I have my first Follow up appointment on Saturday via the phone. I am newly diagnosed HF EF=17%. My questions are, 1)I need an activity plan as no cardiac rehab. 2)when can I go back to work3)how can I get questions answered when I've called the HF X2 and no one answered4)I was given no discharge advice and feel like I'm winging it5)how can I gage if I'm doing too much when u don't feel ill? 6)when do I need repeat bloods? 7) when will I get a repeat echo?8)will I have FU with my consultant?
Can you all think if any other questions??
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woodygilly1
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Ask when you need your bloods checking and how frequently and who will be responsible for this. If you have begun Ace inhibitors or spironalactone or any diuretics you will need blood test for U&Es. It is usually GP that will do this as they will be doing your repeat prescriptions.
Ask who is going to be responsible for up titrating your medication to optimum levels this is usually done prior to repeat echo to give heart best chance to improve.
Ask for a plan for monitoring and reporting any worsening signs and symptoms who to call.
The website / charity Pumping Marvellous is really good to have a look at.
Thank you, I asked when I got my repeat medications about bloods, and their response was Papworth (that's the specialist hospital) did not say anything!! It's not a good time to be normal sick!!
Hi woody if you are still at 17%ef you should be a candidate for some form of assistance (device ) for your heart. I would certainly ask the question.
As for when will you know if your are doing to much, believe me you will know,
Yesterday I was going to get the Christmas Tree down from the loft and when I opened the loft hatch I realised I wasn't up to it., so it's a job for today !!
Heart Failure Nurses are under a lot of pressure at the moment don't forget you are probably one of many on his/her books.
Just looking at your post I think you maybe expecting a little bit to much from your HF Nurse. Your GP is the person you should be talking to about Work and Work is also someone you need to talk to about Work.
Thousands of people are probably at work with undiagnosed HF so it's not the end of the world as far as work is concerned !!
my ef was 27% after bypass surgery and has improved to 40 ish now with entresto and Bisoprolol etc
Hi prada47 I was interested to read that your ef has improved quite significantly. I had no idea this can happen. I’m 69 a d waited 55 mins for ambulance my troponin level went off scale ,higher than 27000 . I have had echocardiogram and they say damage is mild ( what that means in real terms I’m unsure of) my ef is 43 . No one has told me that it can be raised and if so what must I do.Incidentally I had an awful experience with my heart failure nurse , my first contact after hospital with any one in charge so I came away really upset . I know we are all v sensitive post H/A but I didn’t expect harshness. Anyway I’m very happy that you have improved and sincerely hope you continue to do so. Regards Fynndog
I know a lot of people who have improved EF sometimes with Medication and some with a device like a CRT I think it all depends on severity of HA, reason for HF etc. Personally I am at the Maximum for Medication so should it go downhill it is a device . I am comfortable with where I am at currently I do have off days but I did have off days before so I don't (try] to worry about it.
I am really surprised about your HF Nurses attitude in my Honest Opinion any H F Nurses I have met have been the most understanding of anyone on my Heart Journey. They have studied for a few years to achieve the status of Heart Failure Nurse and I believe they carry the same clout as a Junior Dr in Cardiology !!!
LOL, my cardiac nurse is probably Fynndog's HF nurse or the twin of at least - mine is so harsh she's someone I try to avoid at all cost. I think the nicest way to describe her would be 'brusque'.
The first time I saw her she told me 'No-one could possibly be as bouncy as you but be as unwell as you're trying to claim'. When she saw my stress ECG and echo results she grunted (no really, grunted) and said 'I still think you're too well to be this unwell' and she made me do the stress test again to be sure. I think I lasted a whole 90 secs the first time and 45 seconds the next. More grunts but she telephoned the cardiologist while I was sitting there and said I needed the echo with some urgency.
She's overtly clear she doesn't like me but she is also completely professional about my care. (But I still go around her to the cardiologist's secretary to avoid unpleasantness)
Mine are unreliable, I asked if one of them could be with me for my MRI as I could not have my partner with me due to COVID, they promised they would, then did not turn up! Wow they not as bad as yours though!! Lol
I was surprised when she telephoned the cardiologist with me sitting right there (to tell him I needed another echo with some urgency) but that at least told me while she is a rather unpleasant person, she does recognise duty of care and exercises it. As long as she does that, I'm fine with her being 'brusque' lol!
Thank you for your reply. It’s very reassuring to know that it can go up not only down. I made a complaint about the HF nurse, and I have received so much help from them since. I had been afraid to say anything in case it impacted in me but the rehab nurse told me I must let them know.
I had a few moments of regret afterwards thinking that the nurses are under a lot of strain with this virus but she made me feel so small and unimportant and I really needed her support.
Anyway I got an Angel of a nurse called Mary and I couldn’t have had anyone better.
Hoping you are well and keeping safe. Regards Fynndog
I had very similar experience following HA this April .
I had letter in the post to have FU app with cadiac nurse .2 months post HA.
She told me off for attending as secretary should have cancelled my app . I said she hadn’t contacted me and did she think I would come to the hospital on my own accord if I didn’t have to . She screamed at me and said you have a positive covid test too !!!
I said if she looked at my notes I did have positive covid test in April but had two consecutive negative tests when admitted to aA and E a month after HA.
I was reduced to tears at her harshness . I am a nurse myself and know how to deliver the highest level of care to
My patients .
