A bit of advice please from you experts

[P0rtnahapp1e]

Hiya, I’ve been coming on here for 6/7 years, mainly just to hover and learn from other’s stories and queries.

AF, HF, Dilated Cardiomyopathy, diabetes, and mild liver and kidney failure, but after a couple of years of trial and error I’ve settled for the past couple of years on a drug cocktail which seems to suit. (Eco IBAN, Entresto,carvedilol, allopurinol, atorvastatin, digoxin, dapagliflozin)

Apart from a nine week stint in hospital five years ago due to sepsis which became endocarditis, I’ve been reasonably healthy considering my age, and still manage to travel a bit and look after grandchildren, for which I’m very grateful, since a few years ago I was feeling really wretched and couldn’t visualise a future.

I have frequent palpitations, my digestive system seems to be symbiotically connected to my heart issues, (vagus nerve influence?), and I often wonder how I really am and what my prognosis is, but since the beginning of c I haven’t had my normal 6 month check up with my consultant. Christmas Eve 2021 my heart failure nurse phoned and told me I was off their lists, so I have no support now whatsoever.

I booked a phone call with my GP and tried to explain how I felt, but ended up sounding like a pathetic attention seeking old biddy, who was taking his time over nothing.

I just got such comfort from the endless tests and scans which I had for four or five years and now feel I’m set adrift to my own devices. Even writing this makes me sound a bit attention seeking!

Compared to some of you I’m so, so lucky. I’m just back from a super week in La Tania for a skiing holiday with my family, only babysitting, not skiing, so I shouldn’t complain. (I’m the one in the middle between two sons in law)

[jeanjeannie50]

What a lovely photo of you all. Sounds as though you're doing really well. Don't forget we're all here as support for you at any time, so you're not on your own. Lots of us are just left by the heart professionals, with only our GP's support and it does feel a bit like we've been abandoned, but I'm sure your GP would have you back under their support if something didn't seem right.

Jean

[P0rtnahapp1e in reply to jeanjeannie50]

Thanks so much jeanjeannie50 . So good of you to really “hit the spot” with your response. X

[P0rtnahapp1e]

Hidden , how good of you to take the time to reply at such length. The responses were more beneficial than ten consultant appointments!

[Hidden]

Dear POrtnahapp1e

First what a great looking family you have and how happy you seem in that brilliant photo.

But oh dear something is amiss and you have been worrying far longer than you admit before you posted here.

So on what basis is that worry? and judging by your writings I can fully { and so many others can } see just how that worry has manifested itself .

Many times I have heard how patients have felt abandoned by any form of care once the initial problem has be resolved { is it ever ? } but that I'm afraid is how the NHS seems to be operating at the moment, they are in full factory mode to get us through the system which unfortunately can leave us feeling a little lost { me included }

You are not pathetic nor attention seeking you just want answers to very valid points to do with your symptoms and the way your life { health wise } will be.

To stop yourself rambling on the phone or face to face appointments the secret is to write down your questions and don't move onto the next one until you are happy with the answer, read directly from the list, these people are professionals and they need questions to be clear and to the point.

I hope that you find your answers { you will } if you can handle such a magnificent large family as I have no doubt you do, then you can handle a few medical staff.

Take care and enjoy every moment of your loved ones as they do you.

[P0rtnahapp1e in reply to Hidden]

Hidden thank you so much for your wise, sympathetic words. I feel better already!