Trying to be patient.

[wordzo]

Hi Everyone,

First of all just wanted to say I’m really grateful for all your help and advice on here. It made my AF seem not that big of a deal and am now in a sinus rhythm since my Cardioversion in Jan 22.

The problem is I’ve never met my cardiologist. I was diagnosed with persistent AF in July 21 and was put on 2.5mg bisop and 60mg edox and had a Cardioversion as mentioned above. But since then I’ve had another phone call with one of the registrar doctors in Oct 22 and then an Echo in December 22. Today they’ve emailed me and my GP a letter following the review of my echo. It tells me that they it looks like my last two echos (august 21 & December 22) have indicated moderate mitral stenosis and another echo has been scheduled for 6 months time. My frustration is just the communication I’ve had to google what stenosis is and with it being moderate it’s not the worst, but certainly not the best. I’ve also had a mitral valve repair when I was 12 in 2002 and got given the okay. I was never told to expect problems later in life. I look after myself and have window cleaning business which is very tiring. But looking at the symptoms of moderate stenosis the chest pains, tiredness, leg swelling, causes af all tick the boxes.

I just wish I could sit down with my consultant and have a proper chat about my lifestyle and work and should I start considering something else instead of a phone chat. I understand the nature of the NHS at the moment. But wish there was just better communication. I was hoping to of come off my medication July 22 as that’s what the initial appointment with the consultant told me as long as my heart rhythm was normal post 6 months Cardioversion. But they’ve not given me an answer yet and in todays letter haven’t mentioned the meds.

I hope someone is able to shine some light on what’s likely to happen.

Thanks

[CDreamer]

I do wish I could could help and suspect that many will resonate with your frustration.

I would ask your GP to write a letter to the named cardiologist.

My husband had mild to moderate mitral regurgitation & stenosis from childhood diptheria and not had any treatment as it wasn’t considered needed. Now 89 it’s unlikely he ever will now.

Best wishes

[Tommyboy21]

Yeah it's a real pain at the moment. All my nhs dealings are by phone at the moment. Been waiting on an ep appointment since November only to find out it's an online video call now next week 🙈

[Desanthony in reply to Tommyboy21]

At least your EP and you will see each other. I don't hear well and really need to see faces as its amazing how much we rely on seeing lip movement - even if it is out of synch, to hear and understand. I absolutely hate telephone consultations.

[doodle68]

Hi Wordzo , I was diagnosed with P-AF 6 years and in order to see my Cardiologist/EP in person, after a 4 year wait with no luck I paid to see him privately .

There is usually an Arrhythmia nurse or 2 attached to an EP and they are the ones that deal with patients in my area .

There should be a phone number on the letter you received about the Echo, you could try telephoning that ,explain your query and ask if you can speak to someone to discuss it.

[secondtry]

Definitely a private consultation with a cardiologist/EP; its worth the £300 if funds allow. You are likely to be seen within 1 month.

[TopBiscuit]

You could email your cardiologist and say that you feel you need a face to face consultation, that you have questions and concerns about your condition and the findings that have been mentioned. If you are experiencing the symptoms you mention - chest pain, tiredness, swollen legs - you are absolutely entitled to ask for a further discussion about this and you might mention those symptoms in your email.

The way the NHS is right now you need to push for what you need - just waiting on them to deliver just doesn't work any more, you will get the minimum they feel is adequate, you have to be your own advocate.

Good luck, I hope you get some answers.

[wordzo]

Hi everyone,

Thanks for your responses.

Luckily I have been on at them ever since my first diagnosis of af. The problem is there seems to be an issue with communication between my gp which is based in the town I live in and the hospital which is outside my town, but under the same trust seem to be working on different systems. So information hasn’t always been corresponded between them without me prompting them.

Today I’ve managed to book an appointment with my GP for next month who has a background in cardiology, so I'm hoping he will be able to give me a bit of a better idea about things and for him to pass any concerns on to my cardiologist as my cardiologist sectary seems to take ages to sort anything out. I know it’s not easy for everyone in the NHS as its so stretched. But my last conversation with the secretary, she made me out to be a hypochondriac, when all I was calling for was to see if my echo results had been reviewed yet which I think is fair considering it took the specialist 10 weeks to look at.

Any communication with the secretary now though as mentioned above will be done over email instead of phone calls. Much better idea to have things in writing.

Thanks again.