four years ago I felt like a different person… I trusted drs, believed in medication prescribed and did what I was told without questioning … always playing by the rules and being a good human being to others.
that all changed after my own heart issues, I’ve had a lot of time to read research papers, most from top surgeons and cardiologist, really look into how the medication prescribed would help me and why it was being used. How I can help myself before and after my planned operation. Triple bypass, After putting me on 5 different medications all at once with no advice or aftercare…. Feeling worse than I did before the cardiologist prescribed, chasing my own gp with lots of side effects, feeling scared, confused, feeling like a drain on resources.
I won’t bore you with all the details but over 6 months I’ve had a lot of conflicting advice from drs , nurses, one thing after another …. I’m finding it really hard to trust the process and the professionals in my journey…
Not one professional has mentioned my own statistics of complications just given me the national average 🤷🏼♂️I’m pretty sure a normally health woman would have different results to a unhealthy woman with lots of co-morbidities, not one person has mentioned graft failures , or the fact radial arteries have better outcomes than veins from your legs, the fact you can use both mammary arteries and in studies the main drawback is a slight increase in infection or the fact statins can cause so many long term problems …. I really feel I can’t consent to an operation that could leave me with more health problems and drugs than I have already… quality of life over quantity…
I have asked for help with all of this from either my own gp, the hospital with emails and appointments, from the nurses help line bhf, I’ve asked for help and clarity … after all this I’m not asking this community for advice …. But does anyone else feel or felt this way through their own experiences and journey, am I just plain crazy and scared and talking myself out of a life saving operation…
Like I said no advice but just wanted to know if anybody else feels this way?
Hopefully your still awake after reading all this , maybe someone might feel similar… like I said am I the only one with these thoughts 💭 if I get no responses then I’ll know it’s me ..
appropriate response could be…
Yes i felt similar
No your mad
Grow up and stop worrying
Stop wasting my time I won’t get back the five minutes it took to read this
Or maybe something original
Written by
Di1967
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If I hadn't started researching into my various conditions and the best ways to treat them I wouldn't have been diagnosed for some and wouldn't have the treatment and self care that has helped improve my quality of life now.There is nothing wrong , in fact it is sensible , to ask as many questions as possible about your care , as long as you do it in a polite but firm way.
It's particularly important to do this if you have a complicated or rare condition that local specialists or GPs may have no experience of diagnosing or treating.
With some of my conditions I often have more knowledge about the illness than a new doctor does.
It's also particularly important to ask doctors to double check that any new medications will not interact with ones you already take for other conditions, or can be taken if you have certain other illnesses.
If you've read that a drug isn't appropriate in your individual medical circumstances, it's good to have the facts there to prove it, or politely tell them that you had been told that a drug is counter indicated with your health history and could they check again.
I've narrowly dodged some near misses in my time with drugs that would have made my other conditions worse or would have caused bad side effects if combined with what I was already taking.
It's also more important to do this if you have various health conditions , because unfortunately, as you say , a Specialist, no matter how good , will often just follow the standard protocol and only consider the part of your body that they are treating without considering the fact that you actually need to be treated as a whole body , and if you have multi systemic illnesses these need to be taken into account , and standard treatments may need to be adjusted .
If you specialists don't listen , it can sometimes be because of a lack of knowledge, and the lack of experience or professionalism to make them willing to admit in front of a patient that they need to look things up or should speak to other doctors.
But , sometimes it's not because they aren't listening , but that the treatments you are discussing may be very new or unavailable in your area. Certain surgeries , for example , can only be done by surgeons whom have trained in those new procedures. If a surgeon or doctor with those skills is not available then they must answer that it isn't possible , but should also explain why so that you can use your right to be referred for treatment in another area.
Sometimes , the only way to really get to grips with what is right for you in a complex medical situation, or if you are not getting the right help to get a diagnosis is to look up a recommended private specialist in your condition and arrange to have an introductory consultation with them.
Recommended doctors lists are often available on charity websites for your condition.
Often those specialists also work within the NHS and you can ask them to include you on to their NHS patient list for continuing treatment.
A private consultation isn't turning you back on the NHS or a criticism of it's valuable care.
It is actually more of an investment, helping you to get beyond the confusion of how you are being treated or feel.
The consultant will also be able to contact your GP and local Consultant with letters informing them of your appointment and recommending changes that could help you to your treatment and medication plan.
