Caring for a person with AF

My daughter is 26 and has congenital heart disease, she was admitted to hospital 3 weeks ago and diagnosed with AF. During 26 years of hospital visits this had never been mentioned or picked up before, can it have started all of a sudden. She has been put on warfarin, digoxin and verapamil. I am worried about how to help her manage her condition. She is very laissez fairre about it, but I am not. She also has a 6 year old son to care for. How best can I support her in her journey with AF? She has a CPAP machine for her sleep apnoea which is supposed to help with her AF, does anyone have any experience of this? As you can probably tell I am more than a little stressed with coping with my feelings about her diagnosis.

8 Replies

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  • Maybe this next diagnosis feels like the straw that broke the camel's back. You are in the "sandwich generation," providing care for several loved ones leaving little time for your own needs. So glad you contacted this site, watch for helpful responses soon!

  • That is exactly how I feel, just not sure how much more I can cope with.

  • Hi Diane

    I understand your stress, it's perfectly normal to worry about a child and although it has never happened to me, I'd be climbing up the wall if it was one of my daughters.

    However, it's very likely that the AF has been caused by the congenital heart disease or the sleep apnoea the two often go hand in hand.

    But to be honest the AF is probably the lesser of her worries, depending on the nature of the congenital problem, AF is very unlikely to cause her to suddenly keel over, if that is what you are worried about. A very famous doctor in the US often says. AF is seldom fatal, it just feels that way during an attack.

    I am not belittling AF here, depending on what she has and what the symptons are, it's a bugger of a condition at the least and literally disabling at the worst, but AF itself seldom kills. It's the other challenges which come with it, such as stroke (when she is older much higher risk) and even contibuting to the heart condition she has.

    Ideally why don't you ask if you can go with her to support her at her next appointment with the specialist? then you can ask all the questions you like to your "hearts content"

    And ask away here, we are all sufferers, so we've been there, done it, and even got the "horrid green" T Shirt (Sorry AFA couldn't resist :) )

    Be well and may your daughter be well

    Ian

  • I always go with her to see her heart consultant and AF was never mentioned that is why it came as such a shock when she was suddenly admitted to hospital with a heart rate of 180. Thank you for your support and maybe I will get the green t shirt too!!

  • Thanks Bigleg, that is something that I will certainly look into, it has given me food for thought!!!

  • Hello Diane - I'm sorry that your daughter has so much to cope with in her young life and I can understand your anxiety on her behalf. From watching my husband's reaction to my PAF episodes, I came to the conclusion that things are often much worse for the carer/watcher than they are for the patient. This may be why your daughter seems to be laissez faire about the lesser of her conditions - she has to cope with it, whereas you probably feel that you need to help her and can't do enough.

    Heart disease and sleep apnoea are known causes of AF and I understand that it can just start up abruptly. Have you been able to accompany your daughter to her consultant appointments so that there are two of you thinking of questions to ask and listening to the answers?

    Many areas have AF/arrhythmia support groups where you might be able to meet with other carers and share ideas - could your GP advise on this?

    Finally there is this forum where someone will have an answer to any question and where we all understand the stress that AF can cause.

    I wish you and your daughter well and give your wee grandson a big hug.

    xx

  • Thank you Finvola for your support, it certainly feels a lonely place at the moment, I have appreciated the comments and suggestions. I usually accompany her to heart consultant appointments but AF has never been mentioned and it was a shock diagnosis. She has an appointment at the end of next month with her heart specialist so hopefully I will be able to ask the numerous questions that are buzzing around inside my head.

  • Please try not to be too anxious, I know that may seem heartless to say, as long as she is sensible with exercise, diet and is able to find some way to relax, she will be OK.

    I have stated so many times regarding my own health, congenital heart disease, a leaky valve, AF. Hypothyroid, etc. I am on Warfarin, Verapamil, Thyroxine, etc. I am still and kicking and intend to go on doing so as long as possible. I also have Gallstones and have recently been told I have Gout.

    The open heart surgery to repair the hole in the heart also cured me of migraine.

    Please attend the hospital and be as supportive as you can. There are many people there who care.

    Give your daughter a hug from me. XXXX

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