Just received a phone call from st barts really random actually, there not concerned even though I feel the way I do they said my scans and holter are very reassuring but I know for a fact my symptoms have got worse it's awful I told them that and they are going to speak to someone for me, they want to keep my appointment in November which is next month but I don't see the point of even going if there just gona sit there and tell me it's not my heart when I know that it is 🙁, I told them about what my local hospital said and they said that they wouldn't be surprised if in a year I will need a new valve and they didn't seem to agree. All I know is I can't keep feeling like this and not getting any where with it ☹️😕. I told them about the migraines and they didn't think it's heart related? Did anyone else preop with bicuspid aortic valve moderate to severe aortic stenosis and regurgitation get migraines alongside palpitations?? I'm beginning to think I'm crazy 😭😭😭😭, I just want answers and all I seem to get are more questions 💔😪😞, sick of being dismissed and treated like I'm imagining everything 😣😖, heart feels like it's jumping up and down in my chest and they don't care how I feel 😑😒😞. Can't keep living like this can't do anything 💔. Sorry for long post just fed up 💔.
Fed up 💔 : Just received a phone call... - British Heart Fou...
Fed up 💔
Hi Yumz
I don't have any answer sadly I just wanted to say I totally get your frustration & anger & how scary it is that you're not listened to.
Not quite the same but our GP has decided she's not happy about my husband's recent abnormal blood tests, according to his nurse the results are a bit weird and there's possibly something going on with his bone marrow. My husband's blood test results have been abnormal for years (even before his cancer diagnosis in 2020) & despite me constantly banging on about them, nobody has ever been interested before now so we don't know why there's suddenly a concern and it's proven impossible to speak to the GP!!
Can I suggest you perhaps phone the BHF nurses and ask their advice as to what to do next?
Massive hugs, I really hope you get some help here xx
It's extremely infuriating isn't it when you feel you aren't being listened to and taken seriously!
That it is, sadly
I have been there many times myself as well!
The nhs have always done that dismiss people's symptoms and portrait you as mental or psychotic the kidney transplant ward did it to me that's why I have aortic regurgitation, hope you can get someone who can acknowledge your symptoms are getting worse instead of saying your nuts and they can help sort some of your symptoms out so your not feeling bad are you still in hospital or are you home now yumz hope you things sorted quick x🙏🤗
hello Yumz so sorry you find yourself in this position - I assumed after your stay in hospital that this next operation was a given and not up for debate? - you know your own body therefore, you know how things have got worse you must keep that appointment in November, sadly I think it’s become a case of as patients we have to do a lot of pushing to get somewhere as well as doing our own research, people have become so knowledgeable because it’s a case of having to be in order to make progress, things have changed dramatically in recent times we no longer rely on the medical profession as much as we did we do our own homework as much as we can - in the meantime I know your upset understandably, but try as hard as it is to stay strong and keep that appointment thinking of you sending hugs 🤗
So sorry to hear this, but fairly typical. They can't find the answer so it's in your head! Good job you know your own body. Nothing more to say except that I feel for you
They always say that don't they when they can't diagnose any particular problem but if you feel fobbed off ask for a second opinion from a colleague!
Hi Yumz
I had palpitations that got worse prior in the years prior to surgery ( I had in May this year)I started reporting them and they didn't seem too concerned either ( looking at scans etc) but as things deteriorated I started logging things ( times of day, type, duration, what I'd been doing, any other symptoms) to give them more facts and when I went for appointments I felt more equipped. This definitely helped and one time they gave me.a monitor for a few days. I have headaches sometimes but didn't ever link them to heart but if I had, I would like you, have asked)
I always found the specialist cardio nurses.at the hospital really good and always listened and gave good.advice.and fed.back or.sought advice from consultants where they needed.to.
I ve had valve replacement now this year and happy if you want to message me.directly.to talk.
Take care and good.luck
Yumz, you are not going crazy. You know your own body. I just did an internet search and literally in a few seconds saw a medical paper with the opening line - 'Migraine is positively associated with cardio- and cerebrovascular disorders and with structural heart anomalies'. Seeing this is a fact, ask why they don't think that it is linked in your case.It is also a fact that people are not getting their valve operations when they should and that doctors are having to manage a queue - as is the case in other areas of the NHS. They may not see you as serious enough yet, compared to others.
You being upset is perfectly natural. You want to be fixed. You want to get on with your life. It is easy for the experts to say take one day at a time, you are not ready yet, but it is frightening living with a worsening heart condition, particularly if you are getting physical reminders all the time.
Have a good cry and beat some pillows up till you feel a bit better. Then you can start to prepare for your November meeting. I would want to know why they think I am not ready for the op and what conditions need to be met for them to put me forward.
