Decisions and way forward?

[Silvasava]

Hi All

Could you give me some of your sage advice/opinions please.

I saw my cardiologist at the end of Spetember at my local hospital and he told me I was not suitable for any more cardioversions (only had 1) or ablations. I spoke to my HF nurse a few days later as to whether I could be referred yo Southampton which I understand has an excellent Cardio depratment. She said she would be meeting the cardioteam and could I wait until she had spoken to them. Upshot was apparently my heart is enlarged so the valves wont shut properly and she was told they wouldnt touch me with a barge pole!

I quote from my letter: ECG showed atrail fibrilation and left axis deviation with some lateral T wave flattening. Echo shows mild to moderate impairment of left ventricular systolic function and severe functional and mitral and tricuspid regurgitation both of which were worse on the last scan.

Do I ask my doctor to refer me for an MRI before asking for a referral to Southampton? Dont know what to do or where to turn

[Finvola]

First off, Silva - that's a pretty unprofessional comment from a medical person and extremely unhelpful for you.

In your situation I would try to get a face to face with a doctor you can discuss things with - preferably a cardiologist and ask what treatment plan is proposed to help you in the light of the letter you have received.

Very best wishes and I hope you can get a better response than a bargepole as it doesn't seem right that this should be a medical team's evaluation. Do let us know how things go.

[Silvasava in reply to Finvola]

Thank you Finvola - the cardiologist has already said that they will only control with medication but TBH I don't feel I'm any further forward on meds as I am still very breathless. My doctor is nice but doesn't seem very proactive. I really want to know exactly what's wrong with my heart, hence an MRI so I can present the findings to the team in Southampton, hoping they can offer some sort of improvement. Maybe I'm expecting too much but I don't want to be in an 'if only' situation so I do want to explore any option that may be available.

[Finvola in reply to Silvasava]

I don't think you are expecting too much at all. There are times when we really do need to be our own advocates in the search for best treatment. Sometimes a nice doctor can be a drawback in a way but it might be worth asking your GP to refer you for an MRI with a view to seeing a consultant in Southampton. Failing that perhaps a second opinion would move things along for you.

You could arrange for a private appointment with the cardiologist of choice at Southampton directly if that route is possible - consultation fee should be around £250. Your GP may need to refer you, depending on the hospital's policy. Their website may give more info. If you do this, watch out for private costs of MRI's etc - maybe get those done first.

[Silvasava in reply to Finvola]

Writing it down and your responses have helped me get my ducks in a row! I'm going to do as you suggest and ask my doc for the MRI referral with a view to seeing someone from the team at Southampton (they seem to have a good website) I am prepared to go private if necessary, I can't take it with me lol!

Thank you very much for your comments, much appreciated.

[Finvola in reply to Silvasava]

Sometimes just getting one's thoughts organised is enough to point the way. Do let us know how you get on. All the best.

[Buffafly]

Hi, could you explain what info you are hoping to get from an MRI that you haven’t already got? I am just curious because the report you have seems fairly comprehensive though I don’t understand all of it, or the implications. I once had a very technical letter copy from my cardiologist, took it to my GP for clarification but either she didn’t want to or hadn’t got a clue either - I suspect the latter! I lost the letter so I’ll never know 😕 I’m also not very up on MRI scans - I didn’t even know a GP could order one.

Best wishes, I would certainly be wanting a second opinion from someone in a bigger hospital, and some hope that your symptoms can be reduced 💜

[Silvasava in reply to Buffafly]

Buffafly - I don't understand the implications either that's why I want some further clarification of how this will affect me long term. I spoke to someone on the BHF website and they suggested I had an MRI as it was the 'Gold Standard' to see exactly what the heart was doing etc. I thought if I was armed with my current diagnosis and an MRI scan I would be better placed for treatment in some form or other to improve my current situation. I'm going to arrange a call with my doctor next week to explore my avenues!

[Buffafly in reply to Silvasava]

Sounds like a good plan, do keep us updated 🦋

[Hidden in reply to Silvasava]

I think you deserve a proper appointment to talk through that daunting report. In my area of the NHS only secondary care - a consultant etc - can request an MRI, it is not possible for a GP to do so. I would push and push to see a consultant- pay if necessary (although my attempt to do that resulted in a lacklustre appointment and my NHS one a little later much more thorough). Ask them to get an MRI of what they tell you indicated it would be helpful. And big virtual hugs.

[irene75359]

Can't add to the excellent advice you have already had here but just wanted to wish you luck. Please let us know how you get on.

[secondtry]

I agree with Finvola go for the Southampton face2face private appointment as an early priority. Pre Covid my experience at Guildford is that this can be done within 2 weeks. Push your GP to refer you. I have heard Soton is a centre of excellence and they can best advice whether you actually need an MRI or other tests and hopefully take some ownership of your care. Good luck.

[Silvasava]

Thank you all for your comments. I am just about to book a telecon with my Dr for next week. I will keep you all in the loop as to progress. You have all been so helpful in clarifying a way forward for me. Afibbers Rule!!

[cassie46]

I agree a private appointment is the best way forward. I had to do this as my cardiac department at my local hospital leaves a lot to be desired (long story).

I chose a EP of my choice at Papworth, talked to my GP to ask her to refer me to him. She agreed but got me booked in for a echo first at local hospital ( EP will want to see a recent echo). Saw EP quite quickly (went armed with all medical paper work I had) an ECG was done just before I saw him, you have to pay for this and had consultation. Total cost was around £375, that was a couple of years ago. Also when you meet him ask to be put on his NHS list (I did this near the end of the consultation) he should agree to do this. As some of the others have said I also think that a GP is not able to order a MRI scan. Good luck.

Cassie

[Padayn01]

Hi may I ask how you feeling now and also what is left axis deveation?

[Silvasava in reply to Padayn01]

Hi Padayn01 Thank you for asking. TBH I have no idea what left axis deviation is! I did get a referral to Southampton, I had ECG, Echo, MRI and an angiogram so every avenue explored. The cardiologist confirmed the original diagnosis from my local hospital. The reason I can't have any treatment other than meds is I have Dilated Cardiomyopathy, a condition where the heart muscle is ' baggy' and can't pump properly. I saw the cardiologist at my local hospital last September and he said it was most likely caused by radiotherapy I was given 10 years ago to my left breast. A bit of a bugger but if I hadn't had that treatment would I be here now? I'm coming to terms with my limitations as I know there are many people who would change places with me. Thank you agai n to your interest.