I have this last month found out I am in Heart Failure. I had a SCR last January, I think this must be the cause of it. I am on max does of Entresto, Solatol, and Spiralactone. Is any one out there that are on similar Tab’ and how are you coping ? Any advice would be very welcome.
Heart failure : I have this last month... - British Heart Fou...
Heart failure
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tezzatowns
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Hi tezzatowns, sorry to hear about your HF, are you currently in hospital? being in HF is usually an acute event. My husband has chronic HF. He's currently on candesartan but his consultant is trying to get him on Entresto if they can get his blood pressure up, Entresto is proving to be very effective for HF. Unfortunately he can't take spironolactone due to potassium issues. Sorry, I don't know what SCR is.
New one on me. The only time I have seen SCR is for serum creatinine which is one measure of kidney function. Kidney issues can cause various heart issues including HF. So wonder if there was a kidney event?
Sorry wasn’t aware that most people didn’t understand what a SCA was. It’s a “sudden cardiac arrest”
No worries, CA if frequently used for cardiac arrest. The problem you referred to SCR and I was trying to solve the meaning. Lezzers' husband has heart failure and I am sure she will be able to advise.
Thanks Michael, have learned so much about HF in Such a short time so glad I decided to write. Best Wishes to you
Hello Lezzers, is a SCA sudden Cardiac arrest. I was ok after the event but over the last 9 months I found I was more breathless and couldn’t do the thing I used to. Cutting a story after a few test etc etc I was told I had Heart Failure! I was quite shocked, I thought the Bisoprill etc was pulling down after a discussion I was told the best drug I could have was “Entresto and be monitored. I was put on a low Potassium Diet because the spirolactone. Was holding the Potassium plus the Entresto would hold it too, and would eventually damage my Kidneys. I’m still mobile and hope to maintain it as long as possible. You can get a medication to help your body get rid of the excessive Potassium but I was advised to try to adjust my diet instead. Which is quite difficult to do believe me.
Hi tezzatowns, my husband also had a SCA after a heart attack over 20 years ago. That left him with a damaged heart and he was diagnosed with HF in 2012. Heart failure is a horrible term, it doesn't mean your heart is failing it just means your heart needs help pumping, that's where your meds help. If you're able tolerate Entresto it really is the best drug around at the moment. The low potassium diet is very difficult, they were going that route with my husband but decided to take him off the spironolactone instead. Have you been referred to a HF nurse yet? Are you retaining fluid? Do you need to take the spironolactone? Could you take an alternative that doesn't affect your potassium and then you could get off that diet? Sorry, too many questions?
There are a couple of a websites & closed facebook groups that are great for support & info. One is the patient led HF charity called Pumping Marvellous, the other is sudden Cardiac Arrest UK, I highly recommend having a look at them both & maybe joining the group's. Bear in mind anything on Google is likely to be completly wrong unless its the 2 websites I've mention, the BHF or NHS website.
Sorry it's a long reply, but please try not to worry too much, there is so much medical research going into HF, there's another med that's showing good results that's going to be licenced next year. There are people that have had HF for 20+ years, they're very much living normal lifes, working, going abroad for their holidays etc.
If there's anything I can help you with, please ask away or you can PM if you like.
Lesley
Thank you so much for your reply Lezzers. You have lifted my spirits enormously. I was under the impression that my Heart was literally “Failing” yes I tolerated Entresto was a little difficult for the first two weeks but fine now. Yes I saw a Nurse Practitioner two weeks ago but I had so many questions I forgot half of them. But never mind I see her again this Monday so much better prepared after your message. I was puzzled with the spironolactone but I was put on it after my CA plus’s Ramapril and bison’ and warfarin. No I’m not retaining fluid in fact I am loosing weight because I’ve cut most of the Dairy products out, nuts dried fruit, and seed which I used to have with yogurt. I drink rice milk now and, well it’s very difficult. Again thanks. Best wishes to you and your Husband. I will properly ask for more advice I hope you don’t mind.
Ask as many times & as often as you like. I know how we felt when we were told my husband had HF, it helps so much to know others in the same position. One suggestion I would make is, write down anything you want to know as you think of it. Take the list of questions with you to your appointments & write down the replies. Also a good idea to take someone with you if you can as it can be hard to take things in if you're on your own.
Ps: do you know what your potassium level is? Ask that you be copied into all correspondence between GP/cardiologist/nurse and that you be given all blood tests results. It means you can take control of your condition and understand the whys & wherefores of your condition and treatment.
Hello Lezzers, I had my meeting with a Nurse Practitioner, regarding my condition and the Spirolactone that I am taking. The out come was that I needed to Double the tab’ to 50 from 25. Quite shocked really, I told her the low Potassium Diet is a bit difficult but now it seems that I will need to be more vigilant in what I eat. The only good news was that after Blood test my Potassium levels had come back in the normal range, seem I will need to keep to the Diet. Certainly don’t want to damage my Kidneys got in enough going on as it is.
