted into hospital. My hospital only seemed to do them one day a week unless they had an emergency patient. The different in the chest echocardiogram and transoesophageal echocardiogram is pretty big from my experience. The chest echo tended to over estimate the blood flow and the transoesophageal was more accurate.

Thanks for taking the time to reply. Been full of anxiety all day and just hearing from someone like yourself really does help.

I spent most of my day researching rather than working. I do find it unusual my next step is the transoesophageal as I’ve pick up on others having it immediately before surgery rather than it being more routine or months before surgery!

I half remember the person saying the scan will help see where the ‘jets’ are coming from or something like that. And a lot more blood flow coming back.

I'm going to be honest, the transoesophageal echocardiogram is tough going so make sure you ask for some sedation

I’ve seen mixed reviews but appreciate the honesty. If it’s gonna be rough I’d rather know upfront. Will be sure to ask for sedation - the NHS related advice stuff I’ve seen didn’t indicate it to be a choice (as in you had to have it). But I’ll be sure to make sure I’m having it!

 

[pellicle]

while not from the UK, this:

I've also lost a significant amount of weight (planned!) this past 2 years and been a regular at the gym lifting heavy which sometimes makes me feel dizzy. I've been reading on here about weight lifting... almost shocked I've not actually had any advice previously!

makes me feel its closer than further away. That's good news IMO because now you can stop worrying and focus on what needs to be done (which is what you appear to be doing).

Best Wishes

 

[SwansCity1912]

while not from the UK, this:


makes me feel its closer than further away. That's good news IMO because now you can stop worrying and focus on what needs to be done (which is what you appear to be doing).

Best Wishes

Thank you. I hope my UK reference isn’t poorly written. Very keen to hear from anyone and everyone. I guess from reading today some of the things discussed just aren’t relevant or not the norm in the UK. And I’m confused enough as it is

Thanks for replying.

 

[pellicle]

And I’m confused enough as it is

what sort of things are you confused about?

 

[3mm]

My transoesophageal echocardiograms weren't too bad. However, I did need a driver for the outpatient procedure. The procedure uses large tubes pushed down your throat, so be prepared for the feeling of being choked. I've been told these procedures give the best view of the inside of your heart, so they are a major help both to diadnose an issue, and to plan for surgery.

 

[GreenGiant91]

Will be sure to ask for sedation

As Mark said you'll not be allowed to drive for 24 hours afterwards. Some people handle it better than others. I've had 3, 2 needed to be cut short as I couldn't handle the end part (goes further down) the 3rd one I was heavily sedated when my doctor was telling me the bad news I thought he was telling me good news then I woke up thinking it was all a dream

 

[SwansCity1912]

what sort of things are you confused about?

I guess it’s more being overwhelmed. The stuff I don’t understand I suspect is not relevant for now such as measurements and pressure etc. Oh and how the US (and wider) health system works!

 

[pellicle]

I guess it’s more being overwhelmed. The stuff I don’t understand I suspect is not relevant for now such as measurements and pressure etc. Oh and how the US (and wider) health system works!

overwhelmed is totally expectable. Keep in mind two things

1. eat the elephant one bite at a time (don't try to do it like a python and shove it all in)
2. nothing is "per minute" urgent, so take your time and grok it slowly and properly first time (as this saves panic from an incorrect assumption).

When something is presented that you don't understand, just ask it as a question here, someone probably does and can help you.

Best Wishes

 

[V__]

I'm now waiting for my transoesophageal echocardiogram and have no real sense how urgent this will end up being.

TEE is a more precise procedure than TTE (since the probe is much closer to the heart and the sound waves are not scattered by the skeleton). It's also more "demanding" on the medical system, so not quite "routine". I recall it was done by a cardiologist and a couple of nurses. Whereas TTE only needs a specialized tech. My cardiologist did it as a part of the surgery planning, since the surgeon would like to see this test anyway. But there were still other/follow up steps: angiography test, referral to surgery, tests ordered by the surgical team, etc. If I recall correctly, it took something like 6 weeks to go through all of that, but it's probably case- and provider-dependent. I'm sure NHS has their own protocols. But the TEE should give your cardiologist a more definitive information. Probably you can ask them about the follow-up steps after the test?

 

[PAN]

Hi there, also UK and was monitored over several years. Dublin - Liverpool..

My cardio would ask for the TEE every couple of years through the monitoring phase. Though only for the last say 6 out of 12 years of watching and waiting. I never minded them at all, heavily sedated and not much was remembered. After one it felt like I had rested for a week, quite enjoyed it.

