Hi , I’m Jan, new here , been diagnosed with heart failure and A-Fib , I’m feeling so low and sad ☹️ with no one to tell me I won’t die. With lockdown again, being breathless not being able to do much,I need reassurance and pray for support from other sufferers. They say it can be helped with drugs I’m on 7 pills a day. I’m scared , have nightmares wake up crying 😭 . I feel so sick with worry.
Any help will be so appreciated!
Thank you
Jan
Hi it must be difficult for you no one can predict when anyone dies it’s only because when we find out we have a health condition panic starts otherwise we might have never given it a thought keep taking your meds enjoy uself stop worrying that makes things worse I hope god willing your health improves but try to occupy uself in something u enjoyx
Thank you so much for the reply.. I really appreciate your kind words..
bless you. Thank you 🙏 I will do my very best !
Hi Jan
I would strongly recommend that you watch Dr. Sanjay Gupta of York Cardiology on YouTube, he explains a lot about Afib and heart failure. I found him very useful and reassuring. I have watched a lot of his videos ans I recently watched one that is called something like Life is not only the absence of death, it was so inspiring.
I hope this helps, good luck x
Bless you for getting in touch . I am very appreciative. I bc will definitely take a look tomorrow. You are so kind .
Thank you so much 😊 I’m very grateful.
Be safe x
Hello Jan
You stand a very very good chance of not dying from A-Fib/Heart Failure. I have known about my Heart Failure for around 5 years now, and I am still living life to the full.
I have been in Severe HF and currently in Moderate so it can improve it can't get better but , function can be improved. Do you know your ejection fraction as that's an indication of any damage ?
Medication is getting better all the time do you mind sharing what you are taking ? Entresto is currently a number one choice !!! There are many types of devices which can also help function so please don't despair.
How did you get your diagnosis ?? It seems all questions but if others can help you they will need to know a little information about your condition.
Take Care and Hands Face Space to keep Safe
Oh my goodness thank you I am on 6 pills tomorrow I will get back to you with all the info I really appreciate it and your words has reassured me I can feel bc enter about this .
I’m still in shock . Thank you so much may I get back to you tomorrow is that ok . Thank you goodnight. Be safe .
Thank you for your message yesterday ,
I was so out of breath, palpitations, dizziness, lots of things going on, so went to doctor and blood tests and scans showered I had A Fib, I was put on pills but quickly got worse. I can walk up train station stairs etc, or a very small slope , I was at the doctors for more bloods and the said they showed other problems, so had more scans. Turns out it’s a valve albeit my doctor skimmed over that , so felt very uneasy , then the bombshell “ you have heart failure “ did not even look at me so I was in a panic ..
My mother died of a heart attack in ten minutes and was young ,so I really was upset! I felt I had no information and living alone my little brain just manifested into a death threat!
The pills I’m on are
XARELTO 20mg
LIPITOR 20mg
BISOPROLOL 3.75mg
AMLODIPINE 10mg
LISINOPRIL 2.5mg
FUROSEMIDE 40mg
These are what I’m on so far.. but if it keeps me alive I’m grateful.
I’m so happy to be on here and share and see where it goes.
I’m having more bloods done on Tuesday and doc again next week , I don’t think I’m quiet so breathless, it has eased a little.
Thank you for all your support and have a wonderful week. Take care, thank you so much .
Jan ..
Hello again Jan.
Sorry to way you down with information. I noted that you take Bisoprolol as one of your meds. Just to mention that I experienced hypnogogic type hallucinations whilst on this. In my case this stopped when I was taken off of Bisoprolol. I also had other marked side effects. Bisoprolol suits many people but some seem to have a poor time with it. In my case it was replaced with Carvedilol. Might be an idea to mention this to your Cardiologist. Of course I am not a cardiologist but it may be worth exploring this with them.
All the best
Hi Jan, I’m newly diagnosed with both after pneumonia in August. I’m awaiting cardioversion in jan and was put on Amiodarone as a last resort drug to help me stay in rhythm once I get it done but bn told to halt until my nurse speaks to doc as itching and feel awful. I’m like you very scared, but reading some posts have a glimmer of hope. I hope you get some peace of mind too this is indeed a very scary journey for us all but this site is so comforting xx
Hi there ,
Great to meet you here. It really is so comforting
I’m 75 so no spring chicken my lovely.
