Hi I am Jim 53 and was diagnosed with heart failure in 2020. Live alone and thought would come on here to pick up ideas on how to deal with my diagnosis. I have struggled with it and the fatigue is horrendous. How does everyone cope?
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Jimbo53a
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Hi thanks the diagnosis was Heart failure with (if I got this right) ejection fraction left branch block. I am on atorvastatin,spironolactone,entresto, bisioprolol . I was very active before walking up to 10 miles a day most days. Now I am on walking stick and struggling to walk 100 yards in pain before having to stop. Mentally it has had massive impact and am now under therapist. It's the fatigue though that is biggest factor I am forever tired and have no energy.
hi Jim welcome to this wonderful group,I to live alone and it’s so hard not to have someone to turn to. I sympathise with you, I was extremely active , walk leading , tennis player, ballroom dancer, now nothing in a lot of pain and very tired, but I am an old bird !!! But like me I know you will get a lot of support from this group whenever your down 🤗
Thank you. It's great to hear from you and everyone makes me realise I am not alone. Thanks again
I don’t normally post on here however….
I’ve had 2 heart attacks and two cardiac arrests (both out of hospital), my cardiologist put me on Entresto 49/51 in 2020, well, pins and needles, dizziness and mobility issues ensued, my cardiologist told me to keep taking them (EF 31 at the time. My GP however did blood tests and found that Entresto was affecting my liver severely and told me to stop taking them immediately as it was more serious than my heart condition.
I’ve been off them for 2 years now, I take bisoprolol, dapafliglozin, apixaban, atorvastatin and have an ICD fitted, my EF is now 46 and life is good, no mobility issues at all. Entresto is not for me….just saying
One of your meds that made me feel like that was bisopralol. Maybe s peak to your doctor about trying something else. I needed to sleep almost 24/7 and could barely get out of the chair.. You obviously need it but maybe a different drug would do the same without that effect.
Thank you. Have spoken extensively to doctor and heart nurse. And they say it's not going to get better. It's just getting my head round it I think. Just such a big change. Thanks again.
Dear Jimbo53a, the doctors have said it won't get better based on their knowledge, however it is not the case for everyone. Yours can be different. Just stay positive, eat healthy meals and try to be around those who love you. You will get better in time.❤️
Thanks. I hope so.
Heart failure is a syndrome and basically means the heart is failing to meet the body's needs. Many different conditions can cause your heart to not meet the needs required, to say it's a 'label' is incredibly offensive to people who suffer with this progressive & often debillating condition.
Hopefully this link will help you understand what heart failure is
google.com/search?q=heart+f...
Lezzers do you wait for me to make a mistake and then jump on me as this is not the first time you have done this and the only time you seem to ever engage with me even when I have replied to your post in the past trying to be supportive you have bypassed my reply and never acknowledged it but have gone on to acknowledge every other reply
Belittling people on a post is also very offensive rather than maybe talk to them in a message which I would appreciate if I have got something wrong you could have added the link and I could have edited my reply in private ?
I would never in a million years intentionally offend anyone and if I make a mistake then I am only human and apologise to anyone that has heart failure if I have offended them with my reply as well as the poster of course my intentions were only ever to try and give kind words some comfort and support
Yes I saw your previous comment about someone singling you out albeit in a quiet way! I didn't respond to it because it was so far from the truth it was laughable! I have absolutely no interest in stalking or singling people out at all, surprisingly I'm an adult and don't play stupid games!
However, I do have an avid interest in HF because the condition has dominated my life for the last 10 years, I have lost a number of people I have come to know & care for to this condition to ignore something I see is wrong!
So no I don't jump on your mistakes whatsoever. I have in fact only replied to you twice regarding HF, once when you said all heart conditions are called HF, my 2nd comment is above. Just why you would think I'm singling you out when you've just said I don't reply to your comments is baffling!
Also, I dont feel the need to reply to every comment made to me, many members don't reply to comments. Have you complained about them? This is an open forum where people can choose to comment or not,
I've replied to other members when I feel they've got something wrong without this reaction.
As to being offensive,l/belittling perhaps you should have taken your own advice and messaged me instead of doing exactly that to me, when you have got it so completely wrong!
Having said all that, I refuse to hi jack this post any further, the op is looking for answers not arguments!
I'll leave you to your evening!
Heart failure has dominated my life for nearly 40 years and I am still learning as everyone’s condition is particular to them. People tend to post on here at the start of their particular journey for a bit a bit of comfort as they are fearful and need to know they are not alone. Certainly bitching or factual dogma can only make them feel awkward about having caused discord amongst people would not don’t want to revisit.
