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who cares for the carer?

Sindyblue profile image
12 Replies

Hello lovely people. In July 2023 i found myself needing to go the A and E as i was breathless and my GP sent me there for a chest xray but i ended up calling a ambulance and when they took my HR is was 200 beats a min i was taken straight in to the resuscitation area at the RSCH. I had no chest pains but they keep asking me if i did. Had the chest xray showed some fluid retention I spent 16 hours in And E being moved about in and out of corridors etc and i did get a place in the cardio unit the next evening i had ECG etc and was diagnosed with permanent AF and hypertension Given Bisprolol 2x 5mg Dagliflozin 10mg Edoxaban Furosemide 40mg Ramipril and i was sent home the next day. I went back for the echo cardiogram August.2023 .In October 2023 had out patient appointment at the Heart failure clinic.I saw the registrar not the consultant and was offered Cather ablation. I had to ask about the Echo result and was just told my heart failure was mild and the ejection fraction was preserved. I was never sent the report so i made a GPDR for my information and i was able to see and read my ECG and results/ notes etc during this appointment i had a 12 lead ECG and i was told my heart was 117 beats and i was given Digoxin 125mg As i am a carer to my son ( adult autistic person and my older brother who has Parkinson's I felt i had no choice but to turn down the referral to the electrophysiologist becuse i did this I feel they have lost interest in me. I had further appointment this time with the consultant who has said he is happy with my heart rate and i have been discharged back to my GP I take my medicine and i kinda just got used to symptoms. I am a highly sensitive person and i have lived with flight or flight sensation all my life. In my 40's i went into menopause and unknown to me i did have heart palpitations at that time. Many years on I had covid in January 2021 it took me almost a year to overcome this virus. I then went on and had the covid vaccinations the third one i had in Oct 22 left me with with heart palpitation for a week unknown to me i think it was AF I found it hard to get though my day feeling tired all the time .I did contact my GP a couple of times but just could not get an appointment during the covid period. My problem as a carer it that i just feel that the that the cardiologist has no understanding of my situation. There is no social care support and that i really have no one to care for me during any recovery period or care for my Autistic son or brother so i could undertake this medical procedure Just to add my Dad died of a heart attack when he was 52 having had very high blood pressure and some heart condition all his life and my mum died of Leukemia when she was 65 . I have an A and D medical blood pressure device which shows if you in AF, i take it daily and Average120/80 and my pulse rate shows anything from 46 to 114 i really have a haywire heart as readings seem to flip about all the time. I take magnesium from following advice on here and i feel calm most day with no chest pain or breathlessness. I Follow the DASH diet, i do not smoke or drink ( never have) The cardiologist did say that it would be another year before Pulse field would be available at the RSCH cardio unit.

Kind regards Pam

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Sindyblue
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12 Replies
jeanjeannie50 profile image
jeanjeannie50

Hi Pam at my doctors surgery we do have someone who looks after carers but I have no idea what they offer. I know this because when we spend time waiting to get through on the phone for a doctor's appointment we have to listen to surgery staff saying what they offer. Caring for carers is one of the things, see if yours has one.

Jean

Sindyblue profile image
Sindyblue in reply to jeanjeannie50

Hi Jean i think what i going do is try to get a carers assessment. Many thanks for your reply.

Pam x

Tapanac profile image
Tapanac

oh dear you do have a lot on your plate. I’m so sorry I know what it’s like to a certain extent as my husband has mild dementia and our sons snd families live a long way away

However in our GP surgery there are posters on the wall saying are you a carer and speak to the person within the surgery who can help.

Alternatively if you phone your local council or hospital trust there will be someone there to help

All the best

Pat x

baba profile image
baba in reply to Tapanac

I have also seen the posters in GP surgery but don't know what's on offer.

Tapanac profile image
Tapanac in reply to baba

I expect the receptionists can help???????? Hopefully?????

Sindyblue profile image
Sindyblue in reply to Tapanac

Many thank for your advice I think their is a Carers hub at my local council i can contact. Take care Pam x

Tapanac profile image
Tapanac in reply to Sindyblue

Good luck xx

philologus profile image
philologus

There's an organisation that helped me when I was in a similar situation Pam.

carerstogether.co.uk/what-w...

Sindyblue profile image
Sindyblue in reply to philologus

Many thanks for the link.

Iamfuzzyduck profile image
Iamfuzzyduck

well I do have lots of empathy as I am the main carer of two adult family members with schizoaffective disorder who live in our house, I am also the same age as you. I have been told I need an ablation and I can’t have anything go wrong with the procedure, I really need to be there for them, one has really severe symptoms but I do have my husband to help. Do you have any other family members who can step in for you whilst you are recovering from a procedure? Is there some support network for caregivers of Autistic people? I hope you find someone to help Wishing you all the best from one stressed caregiver to another

Laksacurry profile image
Laksacurry

I’ve only been given digoxin once. I was in AF and it put me back in NSR several hours after I took it. Usually they dc cardiovert me back to NSR.

Sindyblue profile image
Sindyblue in reply to Laksacurry

I take it every day and it just makes my heartbeat stronger so there less weaker beats.

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