Echo showed strong heartbeat, pericardial scarring and fluid, and aortic valve scarring

[Sunnie2day]

Backstory: I'm a 'split-personality' lady Briton - born in the USA to British expat parents who divorced shortly after I was born - Mum returned to GB, Dad brought myself, my older brother and sister up in the US (Desert South-West, family cattle ranch). I spent my childhood half-half, back and forth to Britain so often all the 'stews and pilots' knew me and my siblings. I had rheumatic fever as a child and was diagnosed in the USA with Rheumatic Heart Syndrome (RHS) in 1964; over the years I developed what in the USA is called chronic pericarditis - have had one pericardiocentisis, relapses over the next several years, always knew it was back owing to chest pain.

I was managing everything well without medical supervision after retiring to the UK in late 2010 (I thought) until mid March 2019 when about five days after Round1 of root canal treatment I started having whopping chest pain (typical pericarditis symptom pain but stronger than ever) plus shortness of breath. My dentist sent me to the GP when I went in for Round2 of the root canal treatment saying he could see my heartbeat in my neck and that I was quite unwell. The GP suspected heart failure (a junior, she's fabulous) put me on Bisoprolol 1.25mg+aspirin and a GTN spray for angina, and an urgent referral to Rapid Access Chest Pain which led to referral for an echocardiogram and a referral to a cardiologist - saw him this past Tuesday (18 June 2019). Worth noting by the time I got to the echo appointment I was feeling so much better I actually apologised to the tech for taking up her time.

The cardiologist called the aortic valve scarring 'trivial' (seriously, his words and honestly I loved hearing 'trivial' about the amount of scarring!), doesn't seem too concerned and didn't seem to want to say it was down to the RHS, likewise the 'small amount of fluid and scarring in the pericardium'. He said the pericardial fluid and scarring was minimal and they '...don't plan to go in after it.' He was glad to hear I seem to be responding well to the Bisoprolol 1.25mg (seems to have stopped the angina almost completely and so far little to no side effects). He seemed a bit concerned about what is causing the angina and suggested if the Bisoprolol stops working so well he'll want a cardiac catheterisation (YIKES!!). He agreed I could plan my own 'walking for fitness' routine and said 'See you in the autumn'. I was out of there in about ten minutes.

Now I'm thinking 'trivial', and was my state of unwellness when I saw the GP down to pericarditis that has self-resolved (seems to be my pattern - I have a relapse and it self-resolves without treatment)? Should I continue on saying here in the UK I have RHS? Is there anything I need to keep a watch for? Why if it's all 'trivial' am I seeing him in the autumn - clearly I haven't been discharged from cardiac care but why haven't I if it's 'trivial' and the pericardial fluid and scarring seems insignificant to him?

I was so glad to hear him say no heart failure, and no pericardial constriction I forgot to ask him some other questions (like travel, what exactly do I call what I have, do I need a medic-alert bracelet...) so I'm booked to see the GP in about ten days to ask those questions.

But, 'trivial'? Huh?

[Calliope153]

I don;t know if this is any help to you but it may be terminology that is causing confusion:

Trivial, Mild, Moderate, and Severe are sometimes used to describe cardiac conditions. As one of mine is described as severe I was a little less than thrilled to find this out!

It may not apply in your case but worth checking out?

.

[Sunnie2day in reply to Calliope153]

Thank-you for your reply and yes it is helpful! I think you're right about terminology - I have something of a double whammy owing to the many years in the USA and the terminology differences between the two countries.

I have a written list of questions I will be taking with me to the GP appointment on the 28th (June). She's wonderful - loves to see patients with written lists and says it makes far more efficient use of time. I feel confident I'll have answers then - but hearing from others here on the forum is beyond helpful. Thank-you again!

[Milkfairy Heart Star in reply to Sunnie2day]

Hi Sunnie2day,

Words have a more powerful effect than realised.

They can cause confusion too. One person's frequently is once a day another's one a month!

The British of course have made understatement into an art form.

I marvel at the way sometimes my Cardiologists contorts his responses in his desire not to make me feel anxious or is it his anxiety he is managing ?

I have that word severe written all over my notes.

Doctors sometimes don't appreciate what they might describe as trival has a marked negative impact on the quality of life of an individual patient.

Has your Cardiolgist said whether the information gathered from an angiogram will help with your diagnosis and possible improvement of treatment?

Is there another less invasive way of getting the same information eg CT angiogram or Perfusion MRI etc?

I make a list of questions for my Cardiologist, last time I saw him in clinic I had to stop him taking it off me he was so keen to have a look at my questions.

[Sunnie2day in reply to Milkfairy]

I use a word doc to keep questions on, then I print off two - one for the consultant and one for me to take notes on. My GP loves it but I've not tried it with the cardiologist - yet - as the first time I saw him was a week ago Tuesday and I'm not scheduled to see him again until early September. I am seeing the GP Friday in hope she can answer some of the questions I didn't know enough last Tuesday to ask. (Hope that made sense - the appointment Tuesday the 18th was with the cardiologist to hear the results of the echo, bloods, and ecg resting and exercise).

At the appointment Tuesday past, the cardiologist did say something about perhaps doing a cardiac catheterisation to 'understand the angina' but then said we could wait on that as I'm responding so well to the Bisoprolol (1.25mg)+aspirin (300mg, yes, it is a whopping dose but no ill effects and I've been on that for decades). Not being too enthusiastic about the cath suits me to the ground as I was worried he'd say he wanted that 'asap'.

Thinking about it all - the symptoms my dentist noted, my memories of the condition I was in when I went to the GP (on dentist order - he didn't mince words, threatened to ring for an ambulance if I didn't agree I'd go straight over to the GP), and the way I progressively felt better between that dentist sending me off to the GP and the rounds of tests then the consult, I am as certain as a layperson can be that I had a rather bad bout with pericarditis.

Past experience+the echo showing some fluid still in there to me is a strong indication that's what happened. I haven't had a reoccurrence in several years (last one was 2005 or so) and so missed/ignored the symptoms that should have had me in the GP much sooner. My mistake and not one I'll let myself make again. I am on the mend, I do feel guilty 'taking up their time', but oh how I wish I'd gone in sooner!

[Sunnie2day in reply to Milkfairy]

As an update (11 Aug 2019) - I took your question about angio and/or MRI to the GP with me - I did print her out a copy of my questions (which she loves as it makes best use of time), and she answered every one including saying she was making a note to the cardiologist suggesting cardiac MRI instead of angio owing to nerve damage in my arm.

About a week later I got a letter informing me of the scheduled MRI (late October). Did the happy dance all over the living room as the cardiologist had said during the June appointment he was considering angio or a cardiac catheterisation for late October and really, when he said that I think I felt my blood shrink in my veins at the very thought.

[Milkfairy Heart Star in reply to Sunnie2day]

That is good news!

Great to hear you have an excellent GP who not only listened to you but then wrote to the Cardiologist.

The Cardiac MRI should hopefully be able to look at the heart muscle in much better detail than an angiogram which is good for looking at the blood supply.

Now the wait.....

[Sunnie2day]

I've begun to wonder if the lack of a specific label for the scarring, etc, is down to the cardiologist not wanting me to 'Dr Google' (which to be fair I have been known to do but only click links to NHS, Mayo Clinic, Cleveland, and similar).

Still, I'll be glad to see the GP on Friday afternoon - hoping she will explain a bit further as to why, if my slight pericardial fluid and scarring, and the aortic valve scarring are 'trivial', am I scheduled to see the cardiologist again in September.