Please share how to live with afib wh... - Atrial Fibrillati...

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Please share how to live with afib while having very young children.

li17 profile image
li17
17 Replies

I have young kids 8, 5 & 3 at home. Since diagnosed I find it’s hard to handle the condition while not affecting the kids. If you are young and have young kids, can you please share how you live a positive life Witt afib and not affecting the kids? I’m so depressed and feel hopeless. I’m so scared that I can’t grow with the kids or can’t give them a full childhood.

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li17
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BobD profile image
BobDVolunteer

Whatever else you do, you must explain to them what is happening. One of our members did write a book a few years ago " My Mummy has Heart Hickups" for just this situation. I do not know if the book is still available or if she has any copies left but it might be worth asking around. I will ask her by pm.

AF is not life threatening and with the right treatment most of us live an active and happy life but I do understand that energy levels will be critical . My two boys were older than your three and fair wore me out if I allowed them to which is why understanding is all.

Andyt36 profile image
Andyt36

Hi my kids are 4 and 2,

I find that the head f**k ( excuse the French) that comes with AF, has been one of the hardest things to deal with.(waiting for the next episode...that is... which is the wrong approach).

Further the fear of not seeing them grow up didn't help. As time passes and as Bob has added, if we can accept that it is not life threatening and it is managed well, then there is no reason why you cannot enjoy your kids. Of course it depends how symptomatic you are (type of AF).

Then again if you are patient, and show your kids love I think that is a key foundation to help them be good young people..I would like to believe that AF won't hamper the love that we can give to our families although indirectly it can be quite draining.

Further take time for you, whether you do yoga, meditate or other a little time to calm the system is needed.

Enjoy your family.

Wishing you all a peaceful Christmas and a good and healthy NY.

A

UScore profile image
UScore in reply toAndyt36

This is a really good answer, and similar what I was coming here to post.

I've got a 4 year old and a 2 year old too! At first I was scared to look after them on my own in case something happened to me, but I've come to realise that I'm fortunate that AF doesn't make me collapse or leave me incapable. I'm able to take them home (if we're out) and pop them in front of the television until my medication takes the AF away.

If I'm honest, I'm possibly a little less adventurous when on my own with them; I'm not going to take them on a long country walk or go somewhere isolated where I can't get home or get help quickly. But that might change as I get more experienced with dealing with my AF, and as the kids get older.

In some ways it might help relationships with kids, because although AF isn't actually life-threatening, it still reminds you how important it is to spend quality time with them while you can.

Childhood is shaped by one's parents but is AF going to intrude in a detrimental way? It may be debilitating but it's not a very fatal condition. All families are different. I know one where the father was retired and elderly (in his mid sixties when the children were born) and he was there for them all the time until he died in his late seventies. My father was always at work, except for holidays and I didn't see much of him. Thus life didn't change much for me when he died suddenly from pneumonia when he was 42 and I was 7. I have to say that other relatives stepped in and have been more supportive than they might otherwise have been.

I had heart wobbles when my children were little but they didn't bother anyone. When I was 45 (and they were 7 and 6) I was diagnosed with cancer and felt very bad about the possibility of dying and leaving them but in fact I didn't do so. Whist one cannot but worry, it is best to look on the bright side, be optimistic and hope for the best as things might (and do) come good. Being glum does one no good and if there are limited days ahead, they need to count.. I would have been pleased to last until Christmas, and delighted to see 50. To see my children reach 21 was a wild dream. They are in their early thirties now.

Andyt36 profile image
Andyt36 in reply to

Now that is a beautiful story and helps out things in perspective, even in this new years eve where just over an hour ago I went into AF. Wow isn't that funny or just wrong oh well.

in reply toAndyt36

It can be hard sometimes to see ahead and believe there will be a future. The older we get, the less of it there is, of course! Anyway, this should be the last time you'll have AF this year.

Gillyflower1965 profile image
Gillyflower1965

hello, Its me with the book, when my heart issues started I was forty and my children were 2,5,7,and 9 .. no wonder I was knackered .

