Hi anyone.....
I have recently been diagnosed with heart failure (what a horrible term). My head is spinning with information and I am feeling scared, angry, lonely and a bit sorry for myself.
I spent last week in hospital and had far too much time to read a lot of negative stuff on Google, I'm at home now with my family and that feels much better but still feel very unsure about what the future holds.
Just wanted to put my message out there.
Please don't Google anything, the info is usually completely wrong. Use this site & the heart failure charity called Pumping Marvellous for all the info. The first thing to take on board is heart failure is not a death sentence, it just means your heart needs a bit of help pumping which medication will help with & theres no reason why you shouldn't live a normal life with a normal life span. My husband was diagnosed in 2012 with heart failure & there are lots of people who've lived 20/30 years with it. If you haven't been already been referred, ask for referral to a HF nurse, they're invaluable for support, medication etc. By the way, the Pumping Marvellous charity have recently had a poll regarding the name "heart failure" it's such a negative term!! If there's anything I can help help/advise with please ask or private message me.
Hi Lezzers
Thank you for your response and positive words, I know this is something that can be managed but it is still a shock as I was completely unaware that there was anything wrong with my heart.
I hope to have a long and active life and sharing this with other people and getting feedback is really helpful.
I hope your husband is doing well and continues to do so.
Thanks
I think a lot of people don't realise they have a heart problem. I was taken into hospital last year with food poisoning and had a heart attack while I was in A & E, ending up with a quadruple bypass. That was eight months ago and I feel perfectly fit so keep positive and I'm sure you will be ok.
Lezzers I agree, I dislike the term Heart Failure too.
I was the patient representative at our local CCG when they commissioned the community heart failure services.
I asked for a more positive and hopeful term to be adopted. A clinical team to include a clinical nurse specialist, psychologist and cardiac rehabilitation and lead Cardiologist with an interest in heart function improvement.
The CCG listened so 4 years ago the Heart function improvement service as above was established.
I am award that other areas are now using this term as well.
Thanks for your recent advice New to site and this form of communicating
Anything you need to know, the answers will be here. If not someone will know where to find it.
Hi.feel let down by my G.P not doing any heart investigation after 2 years of reporting short of breath .Can I go anywhere with this complain or go further anybody gone down this route ??
Hi Sanpedro
Really sorry that you have been let down by your GP, If you look online I am sure you will find somewhere to take your complaint, just be careful that this does not cause you extra stress/worry as the most important thing right now is too keep calm and positive
Good luck
Thank you for your advise will take that on-board
Maybe you could discuss it with the surgery practice manager.
Will speak with the surgery .I believe I can obtain my health record for past 3 years ?? And do some checking
I believe you can see copies of your medical files but the surgery will normally charge a fee for this. I totally understand your anger, my husband is in the position he's in because of incorrect diagnosis. However, as bigredhear has said this could be very stressful, so maybe a good idea to have a plan as to what you want to do with the information, how far you want to go with it & what you are hoping to achieve.
Thanks again sorry to hear about your husband .I will think about what you have said and bigredhear and makes notes
Thank you for your reply .I will do what you suggest
In the current situation you would have three years to make a complaint. I personally would not discuss it with the practise manager for forewarned is forearmed. I would ask for a disclosure of medical records under the Data Protection Act (See igt.hscic.gov.uk/KnowledgeB... Read the advice document carefully and try and fit into a not too demanding reason for the request, There are only two reasons for rejecting your request: -
Two Reasons why access could be denied!Before the patient’s health records are released to the patient or theirauthorised representative, under the DPA 1998 the GP should ensure theyhave checked them so that the release of them wouldn’t cause the following :-1. Where the information released may cause serious harm to the physical ormental health or condition of the patient, or any other person.2. Or where access would disclose information relating to or provided by a thirdperson, this would not be a health professional who had not consented to thatdisclosure. (Further information on third party disclosure can be foundon page 11).Under the Data Protection Act 1998, these are the only two reasonswhere access could be denied or limited to a patient or their authorisedrepresentative.
