AF, STROKE, HEART FAILURE : So scared and... - AF Association

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AF, STROKE, HEART FAILURE

Juliewoo
Juliewoo
29 Replies

So scared and worried. Both my parents have AF (I myself was diagnosed with it last year at age 43. My mum had a stroke nearly 6 years ago and my dad had a stroke 10 days ago. The doctor then informed me yesterday that my dad has heart failure and his heart is running at 20%. I do t know where to turn

29 Replies
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Rellim296

Oh, what a difficult time for you. Try if you can to see the glass as half full and not half empty and be glad for what you and your parents have, even if it's not going so well right now. There are so many improvements in treatment and medication constantly being introduced and these will have benefits for us all.

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Juliewoo
Juliewoo
in reply to Rellim296

Thank you very much for replying. The doctor told me in such a blasé way about my dad's heart problem that it threw me. He's never so much as taken a paracetamol so the fact he's in hospital now has floored me. Mum is also in at the moment with a broken back due to a fall so my mind is working overtime!

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Rellim296
Rellim296
in reply to Juliewoo

What a lot you have on your plate. Doctors are all the time dealing with problems and don't always stop and think how what they say can sound. I think the term 'heart failure' is one that could do with a makeover.

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absolutepatsy

So sorry you are having such a hard time. Were you parents on anticoagulants before the strokes? What medication have you been prescribed. Are you on anticoagulants? Sorry for all the questions but if your not then speak to your cardiologist and ask why, its really important if you have AF to be on the proper medication to control the heart beat and rhythm, but more so to protect against you blood clotting and you having a stroke as this greatly reduces the risk. Read as much information as you can on the AF Association web site as this really helps to put everything into perspective. Take care.

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Juliewoo

Hi

Thank you so much for your caring reply. My mum is on an anticoagulant (Warfarin) since her stroke and my dad is starting one (a new one similar to Warfarin but doesn't require the regular blood tests) on Monday, (not sure why Monday but that's what his consultant said yesterday). My cardiologist mentioned me having Warfarin at my last appointment but decided against it because he said I was a little too young? I'm there again on June 1st and shall be telling him about my dad too having a stroke and we'll see if that makes a difference to me maybe starting an anticoagulant. I'm on 1.25mg of Bisoprolol and 50mg of Flecainide daily (I was on twice the amount of Flecainide but stopped the morning tablet as it made me VERY tired at work, I informed my cardiologist of that and he was fine with it.

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Juliewoo
Juliewoo
in reply to Juliewoo

I was also on twice the amount of Bisoprolol originally but my GP lowered that as I was shattered.

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Robyncarmen

Hi Julie yes I was put on a new drug similar to awarding its called Xaralto its similar to Warfarin but does not require a blood test once a month. Pradaxa is the same as Xaralto. It's imperative that you need a blood thinner to stop a Stroke from happening you definitely need to be on one.

Sorry to hear about your Parents & I hope you can cope a little better soon.

This is a great site for us AFrs it's helped me heaps over the last few years.

Hugs fro Aussie.

Rob cxx

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absolutepatsy

Hi, absolutely insist you are put on anticoagulant, as soon as possible, ask for one of the newer ones, Riveroxiban is one, it means not having to keep having bloods taken ever week and watching your diet. I am told that because I am on Riveroxiban that there is a chance I may have a bleed, in my opinion, after reading all the information I could, I decided at 56, I never had a bleed but am now 5 times more likely to have a stroke than someone who doesn't have AF. Hope this helps you, especially with your poor parents history of stroke. Keep your chin up, you will get through this.

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Droopy60

I was on Warfarin following diagnosis of afib and heart failure in 2010. All seemed OK until Christmas Night 2 years ago when I had a massive gastro bleed and spent a week in hospital. Since then I have been on daily Heparin injections which appear to be working well. Please don't just accept Warfarin as the norm, there are alternatives.

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CDreamer

Hi Juliewoo and welcome to the forum.

I am sure you are very concerned about your parents and I do hope they are r ceiling appropriate treatment.

AF does increase your risk of stroke which is why it is so important to take an anticoagulant which then decreases your risk. Seeing a competent Cardiologist who specializes in electrical problems of the heart is important to ensure you get access to treatments.