You sound so strong and inspirational, thank you so much for your message I really appreciate it. .
Sending hugs 🤗 happy weekend, take care.
Jan x
The more posts you read the more reassured you become. I was diagnosed about 3 years ago and I can remember that sick feeling. It was the Arythmia nurse who first said those words 'you are not dying. Your heart is struggling. She told me about this website and its been such a help. Its there 24/7! So when everything gets too much just right a post. Im almost 80 so you have youth on your side. Im just determined to keep going. If you look at some of my posts you will see that I ask the daftest questions but better that than worry.
What I did was get myself on to heart strengthening supplements like CoQ10, Hawthorn, Dan Shen (a Chinese herb) and acupuncture in addition to careful amounts of exercise. It's all working. Go see a competent naturopath or herbalist or TCM practitioner.Or all three.
Hi there..
thank you for your message , I’m truly grateful!
I like the sound of that herb , I used to do aromatherapy and reflexology, so I’m into all the alternatives..
have a wonderful weekend, stay safe. X
Hello Crystal-21
Welcome to the forum, not somewhere you thought you would ever be joining. When any of us have a heart issue it comes as a really big shock, I hah open heart surgery at the age of 68 to replace my Aortic valve and had a bypass. I couldn’t understand how my body was letting me down it never had before 😩 but here I am 4 years on and living my life😂 you have had a great post from Prada47 he will help you get your head round what is going on.
Now your a member of the Hearties family remember you are not alone if you need to talk we can lend an ear or give you a shoulder to lean on.
There is life after a heart event things can improve.
Sending you very best wishes Pauline
Hi Pauline,
Thank you for such kind words I’m really blessed and grateful for your message!
You are right I did not think I’d be here , but I’m very appreciative.
I’m feeling a lot better after joining yesterday, so many kind words and advice , I will really get into it! I need to take time to read everything..
you sound a wonderful person,
Thank you so much. Have a great weekend.
Hugs 🤗 stay safe !
Morning Crystal, welcome to the gang! There's loads of us here! I survived " the Widow Maker " heart attack. One of the main arteries supplying my heart with blood was fully blocked so no blood was getting in. It killed a lot of my Heart muscle. Im still here though. Im planning on going back to work in 2 or 3 weeks. Boris has delayed my wedding by 2 weeks. Due to be wed 12.12.2020. Like you I have a similar amount of Pills. Ive been living with HF for 3 months now. Best advice ive had so far is Be Kind to yourself. Your going through a lot so go easy on you. Any issues, come and post them on here. I can honestly say the amount of knowledge and therapy I have acquired on this forum is 2nd to none. Good luck on your road to recovery. Keep us posted
Jim x♥️
Ahhhh.... Bless you. So kind..I will keep on here learn all I can .
I don’t feel alone anymore which is wonderful.
I know it’s hard times right now..yep weddings off for now , I hope all your dreams come true soon.
Thank goodness you survived , so happy for you..
Have a fabulous weekend. Take care and thank you for your message. I’m really truly grateful.
Jan. X
Always someone on here to help you. Sometimes its the loneliest place in the world so nice to feel your not alone. You take care and keep us posted on your recovery!
Jim x♥️
Hi Jan, it is scary isn't it. I know your situation well. I was diagnosed with severe heart failure 2 years ago, aged 55. My diagnoses came about as a result of a routine check up for something else. I really thought I was going to die without seeing my son graduate university or fulfil any of the retirement plans I had made with my husband. However, fast forward 2 years and my heart failure is so much better, with my EF back in the normal range. The drugs, although there is a lot of them, do work. I still have a diagnoses of heart failure and will probably be on the drugs for life but that is a pretty near normal life. Many people here have been living well with heart failure longer than me. Take the drugs as prescribed, they may well need tweaking along the way, keep active and eat well and you have a pathway out of this. I sort counselling to help me come to terms with my diagnoses, it helped, the mental health impact of such a diagnoses often goes unsupported. Wishing you the very best x
Hi there, sounds like you have been through it.