Finally, if your claim is with the GP - keep it with the GP. It is easier to go that way and keep it to the peron you have a problem with. If you complain about the heart surgeons that could take it up another level and could affect your on going treatment - it should not do that but it could.
Outcomes take anything between three to ten years to resolve and they will deny every way - even with hard and fast evidence. If you want to do it properly you will need a solicitor specialising in medical claims but watch the ones advertising on TV for any compensation will be less their cut. NICE is a hospital based help line to assist you in your well being where they can give relevant information. They are slippery eels and the process will be difficult but if you feel aggrieved, then you must follow your own heart. It will make you feel frustrated, a liar, a cheat, worthless and a burden to your family, but the latter are about the only people that will help and sustain you in your journey. Again, what do you want to achieve? Money or a promise it will never happen again. If it is the latter, I would approach the British Medical Council and make your complaint to them and not the GP surgery. My main concern would be for the negligence never to happen again, which could be much less stressful for you. I wish you good luck and hope you are planning your return to a healthier you.
Thank you for your informative advise. I shall think deeply the whether the effort would end satisfactily. I Will check out the details you have sent me and discuss with my family. Will be trying to get back to a healthy way of life
Hi I had the same problem diagnosed with a DVT after long haul Australia flight they do e an ECG and all 3 doctors through out the say asked if I'm still working do I drink and smoke but all they said well put it on your files nothing else said went back to same GP that dismissed my DVT and was proven wrong at blood test same doctor sent me for ECG as hospital put no reports in turns out I had left bundle branch block on ecg, he dismissed ecg saying you've deffo not had a heart attack, alot off people have left bundle branch block left it at that spoke to heart foundation and a cardiac nurse I know both said your GPS wrong not to investigate, I went for second opinion at another go he said both parties was right what they told me underlying heart condition they was correct 18 months on I've been diagnosed with mild to moderate left ventricular impairment so there you go don't always trust what your GP tells you go with your heart. Hope this help you Phil
I had a heart attack/cardiac arrest in December 2018. Echo while in hospital suggested low EF and follow up Echo confirmed this - so I officially have Heart Failure.
The phrase Heart Failure is a terrible term, when I was first told this I felt destroyed. It should be called Impaired Heart Function (which is what it is) rather than Heart Failure.
As Lezzers has said, don't Google anything, it gives all the wrong answers, many of which are years out of date compared to where the medical science is now.
I have New York Health Association Classification - Class1 - it's on all my medical records so it must be true! The reality is that I'm fine, I'm going to the gym in Cardio Rehab twice a week and feel really well and doing everything I want to.
There are tons of good advice on here and the NHS main site has some helpful entries that explain heart failure.
I felt like you do when I first heard the words Heart Failure, but the more you learn about the subject you'll realise that the future is a lot brighter than it looks to you right now
Hi Spirit
Thank you for your response and kind words.
Its such a shock to be told this when I had no idea that I had heart problems. I am going to stop using the heart failure term because as you say it is not correct
I haven't been to cardio rehab yet but cant wait too start my normal activities again and feel like I have some control over my health.
I feel better already by sharing this and getting such good feedback
Thanks
The Rehab people are excellent, as well as the gym sessions there are a number of educational sessions on the various aspects of heart conditions, and they're very helpful in answering any questions you have.
On booklet produced by the BHF called Your guide to heart failure, has a wealth of useful information - paste the link below in search engine to view the page
bhf.org.uk/informationsuppo...
Thank you.Just ordered a copy.Took 2 minutes.These comments have been so interesting and informative for those of us with HF. Jen xx
You're welcome.
The staff in cardio rehab handed me this booklet once they'd received a copy of the letter from the hospital confirming I had HF. It's one of the best and most comprehensive booklets the BHF produce
Most of the people on here felt that way at first. You have been through a traumatic experience and it will take time for you to come to terms with it. Talk to your other half and your close family. Ask your GP surgery and the hospital if there are any support groups in your area and join in with them. There may be a cardiac rehab team in your area that can give you medically supervised exercise and advice to help you through this. People on here are very helpful too.