Interestingly I always wondered if weights had tipped me over the edge towards surgery. Regardless, if it's heading in that direction, just keep it monitored and go for it when the time comes.

All the best , let us know the outcome of your scan..

 

[SwansCity1912]

ask for the TEE every couple of years through the monitoring phase

I best double check - as I understand it TOE and TEE are the same thing right; just depends who you ask (or where you live)?

It's great to hear from someone who has had this as part of the monitoring phase as I've been quick to link it with imminent surgery. It was explained to me in the same sentence as 'chat with consultant and then surgeon' as if that's a fixed series of steps I'm now on. Too much unknown and I hate that.

I always wondered if weights had tipped me over the edge towards surgery

I've been blasting it. Gym and sauna kept me sane after my divorce in 2020 and plays a big role in supporting my mental health now. It's my birthday on Friday so I'm going for an extra PT session (have them weekly) and taking the day off work. I've had no advice to change my lifestyle so I'll play it safe until I get chance to ask and understand more about my situation. PT aware of the situation so no plans to exert myself and I'll avoid the sauna for now.

I do also wonder if the weights have nudged it along...

 

[LondonAndy]

I haven't had a transoesophageal echocardiogram - in fact I had to Google it to find what it is - so can't help much but wanted to reach out as a fellow Brit. Whatever else we hear about the NHS, which is not all good, I do think this kind of procedure and heart surgery is something it excels at - you will be in safe hands when it is done, with highly competent medical staff and well equipped theatres etc.

My own valve replacement, due to stenosis so not relevant to your regurgitation issue, ended up being done as an emergency procedure - having started with the sudden onset of shortness of breath, I had been slowly having diagnostic tests over a period of months and then thought I had a heart attack at home. It turned out to be a "cardiac event", so no harm to the heart, allegedly, but going in by ambulance all delays were stopped and I had the valve operation within days. One plus about this was that there was no time to ponder all the risks and potential complications that come up when you Google stuff. All I know is that any test needed was done, and my recovery was swift and uneventful.

@GreenGiant91 has already replied to you, and I strongly recommend reading his post, as he's just been through the op. My comment on that may give some tips for preparing for the day you get called in for it.

 

[SwansCity1912]

wanted to reach out as a fellow Brit. Whatever else we hear about the NHS, which is not all good, I do think this kind of procedure and heart surgery is something it excels at

It’s great to hear from you! Once the system picks up some speed it’s often excellent.

One plus about this was that there was no time to ponder all the risks and potential complications that come up when you Google stuff

Ha. Yes. I’ve spent a lot of time reading this site this past few days. Got loads of questions to ask at the appropriate time. (Such as do you need to shave fully from the neck down; like everywhere including my hairy toes?! Can I keep my beard?)

Think I’m at the point I’m happy I know enough to feel informed and prepared at what might come. So digging much further is likely premature and not helpful. Going to get this TOE scan done and see what it brings next. I feel ahead of the situation now and it’s a relief.

@GreenGiant91 has already replied to you, and I strongly recommend reading his post, as he's just been through the op. My comment on that may give some tips for preparing for the day you get called in for it

I’m glad you shared both of these. Your post helped me start that thinking on what’s needed - I already know what charger cable I’m taking when it’s my time.

I read the whole thread. @GreenGiant91 - thank you for sharing your journey so far. It’s one of the most important thread/posts I’ve read so far. It was great to see that thumbs up so soon after your surgery. I am sorry to hear you’ll be there longer than you expected and wish you a speedy recovery.

 

[GreenGiant91]

I read the whole thread. @GreenGiant91 - thank you for sharing your journey so far. It’s one of the most important thread/posts I’ve read so far. It was great to see that thumbs up so soon after your surgery. I am sorry to hear you’ll be there longer than you expected and wish you a speedy recovery.

Glad it was helpful. I found many people's journey post extremely helpful to me in understanding what happens next then life after the op. My situation was just more complicated and unlucky with the recent endocarditis. Yours will be much better post op experience and back home in no time.

 

[nobog]

I half remember the person saying the scan will help see where the ‘jets’ are coming from or something like that. And a lot more blood flow coming back.

The "jets" will be coming from the central apex of the valve leaflets and is caused by leaflet prolaps (leaflets folding backwards) or calcification causing improper sealing.

 

[SwansCity1912]

The "jets" will be coming from the central apex of the valve leaflets and is caused by leaflet prolaps (leaflets folding backwards) or calcification causing improper sealing.

That's helpful thank you.

 

[SwansCity1912]

TOE scan booked for second week of Jan!

 

[LondonAndy]

TOE scan booked for second week of Jan!

Ankle scan on third week of Jan?