I think like most things we do come to terms with things.
It happens so fast, I was in fear, shock, and had nightmares , woke up crying 😭 in a very black place, but even after being on here yesterday has helped no end.
I agree with all you say.. I think the pills will need tweaking, ( upsetting ) my stomach,, Wonderful you are coping, so beautiful to hear. Did your son graduate?
I had cancer at 29 I had three children, I prayed I would see them grow up. Then I got it again 15 years ago( different kind) . I prayed again so I could see my grandchildren grow,, have I got greedy ? Now this , imust get on my knees again..
Big hug. Happy weekend.
Take care .
Jan x
My son has one year left at uni. My daughter, who is autistic, just started uni this September aged 23. It has taken her a while to get there with everything she has had to deal with. I now want to see both graduate 🙂
It sounds like you've been through the mill. I wish you the very best. X
You will see them graduate 👩🎓 👨🎓 for sure.. may you always have beautiful blessings in your life..
you sound like a wonderful person.
Take care, a big hug.💙💜
I understand. It is such a shock to the system to be told you are in heart failure. It sounds like the end of the world but if you keep visiting this site, you will see that we are all coping. I thank God every morning whenI wake up. One thing this diagnosis does is make you appreciate the small things in life and you learn to enjoy small achievements. I get breathless too, even getting dressed after my shower wipes me out, but keep going and keep smiling. You are alive! In time you will accept it more and try to get on with living and thoughts of dying will become less over time. What a shame you have nobody to confide it. Stay strong!
Hi there, thank you for your message ,
Yes indeed it does make me appreciate so much!
I’ve had cancer in my life twice so I’m pretty good at being grateful,, but this did stop me in my tracks, but after reading things here I feel so different and it’s so informative!
Thank you for being so kind.l
I do feel less breathless since I’ve been on the extra pill.
Hopefully all will improve.
Thank you so much 😊
I try to do as much as I can, but it is what it is now.,
Happy weekend. You take care.,
Thank you once again.
Jan x
Its a shock when it happens and you have different emotions I pray every night and every morning. I was similar to you and my tablets help me so much . At first it's all about you then you see other people worse off .Take care and will pray for you God bless
Yes youbare so right , and seeing this site makes us realise. Bless you. Happy weekend. Take care.xx
Ahhhh .... Bless you.
Yes I pray also .i agree so many worse off.
I’ve been through a lot in my life health wise , so I am sure after a while I’ll get to relax and just keep taking the pills .
You take care and happy weekend.
Thank you 🙏
Jan x
Crystal, I'm sure you'll have a lot of helpful replies. You look a lot younger than I am, but I have both AF and was admitted to hospital with heart failure over a year ago. I didn't know I had AF, but it was diagnosed when I was in hospital for over 5 weeks (in intensive care for some of the time) 12 years ago, not for heart problems - the GP didn't bother to see me when I got home or give any advice so I was in complete ignorance , but leading a very active life, breathless and tired but doing a lot, including - before Covid - using the tube, going to the theatre, meeting friends for meals etc. I won't go into my personal boring history, but neither of these conditions I've discovered is as bad as I thought they would be, although it is frightening when you first hear those words. What would really help is sensible matter-of-fact information which you probably would get from a BHF nurse and the BHF literature is factual and non-sensational - look on their website, what I like about their booklets is that they are called positive things .like "Living with Heart Failure" or whatever else it is and you can get a lot of good advice about diet and life-style. And you will be advised all the time, just live a day at a time and find at least one good enjoyable thing in a day. Also use this forum - it is amazingly helpful and understanding. All good wishes.
hi i've had 9 heart attacks ,i make the most of life now, sod this locked down rubbish get out there and do what you want , don't sit in a chair and wait to die
Good advice , I will now I’m feeling a little better. X take care and thank you for the message x
Hi Jan. I too have just been diagnosed with 'heart failure' on top of long standing existing conditions such as diabetes type 2 and too many to list here. I'm new to this forum and very impressed with it and intend to relate my own tales of woe at some stage. The only comment I can make at the moment is perhaps a trivial one of semantics. Why is it called heart 'FAILURE'? It sounds so dramatically bad and scary. But if my car 'fails' its MOT I know it can usually be fixed - just like a heart!
