Problems Eating after Heart Failure

[Batty55]

Some may say this question doesn’t apply in this forum. However, since I had my heart attack & subsequent heart failure diagnosis I have been unable to eat properly. Have been diagnosed with ARFID - which expanded means Avoident Restrictive Food Intake Disorder. Have been unable to get very little information even from Charities who are supporting this horrible eating disorder. My GP says get talking therapy. I know that it is making g my body weaker & should I have another heart episode I might not make it. Had anyone experienced this & where did they get help please. Am getting desperate. Thank you

[Hidden]

Dear Batty55

Thank you for bringing this illness to my attention because I have never heard of it.

Unfortunately I cannot answer your question and only hope that your GP can put you in touch with the help you so badly need.

Is there not another forum that deals with eating disorders that could help? I know that there are many forms of this illness but maybe a similar one will open the help doors for you.

Please take care, I can understand your frustrations at not being recognised but there must be help out there, hopefully someone else will come along and point you to it.

Please remember that we are here to support you the best we can.

Good luck.

[Batty55 in reply to Hidden]

Thank you Blue1958. I am at my wits end tbh. My GP doesn’t want to know. I have several contacts but nobody I can talk to about it. I have lost 3 stone in 4 months. Very scary. I have tried several other avenues & waiting for them to get back to me. One organisation - not specialising in ARfid but other addictions told me I had offended God & this was my punishment. ARFID usually starts in childhood & there’s some help for carers & parents but, I fit into neither of the main groups & I think this is the problem. There are some talking groups online & their support for everyone is unwavering & appreciated but it’s how I can get help. One of my main concerns is how it’s affecting my already knackered heart. I fear for my life.

[Hidden]

Hi I am assuming you’ve exhausted the following.

arfidawarenessuk.org/copy-o...

Was just googling your condition out of interest.

Hope you find the help your seeking, take care

[Batty55 in reply to Hidden]

Hi fishface101. Thank you for replying. I have contacted the group you so kindly sent the link for in the week & am awaiting their reply. Unfortunately at this time they do not have a dedicated phone line. I have also contacted Beat who do several online groups, but talking about any Eating Disorder (ED) is not permitted. I totally understand why. As a group they are very supportive. It’s my heart that will not survive if I don’t get it sorted. 😪

[Hidden in reply to Batty55]

Oh I am sorry your feeling so worried, hopefully they will come back to you soon. It’s the not knowing, not getting the support that is exasperating. It sounds like a difficult health issue in its own right let alone your added concerns regards heart. 😊

[Batty55 in reply to Hidden]

It’s my heart I worry about. All I can do is keep trawling the internet & hoping. Thank you for your kindness 😀

[Wooodsie]

Hi Batty55, never heard of it, but sounds a bit like anorexia. I used to work in a talking therapy organisation, not one of the counsellors, try and find out if there is an organisation near you. If you google 'IAPT near me' hopefully something will come up. I'm guessing CBT may help.

(IAPT = Improving Access to Psychological Therapies. CBT = Cognitive Behavioral Therapy)

[Batty55 in reply to Wooodsie]

Hi Woodsie. Thank you for taking time to contact me. Unfortunately it’s nothing like anorexia - but can start as a side effect. So two eating disorders running at the same time. My concern is that as time goes in, my heart will become less & less able to cope - and I won’t survive another heart attack & also have heart failure. It has only been since my HA. I know it’s psychological but how to unlock is passing me by. Known as ARFID. It doesn’t yet come under the NICE umbrella which is I suspect my gp is not interested, sadly. I will keep on hoping that something will turn up. I will try what you have suggested. Thanks again.

[Wooodsie in reply to Batty55]

Agreed Batty55, but i promise you, CBT will help. It doesn't matter what the condition is called, its still psychological. A good counsellor should be able to help. You can see them privately, it isn't expensive.

[Batty55]

Hi Woodsie, yes it may help but at the price of £45 per hour it is well out of my reach. This price was quoted for a specialist in the field. I will keep trying. Ty

[Bobbins58]

Hi Batty55

My daughter suffers from ARFID, having only been diagnosed a few years ago as an adult too. It can manifest itself in different ways, but I think based on her experience there is an emotional/psychological link involved with it. The ARFID is just how it manifests.

As to help and support, that is difficult to find as it is only a relatively new disorder and it seems specialists in this field are few and far between. The GP has been the route to get a hospital referral to the dietician, who has brought in other specialists as needed. The dietician can certainly provide liquid food supplements on prescription, if that is what is needed and in my daughters case has been very supportive. Getting back to her ‘normal’ is an ongoing process.

I think your GP is still the way in to further help, including counselling, it’s hard sometimes to get them to listen, just persevere.

[Batty55 in reply to Bobbins58]

Thank you Bobbins58. I have messaged you 😀

[Coywolf]

I too suffer from total lack of appetite since heart surgery. Also can only eat small amounts.I have been told this is very common, I am still struggling 8 months later.I found the dietician very helpful and I am prescribed Nutrisip ,which are drinks ,quite nice too! Each one contains about 400 calories, vitamins , and not much sugar. I eat what I fancy and only eat small meals. I find fruit like strawberries very nice and crunchy salads with salmon fresh or tinned.

Quite strange for me as I was a chef ,a foodie and living too cool n organic food. Try to get a routine of drinks\ small meals and just eat what you can. Good luck