Another Hurdle - Questions to ask!

[LindaLittleBear]

Dear All, As written I've been told I have right side heart failure, identified by blood test, Echocardiogram, and visible by the huge amount of fluid I was carrying in lover limbs, body and lung

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In 17 days I have lost 31.67% of my body weight = 36.3kg

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I've also had a CT contrast scan.

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Preparing for discharge the cardiologist was at pains to tell me I have had a very successful triple bypass and the left side of the heart is pumping away.

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When I asked what has caused the right side failure, again he referred to bypass and left heat function.

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I've repeated attempts to understand the right side heart failure and have had the words right ventricle muscle weakness, ischemic heart disease and wear and tear thrown at me.

Am I missing something? Am I asking the wrong question

Thank you all for taking the time to read my latest post.

🙏💖

[10gingercats]

I have right sided failure and a useless tricuspid valve .The left side seems ok so far and i have got to 86.I used to worry a lot about it but just grateful now my heart is continuing to behave itself.....sort of.

[LindaLittleBear in reply to 10gingercats]

Thank you for sharing.

[RMG48 in reply to 10gingercats]

I also have right side failure and a severe Tricuspid valve regurgitation. I am 76 and am in contact with my cardiologist and evaluating possible valve repair through an invasive new method. Have you ever discussed it with your cardiologist or is there any one who has gone through the latest method of valve repair.

[10gingercats in reply to RMG48]

Yes. It has been discussed but my flaps are very wide and so it is not particularly feasible to do a Tavi repair. I donot know of any other repair.But i will lok it into it further. Alsoat 86 the risk increases.If things go pear shaped while they workthey gointo open heart surgery mode.What has been suggested for you?

[RMG48 in reply to 10gingercats]

I am waiting for Transesophageal Echocardiogram to decide what best to intervene. However for a total replacement of a Tricuspid Valve could be with the latest Evoke technology.

[10gingercats in reply to RMG48]

Yes.i had a trans echo before I had a hole in my heart closed.It was successful and I felt very well afterthe procedure had been done....a very simple one day inhospital job.Apparently with older people the docs. prefer 'tried and tested' proceedures and Evoke is pretty new.But i will still enquire and thanks for the info. If you find out anything more please let me know.

[Hidden]

Linda, I had a quick look at earlier posts of yours. You’ve been through a lot!

I think it’s for your medical people to tell you exactly what’s been going on, as we here aren’t medics and don’t have access to your records.

Maybe the discharge letter will summarise everything?

[LindaLittleBear in reply to Hidden]

Thank you for responding, I absolutely agree my medical team should tell me what's going on..

Perhaps I didn't express myself so well, Am I asking the medical team the right question.

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What is causing the right side heart failure.

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I don't believe I have had that questioned answered.

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I do hope the discharge letter sheds more light.

😊💖

[Hidden in reply to LindaLittleBear]

You mentioned ischaemic heart disease, so that might be the cause. But the cause is in the past. What you’re interested in is, what can I do so that my quality of life improves? Or something on those lines.

[LindaLittleBear in reply to Hidden]

Thank you,!

[fishonabike in reply to LindaLittleBear]

To me it seems you are asking the right questions but not getting answers which help you - there are lots of possible reasons for this - in my experience it seems that when doctors ( and others) don't know the answers or don't really want to tell you what they know they tend to focus on something they are clear about which they feel should be what you asked about

But you are still left in the dark - so either you get pushy with the doctor (or other) and risk their irritation before you can get a straight answer, or you give up and try to find out for yourself

Have you thought of asking someone else with relevant experience about what could be causing you right side failure and what this implies for you? e.g. the staff of the BHF or Cardiomiopathy UK helplines

[LindaLittleBear in reply to fishonabike]

I had a chat with the doctor and voiced my concerns. That I wasn't getting an answer. He has said further test in the cardiology clinic will determine what's going on.So medically I have presented with right side heart failure and symptoms, diuretic treatment has offloaded the excess fluid

I'll be discharged with diuretics and wait for the cardiology clinic appointment!