I completely agree
I’ve been becoming more aware over the months that this site is just another form of “social media” and just as potentially toxic as all the others. Why do people - often mature and intelligent people - feel the need to boost themselves by engaging in this sort of exchange? I left Facebook for the same reason; some nitpicker going for a word I had used and “putting me straight” about my choice of vocabulary.
It isn’t helpful and means that neither is this site helpful to me I’m off.
Hi Jimbo
Unfortunately fatigue can be as a result of your condition or it can be caused by your medication or by both.
Do you have a heart failure nurse that you can talk to about your fatigue? Do you have regular blood tests to ensure you're not anaemic? Anaemia is very common in people with HF as your gut isn't able to absorb iron.
Do you know where you are on the NYHA scale for your HF?
Have a look at the link below, the pumping marvellous website as there's lots of info there that could help. The pumping marvellous is the UK's leading Heart Failure foundation charity highly rated by HF cardiologists & nurses. They also have a Facebook support group which I highly recommend. Lots of support & advice from people living with it caring for people with HF.
Hi Lezzers I have spoken to both my HF nurse and my GP. On final month of iron tablets but if anything fatigue is worsening. No idea on the scale thing never even heard of it. Thanks for advice
Hi Jimbo
You're obviously anaemic to some extent hence the iron tablets. Presumably you'll get another blood test done at the end of the Month? If for some reason they don't give you the blood test, insist on it. Quite often iron tablets don't work for people with HF, the gut doesn't absorb iron though the food you eat and quite often the gut doesn't absorb through iron tablets either.
My husband was on iron tablets for almost a year and it made very little difference to his iron levels, he eventually had 2 iron infusions which made a massive difference.
Not much is known why the gut can't absorb iron, studies are ongoing but it is known and very much in vogue at the moment that iron infusions are very helpful in alleviating symptoms, giving you a better quality of life & reducing hospital admissions. The link I posted for you does have a section regarding anaemia that will probably interest you.
My husband has had HF since 2012 so I know a bit about the condition, please let me know if there's anything else I can help with
That’s really interesting, I’ve been put on iron tablets repeatedly since being diagnosed with HF back in 2021 and yet they don’t seem to make a huge amount of difference. I have never actually thought to question my GP on why I keep being prescribed them when they’re obviously not working or at least substantially.
Do you know whether there is a direct correlation between iron deficiency/anaemia and HF?
Thank you for this insight, very interesting
HiDo you have regular blood tests to check your haemoglobin, ferritin etc? Or do you just keep being given iron tablets? Sadly a lot of GP's have little knowledge of HF and even less about HF & anaemia!
I'm absolutely no expert on the subject but I do know that anaemia is quite common & there is a 'push on' to give iron infusions where possible as it's proven to help symptoms, reduce hospitalisation etc. My husbands cardiologist recently asked his nurse to check if they was room for my husband to have another iron infusion as it could potentially help with his breathing & fatigue. It is definitely known that for some reason people with HF are often unable to absorb iron through food or tablets but the powers that be are not totally sure why. I believe that is part of a trial & study at the moment.
I find it hard to totally understand the blood & iron infusions. To meet the criteria for an infusion you have to meet 3 conditions, 1 being low haemoglobin but that in itself doesn't make you iron deficient as you have to read the level along with the ferritin level but even that isn't straightforward! The nurse gave up explaining as it was too complicated but definitely worth talking to your GP about it. The link below might help you more. Sorry about the long post but it is a complicated subject.
pumpingmarvellous.org/heart...
Hi Lezzers. Thanks for this and for the link. I'm also interested in this as it relates to me. As you know I had second AVR which was awful. End result damaged heart. Anyway just prior to surgery I had usual bloods and was slightly anaemic - so took part in a trial regarding mild anaemia and diseased aortic valve. Details don't matter. But the nurse who was carrying out the trial was interesting - links to gut and malabsorption of iron where heart not working properly. Double blinded randomised to group etc and I was given an iron infusion as part of the trial. I have been plagued by anaemia since - iron tablets are ghastly and I would rather try and alter my diet to accommodate low levels - and so far seem to have been successful. Makes me reflect on the way the body really is a whole system - all parts dependent on each other for functioning. The minor complications of an inefficient heart can have huge ramifications for other parts. Thanks again.
It is really surprising, who would have thought the heart would cause anaemia in such a way. I do know it's not really understood as whilst it's common with HF not everyone does get.anaemia & for some the iron tablets work but not for others they don't.