I really do feel for you. You are so young to be going through this x
so sorry you’re having such an difficult time 😕 there is nothing worse than feeling helpless and not getting answers, especially when it’s health related. Every little change makes you anxious, and hyper vigilant. You are doing the right thing in seeking advice from the professionals, I think many do not always understand the shock of being told that your heart needs fixing! I had to have OHS last year to fix my mitral valve, when the surgeon told me I was horrified! And until the operation I became acutely aware of every little change in my body. I also suffered with debilitating migraines for many years, and when I saw my cardiologist I asked if these could be attributed to my heart condition ( after all the blood wasn’t going to where it should be) he also dismissed that theory 🤷♀️ however 14 months since my surgery, I haven’t had one painful debilitating migraine. I have had some “silent migraines” with the associated visual disturbances , wavy lines in one or both eyes, which only last 30 mins at most, and I’ve only had 2 or 3 of those.
I hope that your appointment in November gives you some resolution
Best of Luck 😊
Hi Yumz, I was in similar position, post surgery for pace n ablate I knew something was still not right, I persevered for two years pushing all the time at the gps and my cardiologist.I was told I had post surgery anxiety symptoms which i attended counseling but I only attended 4 sessions as I knew it wasn't anxiety making me feel the way I did, I was then was referred to asthma clinic for breathlessness again I knew it wasn't asthma and the asthma nurse dismissed me from the clinic after 4 months of submitting tests all clear, all the time I could feel the cause of my symptoms in my chest around the heart region. I had various tests done requested by cardiology and all was clear, because of the clear diagnosis I was losing faith as no one was listening to me, it took its toll on me mentally and physically for over two years until I seen a young new doctor for the first time and he requested that I have a bnp blood test, turned out my results were 3x higher than the norm and I was then given a echo which showed a low EF.
I was in heart failure and was placed under the care of the heart failure nurses, since then I have had surgery to upgrade to my 2 lead pacemaker to a CRT 3 lead PM as it is believed that the problem for me was pacing induced LBBB and LVSD and now on various meds.
Also been in permanent AF for two years.
All I can say is persevere if you are suffering, I could have quite easily given up, the time it takes and not being listened to definitely takes its toll on you mentally and physically, I don't think il ever get back to full health, still have heart issues and I know I will still have to keep pushing, I do have a degree of sympathy for those within the nhs, the system is broken and those with in nhs are under pressure but keep pushing and hopefully things might get sorted.
Good luck 🤞
All I can add to the other replies is that I am praying for you have breakthrough, someone or someones in the medical profession who will understand and recognise what is going on and have the initiative and authority to get you the new valve and anything else you need, and that God will come through for you.
I know how you feel . When having heart palpitations which felt like my heart was coming out of my chest by the time the paramedics or arrived at hospital my heart was back in rhythm.. I was only by luck I woke one Saturday morning at 6 in 2021 and my daughter got to me to A&E.and they put me straight on ECG nurse did it twice and said don't move you are inAF. She got my daughter to stay with me while she got a doctor . Went straight onto the ward with the large resus bays . My daughter went home . Electrodes attached everywhere . The doctor came and said just going to read your notes he was back and said he was sending emergency AF clinic and cardiologist referrals . Then we talked told him this had been happening since I had jaundice in 2017. My old GP only did in house ECG and diagnosised LVH no medication. He was happy and said I should have seen a cardiologist and put on blood thinners as there was a risk of a stroke.
He asked me my medical history which took a while because I had no diagnosis for my neurological condition then. He phoned my daughter she told me he said your mom has given me the most medical history I have ever heard she said yes she does go on a bit he laughed but said his mom was the same. I was finally discharged late evening and told to come back if it happened again and I wouldn't have to wait to be seen.
Next day Sunday nurse phoned with appointment for AF clinic on Thursday and appointment to see cardiologist on the Tuesday .
AF nurse took me straight off the Amlodipine as my legs and ankles swollen from taking them . But stated me on Flecainide and Apixaban. Went to a AF clinic every week for a month ,then every 2 weeks for a month and then once a month fir a month and discharged back to my GPs care.
The cardiologist I saw was lovely and arrived for a MRI scan on my heart with dye. He like the AF nurse wasn't happy my old GP never sent me to see a cardiologist as I should have been on heart medication for years .Took 2 months for the appointment but mean while the Flecainide and Apixaban helped me .
Don't give up keep telling your GP you need to see cardiologist again and explain all your symptoms. Hope you get the help you need soon
hi I know how you feel I keep getting out of breath when I walk and going hot and clammy and then feel as though I’m going to faint referred to cardiology last October had different tests done got admitted to hospital as an emergency then told after four days I was going home even though I wasn’t well was told I would see the consultant in ten days time to discuss my results that was in January still waiting my gp has expedited my concerns and hers to cardiology no reply phoned them told I’m on a waiting list I feel like screaming and like you very fed up as it is ruining my life look after yourself and take care and you are not going crazy xx
It's not nice is it when you aren't feeling well and you don't get listened to and taken seriously!