My husband was diagnosed just a month ago with "heart Failure " yes its so scarey. We were in America when he took bad unexpectedly.
So eveything was new and amplified due to lack of knowledge. Being abroad didn't help so far from home.
I came on this group for support as you don't seem to know a lot of people with heart condition experience and people get shocked and embarrassed to talk About it as the think like I did , that it ia the end.
However my husband is on meds , he been seen at Barts and their is an improvement. Not completely yet, vut its all still quite new. We can only do like everyone else and follow the routine set out by medical staff.
Its not as bad as it sounds Big red. Reading through these stories/experiances will help you.
Best wishes - well wishes.
Hi Big red.. .... I fully understand your shock and as everyone else said the term itself sounds such doom and gloom.
I too have HF and was diagnosed with this when I was 33.... now 24 years later I am still here... holding down a full time job and living a full life. There are some things I can't do ( walking up steep hills for example) but in the main I try to keep fit and healthy and am fine.
Although I fully understand your shock.. it's like grieving for your good health... however I look at it this way. I feel very lucky that my heart condition was found.. and so they could give me the necessary medication to keep me well. You hear of lots of people that weren't aware of any heart condition that suddenly collapse. So it's good that they are aware.. and can treat your condition with HF there are differing degrees of this condition which are categorised as mild, medium or severe. So it would be good to find out which category you sit in as this may also be a help.
Saying that I was medium for many years and 2 years ago moved to severe ( so had a pacemaker fitted) and am still doing fine walking around 8000 steps daily.... working full time and going out and socialising. So there is life after this diagnosis... and a good and happy one. For me I believe it's important for me to do everything I can to keep well so I have a fish and chicken diet with lots of vegetables and salads. I eat honey from a beekeeper as I was told y one of the heart specialists that this can protect the heart and sometimes can help improve it... and it's natural, so no side effects ( so off I went and found a nearby beekeeper)
I stopped drinking ( you don't have to... but I just thought if it doesn't do any good for the heart why do it... and I am now hangover free.. and more money in my pocket. I walk every day ( so fitter than I was when i was younger!)
I also ensure I always take my meds and discuss my condition each time I see my hospital doctor.
Make sure when you go see the professionals to write a list of questions to ask... you don't have long with them... and it's easy for the mind to go to mush while you are in there.. so if you write your questions down it will help make sure you get everything answered.
So welcome to the wonky heart forum and trust me there can be a long ... and happy life after diagnosis. Do let us know how things are as you get more info... and always feel like you can come on here with questions... a rant .... or to tell us good news too. Karen
Hi Heartlady,
Thanks for the reply and too everyone else, its comforting to know I am not alone.
I think my diagnosis is moderate HF with a 40% EF.
Yes it feels like I am saying goodbye to the old me, this may not be a bad thing as I needed to make changes in my diet with food and drink, for someone that did a lot of socialising in the pub it's going to be a challenge to dramatically change my habits but one I will take on board.
I have always been quite active so am hoping I can still do the things i love like long walks, golf and swimming.
I have been prescribed quite a cocktail of drugs, bisoprolol furosemide lisinopril spironolactone & warfarin.
Does anyone have anything to report on any of these drugs?
I want to thank everyone again for all the replies and I'm pretty sure I will be posting a lot on here
According to Dr. Google we should all be dead in a few years. I'm not planning on that happening any time soon. My EF is only 10%, it was when I was diagnosed in August and still was in February. Got my pre-op assessment on Friday for an ICD. I am still working, although only on 75% of my normal hours now, but carrying on as normally as possible. Keep positive and everything feels so much better, even on the really bad days.
