Update and cautionary tale

[whisperit]

Hello lovelies

I've not been active here for a while, but thought it might be useful to update on some issues.

The main one being that after complaining of a racing heartbeat for ages, I've recently had a Cardiology review. Turns out I've developed "severe left ventricular impairment with cardiomyopathy". My BNP is 2300 (super high, and apparently a good predictor of mortality risk).

The important bit is that my cardiologist said my "rheumatological background etc has masked the development of cardiac symptoms". So the lesson is to make sure your medics are keeping a close eye on your heart health and not dismissing any symptoms as just another lupus quirk.

x

[marypw]

Hello and I was just about to say that you might get some helpful information on your heart condition on the British Heart Foundation group on Health Unlocked.

But now I’ve seen your query there as well!

Welcome to the cardiac and lupus group for the very elite.

All best wishes!

[whisperit in reply to marypw]

Thank you marypw,

Yes, I've posted some questions on the BHF. This post was more to highlight an issue which more lupies might fall foul of, as I did x

[EOLHPC in reply to whisperit]

😍👋👋👋👋thanks so much for posting: it’s great to hear from you & am relieved they’ve FINALLY figured this out & are stepping up. 🍀Hope the treatment plan really helps, but I wish you didn’t have this to manage on top of everything else 🤦🏼‍♀️.

Am very grateful for your ‘heads up’: there are so many indicators my heart needs watching, starting with infant onset heart mumur, but since baseline tests in 2011, all first & second line tests are ‘normal’…meanwhile rheumatology has me on various v helpful long term meds that can only be challenging my heart 🤷🏼‍♀️…Hope you’ll keep us posted when you can 💞

[whisperit in reply to EOLHPC]

thanks Coco x

[EOLHPC in reply to whisperit]

🌈🍀🤞🙏🏻🕊️💞

[OldTed60]

I’m sorry to learn of the latest twist in your journey. Cardiomyopathy is listed as a likely complication of my connective tissue disease anntibody along with pulmonary hypertension. So far I have no symptoms but the annual checks I’m supposed to have never actually materialise. So your post has prompted me to remind my rheumatologist to keep me down for regular echocardiogram and ECGs.

[whisperit in reply to OldTed60]

Thank you, and Im glad to hear you're on top of things. It can be such a strain with a chronic illness and often I've thought, "I need a break from all this" that I probably let things slide when I should have been more proactive. Lesson learnt, I guess x

[OldTed60 in reply to whisperit]

Oh yes. The problem with opting out of healthcare and yet more investigations, even for a relatively short time, is that life has a way of confounding our best laid plans. I’m glad you posted and that this heart problem has been identified now and I do hope your cardiologist ensures that you get the best treatment and monitoring possible. X

[CecilyParsley]

I am so very sorry to hear this lovely.I hope that now you are getting the care you need. Sending you huge cwtches and lots of love xxx

[whisperit in reply to CecilyParsley]

Thank you CP x

[misty14]

Hi whisperit, so sorry to read of this serious heart problem but great seeing you back on forum. Is there treatment for this to slow your heart down?. Your certainly proof that we must keep badgering our doctors when we know something is wrong.

TAKE CARE. Xx

[whisperit in reply to misty14]

thank you sweetheart,

I've been started on candesartan, bisoprolol and dapagliflozin. After 2+ years when my BP has been continuously around 145/95 and resting pulse around 100, I took it this morning and my BP is 122/78 and my pulse 80. It feels a lot better! x

[misty14 in reply to whisperit]

It must do whisperit.!. Fingers crossed it continues for you. I've been on bisoprolol a long time now and its been a good drug for me. 🤞💕🤞💕🤞💕🤞💕🤞💕🤞💕🤞💕🤞💕🤞

[Pumpkin2009 in reply to whisperit]

I hope you continue to feel better. I can't understand why with your blood pressure and heart rate that high for 2 years was not addressed. I have A-Fib and was put on medication immediately. Now for at least 6 months although on BP meds since my thirties, it kept increasing. This week at the doctors at 194/104 my doctor added a fourth med and referred me to a kidney/bp doctor. He explained the danger of a brain bleed. I am so glad you are getting the care you need.

Healing hugs.

[whisperit in reply to Pumpkin2009]

Thanks Pumpkin, I wonder if my medical background and assertiveness has in some ways worked against me. Maybe my medics have thought, "Oh he'll pick up on anything amiss so I don't need to worry about monitoring everything"? Hope your BP settless down soon x

[Freckle1000 in reply to whisperit]

As a purposely cautious and unassertive patient with a GP who seems (?) happy to trust me with tiltrating drugs - including BP meds - and with half reasonable medical knowledge myself - I'm really certain at this stage of my life that there's absolutely no strategy you can use in the face of Doctor ignorance apathy and lets face it - sociopathy. Do not blame yourself.

Even with good Doctors - they can only do their best - which is frequently not enough.