Knowledge is power so may I suggest that you visit the AFA website where you will find a lot of information about AF.

This forum is a very supportive and friendly so if you want to know anything don't hesitate to ask. The important thing about coping with chronic conditions is how to manage them.

Very best wishes CD,

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Hidden
Hidden

Julie, I can only imagine what you are going through now.

I go along with has been said by others, particularly about taking anticoagulants. Never mind your young age do ask again .

Sandra

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Hidden
Hidden

Hi it's a difficult time supporting parents at this time. Don't neglect yourself during the process. If your parents had AF why were they not on anticoagulants ? At least they are now. With your parents health as it is now I think open discussion with your consultant should result in you having anticoagulation. Read around it on the info for patients on AF website and make list to take to discuss with docs. Good luck with everything and remember yourself too

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Juliewoo
Juliewoo
in reply to Hidden

In answer to your question regarding why my parents weren't on anticoagulants if they both have AF is the doctors didn't know they had AF until both their strokes occurred sadly

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Hidden
Hidden
in reply to Juliewoo

Ah well hopefully you all improve soon x

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rosyG

try not to worry about yourself too much- strokes happen with AF if patients are not anti-coagulated but when you are young your heart muscle is still smooth so it's harder for a clot to form. The doctor should work out your Chads Vasc score- you can do this too if you look at the AF website. Also your bleeding risk (HASBLED score) and then help you decide what's the best way forward.

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Mazza23

Please try not to worry to much I was admitted to hosp with heart failur I was so worried at those words I thought any minute now they will be in to measure me for my box ,but here I am 3years later hf is much improved AF under control I have had a TIA but no side effects thank goodness for modern medicine

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Juliewoo
Juliewoo
in reply to Mazza23

My dad's consultant has said my dad's heart is functioning at only 20%. That in itself has me worried sick. My dad is very tired and breathless

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Mazza23
Mazza23
in reply to Juliewoo

Have they got him on diuretic beta blocker anticoagulant potassium lots of rest you don't say how old your dad is I am 73 I know it's easy to say but stress makes it worse it was the fluid on my lungs that made it hard to breath had 9 lt removed

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Tracyrdh

Be sure to take care of yourself. Be sure you have a good doctor to treat your AF with rate and rhythm control medications and anticoagulant to prevent stroke. Also maybe look into to having an ablation to correct AFIB. I had an ablation in Nov. 2017 and so far so good no AFIB. You need all of your strength to take care of your parents. I wish you the best. Hope you can get great care and compassion from you doctors for yourself and your parents. When AFIB hits the episode cause so much fatigue and anxiety it is hard to think clearly. Wishing you the best.

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FlapJack

Julie, lots of good advice. It may seem selfish, but maybe you need to focus a bit on your condition first because of you are not firing on all cylinders, it will be even more difficult for you to cope with your parents problems. As you probably know, we are not medically trained and therefore shouldn't comment on medication, but some beta-blockers do have fairly aggressive side effects and it might be an idea to look at types other than Bisoprolol or alternatives such as calcium channel blockers to see if they might be more suitable for you.

Given your family history, anticoagulants for you should be properly considered with expert medical advice.....clearly you are having one hell of a time at the moment, but hopefully the support you are getting from the forum will help you through this ordeal....very best wishes.....

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Juliewoo

Thank you to each and every one of you for your informative and caring replies. I'm going to read them all now digest what you've all said. Thanks again :)

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Jumper

I would like to add my support to RosyG's comment. Stroke risk increases with age and the CHADS2 score takes age and other factors into account. I have lone AF, 17 years, and had a PVI and never been prescribed anti coagulants , other than during the PVI period. See your DR or cardiologist as they should have done the scoring for you. It is not this forums role to say you should or should not be on anticoagulants You need professional support, preferably from someone who will give you the time and reassurance to discuss all your fears about your own AF and any need for anti coagulation.

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Rellim296
Rellim296
in reply to Jumper

I agree. Anticoagulation is a double edged sword.

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Hidden
Hidden

Hi Julie,

I am in a similar position to yourself.

I have heart failure, (although I'm not sure how much of my heart is not functioning. I don't ask.) I'm no were near as ill as your dad so I would say mines not too bad. I also have AF. Im 36.