If they are also NHS surgeons they can also let your local hospital know that they are willing add you to their list for care as long as the department are willing to transfer your case to them, or suggest additional tests that you would benefit from , which means the cost of one appointment is worth it's weight in gold in the end.
If you aren't satisfied with the care you are receiving and don't feel you are being listened to or offered all the care options that should be available to you never shy away from making a complaint, or at least politely suggesting to your doctor that if things are not improved or checked that you will have no choice than to make an official complaint to the Chief Executive Office ( if it is a hospital issue) or the local Integrated Care Board ( if it is about the GP surgery , Dentist or Optician). Often just the threat is enough for them to prick up their ears.
If not , follow through with your complaint , as sometimes , it is the only way to get the treatment you need or deserve in a complicated medical case.
You are a grown up so you deserve to be treated like one.
You are not mad if you have the evidence to back up your reasonable questions and requests.
You deserve to be listened to and you always have the right to question or refuse a treatment if you know it's not doing you any good.
If you are suffering side effects from your medication or they aren't working it is a doctor's job to look for better alternatives, no matter what the cost.
Good doctors know that these statements are true and remember that your treatment is a partnership between you and them , they are not in sole control and should not just dictate the terms.
Less up to date and open minded doctors and nurses can learn this with a little polite , well worded, encouragement... eventually!😆😆😆
Never give up trying to get better care , if I had , and hadn't learned what I needed doing and found ways to get them I wouldn't be here now , take care , Bee
My husband was put on the usual cocktail of drugs after quintuple bypass 5 years ago. We both feel he is now feeling worse than before the operation, probably from side effects of tablets. Own GP seems unwilling to take any action but after another unconnected visit to A&E and told his heart rate was too low he is now on an 18 week waiting list. Decided to go private and been told it could be caused by 2 things (one being medication) so having a heart scan tomorrow. I don’t think any of the other side effects have been listened to. So in answer to your question - no you’re not mad, my husband feels similar and everybody has a very different heart journey and different outcomes and responses to medication. I hope you get sorted but it does seem difficult to get something done.
Similar situation to my partner, we noticed his resting pulse was in the low 40's, mentioned to GP ... long story short, taken of beta blockers ( which he'd been on for about 4 yrs after about of Myocarditis), pulse now in normal range.
When a doctor or nurse says to me "This will feel a little uncomfortable" I always ask if they've had the procedure themselves. The answer has always been "No". On one occasion the procedure was extremely painful so don't be afraid to tell them how you're feeling.
I've been prescribed drugs that required regular monitoring over many weeks but was just left to get on with things.
On one occasion, recently, I was given someone else's medication in hospital. I asked what the drugs were and knew them well so wasn't concerned that they'd do me any harm until the next day when I asked why I was back on the original tablets. There was no record of me being given the wrong meds the day before.
A week or so later the nurse arrived again with different tablets to the normal ones but soon realised that they were incorrect, apparently because someone else's notes were in my folder.
In a long working life I made many mistakes myself and accept that these things happen but where your health may be affected it does no harm to ask questions. The more aware you are of what you're being given and why, the safer you are.
Yes good point. I always ask what medications they are giving me. I have a good memory so luckily I know all my 12 meds very well and dosages. Often they have tried to give me the wrong medication.. One nurse tried to give me the wrong medication that would have been quite dangerous. I told politely told her and although she realised she took it as offending her as I think her collegue told her off. Later that day, she gave me a stomach injection and stabbed it in and she said "That was deliberate for earlier"
Good for you asking this. I have a comparatively simple condition requiring a valve replacement (AVR) and I have found my way by prompting everything. Particularly sourcing private echocardiograms, which I am fortunate enough to be able to afford but, without my obtaining evidence that the cardiologist recognises and could not ignore, I am certain that just talking about my symptoms alone I would have been entirely dismissed. Often AVR is asymptomatic and I was very lucky that my GP picked up on a heart murmur that I chose to be proactive in keeping eye on.
I am not over comfortable banging the ‘sexist’ drum, however there is research on how woman are not listened to about their experience of heart related symptoms. This is one of the reasons that heart conditions are thought of, inaccurately, as predominantly a male concern.
Keep searching, keep pushing, keep asking. I would urge you to recognise your achievements on your acquiring knowledge, and accept that it is likely you are the expert in the room, you certainly are the only person with your subjective experience.