[whisperit in reply to Freckle1000]

thank you frreckle1000

Yes, I've already caught myself in self-blame; why didn't I think of monitoring my BP regularly? Why didn't I make more of a fuss? In fact, I could hardly have been more consistently outspoken about my fatigue, weakness and declining mobility. When my rheumy said, "Well, yes, it'seems a bit more than the usual fatigue I see - I'll add "finromyalgia to your diagnosis" , I was disgusted, and insisted on seeing an endocrinologist. Turned out I had adrenal insufficiency, so *that* was added. Then I found myself struggling to get upstairs and eventually persuaded rheumy to do a CK level. Turned out I had polymyositis - which again explained things.

So my story is one where my doctors have listened - but they've rarely taken the initative. In addition to the factors you've mentioned, there's a lack of time. So I suspect this is a very common pattern x

[Freckle1000 in reply to whisperit]

Absolutely.......a common pattern. God !......misdiagnosis of fibromyalgia causes such a terrible cascade - not only in Doctors minds - but with us trying to escape it's dangerous clutches - totally by ourselves without the very medical guidance we need to do so quickly.

What a system.

x

[KayHimm]

Whisperit -

Very glad that was finally evaluated. Does the cardiologist think the cardiomyopathy is at all related to your connective tissue disease?

I hope you are treated and feeling better soon. Maybe that will help with the awful fatigue.

Best of luck,

Karen

[whisperit in reply to KayHimm]

Thank you. Cardiologist says he needs to see the detailed cardiac MRIs before being clear about aetiology, but he suspects it is related to my myositis x

[Treetop33]

Nice to hear from you - it has been a long time (though I am not always on this forum) - but I'm really sorry to hear that you've developed heart problems. So frustrating that diagnosis takes so long! I really hope that you get some resolution and treatment that will help xx

[whisperit in reply to Treetop33]

Thanks Tt, good to know you're still dropping in here too and hope you're doing OK x

[Treetop33 in reply to whisperit]

I'm good, thanks. Like most people here had/having a tricky pandemic, am in and out of health blips and have inconsistent medical support! It's good to hear from a familiar voice though. You take care of yourself x

[Purplebox]

Hi there. I was very interested to read your post and am glad to hear that your situation is now improving. I have been having a racing heart beat on and off since the heatwave last summer and am dreading the prospect of another scorching summer this year. Last summer I went to my GP about it. Blood tests were taken which showed low potassium, ECG was fine so I was sent home, told to rest and hydrate. (It was actually quite an upsetting/ unsettling appointment as the GP then had a chat with me asking questions about my personal situation e.g. living on my own, what I do all day etc. My late mother had vascular dementia and the GP's questioning was rather like the pre cursor fact finding questionnaire to see to see if I had the beginnings of dementia. As I witnessed this with my mother at the time (although she was already well into the throws of dementia at the time) I felt very uncomfortable and that I was making a fuss about nothing. I went home with my tail between my legs feeling like a total idiot and that I was not really being taken seriously. I am not a super sensitive type or given to imagining things. In retrospect I should have been more persistent at the time as the nurse picked up I had an irregular pulse but the GP did not seem concerned about that). For the last couple of days my heart has been noticeably racing again so will go back to the GP to take this further but insist on seeing a different one. I last time I saw the rheumatologist was in last June (my first appointment at this hospital) and have no idea if and when I will be seen again. I do have high blood pressure (am on Felodipine for that) but she did not mention anything during the very thorough consult about potential heart issues due to Lupus ( although I already knew that the heart and kidneys etc can be affected to prior research). Not a satisfactory situation but one I need to follow up on more firmly and thanks to your post I will do exactly that. All the best.

[whisperit in reply to Purplebox]

Thanks for sharing your experiences, Purplebox. It may well be there's nothing really bad happening with you, but obviously, I've learnt a hard lesson on the importance of persisting if you feel something's not right. Hope all goes well for you x

[Freckle1000]

Hello whisperit,I'm really sad and quite angry to hear about your heart condition. I hope medication go's a long way to help and you're managing to work through the inevitable trauma you must be feeling.

I'm thinking of you.

*******,*

I also just want to repeat your warning about autoimmune issues getting in the way of heart conditions being diagnosed.

********

I was diagnosed with POTs - first due to ' anxiety / fibro ' then, with some relief graduating to POTs due to nerve damge from Lupus.

This all delayed diagnosis of a somewhat blocked artery - and for several years angina pain in my front and back was dismissed in ERs as costochondritis.

The POTs diagnosis - just out of sheer confusion on tbe part of the cardiologists - also delayed surgical intervention.

I recall having a conversation with the surgeon saying I'm willing to take a punt that the operation will disprove the POTs diagnosis. He said it may not.

I too suffered from a BP spike a year and a half before all this. It just didn't seem to garner as much medical concern.

I was having a bad lupus flare as well at the time ?

GP forgot ?

I don't know ?

Six months on from the blockage treated - I had nerve conduction texts from top to bottom - including the heart nerves / reflexes. sweat tests - everything.

I never had POTs.