Yes it sounds bad. I was in shock, but after being on here and seeing messages I’m really feeling more confident!
Your message is very wise,, thank you for sharing,, be safe, another weekend I’m pleased to have.
Take care.
Jan x
I think we all feel a bit scared and why not we’ve got close to the edge and your mind can make matters worse or better. Try to build on little treats each to look forward to wether it’s a film a book a meal or a phone call and you will get through it Good luck 🍀👍
You are absolutely right to think I was even dreaming about being in hospital and waking up crying 😭 gosh , think it’s about being alone in lockdown as well. Yes our minds turn things into horrors.
Take care , be safe.
Happy weekend x
Jan .
Hello Jan.
So sorry to hear that you are feeling so low. This will pass with time, It is best to not view it with urgency as nature works differently to our own expectation and has its own timeframe. I was diagnosed with HF a few years ago and can remember vividly just how desperate i felt at times. It will take time to adjust to a your new situation and it would be good if you could not see it as a challenge but an adjustment which just needs time. In the first few years it can take time and adjustments to medication but in my own case i can now look back and see just how things have improved. Also some of the symptoms you experience may also be associated with the side effects with medication. Heart failure does not mean the end of life it just means that it has been recognized that you ticker needs a little help. This is a good thing although a it takes time to accept that. It is my firm conviction that life is made up of good experience as well as the sometimes negative ones. But it is this that shapes us and rounds us as human beings. I feel confident that things will improve for you but don't try and bring it on it will come with time. I guess that what i am trying to say is that life is now, the past no longer exists and the future is only the now in waiting. Bless you and hope the old black dog passes soon, I'm sure it will.
Wow , thank you such a beautiful reply and honestly so true, an interesting way to look at it and the perfect help I needed. Thank you.
I’ve had cancer twice in my life I’m used to shocks and living in the moment. I’ve survived that, but somehow I felt on my knees when I heard this maybe as my mom died in ten minutes of a massive heart attack . And I’m really greedy to stay as long as I can with my three sons.
Thank you so much , I pray you are good. Have a fabulous weekend, take care.
Jan x
Hi Jan.
Thanks for your reply and good wishes. I was a nurse myself for 40 years and understand how important keeping a positive mindset can be. I can fully understand how important it is for you to be around for your family and there is every chance you will. Like another poster suggested the side effects can sometime give you the impression that your condition is worse than it really is. The key is to emphasis to your cardiologist that quality of life is important to you and to work with you in achieving the best medication regime that lessens any possible side effects. This may take time though but hang in there. There was a band back in the seventies that mentioned in the lyrics - Face piles of trials with smiles ! think that is a good philosophy of life to have. Sounds like you have already faced and overcome trials already, So this indicates that you are already more resilient than you think. If you ever need don't hesitate pop me a line would be more than happy to share a few words. All the very best. Take care.
James
Thank you for such kind and generous words.
I’m really grateful and appreciative!
I’ve fely really strange , all sorts of strange things and feelings , but hopefully once the meds are right all will be well.
I’m staying positive.
Thank you for taking the time.
Have a wonderful weekend, take care,
Jan x
So sorry to hear of your diagnosis, but as others have said, once the medication gets your condition under control you will calm down. I have recently been diagnosed with AF too. I’ve been told my heart is otherwise working fine, although it doesn’t feel like it sometimes! The AF itself can cause breathlessness and fatigue. One thing I would caution against is not taking herbal supplements as suggested by one member without first consulting your doctor or nurse, especially if you are on a blood thinner as many meds can interact with them. Good luck, keep posting and everyone hear will give you support.
Thank you so much, your kindness touches my heart . I know what you mean by alternative as I was a reflexologist and aromatherapy practitioner. The oils were so potent after a few years I had to give it up as they were all obviously going in my bloodstream, didn’t know if I was Arthur or Matha ha ha.,
Bless you for messaging me, I’m very grateful.
Have a wonderful weekend,
Hug 🤗
Jan .