Hi tezzatowns, good to hear your potassium is within normal range again. Sometimes the results are corrupted by transportation of the blood or if you made a fist with your hand when the the blood is being taken, both can give a false high reading. Do you know what your level is now? I assume you're having another test in a week or so? Spironolactone is one the triple therapy meds that is prescribed for HF, the others being an Ace (meds ending in pril!) & beta blocker. My husband was originally on lisinopril but was moved over to candesartan (Arb). Did the nurse discuss the possibility of an alternative to the spironolactone?
My level was 3 1/2 she said I must have worked hard to achieve this number, she wasn’t wrong. The very thought of following the Diet is a bit depressing, it seems to go against a Healthy Diet to my reckoning. Yes I have another Blood test after 7 Days.
My husbands potassium level is usually around 4.7-4.9, anything over 5.2 is above range. If your level is low again, I would ask for a variation on the diet as it does seem restrictive if your potassium is within range. My husband has had his bloods done today for a shed load of tests, will get results on Monday so will let you know what his potassium is then.
I hope your Husband’s results are all Positive, it’s a great comfort really to know there are many of us in the same Boat and are on hand to share your fears and hopes. Again best wishes for Monday.
Hi tezzatowns, I said I'd give you an update on my husbands potassium blood test. He's got the results today and it has gone up slightly, its now 5 so still within range. Anything above 5.3 is classed as above normal bit 5.2 as I previously said.
Hi tezzatowns
Sorry to hear you have been diagnosed with HF.
I had a heart attack followed by a cardiac arrest last December and after an echo was diagnosed with heart failure.
First off, it's a hell of a shock to be told that, especially as the word failure sounds so terminal! I prefer to refer to it as Impaired Heart Function.
There are 2 things the medics look at, first to determine HF they look at how much blood you heart is able to pump, the ejection fraction (EF) anything over 55% is normal, anything under 40% is termed as HF
More importantly, they look to see how you are able to cope with the condition, for this they classify you under the New York Heart Association functional classification system, link below
heart.org/en/health-topics/...
I have an EF of 30% and am classified as NYHA Class 1
The medicines we're all given help to manage the condition, along with the meds you need to have a good diet, don't smoke, drink only moderately, maintain a good weight and keep active.
There are a number of people on this forum who have lived full lives with HF for 20 years or more.
The BHF produce an excellent booklet on HF, which will answer most of your questions, link below:-
bhf.org.uk/informationsuppo...
Hope this helps
How long back you had 30% ?
Echo done in December 2018 and again at the end of February 2019
Thanks. Has any one seen their ejection fractions go higher with mid or higher dose of Entresto. Will appreciate the feed back
Sorry I can't help you on that one, I'm not on Entresto, my understanding is that you're only prescribed Entresto if your classification in NYHA is class 2 or greater. I have seen a number of posts on here and other forums where a person's EF has gone up after being prescribed it.
Thanks a lot for your reply
Yes, I've heard of a number of people who's EF has increased after being on Entresto. However, an EF is just a number Dr's use to assess if you have HF, cardiologist are more interested in symptons. Someone can have a low EF and have very few symptoms whereas others can have a higher EF but be very symptomatic.
Thanks a lot. Does one need ICD if EF in in the range of 30-35%.
I don't know that it's a given that you need an ICD if you're EF is below 35 but it's certainly one of the factors that's taken into consideration.
Thanks. It may be late night if you are in EU. I am in USA
I'm in the UK, it's early evening here. However, maybe the criteria for an ICD is different in the USA. My husband was told his was being fitted as he was high risk of sudden death as he'd had a previous cardiac arrest, there was never any mention of of EF. In fact I only found out bout EF's through the Pumping Marvellous website. Have you looked at their website & Facebook group, very informative, helpful & supportive.
Thanks. Is it difficult to maintain ICD. What does it require.
There are different types of ICD's. I can only comment on my husbands one . He has a medtronic icd, it will recognise if there's an abnormal heart rythm & try to correct it. If this doesn't work it will recognise that & within seconds will deliver a shock in the same way an external defibrillator shocks the heart. My husbands icd has corrected his heart a few times. It's usually, though not always, fitted below the left shoulder & the leads are imbedded into the heart. My husband has a home monitor which downloads information to the ICD clinic daily and if there's been an issue (that we're not aware of) then the clinic will contact us. Apart from that he goes to the ICD clinic yearly for his ICD check up, they call it interrogation! And once a year he has a remote interrogation via the home monitor. If at any time he's concerned for any reason he can do a manual download to the clinic. Hope this helps & was not too boring ☺
I had a ICD fitted 4 days after my CA. Same make as your Husbands, its a fantastic piece of Kit. Hope it does go of I believe you get one Hell of a kick !
It is an amazing piece of equipment, I am so gobsmacked at its capabilities. My husband has had he's since 2012, thankfully its never had to shock him but it has corrected his heart a few times. It has also recorded that he had 44 self terminating vt's, so was able to address that by going on bisoprolol, without the ICD we would never have known. Do you have a home monitor?
