Follow on from Echo results

[Brandibell]

Sunday morning rant..

Hi/Good morning , I know this is quick but the day I got my Echo Results last Tuesday I emailed my consultants secretary stating what I thought/what has gone on/ how some of my notes are wrong with regards to my medication/how I am a single parent my Boys need me.How i want a CRT/ICD cannot tolerate tablets. To a reply yesterday via letter from the man himself.

What part of what i say doesn't Go In. He wants me to try different tablets and is referring me to the HF specialist nurses. I Give Up. 🤷🏽‍♀️Why put someone on BP tablets when it is low/normal or Beta blockers when it slows the heart down too much and makes someone more dizzy and faint?.The most tablets I can tolerate is a paracetamol for a headache or amoxcillin for a cold. 🤦🏽‍♀️

He also has asked for all my notes from the other hospital when I was discharged Dec.2019 into his care(still waiting). Surely I am verging on medical negligence. 😠I have gone from Mild LVSD No HF to Moderate with HF and EF 35 - 40 % within a year who is to say i could be Severe a year from now. The stress is too much on one person's shoulders and a pandemic also. This is my system and I know what I can and cannot tolerate. My eldest son has said it is almost like to need to keel over to get anything done. Haha He has a point...

Can anyone shred any light on alternatives or how to handle this?..😎

[MichaelJH Heart Star]

I would suggest you start by reading all the BHF and NHS literature on HF. Dont bother with Dr Google as much is out of date and rather negative. Then ring the BHF nurses to discuss and understand your options. This puts you in a better position for any subsequent discussion with your GP/cardiologist. Note though that amoxicillin is an antibiotic that is not prescribed for colds as these are viruses.

You should not dismiss all medication out of hand as there may be some you tolerate. Many HF patients do well on Entresto for instance.

[Brandibell in reply to MichaelJH]

Thank you for your reply. I am never not reading up on stuff, journals included.But I will hit the BHF and notch up further knowledge. I was meant to say chest infections when I said amoxycillin.

I am not for not trying these tablets, its just my system hits the severe side effects either in a matter of hours or a few days... I keep hearing about this Entresto but that is about the only one as I know it is relatively new.

I just want it sorting instead of faffing about testing tablets like a lab rat- that 9/10 will react badly with me..Frustration..

Surely there are others who cannot take tablets and they are given an alternative? I shall be asking this question.. Take care x

[Dicky-ticker]

I'm so sorry this is happening, it makes treatment so hard when notes are written wrongly. Mine state "loses consciousness and is sometimes unconscious" when this was never the case. Fiddling with inappropriate meds is what caused me too be admitted for 13 days.

I contacted PALS to raise a formal complaint, and I also wrote to chief executive at the hospital (advertised he had an open door policy) so I bobbed a letter in.

Not sure you get anywhere as they send out apologetic, lessons learnt, so sorry, exceptional circumstances letter.

Maybe if and when you see your new cardiologist face to face, things will be better this time. You can put in a request to view your records and have them redacted (there is a cost for this)

Good luck on your journey, try not to worry too much, I'm sure you'll soon be feeling ticketybootastic x

[Brandibell in reply to Dicky-ticker]

Hi I know that the records he has asked for from BVH will be wrong as far as medication is concerned. They state I was on 5mg of bisoprolol/Rampril and they wanted it upping to 10mg via my GP I was never on 5mg I was on 1.25(When that letter was written i was on none)This is what is being sent to my new cardiologist who listens but doesn't hear me. It is seriously like banging your head and if it was for anything else i think i would have given up but it is my Heart... haha 😂🤨🤦🏽‍♀️🤷🏽‍♀️x

[Dicky-ticker in reply to Brandibell]

It weird both our treatments have been shite and we are both at the same hospital. Your consultant wasn't Greek by any chance?

[Brandibell in reply to Dicky-ticker]

No I never met him I just knew he had shiny point shoes and it began with a C. The two hospitals just don't communicate very well from what I can see. Haha I like the Greeks I missed that one. Lol

[Prada47]

Hi

Try not to fret over figures it depends how you feel not the % of Ejection Fraction . It is possible to go from Severe to Moderate i.e. 27% to 42% so don't think it is a one way process.

Medication can't actually fix Heart Failure but they can make the symptoms better. like Breathing a little easier, Heart pumping stronger. Heart Muscle under less stress.

I was assessed for a CRT a few weeks ago because my Heart Failure Nurse thought I had reached the end of the road for Medication. 10mg Bisoprolol and 49/51mg Entresto But I seem to have come through the mid dose of Entresto and if I stay reasonably well like now, she will try me on the 97/103mg dose which is the Maximum.

I am 72 and I did say to the Cardiologist I would rather have a CRT sooner rather than later ! I don't want to get to 80 and then someone say oh you should of had a CRT back in 2020.

Before a CRT is considered you need to meet a set of Criteria laid down by NICE. In my case I do meet the Criteria except for my Ejection Fraction I think it should be below 36 % and mine was 42 % last count. On all other counts LBBB and QRS timing along with NYAH classification I qualify, but cardiologist says wait , so I wait.

I have been on this journey since 2015 when I had CABG to two arteries RCA is 100% blocked so no bypass or stents possible. In 2018 I had two stents in my already bypassed LAD so as they say just soldier on and see what turns up

I work on the basis they will do whatever they can to keep me/you Well and to keep you/me out of Hospital !!

Stay Well Keep Safe

[Brandibell in reply to Prada47]

Thank you for your reply and you have actually just put it into perspective beautifully for me and given me a bit of hope, maybe I will try this new tablet entresto. It seems to be the way forward. Keep Going I have a feeling you will easily make 80. Take care.x

[Prada47 in reply to Brandibell]

Hi Brandibell

I do hope my reply helps a little.

Entresto needs to be prescribed by a Cardiologist or a Heart failure Nurse it can't be prescribed by a GP without the Hospital first.

It gets titrated up slowly in my case almost a year to get to Maximum dose.

Stay well

Stay Safe