Hi Crystal-21, I am 75 and was diagnosed with HF and AF in April. I am now able to take the dog for a walk, use my exercise bike and even do my own house work again. Just take one day at a time, and please be kind to yourself. Lots of lovely people on the site who understand what you are going through. Never be scared to ask a question, however `daft` you think it is, we have probably asked it ourselves. Your HF nurse is always there for you, same as the doctors. You are not alone. Best wishes Marianne. x
Hi Marianne,
Bless you 🤧 for your message!
I am very grateful,
Yes so many people so kind puts mind at rest!
Such great feedback, I felt better already.
I feel so much more relaxed. So thank you so much.
Be safe, take care. Hugs 🤗
Jan x
Hi Crystal, I totally understand where you are coming from. Everyone here has felt devastation when they are confronted with the life changing reality of a heart condition.
7 pills is not a great amount - I take 10, and each one is helping you and I. In a month or 2 you'll most likely have no feelings at all about taking them. It just becomes a part of your day. Its important that you do ask about Entresco if you are not already taking it. It is, apparently, very effective and often helps improve the condition of the heart.
It may be super hard now, but try not to get stressed, as doing so is simply not helpful at all. Life is hard enough with getting stressed about what may or may not happen. I find it best to do positive things that help my condition - the number one thing being to go on long walks in the countryside with my dog. I listen to audiobooks during my walks so that I focus on them instead of dwelling on negative thoughts. It is very hard to stop your brain thinking bad, but useless, things so I have found distractions to be very useful.
Chances are, that if you try not to get super stressed, that after a couple of months you will feel less stressed without even trying.
Hi there,
You are exactly right on all counts and to be honest I’m usually a very positive lady. I’ve had bad diagnosis in my life , but think it came out of the blue I was in shock and I think also the virus 🦠 and feeling so ill I could not and did not want to go for a walk or even get myself dressed in my nice things , it was a bubble bath 🛀 each day nice lounger clothes I was to tired.,
I hope soon once all the pills kick in I’ll be better , energetic etc,
Sounds great walks with the dog, I’d love one.
But I lived in Spain for 25 years just back 18 months ago and renting ( no pets allowed ); I love all animals,
So thank you for your kindness I feel better already..
Take care, be safe,
Jan x
Hi Jan, I see you have had a great response from other hearties.
I have HF ( a horrible title, an old term, why can't the medical profession think up a new name, say heart function impairment ). I had a massive heart attack about 6 months ago, a widow maker which severely damaged my heart. I had 5 stents in the LAD, the main artery.
I was diagnosed with PTSD after a traumatic time in hospital. What with that and the shock of the heart attack it certainly left me feeling the same way you are feeling, completely normal to feel like you do.
You will feel better eventually, it does take time for the shock of the diagnosis to pass.
O suggest you seek help from a therapist either via the NHS or privately. I had help from both.
I also take 8 tablets a day, at first they can give you side effects, but with a few tweaks and time , your body will adjust to them.
Your nightmares may be a side effect of one of your medications, check the leaflets for side effects.
I have had my ups and downs in the last six months, but have improved significantly, even with the severe damage inflicted on my heart.
I know you are feeling miserable at the moment, but things will improve.
Best wishes,
Paul
Hi there Paul,
Wow 😮 you have been through it ,thank goodness you are doing well now.
It’s all such a shock.
Yes I think you are right and once my pills are tweaked all hopefully will be well!
Thank you for your advice I’m very grateful for you taking time..
Stay safe and well now . Happy weekend,
A hug 🤗
Jan. X
Hi Crystal l can imagine your worry as l am exactly the same. I too have chf and A-fib. I also have a dilated atrium caused by the A-fib apparently! I take 12 tablets a day and before starting Amidorone l kept going in and out of A-fib. I did not want to start taking this pill as it is not a good one to take. However the only way to stop the A-fib. I don’t think l can stay on it as it’s for short term use only l think. Then l will be in trouble. It’s really scary. I did have a cardio version which put my heart out of A-fib but it didn’t last. Never mind
Hello
Thank you for your message, it is very scary.. seeing messages here seems the only thing is to stay positive.
It’s hard getting the drugs right to suit I’m guessing as everyone is different.
