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British Heart Foundation
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What should I expect?

Hi all, I am new to this forum. I had a totally shock diagnosis of Atrial Fibrillation and severe heart failure last August. I am only 52 years old. Atrial Fibrillation still persists but heart failure is improving. I think I have been going in and out of AF for years and not known. I have never had high cholesterol or high blood pressure. Angiogram showed no need for stents and MRI showed I had not had a heart attack so the cause remains unknown. Feel a bit let down by Cardiology. I still have lots of symptoms, which I have told them about. What should I expect? I am on Apixaban 10mg, Spironolactone 25mg, Digoxin 250mg, Furosemide 20mg, Candesartan 16mg and Bisoprolol 10mg. They want to increase the Candesartan to 32mg but my blood pressure is constantly low 106/70 last time.

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Hi, welcome to the forum. You will find a lot of people here who have been through the ringer with one cardiac related issue or another who, like you, were in shock when they joined but are now ‘happy’ to help others in the same boat. So, what to expect? I’m not going to try and say everything will be rosey, it won’t, but do not despair. I think your immediate future will be dominated by medical appointments , discussions about your drug cocktail, changes to your drug cocktail, panic (don’t worry it’s normal) potentially anxiety and depression (we do our very best to help, but there is professional help out there as, again, these are normal reactions), exercise, change of diet (you will almost certainly find you go on a health kick, almost everyone does. The important thing to remember is that this is not the end, life will go on. You may need to make some changes but you should still have a full life despite the heart condition.

Listen to your medical team, take the meds, talk to people and don’t bottle things up.

Steve

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Hi Glencrosh , stevejb1810 has given a very good description of the way ahead. My symptoms and medication are very similar to yours and I have spent two years of medication being juggled to get to a point where I am feeling much better both physically and mentally. It is a known fact that 60% of heart failure patients developed depression which I found immensely comforting. If I have a day of anxiety or depression it isn’t me, it’s my physical Illness. 😀

Try not to look up too much on the internet, especially American sites. There is so much gloom and doom out there.

Go to medical appointments armed with questions and try to take someone with you who will remember what you are being told.

Eat well, and try to find what your own personal triggers are for AF. Mine is alcohol.

Remember that, ironically, lots of us probably end up living much longer, healthier lives because of AF and HF since we make changes to our diets and exercise regimes.

I entered a lift yesterday at the same time as a younger person who appeared to have had a stroke. I mentioned that it was a shame that we couldn’t use stairs.

He said, “I’m just very glad that I can use a lift”. Glass half full !!! 🤗

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My husband had the same out of the blue scary news 14months ago when he became ill on holiday in Kenya. Clear angiogram, in af .We were unable to fly home for 6 weeks and were both terrified but just over a year later he is actually feeling better than he has in years he had been ill a longtime but didn’t know. He is back at work full time in building sites, af went by itself, He is on drugs for life but he feels so well, and enjoys life more than ever. The cardiologists have no idea what caused it, but what we have been told over and over again is heart failure is a very broad term and don’t let the name scare you. We found the bhf rehab at the hospital brilliant and he still goes every week. They didn’t change his drugs just stopped furosemide. Other drugs he has are very similar to yours. It is such a scary time best advice we were given was don’t google, write down questions in advance as you think of them for doctors appointments etc and write down the answers at your appointments so you don’t forget them I always went with my husband to every appointment if you have someone to go with you that might help. Best wishes

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I'm 62 in march apx 1 year ago my GP sent me to our local hospital for a sleep Check as. I had been sleeping badly - Apnea was suspected

Test proved I was actually in heart failure with AF. + Extremely high blood pressure. I had a cardioversion procedure to shock my heart back into rythm which lasted a whole 6 weeks before reverting to AF

After various juggles with my medication I have this month been considered stable enough to be discharged from constant supervision to three monthly checks unless I have any adverse events or symptoms.

The only lasting legacy is tiredness - nearly all the meds say 'may cause drowsiness' some days I could sleep through an atomic bombs attack so I'm making positive steps to ensure I 'get things done'.

I've also been scheduled to attend a specially coordinated cardio exercise program it's not really vigorous enough for weight loss which I'm achieveing by close diet scrutiny the exercise is to regain and retain suppleness

I hope this has given you some insight into how the condition is an ongoing reality 😊

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Sounds similar to me, been diagnosed with af & heart disease as well as embolisms. Been in hospital twice this year for a total of 5 weeks. Had a cardioversion and on waiting list for ablation. On a similar cocktail of pills but feel almost back to normal and have restarted work this week after 3 months. My advice is take things slowly & listen to the doctors. Google can be dangerous but also useful at times

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Thanks for all your replies folks. They keep mentioning Cardioversion but I think they are hesitant as I may have been in AF a long time. I am attending a cardio rehab class every week. I guess like everyone else I just wish there was a magic wand.

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