Hi all
I wondered what kind of aftercare you received upon leaving hospital . I was in 2.5 weeks. Having severe hf I thought more would be said to be prior to discharge. Nothing was said about diet, exercise etc only told breathlessness was a sign to stop -Duh! One one appointment with Hf nurse and 2 conversations with her on the phone . Nurses have came and taken bloods. I’ve no idea when i have to see the consultant again. So feel a little dropped
Hope whoever reads this is doing ok
Hi. Have you any symptoms or pressing issues that need addressed? It is not easy during this time but I am sure if you need urgent help or advice calling your GP is an option.
Hi there
I was in hospital with my HF for 3 weeks this was 6 hrs ago mind you.On discharge I saw HF nurse every week for about 6 weeks or so then was discharged from their care as everything was going well.I also attended about 4 Cardiologist apts spread out over a year or so.Also had 2 echocardiogram done within that time.Then I was discharged from their care as well.Five years on I am doing fab,Only have tired ness now and again.When I first got out of hospital I could hardly walk without feeling tired.At one point they considered heart transplant.But I was on all the right medications and each day I got stronger.As for diet they said to cut right back on salt.And to go for walks but make sure I had enough breath to get back.Hope you begin to see improvement.Stay well
Thanks for sharing ! I’m so pleased to hear of your progress. I’m seeing the HF nurse too but not to see consultant for another 3 months which seemed strange to me considering the severity. And with the scans being the main way of measuring progress in my IR I thought I’d be getting one every few weeks. They said to me we hope you can get back to ‘normality’ in 4-6 months but I fail to see how that be the case without seeing them - I want to try and get back to work but with a 10ir am I being over ambitious. As you can see I’m not patient a patient ! Like I said before I’m really pleased you are doing well and avoided a transplant etc
Hi, I fainted in the doctors and as they thought it was a heart attack, sent to a south London hospital where I was discharges after overnight & a blood test which showed it wasn't. Six weeks later I had an appointment at a chest pain clinic where I was told my a nurse that I had HF & that my doctor would give me beta blockers and I would have a cardiac consultant appointment in 6 weeks. It took 6 months before I saw a consultant who scared me silly as talked about heart operations without explaining why. He took me off the diuretic & said he would arrange a cardiac assessment nurse to give me diet & exercise advice, if I wanted it.
It took a further 9 months before I saw a cardiac assessment nurse & in the meantime had a stent for a minor furring which led to a VT which led to 10 days in hospital & an ICD/pacemaker. The ones in the ward who had a stent in after a heart attack received a visit from a nurse who gave advice & further appointments, I received no visits or advice apart from not to lift left arm above shoulder for 6 weeks. Any information I got was when my sister picked up BHF booklets. I saw the consultant the day I was discharged for the second time and he was just showing students around.
Since then I had the one session with cardiac nurse for exercise before lockdown. All the treatment was with one of the premier health trusts in London for heart conditions.
I now have developed AF and had a jelly scan two weeks ago with an appointment at the cardiac ward tomorrow which I assume is to tell me the result.
It will be interesting to see if they follow the covid rules this time.
I can understand why you feel dropped, I have felt it since my diagnoses for HF too & more so since the pacemaker.
Thanks for sharing - sounds like a really frustrating experience - again with the severity you would think more hands on? Also anxiety and stress are clearly not great for your heart too so feeling dropped is counter productive. With so much mid information online etc its all worrying. Good luck with your appointment tomorrow, please let me know if you feel like it.
Here is my update then. My condition is worse as heart rate now 31% when it was 37% 18 months ago. Cardiac nurse said due to wrong medicate & I had the stent in too early, as in there was no real need.
The notes said Clopidogrel to end in August instead of October as wrong date of stent
She had nothing about the AF until I told her so she disappeared to consultant who was angry as pacing unit knew just didn’t tell anybody.
I have to drop the Clopidogrel and take blood thinners & extra dose of Bp tablets.
She said pains in chest muscular & not to worry
Easy for her to say.
Sounds like a really frustrating day !! So basically due human error you are worse . I find ‘don’t worry about ‘ comments annoying too
It is 4.30 am and I have had little sleep. My acceptance of the blunders in my treatment have gone from acceptance to anger. I had about 30 mins sleep in which I had a recurring nightmare about having a heart operation whilst still conscience.
This I put down to the experience of the ICD insertion. Whilst waiting for the op, others in the room said I was lucky to have this particular surgeon as he was the best. He came in and spoke to me, said his name and that somebody would take me in the theatre soon. As I was wheeled in, I mentioned that I had not signed a consent form which sent them into a panic as the surgeon should have done that.
Once inside, the staff started to high five each other shouting they were the A Team, The number Ones.
Nothing was said to me and I was given an injection in the shoulder and then there was a terrible pain as he immediately sliced in. I yelped and he asked if it hurt. I confirmed his stupid question and he injected me again, which I felt. Again, straight in with the cutting which caused be to yelp again. He sighed & said he would give it a couple of minutes.
