I feel I should apologise as I know there are lots of people here that are going through tough times but I am posting this as positive news and interested to hear from people who have recovered although I think I will be recovering from this for rest of my life.
I went for a cardiology appointment yesterday and went very well. I was informed that I should stop all cardiac medications which felt like my crutches were being kicked away. So my atrial fibrillations have luckily gone away.
For background I have been through infective endocarditis, a mitral valve open heart repair plus readmission for apparent dressler syndrome. Unsurprisingly has taken away most of my year.
I suppose my question is once your heart meds removed what are the possible side effects? I was on warfarin, bisoprolol and digoxin.
Also I am still processing this mentally and was wondering just how long the trauma can last? I know it’s very subjective but any thoughts welcome.
Regards
Lucky person
Written by
HeartSketchBristol
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Fantastic uplifting post that has been a joy to read on this grey cast of a morning.
Please never apologise for such great news, I am very pleased for you and I hope that the transition from the medication goes well for you.
The only suggestion I can give you that maybe of some help is keep a daily note of how you are feeling so that when you speak to your Dr you can refer to it, you will be surprised how quick we forget things.
As for the mental side of things that really is " how long is a piece of string " but there is help and your Dr should be your first port of call or your heart team.
Please don't suffer worrying about what you have gone through, shock and even PTSD is very common and there is plenty of help....just ask.
Remember you never alone, even with your great news it sounds like you have a little way to go to appreciate it yourself.
Yes definitely looking to get some help and for the first time ever considering some form counselling especially as mental reserves were definitely in overdraft after lockdown.
I am very lucky especially with the support I have had plus this forum really helps.
Trying to become more of a glass half full person but usually I can be why is there a glass in the first place and why am I being offered it… 😆
Yes, this wee journey does eat into our time somewhat - but everything sounds really positive so I hope soon you'll be able to look back on this as a memory and an experience and see how far you've come. It's certainly very traumatic, the anxiety can feel as bad as the heart condition- so be gentle with yourself and listen to your body, not just your head 😊
In terms of coming off meds, I recently had all my heart meds stopped (bout of myocarditis, but scans all looked good), but I started getting awful palpitations, so after speaking with a few folk (including different doctors) I was able to go back on bisprolol at a low dose. That's just my experience though... do keep a track of how you're feeling and flag up anything unusual to the doctors.
thank you. I was fortunate to get my self a home Kardia ecg machine that works with a smartphone so can use that to monitor physically plus bp monitor.
I am also back in work full time this week being the first time I have managed that. I remember a consultation with a surgeon post op who said for some people work can be like therapy, if you enjoy it then do it.
I am so envious of you. If i had that news i would have celebrated with a triple back somersault with flick flack! Congratulations and thank you for giving us hope.
🤣🤣 thanks for advice and was great this week to talk to a physio routinely about Achilles tendinitis due to increased activity and not some cardiac fallout. But will wait for a bit before attempting gymnastics. 😀
Depending on the dose you are on, Cardiolodists usually recommend coming off Bisoprolol gradually. I was on 2.5mg once a day, and the recommendation was to go initially down to 1.25 for a week.
People do complain of symptoms if they stop immediately. Warfarin apparently does not need to be tapered off Digoxin depends on the reason it was prescribed (e.g. if for an irregular heartbeat)
I would talk to your friendle pharmacist. They are usually knowledgeable in this area.
thank you. I did talk to my gp and they recommended tapering either the digoxin or Bisoprolol. Have gone with Bisoprolol and reduced from 5mg a day to 2.5mg.
Hello, lovely positive news. So pleased for you. The anxiety can sometimes feel almost worse than the physical side. For me my physical recovery has been good. I am nearly a year post CABG x4. I would say I have found it more difficult to manage the anxiety after the surgery. I do cardio rehab at the gym with a Cardio Nurse who is wonderful. Not sure this is accessible across the UK but if you can find some exercise support it has made all the difference for me. I wish you a continued great recovery and please do talk with us hearties whenever you need to. Everyone on here is a great bunch! 🙏
morning, what fantastic news. Could you perhaps speak to a cardiac nurse? And as others have suggested maybe start some exercises or yoga to help, i would speak to your cardiac nurse again on this subject. Good luck.
Thank you. yes I can do that and also spoke to my gp for some advice.
As for exercise back to similar levels I was at prior to the Illness. I took great joy today in repurposing my cardiac medicine box to carrying my sandwiches for a hill walk.
Yoga and breathing exercises are definitely helping. Although when I say yoga it’s more a good stretch before and after exercise whilst listening to uplifting music.
Such fantastic news! Many thanks for posting it. 😀
I know what you mean about medication being a crutch. Many of us here were getting on with our lives, no regular medication (or in my case just Losartan for higb blood pressure) and suddenly a heart event means you have a cocktail of drugs to take. Crutches you didn't ever want to have to use. Now, in your case, they've been taken away. I guess under the circumstances you have to regard it like having had a broken leg. You'd be happy to throw away the crutches when the bones had set.
Keep positive and look to the future. I'm sure in time you'll regard this as just a hill that you had to get over.
Thank you. Yes understand the broken leg analogy and did have crutches for an old injury.
I suppose it’s the singular nature of the heart and importance where the analogy breaks down.
But you have to have a model to progress and be positive.
Today I used my cardiac medicine Tupperware box as a lunch box on a hill walk! So to be a cliche taking each day at a time whilst I sew my new life together with my old.
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