Breathless with frustration

[Tudee]

I visited my GP yesterday because of increasing breathlessness ? due to Dronederone, I asked if there was an E.P. In our area as well as my Cardiologist, she asked “ what’s that”- what chance does one have of good service if one lives in the North.?

[Buffafly]

😤 I feel your pain....

[meadfoot]

Where are you based. We have some good EPs up north.

[Tudee in reply to meadfoot]

I live near Oldham Meadfoot, if that helps.

[meadfoot in reply to Tudee]

There are good EPs in Liverpool if that is close enough to you. Guess there will also be decent ones in Mancheter. You could consider asking your GP to refer you to one of those centres. It's your right to choose where you want to be seen. Good luck. X

[Tudee in reply to meadfoot]

My GP didnt know what an E.P. is, so perhaps another uphill climb lies ahead. We have 4 Cardiologists at our general hospital, but no E.P. Thanks for your help.

[Desanthony]

I think there is a list of EPs on the AF website - it may not be up to date though because it didn't show any in my area but there is one. Try a google search. say "Cardiac Electrophysiologists in ... ... ...(your area)" Quite often their private practices come up but you can find out from there where their NHS hospital practice is. Once you have a name you can ask your Doc to refer you.

[Tudee]

Many thanks Desanthony, will do that. Why do we have to fight all the way.

[Desanthony]

It is such an uphill struggle. I have had atrocious communication between Hospitals and GPs, delays with treatment, 5 months wait to see a Cardiologist. My GP then took me off apixaban as a teeny stomach ulcer was found. Took the gastro consultant 4 months to get in touch with GP telling him to put me back on immediately - OK he was away for one month but we tried to get a message through his secretary and another secretary. Went to see the specialist gastro nurses and so on but nothing was forthcoming. Another time the GP thought the consultant was prescribing something and the consultant thought the GP was prescribing it - all this from a one sentence letter from the consultant saying, "I think Mr D would benefit from such and such" Not actually saying who was going to prescribe it. And neither consultant nor GP contacted me to ask had I been prescribed it so treatment delayed by 3 months! My wife had months of invasive tests - one of which caused an infection, and expensive scans and cost the NHS thousands when she could have been referred to a specialist centre where a CT scan was all that was needed to diagnose her illness - she had had the CT scan months before but still the local hospital who knew practically nothing about the illness she actually had - a Doctor may be lucky enough to see one case a life time, and persisted in re-doing the test which gave her an infection first time round because it was inconclusive and this time said they knew they would do it right! Thankfully we knew about the specialist centre by then but they still wanted to re do that unecessary test before referring her. We refused and within a month were at the specialist centre and where at our local hospitals she would have had part of her lung removed she was put on a tablet regime for 2 years which cleared the condition up and has made her the healthiest she has been since she was a teenager she says! Then a nurse will say to you in passing Have you not asked for such and such? How do you know about such and such? How do you know what questions to ask? Honestly, it is a full time job researching your own illness and treatment options! My one success years ago was when I bombarded a surgeon with questions about my operation he couldn't answer and so said he didn't think the operation he could do at the local hospital would give me the outcome I wanted and referred me on. So that is a question I always ask now - I say I want to get back to or able to do something - doesn't always work. Anyway glad I am retired and can spare the time to do all the research. These forums are priceless as you get help from those who have trodden the path before you. Rant over!

[Tudee in reply to Desanthony]

What a wonderful rant it was too, that’s a good thing about forums you can rant to people who have had the same bad experiences of dark ages medical opinions or lack of any. Good luck Desanthony, keep being bolsie, they say we get the service we demand, Ive found that to be true, and Im a former nurse.

[wilsond]

GPs can vary so much in their knowledge it's scary.Mine are well meaning but dopey on AF matters.

Maybe you could research local hospital cardio unit and get a name?

Then approach gp again for referral?or consider private?£150-200 for initial consultation.

maddening isn't it?it's not like AF is a really rare condition!!!

[RoyM]

Liverpool Heart and Chest Hospital have a number of EPs very experienced and a very well respected hospital and is certainly within travelling distant to Liverpool. Good luck. Roy

[Tudee]

Due to my circumstances Roy, it may as well be on the moon. Many thanks

[Sportfix]

Hi Tudee, I have an excellent EP, Dr Shamil Yusuf, who works out of Coventry, BMI Meridan hospital. Best of luck.

[Nugger]

Same crap here,was just informed that our local hospital as gone from 8 cardioversions a month to 4 & that's the reason for the long wait,I was on dronedarone & took myself off it after 3 days,couldn't breath either,good luck

[Tudee in reply to Nugger]

Hi Nugger, good to see someone with experience of Dronederone, I’m on it at present, I have had sudden bouts of breathlessness whilst just sat down, and also going up stairs suddenly becomes nigh impossible, though Im very active and spry. Please tell me your experience with this med.

[Desanthony in reply to Tudee]

It is right what you say about GPs. Though if you are getting breathless - especially breathless whilst resting, you should go to your GP and they should be able to either change you to a lower dose or to a different medication or get you an appointment with your cardio. I have been told by one of the nurses if I feel bad again to go to the hospital - not tried it at this hospital but it was generally a waste of time at the old hospital so it may work heresince I have actually seen a cardio here couldn't even get to see one at the old hospital. If not contact your cardiologist's secretary and ask if he could review your case and contact your GP. Just ring the hospital switchboard and ask to be put through to your cardiologists secretary. Quite often they finish at 4 I have found and it may take a few calls to get through. At my old surgery and hospital where I lived when my AF journey started I was sick of even the hospital staff telling me that breathlessness was part of AF and learn to live with it. The best medication I was on was low dose digoxin - 62.5 - though I was only on it for a month every other beta blocker or calcium blocker - whatever - I tried bisoprolol, verapamil and 125mg digoxin and a couple of others and after about 3 weeks I got the breathlessness - though my GP at my old address never changed them I did consult privately with a cardiologist and got him to change the medication. Now my new GP seems more amenable to change the medication and inform the cardiologist - though I also phone the cardio unit at the hospital and tell them. After doing a fantastic cardio rehab course with the hospital I have got quite friendly with most of the nurses and physiotherapists and they are now on my Christmas Card List. I just call and let them know and they put that on my hospital records.

[Nugger in reply to Tudee]

Like I said,only took it for 3 days,I experienced a feeling like that of having eaten a huge dinner & when you try to breath in a very tight feeling in my chest & felt really crap.

I'm taking amioderone at the moment,which is suppose to be very similar to dronedarone,the only side effects I get with it is back ache,only taking it until I'm cardioverted but it's the only thing I found that helps my condition,hope this helps.

[Tudee in reply to Nugger]

Thanks Nugger, that tightness, and breathlessness is the same I think, just comes from no where, Im hoping to change meds, not many left to try though .

[Thomas45]

heartrhythmspecialists.org/... Some in Manchester.

[Tudee in reply to Thomas45]

Thank you Thomas, your information fits the bill, just everyone is there,great stuff

[Vonnieruth]

Found two in Liverpool at royal chest and heart hospital

[Tudee in reply to Vonnieruth]

Thanks Vonnieruth, though due to my circumstances they could be on the moon.

[Vonnieruth in reply to Tudee]

Sorry Have you looked on the site

[KMRobbo]

Wythenshaw, Manchester does a lot of heart AF. My friends son goes there. If I recall there consultants are on their website with their stats.

Having said that if you are in Oldham is it not easier to get to Leeds area? Sorry I am not aware of who does what there?

[Ladypaula]

There are at least 4 EP 's in Leeds that's where the one I see is .x

[Tudee]

Thanks to all for your help and info.