I hope the infusion worked for you, my husband had 2 & they made a big difference to him. Since then all his bloods have been abnormal low except for his ferritin which is abnormal high & apparently to meet the criteria for another infusion then the figures have to add up, it's quite complicated.
Thank you for the link, I will look into this further.
I’ve had low iron since about half way through my first pregnancy in 2018 (I was on iron tablets pretty much permanently through my first 2 pregnancies- they think my dilated cardiomyopathy was triggered about half way through my first pregnancy so maybe the 2 were linked somehow 🤷🏻♀️).
In 2021, I had 2 iron infusions during my 3rd pregnancy and that did make enough of a difference for them to stop worrying about my upcoming c-section.
I was put back on iron tablets after the birth and at one point there was talk about giving me liquid iron sachets but I can’t remember why they didn’t do that in the end. I was having blood tests every 6 months to check it and just handed prescription after prescription but I’m now due follow up bloods but no letter or text as yet.
I think I might ask my cardiologist about it when I see him on the 12/07.
Thank you again, I appreciate it!
Best wishes
Soap 🧼
HiI've never heard of liquid iron sachets, presumably they're a prescription thing? Any ideas what the difference is between the tablets & the sachets?
Do you get copies of your bloods results? I always get a copy so I can check in what direction my husbands bloods are going. Tbh, I don't really understand them but as the results give high & low ref & whether the level is an abnormal high or abnormal low & of course I can compare with previous results. He's pretty much been having bloods taken weekly for much of this year, his haemoglobin, hematocrits, white cells, ted cells, etc are all abnormal low but ferritin abnormal high but nobody seems concerned. I did mention it to his cardiologist & he said you have to read them as a whole 🤷
Definitely ask your cardiologist, I would be interested in knowing what he says
Good luck & best wishes.
Yes you can apparently get them on prescription - but seems to be like hens teeth! I think the difference is that the liquid sachets are kinder with regards to bowel movements and provide a better absorption rate (that’s what my GP told me).
I didn’t know I could have a copy of my blood test results, perhaps I shall ask this going back over the last 2 years. I know that something to do with my white cells being very high often comes up but no one seems concerned about it and I often get told I’m iron deficient and anaemic but I thought they were one of the same.
I shall let you know what he says, I feel that it could be playing a part in my breathlessness and fatigue at times (alongside my heart issues), it’s so hard to know which is the primary culprit and to get answers always feels like such an undertaking as no medical professional seems to be forthcoming with information (in my experience).
I had dental surgery nearly 5 weeks ago and no one actually told me what they had done in the one socket that was causing me so much pain - it’s only this week when I’ve phoned back still in pain that I’ve learned that not only was my gum cut but my jaw muscle in that area too and that it could take 8 weeks to heal, not the 2-4 I was expecting!
Many thanks, I’ll keep you posted. Sending best wishes to you and your husband 🙂
Soap 🧼
Ouch about your teeth, that's shocking. I have had my gum cut to allow for a wisdom tooth but why on earth would they need to cut your jaw!
I've always thought iron deficient & anaemia were the same but I'm beginning to understand (I think!) That you can be iron deficient without being anaemic, though I'm happy to be corrected if I'm wrong.
My husbands cardiologist wanted my husband to have an iron infusion as it would help with his breathlessness, so it would seem being anaemic or iron deficient could certainly play a part in your symptoms.
Thank you, I appreciate your best wishes. My husband is currently getting hospice support and that has really helped him massively.
Best wishes to you too.
Thanks all I was told was to take course then stop. Nothing was said about another blood test so will check on that.
Yes really interesting lezzers.I am aneamic so what you had to say a helpful contribution.I note the earlier exchange and skirmish and that was actually the main reason I was reading the thread.Funnily enough I have been corrected a few times by same-once for spelling and once for use of a completely wrong but similar word..(kettle pot etc).
Back to this iron absorption business.I shall look at this and see if their is any trick to get round it now that I know it is a generalised problem and not just something that affects me.
Thank you, Yes, it was all a bit unnecessary. Tbh, I knew of it but didn't bother reading it all. I didn't really see the point as it's not something I'm interested in.
I don't know if there's any way round it as such. For some reason some people with HF absorb iron better than others either by food or tablets, but for others it's a real problem. Apparently it's something to do with the gut not absorbing the iron but I believe no-one is actually sure why. I do know trials are going on to see if the reason can be established. But it's definitely a case of, if you're anaemic then iron infusions really do help reduce hospitalisation, mortality etc and help relieve symptoms. It's just the criteria for having the iron infusion is more than just having low haemoglobin!