He carried on after checking this time. All this time there was banter going around with the others.
After a while my heart started jumping out of my body several times. I yelled out and he said to somebody,' oh I don't think he likes that' I was so shocked as he kept doing it. I didn't realise that he was testing the device. No apology was given.
He then had problems with the leads which he discussed with the nurse.
He then suddenly said to bandage me up as I was bleeding rather a lot as they had been given me blood thinners for the last 8 days.
Then he was gone, rushing out. The staff nurse said he was off to catch a plane as he was going to get a New Zealand passport. She said he already had his South African & British one so I asked if he wasn't a secret agent instead. I asked how long had it taken and she said he was fast, 75 minutes.
I was strapped up tightly and had a large cold compress on the wound as I was
bleeding so much. Unlike others in the waiting room who rested and then went home, I had to stay two days in hospital due to the massive bruising all across my chest, down my left side & arm. They gave me morphine but unfortunately it does not affect me so they gave me Tramadol which dulled the pain.
Five days after I travelled to Bristol with my sister to recover & leading up to Christmas but I ended up in the local hospital twice. Once was due to the pain from the bruising which lasted for 6 weeks which they said was muscular skeletal ( still get it ) and the ICD/pace maker sort of 'pinged' which the technician in A&E said was a daily test which I was unaware of. He also said he wished he could adjust my settings but as I wasn't his patient, he wasn't allowed to. He said that was why, perhaps, I was experiencing fluid retention & bad breathlessness for the first time. (he was wrong, it was because I had been taken off of diuretics and was slowly filling up).
I felt I had to get this off my chest as I am pretty stressed now and losing what little faith I had in the hospital trust which has been treating me and my GPs who have been less than helpful.
Stay safe.
How awful. Try to see a psychologist about this. This type of trauma needs serious help, as your psychological health is also at risk.
Also think about a 'very serious' complaint to the hospital director and your regional hospital trust.
Meenzer what a horrific experience, nothing about it seems right. The old saying about a car being a Friday afternoon one seems to fit. I totally agree furi_iki speaking to a counsellor would help . I still suffer a bit of ptsd after an accident a few years ago but counselling definitely helped. It may help you either find a way to cope or convince you to take things further and complain. That may lead to more frustration though, but might be the focus for your anger that you need , giving you an element of control again. The nhs has definitely a split personality for every fantastic experience there is a terrible one. The ego of consultants and staff and not taking job seriously is unforgivable. I really hope you have a better day today , but again , think about Counselling.
Hi. I was given lots of the British Heart Foundation literature by the heart failure nurse before I was discharged, including one on diet. I also had a check up with my GP a fortnight after leaving hospital. At my first visit to the cardiologist she said that walking was one of the best medications so I took her advice and now try to do 10000 steps each day!
I can remember how awful I felt when I first developed the heart failure but with medication and exercise I was soon back to doing all my old activities and I hope that you will be too.
Ann
Thank you Ann that’s really positive
Hi the heart failure nurse gave me a booklet today,Your Guide to Heart Failure, 18 months after first diagnosed & she has discovered their cock ups in treatment.
You couldn’t make it up !! Unbelievable
Hi. Covid has definately not helped and I was feeling the same. Meant to get rehab assessment but appointment cancelled and a phone consultation. I was very clear with them that I still want proper assessment, told to contact them when lockdown over to get appointment. Phonedclastcwerk not quite up and running yet. Cardio nurse phone consultations but I or my GP have called her a number of times as we have had problems getting my meds right. Dont be scared to phone her to ask advice. Seen consultant in February after coming out of hospital and told would see him again in October, however with all meds problems I told my GP I was going to e mail him asking for appointment and the MRI scan I was supposed to get. GP said she would contact him.result MRI following week and seeing consultant today three weeks after my conversation with GP. Moral of story take control of your health and dont hold back if your feeling neglected by the health professionals. Pat xx
Ps I have found BHF excellent and have read loads on their website and get other perspectives to discuss with cardio.
Thanks for sharing- Totally agree pat - I’ll be contacting Hf nurse today - I feel clarification is important - really don’t want more anxiety
Go you. It is your body, your health, your life. Xx
I have just been discharged after spending 3 weeks in hospital with HF,I have been ill since April with fluid building up in my legs and abdomen,and consequently ulcerated leg,and then pneumonia,GP has been a total disgrace,taking 4 weeks to give a 3 minute fob off appointment,thank god for the practice nurse who has been looking after my leg and when I became really ill went and grabbed the GP and insisted on a face to face appointment,consequence of that I was send to the emergency unit in hospital where I was treated with intravenous diuretics and antibiotics,have now been out 4 weeks but with no help whatsoever,I was referred to the community heart failure team by the hospital, who have now told me I’m not a candidate for the heart clinic,so basically just been abandoned,GP completely useless,sick of this rubbish.
I'm the same had one outpatients appointment with my consultant I thought they would do follow up appointments after say a year after having my heart attack no he does not want to see me anymore but said I can contact him or cardiac Rehab if I have any problems.
Heart failure 
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