Undiagnosed heart failure

[Asti7]

I'm new to all this. Age 58 and admitted April 2020 to CCU with heart failure possibly due to virus as no other obvious explanation. I'm doing okay on meds so far prescribed and coming to terms with implications long term. Any advice on long term fitness / exercise would be appreciated. I have modified my diet slightly but avoided salt and processed food on a large scale before diagnosis. Early days and I'm still concerned about long term outcome and implications.

[Lezzers]

Hi Asti7, my husband has HF due to a previous heart attack. Have you been referred to a heart failure nurse? You should only be taking exercise/diet advise from your medical team as HF affects everyone differently.

Have a look at the patient led HF charity Pumping Marvellous for advice & support on how to self manage your condition.

If you do Facebook they also have a closed FB group which I'd highly recommend joining, it's a very friendly group of people who know exactly how you feeling, it's a very supportive non judgemental group, I've learnt so much about the condition with their help.

[Asti7 in reply to Lezzers]

Thank you. I've got a heart failure nurse, but due to the current situation it's all telephone based. All advice was to restrict salt and fluid intake. Exercise mainly walking. Asked about indoor exercises only advice don't use arm weights. I'll join suggested sites /groups. 😊

[Lezzers in reply to Asti7]

Unfortunately it is all telephone based at the moment, but they're still available if needed. My husband is no longer under a HF nurse but I did still ring her when I needed advice last week. Interestingly, pumping marvellous had a webinair with 4 HF nurses yesterday talking about how things are working at the moment & going forward. It was really interesting, informative, very worth watching & it's open to the public as its been shown across all their platforms.

Ps: yoga can be an issue if you have low BP, my husband isn't allowed to do it.

[Asti7 in reply to Lezzers]

That's helpful I will look on site. I have 1st proper scheduled phone appointment next week so hopefully can get better idea. From initial contact they seem wary until I've had follow up outpatient appointment and repeat echo scan.

[Lezzers in reply to Asti7]

That's probably because the echo is key to knowing what's going on with your heart, once they know this they'll be in a better position to know how to manage your condition. One thing I would ask is, as your HF has been caused by a virus, can your condition be reversed.

[Asti7 in reply to Lezzers]

They don't know. On discharge consultant said possibly, but work on possibility I'm going to have to live with it) I'm being genetically tested (no family evidence but needs to be ruled out) and on research programme for present situation. They found nothing else compromised within my vascular system or bloods. Only abnormal result was one clotting result being elevated on admission.

[Lezzers in reply to Asti7]

Hopefully it can be reversed, I know that a very small % of people whose HF has been caused by a virus have seen their condition reversed, fingers crossed for you.

Keep in touch, let us know how you get on with your echo & HF appt.

[Asti7 in reply to Lezzers]

I will thank you

[Fenlotted]

Hi - I was 56 when diagnosed with HF (Nov 2019) which they believe was due to me catching influenza. After coming out of hospital I attended cardio rehab sessions at the hospital which was great. I have horses & was told to take things easy which I have done basically by not running around at a million miles an hour. In March this year they fitted CRT-D so I am back gaining fitness again. Now up to 15000 steps a day & riding horses again. Best advice is if it feels too much it probably is so stop & take a breather. Resistance bands seem to work well. I still haven’t been to the gym for obvious reasons but hospital calling regularly to check on me

[Asti7 in reply to Fenlotted]

Thank you. Wonderful to hear a year on things are so positive for you. That's what I've been trying to do. I've got 5 dogs so plenty to keep me occupied along with gardening. I've increased the distance I walk slowly and only just adding walks with more inclines. Just awaiting hospital follow up to see how things are progressing.

[FeetheBookworm]

Did you get given the BHF ‘bible’ when you were diagnosed? I found it invaluable in the early stages as I knew nothing about HF. If not you can download it from the BHF site. My EF was 17% when diagnosed 3 1/2 yrs ago, last yr was 43% and have been discharged from HF clinic and checks to GP care, so a HF diet and tablets along with more exercise did the trick. I cut out salt which I don’t particularly like anyway but it got too low pretty quickly and had to add it back in. I use it in cooking but still rarely add it additionally to my food.

I kept to the dog walking and when I got stronger I did start going to a gym and will go back when it re-opens.

[Asti7]

I'm afraid I got given nothing. Cardiac nurse did make contact after 1st week with name and telephone number, but that's it. Just told I will get an outpatient appointment within 4 weeks, now on week 6 and no contact.