The care I received from this cadiac nurse was extremely poor.
My daughters wanted me to complain but I didn’t.
Sorry for the rant but it hit a nerve when I read your post .
Hi Emma Laury. Really sorry to hear your story. I’m very surprised that you were spoken to like that being a nurse yourself. We are very vulnerable after H/A and do need a bit if kid glove treatment. I’ve found myself very short sometimes with replies.My HF nurse just seemed not to like me and my daughter she wanted to just roll out her heart failure spiel and did not want interruptions from us. Did not want to answer questions. When I got home I felt so bad about everything I was blaming myself but something snapped . I phone rehab nurse and told her she said I must complain . I did. The person I spoke to was incredulous, apologised abd did everything to make things right. She asked a nurse to come to my house . She came two days ago and a more professional and understanding person I couldn’t have asked for. We sometimes forget that the NHS is not free we and our parents before us have paid into thus wonderful service but we are not beggars waiting on a hand out, we do have a right to civility and tlc. (I think we get it most times the nurses are great)
I will just add that at the moment things are very hard in the caring profession owing to this virus so maybe they are not acting in character .
I do hope you have sorted your problems and are starting to feel better. It’s taking its time I know. Take care xx
Yes I think our service is stretched at the moment with the covid but however busy I am I always treat my patients with kindness which they truly deserve .We all have bad days which this nurse in question might have been having but a little kindness and support is all
I was asking for and didn’t get . Sorry won’t rant again and yes feeling much better now thank you and looking forward to better , happier times ,
I went to Papworth for assessment for ICD but they said it was too risky although the second consultant seemed to be more worried about my BMI than my heart even though it is a local anaesthetic procedure!! I've tried my GP twice for advice and they just keep saying see what the cardiac nurses say!! I promise I've been trying!! It's like no one is leading my care, and assuming someone else is doing what should be done!
Hi Woody I am no expert on this but I know the Cardiologist who " installs " devices at my local Hospital takes patients who are not in great health to a much larger local Hospital to do the procedure. The reason I believe is if something should go wrong all facilities are available !!! Do you have a concern with your personal BMI ( not prying just curious ) as to reason why ICD isn't available !! It all seems strange and I think the reason for that is because I haven't experienced the attitude that you have experienced. My Cardiologist told me he could open my RCA but it would be risky for me , but if Angina returns he would seriously consider it if I asked.
My Heart Nurse has written to my GP to say I fit all the criteria for a CRT device but Cardiologist wants to wait !!! like I said I am at the Maximum for Medication I think the Cardiologist is waiting to see if I improve anymore on entresto or if I have fully stabilised at around 40% ef
I just look at all this as a long game, even though I am 73 LOL I have had a HA Bypass Surgery Further Stents and Heart Failure diagnosed as Severe now classed as Moderate so stick in there it's does get Better Honest.
Hiya, a good place to start would be to ask 1. what you personally can do to manage your heart failure. 2. What support you can expect from him/her, your consultant and maybe your GP. And 3. What is your care plan. Also ask anything specific that is worrying you. This will help you feel a little in control, for me, feeling more in control, helped.
Also consider getting some psychological support, see a counsellor, this can be aviable on the NHS but often involves long waits so if you can afford it find someone yourself. Again it is something that helped me. It is someone you can openly discuss and address your fears with and can help you gain perspective and acceptance.
But remember always this can get better with medication and self care, it just might not feel like that just now.
My EF was also 17% when I was first diagnosed. I had fortnightly appointments which gradually increased to monthly and then quarterly. 3 yrs on it was 2 a yr. I had an ICD 7 months after diagnosis.
You need to follow a healthy diet and build up exercise slowly. Take your tablets they will eventually do their stuff and improve your levels - along with the diet and sensible exercise. Walking to start with as I imagine you are exhausted. Don’t try and run before you can walk, if you overdo it you will take longer to improve.
Work wise - pace yourself. Concentrate on getting your energy levels back. Nothing is worse than trying to overdo things and then finding yourself so exhausted you can barely stand, let alone think clearly! Having said that you are a lot younger than me.
I basically follow the BHF diet - lots of veggies, salad and fruit. Healthy carbs, pasta & rice, pulses. I’m not going to pretend I never eat a roast potato or occasional nibbles, but it’s usually new potatoes (no butter) fresh veg or salad. Lots of smoked salmon, tuna and smoked mackerel. I put seeds & pine nuts on my salad. I measure a tsp of olive oil for any salad dishes.
Obviously when away on holiday or eating out I just have to make sensible decisions but do go mad occasionally! My weakness is a sweet tooth when I get tired but then I have a small dish of low fat yoghurt with a teaspoon of honey or jam as an occasional treat.
Sorry to hear you have had such a tough experience. I was diagnosed with HF (20% EF) just over a year ago, and the care in Newcastle has been excellent - although truncated by COVID which put a stop to rehab classes.
Talk it over with your rehab nurse, (as well as your GP); they have more detailed knowledge that most GPs, but try and do some exercise, like walking a little further each day. The BHF foundation has lots of useful stuff, advice and videos.
They said to me, get out of breath, but not so much that you can't talk. I find raising my arms sends my BP and heart rate crackers. I have just had a CRT pacemaker fitted, and I am finding stairs and hills much easier.
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