Heart failure support after diagnosis

[Carriegoodegg]

Hi, my Dad has recently been diagnosed with heart failure which is in the later stages. He has been very unwell: he is 78, has kidney dialysis 3 times/week, was recently in hospital with sepsis and pleural effusions and also has the HF. He is often short of breath at rest and has a persistent cough and fatigue. He and my Mum haven't had ANY information about the diagnosis eg Ebay it is, prognosis, how to manage symptoms, what to expect in future or how to live well and prevent hospital admissions etc. He was referred to the Community HF team but apparently they decided he wasn't appropriate and won't be seeing him (but they didn't tell him that!) Is this (lack of) support normal? I have no idea why the HF team decided not to see him and I'm waiting for a call from Cardiology about it.

They have no support at home, I live 3 hours away and they're both deluded about my Dad's condition and neither seek help when they need it.

I despair!

[Hidden]

Hello

I am sorry to hear about your Dad and the lack of support or shall we say none he is getting and to me it does not seem right at all

If it were me I would keep pursuing this and maybe speak to his GP as this feels not right at all you could also contact their local MP or email them and let them know they can be very good in looking into things and getting something done

I am sorry I cannot be much help but hopefully others will come along with more suggestions

Please let us know how you get on x

[EU95PTM]

I’m sorry to hear of your Dad’s diagnosis. Unfortunately support does seem to vary across the country. In my area I do not meet the criteria to have a HF community team, my “support” is my GP who have done very little for me. I felt very scared at the beginning of my journey a year ago. What has helped is the Pumping Marvellous Foundation. Do check out their website as they are a patient-led charity and they have produced very easy to understand guides for people with HF and their families. It really was a game changer to find them. They have a support group on Facebook too. Try not to google heart failure as you will find some very out of date information on the web. Only use NHS, Pumping Marvellous or the British Heart Foundation. I do hope you and your family get the support you need.

[Dunandjam in reply to EU95PTM]

Hi EU95PTM

Thanks for introducing me to a new website - Pumping Marvellous! Very impressed with it thanks.

[TooManyBuzzards]

i understand how you feel. My dad has been very unwell after a heart attack in September and it seems the medics are mystified why he isn’t responding to treatment. He has frequent blood tests and check ups where he tells them he is getting worse (breathless all the time, can’t sleep, spasms at night, very weak) but nothing seems to happen to improve the situation. I’ve come to the conclusion that no one will tell you about prognosis because they genuinely don’t know for sure. But, the GP has him on an emergency list which means he can be seen the same day he calls them. That has been reassuring and would be a concrete thing to ask for. It has stopped us going to A and E on occasion.

[Deejay62]

I’m sorry to hear about your dad. I’m end stage, All they do is offer me new medication to go towards the cocktail I’m on. My kidney function as improved.

I don’t see a heart failure nurse anymore. I don’t know why. The last time I saw one, that was because I became very ill so my doctor contacted them. They saw me 3 times then discharged me, but I assumed it was because they couldn’t do anything much for me.

My doctor and Gp nurse now does all the checks every 6 months, bloods, blood pressure, weight and chat. My doctor said it’s now handed over to them.

I usually saw a cardiologist every 6 months, now it’s 9 months.

Recently I discovered in a report I have severe pulmonary hypertension, but it was never discussed. Maybe it’s because the treatment is the same as what I’m having for HF. I actually contacted the BHF nurses to explain it to me and I discovered it is connected to my heart. Maybe you should contact them if you want to find out more.

I don’t think he’s deluded, he’s probably still processing he’s got another thing on top of what he’s already got. All they do with me is try and manage my fluid retention and keep my blood pressure as low as possible. Struggling to breathe is a symptom with end stage heart failure, walking, sitting sleeping.

I have only recently joined the groups. I don’t post I just tell my story, most of the time. Maybe you can join some groups so you can get a better understanding about his illnesses and how they all connect. I wish you, your mum and your dad all the best, and I hope you get the support you need, and if your dad asks, the support he needs.

[MummaSoap]

Hi Carrie

Firstly, I just want to say that I feel your frustration and confusion and I think that’s a pretty normal way to feel.

I’m in the unfortunate position of being a hearty and the daughter of a fellow hearty too. My Dad and I have dilated cardiomyopathy and each have separate things going on too.

Like your parents, my Dad also doesn’t ask for help and I get this feeling that for him, there’s a fear of his condition causing him weakness or a fear of appearing weak. He shares information on a need to know basis and will often come out with “I’m fine”, or “you don’t need to worry” 🙈 what they forget is it’s kinda the nature of the beast where kids are concerned.

I would encourage you to make a list of all your questions and ask your parents; if they don’t have the answers then maybe ask your dad to give permission for you to have a call with his cardiologist or gp?

I hope the 3 of you get support and answers that you are looking for.

Best wishes

Soap 🧼