new to this site as I was originally diagnosed with Atrial Fibrillation - 18 months in and diagnosis is now heart failure. The shock and fear followed by feelings of anger when realisation dawned how my primary care person had failed me.
I have, thankfully moved on from the feelings of sadness and fear and realise that to get the help and care needed we have to chase it ourselves....but it does not stop me questioning why?
I have absolute admiration for the cardiology team that took over my recent care and know that they saved my life.
sorry if this still sounds like I am still feeling a bit selfish but I am getting there and would like to hear from anyone else who has recent HF diagnosis and what their experience is.
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Ktomoph_
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Hi there - sorry to hear about your heart failure diagnosis. Atrial fibrillation can sometimes lead to heart failure, so perhaps wires have got crossed somewhere? It might be worth speaking to your doctor to get a clear picture.
We've had a few recent posts about heart failure, which you might find useful to read:
Yes, after early research into my Atrial Fibrillation diagnosis and what it meant to my life I completely comprehend that it can get worse and lead to heart failure.
My feelings of sadness and anger stem from the failure of my primary care person to refer me when I repeatedly explained my symptoms and knew myself that something was not right, not just from how my quality of life changed but by the research I did myself online.
I became house and almost bed bound and because I stopped breathing as soon as I fell asleep, was completely and utterly exhausted by the lack of sleep which put a huge strain on an already weakened heart.
I joined the Healthunlocked Atrial Fibrillation site and tried to make sense of what was happening from other people on that site. So many of them implored me to change my GP!
I do have a positive and optimistic nature despite whatever my posts imply and will continue to fight for survival! Just hoping - as with the afibbers - that I will find positive input and suggestions to keep us all going.
I can definitely understand why you're feeling so let down. It's so important to have a good relationship with your GP and if you feel it's come to the point where you've lost faith then perhaps switching would make you feel a little more confident.
Oh it goes on.......I did recently have the strength to change to a different GP in the practice. Pre changing, I wondered whether its better to stay with the devil you know......
I am now trying to decide whether I have made a bad choice yet again! But, as said, I am beginning to deal with things now and have convinced myself that it is OK to be selfish about this as it is my health and my future that I can change if I make the right choices.....no matter how many....
Hi. It sounds like I've had some very similar experiences to you. Last year I was having the same problem not breathing when going to sleep and then being up all night. I was then diagnosed with AF and heart failure caused by Hypertrophic Cardiomyopathy. It's taken a while as I was moved from consultant to consultant but I finally started getting the proper care 6 weeks ago after a refferal from my GP. They new consultant immediately got me in for Cardioversion to rectify the AF and it worked and is still in regular beat. This got me feeling much, much better straight away and a lot of my resukts from an MRI afterwards improved significantly. I have also two weeks had as another insurance had an ICD fitted. I was very doubtful about whether to go through with having it because of the uplight in my results and health but after having more talks with both of my cardiologists and my GP decided to go ahead. Once it was over and done with I was fine with it. As I understand it, it only really an insurance policy against anything going badly wrong in the future but may never activate all being well. So that the way to think of it. Hope that helps. Steve
Hi Steve after much decision making, and I think the anger I felt that my Afib should not have gone so downhill so quickly spurred me on, I changed doctors, I then called the hospital echcardio dept myself to make my appointment as no-one appeared to be doing so. I asked my GP for 24 heart monitor. I took the results with me to the echo appointment where they were copied and attached to the echo results and given to the cardiologist. I then called the cardio team to ask if I needed to be on different or further medication light of the two sets of results. This was a message.
This morning I received a written response to let me know that in light of the two results they will discuss with me about implanting a biventricular defibrillator.
I suppose what has come out of this is, that if you sit and wait for things to happen, they won't, well not in the current nor appropriate timescale, so get on and arrange or chase it yourself.
I understand when we are at our weakest that everything seems such hard work to do. But time is of the essence! So is research online. Find out what can be done and then chase it.
Well done you for 'getting there'. I hope all goes well with ICD. take care Kay
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