Yes I have, in fact 2month ago I had so very strange beats and a rotten feeling in my Chest. I rang the cardiac center where it was fitted and they ask me to do a download, within 10 mins a Cardiac Doctor rang and told to get to AE as fast as could be he said I was in the “naughty zone “ my wife drove me and I was immediately taken to Resus, I was in VF. I was in Resus 3 hours, 5 cardio standing around with all sorts of Heart Monitors, they were discussing this and that while I looked with great trepidation, apparently my ICD was set at 170 and my Heart was going at 158. I was told that they would bring it down and let it shock me ! But just in case they prepared me with pads to shock me. Just as the process was under way “ just to inject an anaescetic my Heart rhythm went back to normal. What a scary event I had. I stayed over night in the Cardiac ward and then sent on the afternoon with a change in medication. My ICD was reset at 140. Not an experience I want to go through again.
Oh my, how scary that must have been for you & your wife. I've always hated the fact that when my husband has had to go to hospital for an emergency they always put him in I'm resus, just brings it home how serious it can get. Hope you're OK now
Am ok now no more flutters, but it was just a couple of weeks after that a Cardiac Nurse rang to come and see her, and that’s when I found out I wS in HF. I am sure the CA and this episode bought on the H F. Still shocked really I was so fit.
Do they know what caused the cardiac arrest?
No it came one morning from nowhere
That surprisingly is probably more common than you think and must be quite hard to deal with.
44 self terminating vt's? Please could you explain what that means for a novice . Thanks 😀
Vt's (ventricular tachycardia) are a fast heart rate. So on 44 occasions his heart rate was too fast. If the fast heart rate had continued, his ICD would have kicked in to correct it. Hope this helps.
Thankyou . I've been trying to follow the posts on HF as I've been told I have it but other than that it's ignored. Briefly had a HA about 4 years ago and not long afterwards struggling to breath saw an emergency Dr who said it was HF and gave me a handful of Fureosimide which did the trick. My own surgery have ignored the symptoms. I treat myself using the Fureosimide.
That's shocking. Are you in the UK? You might want to have a look at the Pumping Marvellous website & closed facebook group for advice & support. It's an amazing group, can't recommend it highly enough.
Scotland. Thanks I will have a look at that website 😀
Have you ever been referred to a heart nurse? If not, ask for a referral, under NICE guidelines you should be referred but the situation may be different in Scotland. Certainly there are people who live in Scotland who are part of the Pumping Marvellous closed facebook group, they would be able to advise you.
Hi .... no never been referred to a heart nurse. I see respiratory nurses every 6 months as I’m on oxygen 16/24. I’ve been on oxygen 3 years referred by consultant when he referred me back to my GP. Oddly enough I’ve never had blood gases checked. The nurse did try on first appointment but couldn’t get the needle through my wrist so hasn’t been tried since then. My fault for not saying anything but they are always so busy and I’m fine . Lol I feel like an invisible patient 😀
It's too easy to become an invisible patient. My husbands been a bit like that but because of using forums like this and understanding things a bit better his care has improved, though he does also have a very supportive GP now. My husband was recently told off by the GP for telling her he's fine, she said I can only treat you on how you present yourself!! Do you take any medication?
It’s from this forum I’ve gained some knowledge of my condition and treatment available . After a lot of years of struggling to be believed even that breathing was difficult for me I was finally diagnosed by practice nurse when I moved here. I had thought I was asthmatic but the symptoms made no sense to me so I asked her to clarify and she asked if the mucus I coughed up was clear or frothy. I said the latter and she said I had COPD. At least I had a diagnosis lol finally. I was later finally given a scan that confirmed I had severe COPD but that was only because a respiratory nurse intervened with a very rude consultant on my behalf. He had previously shooed me out of room saying nothing wrong with me. Now I’m on 7.5 mg Bisoprolol Losartan Furosemide Azithromycin Vipidia Metformin Aspirin Amlodipine Trimbow and Salbutomol . My new G P recently called me in to tell me I was at the end of my life and there was nothing they could do for me so I should put DNR on my medical notes for paramedics information. I was utterly stunned .... I laughed ! I’m going nowhere for at least another 10 years . Cheek of him!!! 😀
Well, his bedside manner needs addressing!! Over 20 years ago they said my husband wasn't gonna survive his heart attack. I was told they were going switch off his life support and then I was told what I could expect to happen over the following 3 days...he proved them wrong!! Im sure you'll do the same. Definately have a look at the Pumping Marvellous website & Facebook group for advice, they've helped me enormously. Also worth asking the BHF nurses for advice.
Thanks for your advice Lezzers. I’m glad your husband proved them wrong and continues to do so for a long time . Best wishes to you both x
That depends, I've had one fitted 8 weeks ago. The reason given to me by the cardiologist was that I may develop an arrhythmia at some point in the future which could make me go into cardiac arrest.
They have all the figures about my original cardiac arrest and my ECG details, and I imagine they deduce from them that I may be a candidate for a arrhythmia/cardiac arrest.
I would assume that not everyone with HF would be fitted with an ICD, I think it's more about the likelihood of a further CA.
As regards maintenance of an ICD - minimal .
Thank you so much for thoughts on HF. I was shocked to say the lest always been Healthy and my weight is fine. I see the Nurse Practicer tomorrow and I will have many questions for her.
Write out a list of questions, I did - it was quite a list believe me!
Good luck
Will do, thanks.
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