I don't really understand it that well, so if you do get answer I would be really interested to know.
I know for definite I am aneamic.In hospital post CABG and bloods now 17wks later despite having been prescribed -and taking iron tablets.
But mostly I work on the supposition if the majority in my age group have a deficiency than I probably do too or at least should try and avoid one.Take B12 as one example, I just assume I'm deficient.Tablets no good as old people don't absorb, injections need first a blood test and then to convince a doctor.Solution take sublingual tablets.
I could tell a similar story about magnesium.
And another about metabolism and avoiding dementia.(my dad got this)
Raising my iron levels though has me stumped at the moment.The tablets don't seem to have worked for me.They usually say old people don't have strong stomach acid and also have a leaky gut.And you say studies have found an unexplained but strong link with weak hearts.Might be a clue in there somewhere.
My husband was on iron tablets for about a year & they made little difference to his iron levels, his iron deficiency started when he was only 65. Eventually last year he had 2 iron infusions which really helped him. But since then whilst his haemoglobin, hematocrits, red cells, etc have been below range his ferritin has been above range, I think this is a dude effect of the infusions.
If you have a cardiac nurse have a word with him/her about it. Most (though definitely not all)GP's are not really up on the intricacies of HF. Our last GP couldn't understand why my husband was on candesartan as he didn't have high blood pressure, despite his nurse constantly telling her he wasn't taking it for high blood pressure. As a result of her not understanding, she reduced my husband's candesartan & caused all sorts of problems. His cardiologist wasn't at all happy & said if she does that again then to let him know & he'll sort it.
Hi, Jimbo53a,
I believe that I have read that usually one needs to take Vitamin C along with iron tablets in order for the iron to be absorbed properly. You might want to discuss this with your doctor. I used to take vitaminC supplements until my HA, then the cardiologist had me stop taking any vitamin supplements.
Now, I do take D3 because I was diagnosed with osteopenia, and my GP has stated that vitamin D can help to slow the progress into osteoporosis. She asked me to take 1,000 IU per day.
Here is one article from Mayo Clinic about iron deficiency and its treatment: mayoclinic.org/diseases-con...
On the other hand, this research study suggests no significant difference in taking iron tablets with vitamin C versus iron pills with no C: ncbi.nlm.nih.gov/pmc/articl...
I have just been recommended iron tablets for a couple of months as following tests for something else to do with my bloods the doctor said he thought my iron was a bit low. I had read about the iron transfusions however until the doctor mentioned this I didn't know it was a potential problem (the cardiologist I saw the other week never mentioned any problem at all).
I did tell him i eat well, but I got to admit i didn't know I might have a problem absorbing iron (nor did he by the sound of it). BTW I am not blaming the doctor as it is not his area of expertise!
When I get to speak to or see the cardiologist next time, I will mention it then.
Thank you for the food for thought.
Anaemia & the heart isn't very well understood by a lot of dr's including some heart doctors, it's really only just being given attention in the last couple of years I believe. My husbands cardiologist is a HF specialist so is a bit more in the know. Good luck with the tablets, they do work for some but not others. Perhaps you could mention to your Dr the link I've provided above so that he's aware going forward.
Are you on a course of the tablets with follow up blood tests when you've finished? Our GP was asked by my husband's oncologist to prescribe the tablets, the GP said she disagreed but would prescribe them anyway but then did no follow up bloods! It was only when my husband was referred to a HF nurse that she did bloods & referred him for the infusion.
Morning
Lessers I only found yesterday when the specialist doctor told me and said he would recommend to the GP a couple of months iron tablets (and see where we go from there), so the answer to your question is I don't know😀 (I do trust he knows what he is doing).
Like you said if the tablets don't work then I can mention the iron transfusion.
Live and learn as always.
Hi, After reading the above letters about iron deficiency,it took me back to my childhood, when pregnant ladies were told to drink Stout, ie Guiness,Jubillie and Mackeson. These drinks were aledged to be full of iron, hence the reason for drinking them. You would see them in the welfare with a glass of stout on the table. While I am not trying to encourage people to go down that road, it is just a light hearted message from the past on how treatments and medications have changed.
happy drinking?
bludnut Hick Hick
They certainly were encouraged to drink stout as it was thought to be full of iron. but not just pregnant ladies, I believe it was given to people to help them recover after an operation? I think that theory has been defunked now, maybe the ingredients in the stout has changed? Bit like gripe water for babies, used to be full of alcohol but the alcohol has now been removed. I know when I growing up I wasn't allowed to drink coke as at one point it actually contained cocaine 😳
Hi it's bludnut again. I now remember my grandma dipping a babies dummy in the top of a Brandy bottle, as well as her finger and then rubbing her finger on gums to numb the pain. I believe that some the old remedies are still out there, maybe used by those who managed to live through WW2. We survived inspite of the unusual remedies, and I don't recall any of us becoming addicted to those painkillers unlike today. I wish that they had found a cure for heart problems which runs through the males in our family.
take care,
bludnut
I dunno about addictions, I drank a lot in my youth, I'm now gonna blame my mum 🤣 Seriously though I agree, meds addiction is a recent thing.