They really cant remember much of my illness, except that occasionally I went to the hospital. They are now 16,20,21,24 and just take it as part of me.

I wrote my little book to help them make abit of sense of it all as I to was worried about how I was going to cope with them. I did have to stop breastfeeding because of my medication and there were times on Flecanide I was soooooo sick, When I had my ablation they came and visited me at papworth but all they remember is feeding the ducks on the hospital pond.

I'm on facebook as Kirsten elder and do feel free to email me Kirstenelder@talktalk.net anytime you want a chat,

If it wasnt for AF I wouldnt have done some of the things s I have done and I would never have met Bob , He is one in a million, and is my best mate so every cloud had a silver lining.

It is a challenge having AF the anxiety that goes with it is rubbish but as Bob says it doesnt kill you, loads of love,

Kirsten

and a snog for Bob xx

BobD profile image
BobDVolunteer in reply toGillyflower1965

XXXX

Hello again Li

You mentioned a couple of weeks back about your stressful career in engineering and the long daily commute. Thinking back, I was not sure who was looking after the children. May I ask if you are a single parent with child care in place? Not prying, just trying to understand the context of your problem.

You know from our previous conversation that I identify with your sadness about your situation, but we differ on the matter of taking an SSRI while using medication to prevent PAF and a DOAC, both on an as required basis.

I still feel you should reconsider the offer of an SSRI from your psychiatrist. With proper ECG monitoring, this may be life changing for you in a good way.

In the meantime, I salute your courage and fortitude, in supporting your family at this difficult time. You are a great father.

li17 profile image
li17 in reply to

When I was working, my wife stayed home to take care of the kids. I kept feelong regret these days. As last years this time I was offered an opportunity to changed to another job which is only 10 miles away from home. I was tempted and wanted to take the offer as last year at this moment I already found it didn’t work to spent 3 hours on the road daily to get a little extra income. I should save the commute and spent the time with my kid. But I didn’t take that offer because of the couple thousand less than my current job. But that job is much less intense, as I would be a manager then rather than working under someone. Looking back, I’m pretty sure if I took that job, I would not have developed afib. I feel deeply guilty and regret that I turned away the opportunity and now I destroyed my family and the kids happinesses. I guess I should be ok to live another 20 or maybe 30 years as everyone’s saying afib doesn’t kill me. But the quality of life, and the quality of companion that I can provide to the kids are dramatically vanished, I think no one can fight with this conclusion. An afib and depressed daddy vs a full of energy, positive, calm, brave and smart daddy. The difference is not arguable. I also suspect I couldn’t do lots of things that I would do with the kids if I didn’t have afib anymore. I used to have lots of expectations for life to enjoy with my kids and planned lots of places to explore with them. For one, I planned to drive to yellow stone and live in here for couple nights in an RV. Now I don’t dare to do it. What is something happened during the night and the closest ER is two hours away? There are just too much change all overnight that I still haven’t come to the term with. Looking back, my extreme stress and newly developed panic attack must have played a big role in the development of afib. Now everything is too late and I couldn’t reverse anything. I will do whatever good to the kids to provide them a fullest childhood. It was once a commitment that I was sure to happen, now it’s a miserable hope I don’t have confidence on.

I really need some meds to help my mind. Being an engineer, I used to analyze things in very details, that’s the same case for afib. But the more I research the more hopeless I have. When seeing the psychologist after three months, I said to her that I know exactly what she was trying to tell me, and I told her all things I should do to make me to in with life, I said technically I know all these, but emotionally I just can’t do it, at least yet. My mind is too strong to be changed. I know I can only help myself. But at this moment, I am still depressed and can’t do much.