I'm on bisoprolol, ramipril, digoxin, bumetinide, spironolactone and warfarin.

I would definitely suggest they put you on either warfarin or asprin to remove the risk of a stroke for yourself. Especially as your parents have had one. Just as your care team or cardiologist.

I hope your parents and yourself keep well.

Sarah. X

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texaslady58
texaslady58
in reply to Hidden

Hello.. Do you mind me asking you how the dr's concluded you have heart failure? I went in for a heart echo as I have mitral valve prolapse. It shows I have left ventrical "dialation". Mild/moderate. He told me that is stage 1 congestive heart failure My world is turned totally upside down. It is consuming my every waking hr. I am scare out of my mind. Was having jaw pain-upper back pain and arm pain. Did heart cath and no blockages, but my heart pressure readings were 16. Said shouldn't be over 12. I find it very hard to live my life in fear of dying. I know this is not helping. I DO try to go more now, trying to play catch up and live in the moment, but this CHF never ever leaves my thoughts. I am so sorry for using your post to write about myself. I am having a very bad day. In Sept., 7 mo. ago, my EF was 55-60 4 mo. later during heart cath, it was at 50%. EF%. Please, could you elaborate how you are doing and how long you have had HF? Thank you so much. :)

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rosyG
rosyG
in reply to texaslady58

Please don't be scared all the time- I think when things are identified as mild to moderate it's a good sign When it's severe then it gets more worrying

If you start doing all you can re diet, weight loss if needed, gentle exercise ( get advice if need be on what to do about exercise and everything should be done carefully) then you will help yourself as much as possible,

Hearts, like the rest of our body, can repair and renew itself and if you eat the right things and take any extra burden away from your heart- smoking, excess weight, etc- it can make a great difference.

You don't say what further tests/ treatment you may be having but there are lots of medications now that help with heart failure,

When my elderly mother ( not alive now) was diagnosed with heart failure she lived many more years after her diagnosis - I think the terminology is very scary -

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Juliewoo

Hi

Thanks for the reply. If you read my post you'll see that it's my dad who has heart failure not myself. The doctors found that our after an echo gram my dad had last week.

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Beancounter
BeancounterVolunteer

Hi Juliewoo

So many great replies, and not sure I can add too much, but perhaps just some observations.

Stress and worry, and right now with your Dad that's completely understandable, is often a trigger for AF, so keeping YOU healthy so that you can support your Mum and Dad is very important.

First step I would suggest is knowledge, heart failure is not always as serious as it sounds and can often be treated, find out exactly what the problem is with Dad and then ask lots and lots of questions, in fact hound the doctors with questions, for your Dad and you. The more you know the better you will understand what is happening, and the better you will feel.

Now you, with both parents with AF I fully understand your worry, you should be seeing an Electrophsyiologist, does he/she know about your Mum and Dad, the doc needs to know and you need to discuss it with them. He/she can advise if anti-coagulation is appropriate for you. It always a balance of risk/reward and the usual measures may not apply in your case, you need specific medical advice here.

Second step is support, we are here and happy and willing to talk about anything AF, we have all been there got the T Shirt, we are not medically trained, but in some ways we are better as we all suffer. As long as you never try to take any medical advice from the forum the support you will find will be immense, I guarantee that.

Third step, scared.... Now here we are the experts, and in many respects more so than the medical staff. There is not a person on this forum who will honestly tell you hand on heart (pun intended) that they have not been scared. Scared for themselves, scared for their children, and scared for the people they care for. Scared is how you come into the AF world, scared is how you cope with treatment plans and procedures and scared is how we carry on our lives. But scared is not a permanent fixture, someone has just posted the most wonderful comment which says

"I have AF. AF does not have me."

It's really hard to believe that at first, then as knowledge grows, supports helps, and you comes to terms with AF, slowly it grows on you.

It will grow on you too given time.

We are here for you

We are here to support you supporting your Mum and Dad

Be well

Ian

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Juliewoo

Quick update

I am with my dad in the hyper acute stroke ward of another hospital. I went to visit him this morning at his regular hospital and he wasn't himself so a doctor was called and he was sent to a more sofisticated hospital for assessment. It transpires that he's had another stroke due to his AF sending a clot to his brain.

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