This heart business is a difficult to understand. My dad had serious heart problems, my eldest sister (who smokes 😳) and myself have got off lightly but of my 2 other sisters, one was born with a heart condition & the other has had quite a lot of health issues. On my mum's side her dad had heart issues & passed away after a HA, her brother also died in his 50's I believe of a HA. But my mum & her sister had no heart issues at all. My husbands mums lived till her 90's and until she had a stroke at she 89 she had never been ill or in hospital but one of her sons had a stroke at the age of 26, my husband had a HA & CA aged 42 & diagnosed with HF at age 57 & cancer age 64, the only person in his very large family to ever have cancer, despite the 1 in 2 odds.
It would be good to find out how genetics play a part in our health.
You take care too.
Ditto 😊
All I can say is sorry for you diagnosis. And you will find many people on this forum who can give you some real world experience of the problems we come across now we are in this club we never thought we would become members of. From a mental side to all this iam on that mental journey. One thing my therapist has said is that iam grieving. And there are stages we have to get through to get to the exceptance of what has been found. I hope you get the answer to your questions and you find peace.
Jimbo53a• in reply to
Thanks. Everyone has been so helpful already. I am so glad I joined. I think your therapist is right about the grieving as it is a big loss of lots of things. Will definitely speak to therapist about this on Monday when I speak with her.
• in reply toJimbo53a
Good luck on your journey. One thing to try and remember is to do everything in small steps. Push a little and see how it feels. And then re avaluate and learn what you can and carnt do but try not to beat yourself up about it. Hard I know. But it's that loss of what you once knew. And now it is new beginning. But there will be good days and bad it's a journey. A new challenge.
Jimbo53a• in reply to
Thanks will do
WardijaWardija• in reply to
Hi FellyYour comments about the mental-journey and 'acceptance" are so true.
Yet, at least in my experience, such concerns and a state of personal dissonance, is frequently dismissed by many of the medical personnel, as not being so important. I believe it is key to achieving holistic well-being, no matter the diagnosis.
• in reply toWardijaWardija
You raised some very interesting points. For me the hardest part of my journey is the sudden shock of finding out I have a congenital heart issue. Now this to many people seems to be a reason to question why I feel the way I feel. In many peoples eyes they assume. as I was born with it and have got this far with it why does it effect you? Now I know inwardly iam not right. But when they look at me I look well. Of cause as I get older the issue may get worse due to wear and tear. But what I get myself worked up about is why carnt I go back to a time before it all kicked off. Iam not saying to before my birth that's impossible but a time before I knew of this issue. Yes looking back my condition did give me a niggles but I just assumed it was me I was not that fit and was not going to win an Olympic gold medals but it did not stop me from doing stuff. But now it has raised its head and I possibly know too much? I will never know what caused it to show itself. But my rising blood pressure possibly did not help. Wearing a mask during the pandemic. Possibly the injections for the said virus could have played a part in blood pressure, even the said virus? that in turn effected the heart. But as you say the medical people don't take into account the full impact of physical and mental. Bit like what happened when I first went to hospital. Yes they done everything for 8 hrs to find what was wrong and they where brilliant. But once they found it and had a reason for my stats they where happy and sent Me on my way, but that mental side of realising I have a fault with a major component that keeps me alive. Wow talk about a kick. But the issue is they send you on your way, off you go your mental side of trying to come to terms with it is your problem. That's another department not my problem. So the journey goes on and on.