Like yesterday, my 3 yo sweet boy woke up early and brought a box of puzzle to ask me to play with him. I wanted to do it so much, but I could really enjoy it though I force myself to smile and play and tried to be normal. But it’s not the same anymore. The peace of mind, the calmness and relaxation and confidence of me are long gone. I just wish he didn’t feel it. I feel so sorry for the kids. How I wish afib is something that can be cured permanently and then I’ll commit to any treatment or surgery that can bring my life and peace of mind back, no matter how much pain I need to go though. I just feel guilty for not being the good old daddy for the kids anymore. Some moments I even though of what if I die while the kids are so young, my tears came right out since 19 years for the first time. I want to be the normal me for the kids so much. I know there’s no way out and my life has ended somehow. I know I can only be positive and face it and try my best to bring life back as much as possible. But the regret and guilt inside are draining me every second. I am so sorry for the kids. I can’t even drive them to SeaWorld alone now, which I sometimes did and really enjoyed every single second being with them. I need to find a way to keep the kids happiness on track and grow with them at least into their twenties. Looking forward, if I can make it to my 70, there’re 33 years again, instead of enjoying every moment like before, now I’m suffering every second. It’s only been four months since I was diagnosed, I felt I have missed so much with the kids and it feels like centuries long. Can’t imagine how to live another 33 years like this. And again, I will do whatever possible to lessened the impact on the kids as much as possible. I know my smart kids have sensed something wrong about daddy, I’m so sorry.

I don't know what else to say to you Li. As before, I feel you should go back to your psychiatrist to discuss his/her previous recommendation of an anxiolytic antidepressant. Explain your anxiety that an SSRI will interact dangerously with any treatment for paroxysmal AF.

I also wonder whether you should rethink your strategy of using your anticoagulant on a prn basis. Has your cardio approved that? Is that common practice in the US?

Consider that you could recover your old vitality within 3-4 months. You could be planning that trip to Yellowstone.

In the meantime, consider a period of sick leave if that is feasible. Even though it may not seem so now, there is light at the end of the tunnel. This will pass if you accept the help you need.

When I was in my darkest hour, I felt my boys would be better off without me. Ultimately I understood how wrong it would be if I had wilfully made them fatherless. Sertraline turned my life around.

Embrace your family, they love you and they need you.

li17 profile image
li17 in reply to

Thanks for being patient and keep responding to my posts. I felt the same. Sometimes I feel I’m a burden to my family and thought maybe I should just die. But I know daddy can’t be replaced by anyone else and the kids need a father figure. I had no doubt I can be a great father before, but now I’m not so sure. I really thinking to take SSRI to help with my mind.if it can keep me positive and functional, I will take it for as long as I can.

Gillyflower1965 profile image
Gillyflower1965

Hunny, I have been there with the anxiety the feeling of hopelessness how am I going to cope etc please email me, you are not alone , you are giving your children the gift of knowledge , and teaching them we can cope with crappy stuff , sending soo much love , Kirsten x

li17 profile image
li17 in reply toGillyflower1965

What’s your email address please?

Gillyflower1965 profile image
Gillyflower1965 in reply toli17

kirstenelder@talktalk.net

Li. If you don't get a response you might do better to send a personal message.

Hi li. I just saw your post and tho it's a year old felt I wanted to respond.

My view comes from what I observed over the years while practicing as a nurse in the US.

We have such problems over here with addiction, people believing a pill is a quick solution,and poor coping ability to illness in general.

We spend billions of dollars looking for the perfect cure and we are still not close to many other countries in health care success.

I believe when a child has a sick parent (chronic or acute) the parent has been given the gift of helping their child accept ill health as a normal part of life. We may not know how long we will be here but if children can see from example that life can go on and learn to incorporate healthcare difficulties into their thinking seeing it as just another problem they can successfully cope with in life they will grow up to be strong and remain positive when their own health declines.

They can learn a pill doesn't always solve things, that running away from the problems through alcohol, drugs, food etc is not a solution and, maybe most of all, allowing them to express their fears in ways they understand them, giving them lifelong healthy coping skills like nothing else can.

And when they grow up, age, and possibly have their own ill health to deal with they will be 100% prepared.

Take care. irina

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