I have come to realise that while cardiologists may be very bright and capable of study etc that often does not go hand in hand with good communications skills. Currently, I have one who started out putting me in a fear response and followed it up by ‘gaslighting’ me from treatment, I have stuck with them for now as I managed to get on to the surgery list but after my Op I will be asking for another cardiologist to do my aftercare.
I am of an age where I grew up respecting all Drs and specialists, challenging them is not easy but they cannot know it all.
I question everything. It's my life, my body and my future! I had a cholesterol and liver function test yesterday and told the practice nurse that, whatever the result I would not be increasing my 20ml daily dose of statins In fact, I am seriously thinking of dropping them totally and permanently. The adage these days seems to be, whatever the problem, stick some chemicals in you. Obviously some are needed, in my case warfarin and thyroxine but statins????
After my TAVI my surgeon said that I didn't need an antacid, my GP insisted that I did and prescribed Omeprazole - which should not be taken with my anticoagulant! Later she issued a prescription for Lansoprazole; again my surgeon said it wasn't necessary, but continuing stomach discomfort made me succumb - with relief within 48 hours.
When I mentioned my fatigue to my heart surgeon, he seized on one blood result (that seemed to me to be quite normal) and suggested stomach bleeding, and referred me to a private gastroenterologist, who found "no reason" for my problem. As my serum ferritin was reasonable, he suggested that I might be able to discontinue my ferrous fumarate tablets, so I reduced my consumption, only for my serum ferritin level to halve in three months, leading to an iron infusion. I suspect that I was slotted into a cancelled appointment, as communications were terrible and I got no briefing; when I asked about reactions, the nurse merely said that I would be "fine", but the second and third days afterwards were bad for me. Luckily I had Googled and knew what to expect and do (including pausing the ferrous fumarate for a day or two before the infusion and for several days after).
Given the limited amount of time that a GP can allocate any one patient,there's a limit to how much information they can impart, and assimilating it all within a few minutes can be challenging.
So I Google a great deal, consulting only authoritative websites.
Sorry for your troubles. Yes, I feel much the same way having nearly been killed by the medical profession several years ago. Had I continued to follow their advice I would almost certainly not be here anymore.
I've tried to educate myself as much as possible about my issues so that my reliance on the medical profession is an absolute minimum. My level of trust is zero. The good news is that by doing this I have managed to improve my health considerably.
I have yet to meet a cardiac doctor in this country who seems knowledgeable about, and willing to discuss, women's heart issues. This is despite a wealth of evidence that there ARE differences between men and women when it comes to both symptoms and treatment. I recommend reading two books and arming yourself with as much information as you can. The books are "A Woman's Heart" by Dr Angela Maas and "Sex Matters: how male centric medicine endangers women's health and what we can do about it " by Dr Alyson McGregor. Good luck.
There is a growing acknowledgement that women heart patients encounter problems accessing care.There is an unconscious bias, this has been recognised by the BHF andThe Lancet Women and Cardiovascular Disease Commission Report.
The British Cardiovascular Society is about to publish a consensus document about women's access to cardiovascular care.
Hi I know how u feel I have been diagnosed with AF and on a cocktail of medication one Dr threw in heart failure ,cardiologist wants to do cardioversion GP feels not worth it as can sometimes only last couple of months *(apparently) I do not fit the general criteria for heart issues as I don't drink,smoke am not overweight and exercise regularly (12000 steps per day)so they just talk in all these obscure statements about ejection fraction and other things which are never fully explained but hopefully like u do as we're told and be ok
hello Di1967 , I almost thought I was reading my own story when I saw this . I haven’t had a by pass though , I have been diagnosed with heart problems . On top of which , hypothyroid , fibromyalgia diabetes type 2 and meningioma on the brain . My nurse told me my cholesterol had gone up and increased the dose of statins I was on , within a week I could barely walk , my arms felt like lead weights and I was exhausted . So I opened up doctor google and had a look to see what could be the cause , doctors appointments being scarce. Behold ! If you are hypothyroid or have fibro you should not be taking statins , and a whole list of things it can do to make your health worse . I got a phone appointment with my gp who wouldn’t listen to a word I said ,he simply prescribed a different statin and told me to get on with it . Now I don’t know what to do 😳
I'm quite heartened to read so many replies from people feeling the same way that I do, I thought it was just me.Communication is a very weak point in my local area, it seems that nobody wants to explain, and if a procedure is offered and you don't jump at it like a fish at a fly because, say, you ask a basic question, you're labelled "difficult
My husband definitely feels like this. His breathlessness was passed off as anxiety and cardiac nerurosis by the GPs. Eventually he managed to see the cardiologist who agreed it could well be a side effect of Ticagrelor. He was put on Clopidogrel (7 months after complaining of symptoms) and the breathlessness improved. He feels he has no faith in them.