I have always been very slim but put on one and half stone... I’m tall but I looked like Humpty Dumpty , legs swelling , so many things .. but hopefully all will come together soon.
I pray you stay well and sort out your meds ..
Do look after yourself, have a beautiful weekend.
Hugs 🤗.
Jan x
Hi Crystal
Not sure who is Counselling who here lol, you have a lovely way with words !!
Hands Face Space to stay safe
Ha ha you darling..
you look after you ,amazing how your kind words helped me. Cannot lie I used to study , psychology, and a lot of things in my life I could write several books 📚 having experienced the pain first hand .. This is another bump in the road. Strange how quickly we can go down . But I’ll get up again eventually. I just pray my health stands me in good stead !
You have a great weekend. A hug..🙏
Jan x
Thank you everyone for sure reassurance, I actually had a spring in my step today , made homemade butternut squash soup. Washed all bed linen... you have all been so kind and helpful. Thank you all.
I know I have such a long way to go but I’ll take each day as it comes, .,,
Each and every one of you lifts my spirit, I will get stronger ..
Have a beautiful weekend. Thank you all again for info on YouTube videos, I listened to your stories ,each one a different experience, but everyone saying it gets better, I understand once we accept also.. the fear lessens .
Happy weekend. Be safe , stay well.
Jan x
Hi crystal tony here I was diagnosed with heart failure in January this year I had a triple bypass at kings Collage hospital I was breathing normally at once after opp do not be afraid the term heart failure sounds dreadful but it actually means your heart is pumping slower than it should and can be fixed take your meds and wish you well for the future tony
Hi Jan,
there is another forum on HealthUnlocked run by the AF Association. You'll find a lot more information about AF there and on their website heartrhythmalliance.org/afa....
In particular, it is often said that AF won't kill you and, on the whole, that's true. It may take some time to get the right combination of drugs to help you to feel a bit more normal. Bisoprolol is often a first choice drug but some people find its side effects difficult - though it is often difficult to work out what is side-effects of which drug and what comes along with the condition so it is worth giving things a good try before changing them.
I was advised to make friends with my cardiologist because, once diagnosed with AF, you will probably see a lot of them! However, under the current circumstances, that isn't always possible as you may be lucky to see the same person twice - but, certainly, find yourself a good GP whom you trust and feel comfortable with.
It isn't great but neither is it a death sentence. Stay healthy, safe and sane!
Thank you so much 😊 for your message, I also have heart failure so on a few drugs now.. of course each ache or pain I worry but doing my best ..
I’m more worried as my mother died with ten minutes of a heart attack,
I have found messages like yours have helped me sleep at night .so thank you so much .. I am very grateful..
stay safe . Take care !
Jan x
Hi Jan, I’m a bit late but may I suggest you also join the AFA forum which has lots of info and posts about AF. The heart failure may be a result of undiagnosed AF or it may be the other way around - I have a leaky mitral valve which is very common as one gets older. AF is not a fatal condition unless you try to run a marathon and heart failure just means your heart is struggling to cope right now. I’m not surprised you feel down with all those meds adding to your feelings but for now they are necessary, hopefully they can be reduced as time goes on.
Best wishes 🦋
Ahhh ,
Thank you so much , I do feel much better, how you have explained it .
I feel if it was told to me how you have said it I would not have panicked,, but I was in shock!
Yes I have the leaky valve the same., so I’m on a few different meds and feeling a little better .
Thank you so much for your message you are very kind , certainly helped to make me realise it can be kept under control.
Bless you always .
Jan x
Hi Crystal, welcome 
I'm really sorry to hear that. Our heart helpline team are always here if you'd like to chat to our cardiac nurses, we have an online chat available here bhf.org.uk/informationsuppo...
Really hope this helps, take care.
Crystal, I hope you are in a better place now. I am 18monthscin and still have days when the emotions take over. I have found a Facebook page Pumping Marvelous that is a charity specifically for heart failure. If you have nit found it might be worth a look. X
Thanks so much for yr message I’ll take a look at the site . Bless you thank you xx 😚
heart failure…. How to help
work and Heart Failure 
heart failure anxieties 
Heart Failure Worseninh
Heart Failure Genetic or Not!