hi. I’m 52 and I was diagnosed with heart failure last year. It’s a horrible term but it’s hard to forget when it’s used by health professionals and is plastered all over our notes. I would look at a website called pumping marvellous which is an excellent resource and explains things very well. I’m on the same meds as you and feel knackered most of the time. I’m not sure if it’s my heart problem or the meds but I’m exhausted all of the time. The meds have increased my EF to normal levels so I hope they do the same for you. If you have any questions please just ask, there are some very knowledgeable people on this forum and I’ve been given a lot of support. I hope it helps you too. X
Thanks glad to know I am not only one feeling knackered all the time. Hopefully due cardiologist appointment in August and see if tablets doing job. Thanks again
hi. You are definitely not the only one who is exhausted, it’s a common theme with us hearties. I’ve heard that entresto and bisoprolol are the usual suspects but who knows. On a positive note, meds like entresto can work wonders for EF so it’s a bit of a cost balance thing. I was medically retired from work so if I need a nanna nap in the afternoon then it’s fine. I do have every sympathy though for those who are still working and having to battle through the fatigue. Maybe have your iron levels checked again, I needed 2 infusions last year for anaemia but now I’ve ended up with an iron overload, so go carefully. Sometimes it feels like it’s one thing after the other but hey, we’re still ticking! X
Hi I am sorry to hear about your diagnosis, I got the same one when I was 58 and living alone, the shock was awful and even though my dad died at 62 I never for a moment ever thought I would have heart problems never mind heart failure but I was wrong and it turned out I have a faulty gene. The biggest mistake I made was not going to see someone about the way it affected me mentally and I am glad you have addressed it as I was in a terrible place, the fatigue is bad but I found on good days I done a bit more and felt better about it and on the bad days I rested and just done what I could. there are different meds getting prescribed all the time and the improvements on this horrible condition are so much better than they used to be. Char
Thanks. Sorry to hear that you struggled at start. Totally agree about having some better days and I too tend to do what I can on those days . Learning not to beat myself up when I can't. Thanks again
Ditto, me too. Well said 🙏🙏
Sometimes the fatigue is due to the medication that they put you on. The cardiac rehab nurses were fantastic, but perhaps get a review of the meds with your gp?
Thanks will do
Hi Jim
Welcome aboard and I hope that you find comfort in knowing that you’re definitely not alone.
I’m in my 30s and was diagnosed with HF at the beginning of 2021. I too experience fatigue and at times I can’t even get out of bed.
What I do know that helps me is being kind to myself, sharing with others - especially when I’m struggling and making the most of the positives in my life.
Hang in there, things can get better. HF is an extremely unsettling diagnosis - I remember feeling incredibly vulnerable with the weight of those words.
I hope that we can join you on your heart journey and you’ll let us support through all your highs, lows and everything in between!
Keep us posted with how you’re doing, take care.
Best wishes
Soap 🧼
Hi and welcome i am fairly new here myself they are a great group and you can learn plenty here..I am 56 and have heart failure have had it about 18 months i cope ok though and live alone myself..I wish you good health and happiness during your journey..
Thank you and wish you well on your journey too. Everyone has been so kind and caring. It's great to know I am not alone. Thanks again
Hi Jim nice to meet you. The situation was almost same 3 years back with me 52 y live alone & heart blockage, 2 stents, cocktail of medications. Pain, anxiety, fear, tiredness, headaches, fatigue, body aches 🥹
I didn't give up stayed positive. Regular walks and light stretches even if for 15 - 20 minutes. Gradually things improved although not the same as before but I am doing good.
My suggestion 2 things are important be remain positive, " stay mentally strong "and keep yourself active. Engage in activities whatever you like.
Warning ⚠️ Don't google medical conditions & medication side effects instead watch your favorite series & movies. Whenever negative thoughts come to mind call , txt or meet someone. Meditation is a great way to stay calm UCLA Mindful Awareness & Beltone Calmer are a few apps for meditation.
You are stronger than you think and be sure things will get better it is just a matter of couple of months.
Good Luck
Jimbo53a• in reply to
Thanks for advice will definitely take it.
Hi and welcome . So sorry for your diagnosis . It takes time to accept and only time gives you the confidence to go forward.
Anxiety and worry causes severe anxiety and as others have said the medication.
Slow steps going forward and grab as much help as you can from this group, your medical team and friends and family.
Take a day at a time. Listen to your favourite music and try not to look back on what you used to do. It all takes time but with support you will get there.
Thanks. I am not good at slow steps but am learning fast. Everyone on here has been so helpful and caring. Been relying on medical staff and it's good to hear from others who live it Day by Day. Thanks again
I have never had Patience however it has come with old age! Not many bonus’s but this one has helped me a lot when it comes to health. The body is remarkable at improving but it does take time.
Remember Small steps and note your improvements weekly.
Lots of people on this sight have got back to some normal activities, it’s been a long journey but they have done it.