My husband has an ICD, so glad he does. It picked up he'd had 44 self terminating vt's. It's good that they srlf terminated but now we know he's been put on bisoprolol to stop them happening. He had previously had a cardiac arrest, do the ICD is he's guardian!! 10% is low, I hope you stay well
Yes I know how it feels. You must stay positive not negative. We have been dealt with these cards and we have to accept them it is very hard .A new beginning is what we have to think .we have another chance .Take it and do as much as possible
I have previously said the following on many occasions: - unless the web site is backed by the NHS, do NOT trust the results, they can be old, unjust, unprofessional and down right dangerous or even worse, a money making scam with little or no consideration to ones actual health or regard for the truth.
Now the main reply: - A year last Sunday I had a mild heart attack and after thorough tests I was told I had serious blockages to my arteries to the heart and was kept in hospital for further evaluation. They tried stents that could not be done because the blockages were too advanced and any disturbance could cause further complications with pieces breaking off and causing fatal heart attack. That was a low low period! However they said thet had I not lost a lot of weight during the past year (now 11stone 6lb) I would not have survived the HA and since I was now suffering stress related angina attacks which later transpired to be too many visitors....................I was placed on the urgent list and had a triple heart bypass three days later. That was a year ago and I feel fine, still the same weight, still on a careful diet and with the exercise I get, have probably never been fitter. I believe the success of all this is because I have remained positive throughout (even although it was difficult - but I had a wife that also needed me to be positive so was obliged to keep a stiff upper lip whilst she was visiting. We both benefited from that and perhaps I learnt to actually become 100% positive. Further more I did everything they asked of me and have never doubted their professionalism or my will to get better. If someone says they were not scared, worried, concerned, or doubtful being faced with this or something very much like it, I would say they were probably dead already! It would be a very strange person that was not afraid of possible inevitability but now a days surgery is so advanced, they do actually perform miracles. Good luck, there are many helpful folk here if you need input or a shoulder or just to say Hi........"Always look on the bright side of life"
I agree with others. Ignore Google. I used it and that was a huge mistake. My diagnosis is quite recent so I have yet to start cardiac rehab but I have a nurse, well two at first in error, who is/are excellent and very reassuring. Also this forum has been a great help
Hi Bigredhear
My heart failed ten yours ago and I'm still alive. Try to forget about it and enjoy your life.
Take care
C
Respected Bigredhear,
I too was pretty scared wen I was diagnosed with HF. I started reading each & every post in Google relevant to HF and became more worried / scared.
Since I had symptoms of shortness of breadth & extreme fatigue at that time and in as much as Google was certain that there is no end to the sufferings, I became more depressed and thoughts of committing suicide was devoleped.
During my next review I just asked my cardiologist, 1) how long shall I live? 2) When my quality of life shall improve?
The reply was that I'll live for another 20 to 25 yrs ( Iam 60 now) and the symptoms will go away improving the quality of life within 6 months.
Yet I thought doctor wants to keep up my nerves hence has assuaged my feelings by a positive reply.
But amazingly, within 6 months I had become almost normal and now it's upto ALMIGHTY to extend my life.
Hence, my humble request is 1) Take medications as prescribed 2) Don't miss follow ups. 3) Excercise as suggested by your cardiologist 4) Cut down on salt. ( Within 3 months our taste buds gets adapted and half salt sounds good) 5) limit your fluid intake as advised by the doctor ( if required) 6) Don't smoke or consume alcohol.
And that's it to ensure a normal life.
All the best
Hi Vivi2711,
Thanks for the positive post, I am at the beginning of this journey and after reading all the replies i feel i am not alone which is a big help.
Some lifestyle changes will be easier than others but i am determined to stay alive and enjoy my life.
I have quite a lot of follow up appointments to come so i will keep everyone posted.
Thanks
I agree with all of the above and the term failure is misleading. HF can be caused by many things. Heart disfunction or something similar would be better as the symptoms can be treated whereas the term failure leads you to think - my heart has failed, therefore won’t go on. Nothing can be further from the truth. Keep positive and ask questions of this group. Don’t google!
Newly diagnosed with Atrial Fibrilation
Newly diagnosed with Hypertension 1
Newly diagnosed - the 3A's
Newly diagnosed with AF
Newly diagnosed with cardiomyopathy