[Maxbar]

LindaI really you hope you get all the right answers ,from discharge letter , and we all hope things start to improve for you this year, ❤️

[PilgrimsProgress in reply to Maxbar]

.. perhaps your GP might be able to help ? Try booking an appointment with them...- they may find a different form of words - or similes - or way of explaining things... It's often difficult for medical professionals to summarise, paraphrase - or "explain in lay terms" complex physiological processes.. - Often it might come across as over -simplistic - or patronising - when that is not the intention Other things to be aware of - are that sometimes the answer might be "well, we just don't know " (what might have caused an illness or particular condition.. ) Also of course... medical professionals often find that people who are very anxious - have a need to be validated, reassured - and "listened to " (as of course they deserve to be... ) - and that is the underlying agenda - rather than a lack of knowledge as such...

[LindaLittleBear]

Thank you! 💖

[Bernar]

hiya Linda

A doctor said to me it’s mostly impossible to say what has caused many medical conditions in individual patients and in any case the treatment would be the same no matter what the cause. Doctors talk about risk factors- so for example smoking is a risk factor for heart disease but not all smokers get heart disease and some people who have never smoked get heart problems. Try not to worry and try to trust your doctor?

[LindaLittleBear in reply to Bernar]

Bernard, thank you for taking the time to respond,I hear you!

I think my frustration is, right side heart failure is being suggested because of symptoms, Raised BNP levels, water retention, fluid on the lung.

But the discharge note does not confirm a diagnosis leaving me confused.

Do I, don't I 🤔

[BobsBeat]

Have they mentioned Pulmonary Hypertension? What was your pulmonary pressure on your Echo? PH can cause right sided heart failure. PH can be caused by a variety of issues including left sided heart issues. Regardless, identifying the root cause of the right sided HF like you're trying to do is the right thing so it can be addressed and hopefully your heart settles down.

[LindaLittleBear in reply to BobsBeat]

Hi BobsBeat.

Sorry for the late reply.

I don't recall Pulmonary Hypertension being mentioned. Though the doctors did vaguely mention the lung at some point not really shedding any light.

On reading the discharge note is transpires some imaging I had done for a different issue in Nov 24

a right sided pleural effusion is seen.

All that is conclusive is my triple bypass surgery is holding strong and the left side of the heart is pumping away!

Thank you! 🙏 🙂

[Yumz199725]

Hi linda, aw it's always the way you seem to get more questions then answers when you end up in hospital! I remember when u was in hospital for nearly a week they couldn't even tell me what was wrong! Because they had no idea what had caused it based on what I know now I'm positive it was my valve getting worse! I really feel for you, you have been through alot ❤️❤️!!!. Hope you get some answers soon! X

[LindaLittleBear in reply to Yumz199725]

Hi, Goodness it's all so frustrating. I've just arrived home and have switched my mind off

Phew I'm exhausted.

Love n hugs 🤗 💖

[Yumz199725 in reply to LindaLittleBear]

Glad to hear your home have a lovely rest ❤️ x

[nilmonisikdar40]

Hi there, I can understand why the words of the cardiologist confuse you. The right side of the heart received venous or non-oxygenated blood from the limbs and other organs and pumps the blood to the pair of lungs for oxygenation which in turn pumps the good blood to the left side of the heart which supplies the good blood to the limbs and other organs. The question is why the right side is not pumping the bad blood to the lungs. The answer is either the the tricuspid valve between the right upper chamber( atrium) and right lower chamber(ventricle ) is narrowed causing congestion of the bad (venous) blood of the limbs and other organs causing swelling of the limbs and other organs or weakness of the right ventricle unable to pump the blood into the lungs and causing congestion of the bad blood of limbs and other organs. I hope the simply explanation will help. However it may be more complicated thsn that. Regards.

[LindaLittleBear in reply to nilmonisikdar40]

Hi,

Apologies for the delay in getting back to you.

I've been settling in after hospital discharge.

Your clearly written response has been immensely helpful.

Thank you! 🙏💕

[Jedi14]

I had a similar experience! Following my HA and several tests later, I was told that some part of my heart had died, due to lack of blood flow the heart muscle had died. Given 2 options, I had to decide.

A triple bypass or stents? Before going ahead, I had several questions, some neve got answered, even today. Like what happens to the "dead muscle" afterwards, would it not rot away and other such related questions.

Essentially, the heart is a very clever "machine" at fixing itself. As long as the docs have done their research and made the necessary adjustments, the heart will continue to function even with parts of it impaired! Yes we may feel that we are not quite right in completeness, but the heart will continue to work, with meds etc.

[LindaLittleBear in reply to Jedi14]

Thank you for taking the time to respond.Sending all good wishes your way? 🙏💜