Good luck x
Until the medical profession, change the 'expression' (my choice of words even if it is the wrong one😗) the label heart failure will always stand as a first point of reference for everyone from the medical profession to the media.
When I was told in my hospital bed I thought I had days left and wanted to go home to die as I didn't want to die in hospital , that's what the term meant to me.
It didn't take long after speaking and reading to people for me to see a future was possible. That is why 2 years I am still here.
I suppose ultimately I have the 'label' heart failure attached to me. Is it a problem for me personally no (but that is how I feel). I also suffer from psoriasis and for 20 years having that 'label' was difficult to deal with. It was only when I realised it was part of me and it didn't control me that I finally beat it mentally. This experience helped me with HF.
My last point about changing labels, even if the medical profession changed the name it would take many years for the old name to disappear (How I do know this, I used to work for the Inland Revenue and when it became HMRC it took many years for the change to be totally recognised).
Hi Jimbo53a and welcome. I have just popped a reply to Lezzers regarding anaemia and HF, but its your thread and I wanted to say hello. I also have this diagnosis - and like others loathe the term. My heart is simply not working as well as it might - damaged area of left ventricle which has what often feels like huge implications for the whole of my body. I try and keep the rest of my heart as healthy as possible (I can do nothing about the damaged area, effectively that is inert muscle) but like you fatigued at times so then I rest. I still work 2 days a week and garden and walk at least the min 150mins brisk walking per week. At times life is great, at others its not so great. Sadly this is progressive and I know that. In the 4 years since diagnosis I have noticed that things are not quite as good as they were, I get anaemic (which makes me tired), have a tendency to collect fluid and so on....but I'm still here and fighting on. Actually I'm pretty fit and overall quite healthy - so the positives are there too. I just made adjustments to my lifestyle to accommodate the symptoms. Pleased to see that you are talking to a therapist - talking to an independent outsider with no agenda can help to accommodate to difficult times. Keep talking to us, you are very welcome here.
Thanks . Everyone has been fantastic and caring. Learning new things from people who are living it can only help I think. Think I need to get your positive attitude and start fighting. Thanks again
Hi Jimbo,
Welcome to the forum no-one wanted to join. I sincerely hope that you can get some answers and comfort here. As has been said, it is important to stay positive and not get into a downward spiral. This is extremely important for us all, whatever our heart situation may be. Personally I have no experience of HF, but I have a friend that has been diagnosed with it and is on a similar cocktail of medication to you. He has improved over time and is now regularly climbing hills, though not quite at the pace he used to.
One thing that will become very apparent as you read posts is that we all react differently to medication. What suits one person may not suit another. I would encourage you to be pro-actuve in respect of all aspects of your health including what you have been prescribed. Keep in contact with those heading up your care as regards how you feel and do not be afraid to question. This has served me well over the years and I not only feel better, but now have a cocktail of medication that suits me very well.
I do hope that life improves for you. I know it is easy to say, but try to keep looking to the future and try to remain positive that life will get better.
With my very best wishes,
Gerald
Thanks I will try to stay positive and great to hear about your friend.
I do wish these nurses would stop saying it isn't going to improve when it clearly can. There are quite a few people here on this forum that can bear witness to that fact. My friend also. He has not long come back from Germany where he meet with friends and walked a few hills. Okay he's reigned in his ambitions a bit, but he's doing okay. 😀
Thanks I needed to hear that
Hello Jim, I was diagnosed 2 years ago and am on similar meds and like you do get tired at times.
I don't know how you have got to 3 years but I reckon you have been doing a lot of things right to get that far. That is worth celebrating in my books.
You ask how you cope, the major thing for me was setting some achievable goals (short-term, medium and long term) as I knew I couldn't do what I did before, and celebrating mentally and personally each achievement I have made.
Some of my achievements to start of could be seen as 'too easy' for some like by increasing my exercise for an extra 5 minutes or cutting the grass for 10mins instead of 5. But when I did it I did feel good. Others might seem strange to others but two I did last year was to climb the towers at Chepstow and Goodrich castles whilst on holiday (which I thought i might never have done again). I am sure you will find things you can do.
It may be why I love to read all the comments from the lovely people on this site when they have achieved something. I find them very uplifting.
Sorry if I have gone on, as I have said you have done well so far and I am sure you will find other ways as you go forward, just don't forget to celebrate them.
Thanks I don't know how I made it this far either. When I got diagnosed I was a carer so kept going for them I suppose. Now I am alone and feel things have deteriorated some. I will definitely start celebrating the little things as you suggested thanks again
Hello Jim, I think your caring made you think less about you, and now you have the time to do it.