Hi, I have healthy scepticism regarding Drs and GPs, an alternative view of things can be found through the complementary medicine route! We have been seeing a Naturopath (Herbalist, Iridologist, etc., etc.) very good and helpfull, and having carried out a thorough examination, is able to advise next steps, which may be modern medicine route or a complementary route, or a combination. Very helpful, and it works.
Not unusual 2 gp in my area told me statins do not raise blood sugar levels, when i informed the gp that cardiologist said they did, he sent me a text saying that he had to agree with the cardiologist
you’ve had so many responses, di, that I’m reluctant to add my own … I’m fortunate that have a little knowledge of human biology and how the body works. And I’ve come to realise that although doctors know a huge amount about it there is still much more to learn.
I always go in with a positive view that, if I need medication, then my body isn’t quite doing what it’s supposed to. This gives me a positive outlook and inclines me to welcome whatever I’m prescribed.
I always look stuff up and hope that the sites I use are reliable ones - you can get led down the wrong path though. I remember my sister, who lived in the US, telling me (when I was diagnosed with cancer) about some potion (it might even have been snake oil) that would help to cure me. I looked up the website she told me about. I’m glad to say that I took no notice!
THANK YOU, to everyone who has left a reply so quickly and not judged or dismissed my inquisitive nature or ongoing treatment….. having faith in your drs ability or experience and knowledge when your life and quality of the remainder of that said life is in the balance has become my biggest challenge ever! I don’t want to look back and regret any treatment or trusting my gut feeling . Today is turning into such a positive experience as my youngest has just found out he’s received a 1st degree in computer science from Exeter university I’m bursting with pride and comfort from you all
Looking at it another way, if you need a tradesman, stockbroker, solicitor and yes, a doctor, the odds are that they will be competent. What you will really discover, and you can check in your own line of employment, whatever it may be, is that 30% of employees will be excellent, 50% sufficiently able to do the job in question, and 20% worse than useless! This is across the board, from the humblest of labourers to the highest qualified scientist (excluding your youngest)😀.
Yes I have felt like this. I do challenge what drugs I am given because I do get side effects that make me feel worse. Drs. have started to believe me more.... They have evn admitted they don't know what is wrong.
Di1967, I know you have already had loads of excellent replies, but, yes, you are fully sane! Critical thinking is something which is invaluable but sadly lacking in many areas of society. Don't be afraid to question everything research widely and seek second opinions. Whilst there is excellence in the medical profession there is also fallibility which is not helped by long working hours, short length appointments and the treatment of health centres as profit centres. 20 years ago, when I moved location I found there was a health centre round the corner. I attended an introductory session with a nurse so as to have a baseline for my health and with no warning or information received a brown envelope in the post a few days later with nothing in it except a prescription for Simvastatin! I phoned the surgery to ask what this meant and I was told I had high cholesterol levels. I asked what my result was and was told the total cholesterol was 4.8. I pointed out that I had been told on my rehab course at the excellent London Chest Hospital (now sadly deceased) that the normal reading should be between 4.0 and 5.5 so what they had told be was not true. I moved surgeries as a result and the nurse at my new surgery agreed that there was no need to take statins. I am still very much alive but do wonder if I would have enjoyed the pain free mobility I have now if I had just taken the statins without questioning what they were for. So please do check, as human beings we are all fallible, and when finance and commercial considerations take precedence over health care we need to be especially careful not to just accept what we are told.
hi I had a quadruple 9 years ago . Again given medication but not a lot bisoprol and aspirin. There was help with cardiac rehab when home . But not a lot of advice just healthy diet lose weight . I was 69 female and it was a shock to find I had heart problems. I wasn’t offered an op. They said it was to dangerous so I researched and found a surgeon who said yes no problem. But it was private. Had to pay myself. It was. [REDACTED] he has he own clinic now in London. Good luck Leila
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