Hi I understand how you feel especially as you are so young. Please keep your appointment in November and tell them how you feel, make a note of any questions etc you have before you go. I sincerely hope you get the answers you need. Best wishes 😊🌞🤗X.
Change hosp.
All I would say is Barts is a fantastic hospital, one of the best in the country and my partners experience has been exemplary compared to our local hospital. As suggested, keep your November appointment, right down every concern and question you have and be guided by their expertise. I hope you get the answers you want.
Well let me just say first of all you are very young to be on this site! You seem to have plenty going on with your health, I would keep the November appointment, you might get something prescribed?
Without telling me your weight, would you say you are within the recommended levels? How is your dietary intake, as long as you are looking after these parameters it should'nt be a problem.
Let me also tell you about my 2 work collegues, both got prescribed heart medications and after several weeks were told that there was nothing wrong with their hearts and they should stop taking meds! As the days go by more people are having unusual symptoms which seem to baffle the doctors?
I was born with congenital heart disease bicuspid aortic valve moderate to severe aortic regurgitation and moderate to severe aortic stenosis and soon will need a new heart valve. My weight is within normal levels for my age and height and I'm on 120 mg of verapamil to control my symptoms. I'm 27 in few days joined this forum few years ago x I agree my symptoms were baffling the doctors when I was in hospital they said they didn't know why I felt the way I did but they agreed my valve has significant narrowing and leakage.
So sorry to hear that you have had heart problems from a very early age, I can only wish that things will improve for you with time and treatments. It must me so difficult having to deal with this on a daily basis, now I understand your frustrations!
I can only suggest a new lifestyle, one in which you pay less attention on your ongoing problems and be able to focus on something else, you know a distraction? This is what we are trying to do in our situations, it helps. (That is assuming that you are not in any pain?).
Hi Yumz,
I'm so sorry you're going through this. I haven't been on here for ages because of my own health is awful right now and even strength the to message is too much, but I had to respond to you.
First of all, you are absolutely not going crazy!
I'm so sorry you're being made to feel this way. The way doctors - and the NHS - relentlessly treat vulnerable patients is at times diabolical. The gaslighting, dismissing and treating woman like they're neurotic or crazy is gobsmacking in 2024. Trust me, I live in this battle every day and it has made me feel at times unable to go on. Because it is ALWAYS a battle.
For anyone that may pile on because they've not got complex illness/experienced this and think every doctor is god, obviously there are many good doctors but in my experience the vast majority speak down to and over patients, especially women, and it cannot go on.
I'm sorry I can't offer you any advice in your situation, other than maybe have someone you trust call up and speak for you, because let's face it, you're going through enough, who has the strength to then fight being gagged?
I just wanted to come on here and let you know you are not alone. I've seen many comments the same way. I am very much in your position right now and it is draining. I've been forced to go private many times - though, that's not always better. I recently had an obnoxious, rude gastro belittle and dismiss my dysphagia - a very serious condition that can cause imminent death if not managed right - by rudely shutting me down and telling me that he'd never heard of anyone dying of dysphagia. When I was shocked, he, in a very contemptuous manner, told me not to be rude. The irony! Luckily, I recorded the call for my own sanity at this point, and upon listening back can confirm he's attitude was unacceptable.
When I told my neuro nurse about this, she was disgusted. It's relentless.
We're taught not to be heard, to question or speak up. I really, really hope you are heard. And you get what you need. It's such a minefield going through so much illness alone, and having to fight for everything.
Sending you so much love. 💛
i’m so sorry to hear that you’ve been made to feel unheard. I’ve had a similar situation myself understand how upsetting it really is. I have a situation in the sense that I recently had seven hospital visits via ambulance with severe chest pain I previously have a semi and three stents, but I also suffer with chronic angina due to moderate stenosis One thing that has been very weird this time is there jumping effect that my heart feels like it is ping-ponging around the pain is so excruciating and brings on severe angina. I’ve never experienced pain so severe not even when I have my heart attack I have now been diagnosed with costochondritis which is very similar in terms of chest pain but I paid so severe but it was causing me excruciating chest pain to the point where I would nearly pass out. I would get to the hospital and after having morphine chest x-ray ECG full bloods et cetera everything will come back relatively normal, I could not understand how I could be in this level of pain test come back with just angina until finally I was diagnosed with chondritis I have been what it’s called a flareup for the past eight weeks and the only thing that has relieve my pain due to me being highly allergic to a lot of pain medication is morphine it’s not an ideal situation but it does stop the pain in its tracks and prevents the angina from taking hold and making me ill for days has chondritis ever been mentioned to you. I never heard of it myself until my diagnosis just wondering, you could mention this to maybe one of your consultants, Best wishes
5th valve replacement - ready for the battle!
Aortic Valve Replacement Surgery
Farxiga
Aortic stenosis moderate to severe