I believe the mental side I think is as just as important as the physical side so yes celebrate those little things also I would try and think of not what I can't do but what you can do. A new hobby perhaps?
All the best.
Thanks I am looking into finding a new hobby. I am trying to look forward with help of my therapist.
hi. I don’t know if it’s of any interest to you but you could have a look at this website; menssheds.org.uk/ They organise activities for men and I’ve heard they are really good. They are all over the country.
Thanks yes I agree that some of it is mental exhaustion. Therapist is addressing that. It's a vicious circle.
I have no tiredness at all with heart failure,at 85!Luck,or what?I write though because i thnk we may be missing something here.At 53 I would think there may be a lot on offer to improve your situation.Although not a medic i get a sense that perhaps the docs. may not be looking into your situation fully enough and trying to find solutions for an improvement in your life. Can the left block be sorted out ?Are you having the right diuretics for you?What does you echocardiogram reveal in detail.?Has this been shared with you?How has your fatigue been explained to you?I would be having a good think about this and posing questions to the cardio. who treats you .I would want a few more answers.Try not to accept the fatigue as a forgone conclusion. I feel sure there are answers to some of your difficulties.
Thank you. No one has really explained anything. I had a CT cardio angiogram at start of month. No results yet. HF nurse just issues meds and asks same questions I have asked for a care plan but keep putting me off. Heart nurse said all they can offer is trying to keep me out of hospital and it's not going to improve.
not a good attitude from your nurse. This isn’t what most are saying with the same diagnosis.No wonder your not feeling positive.Tell her how this makes you feel
I think the last sentence in your e mail is a give away to the lack of effort the people who are supposed to be caring are not doing enough. 'Things are not going to improve'.Why are they not going to improve? Get them to tell you why and then you may be on the way to better treatment.
Yeah I think you are right. Thanks
Jimbo Welcome to the group I don't have heart failure but have just had my aortic valve replaced Before the op I was exhausted all the time so I know how you feel I also have arthritis, fibromyalgia, acid reflux, and degeneration of my neck discs and it certainly had a knock on effect in making those worse too I am now recovering slowly so still get very tired I know that bisoprodol can make you very tired so you may be taking 2 meds that have tiredness as a side effect .I found that you need to learn to accept you will never been quite the same again but look for help and find some interests that you can do I am 76 walked for miles's sang in three choirs and played handbells For the last year I have only managed the handbells as we sit to play if I had to stand the would have gone too
There are things out there that you will be able to do once you have sorted out why you are so tired . At the age I am at I know that Life is for living and every breath is precious . I find looking for the small things in nature gives you a boost .I watched a bird having a bath in my fountain for 19 mins last week and he was so enjoying it. It really gave me a boost ,its those things you don't notice when you are well .
I hope you find lots of help on here from others with heart failure. Friends or joining a group can be a lifeline too Good luck in getting answers from medics
Welcome to the group Jimbo. I know how you feel as I feel the same as I’ve had the same diagnoses for years. I’ve gone up and down. I’m down at the moment, but I have to keep telling myself I’m still alive and at least I know what is wrong with me.
Fatigue can be caused by the cocktail of medications or the fact your heart isn’t working properly. If you’re able to can you tell me what your Ejection Fraction actually is.
Another thing when you see your nurse or cardiologist mention to them how you’re feeling and also ask them what exercise you can safely do. You was used to exercising so maybe going back to that will improve your mental health and strengthen your heart function and give you hope your life hasn’t ended. But please speak to the professionals first. All the best Diane.
Hi thanks no idea on ejection fraction trying to get info seems really hard. Awaiting angiogram results before heart exercise group will take me on.
I made another comment about the fact maybe they’re waiting on the CT angiogram results before they can move confirm and forward. Let us know how you get on when you find out your result. For them to diagnose heart failure it must be showing your EF as being below the norm.
Welcome to this extremely helpful and uplifting community 🙂
Hi and welcome! I am 51 had my HA nearly 4 months ago.. 3 stents.. and now recovery steadily. Fatigue is my problem though. I exercise... then left very drained (not like I use to). I have now learnt to listen to my body. If I wake up feeling great.. I'll do the gym, walk the dog or household chores... otherwise I rest, do mindless things and no longer see it as lazy or frustrating (had some good conselling)... I know see it as vital self care. Don't know whether that helps you... but you're certainly not alone! I have to say... I think the tablets are a big factor in tiredness as well as weakness! Best wishes Dale.
Thanks it's great knowing the fatigue is a struggle for a lot of people in similar positions.
well said x
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