At a total loss

[Cypbill]

I was diagnosed with Paroxysm arterial fibrillation some 8 years ago and not on any medication over than for hypertension and Apixaban anticoagulants. I recently around two months ago had a Reveal Device implanted. Since, few weeks ago following a visit to have the device downloaded I was admitted to the Coronary Care Unit as result of the data which showed 2:1 heart block and a rate of in excess of 160bpm that had been sustained for more than 60 hours. I was told at the time it was vital to undertake a Cardioversion as I was potentially in some danger. After being kept without anything to eat or drink, I was sent home with no real explanation albeit my heart rate had reduced to around 120. Since, I've been back to hospital again as result of much the same symptoms only to be sent home without seeing anyone other than a technician. I am reluctant to go down the ablation route as I am aware due to the length of time since being diagnosed and the reduction in success rate versus the potential complications. Things are further complicated having recently told I have type-2 diabetes which similarly goes untreated i.e. I haven't been provided with any medication, I am now aware having asked for access to my medical records a recent blood test flagged eGRF at 54 with a warning of Chronic Kidney Failure Stage-3. I have just had the worst 4-5 days of my life with my heart rate all continually over the place and I'm extremely concerned that the drugs are affecting my kidney function which in turn is affecting my heart.

I'm at a loss as my GP really doesn't seem at all interested and because of my reluctance to ablation my EP isn't interested either, my next appointment is in 6-months time. What does it take blue lights and sirens?

[Hidden]

Hello Cypbill, not too difficult to understand your frustrations but also not easy to come up with some meaningful suggestions, but I'll give it a go!! Firstly, you clearly have a good understanding of your condition and all it's associated problems that could make your condition more difficult to treat. I'm not medically trained, so not able to offer any medical advice but, it sounds as if you are having difficulty in finding someone to talk to who can give you the confidence that they can look at the broader picture total and help you move forward. EP's want to ablate, some cardiologists love inserting stents etc., etc.

Referrals to a NHS consultant with the broad depth of knowledge you need might be difficult, so I wonder if it might be more useful if you could have a private consultation with someone capable of steering you in the right direction so that you can then pursue a treatment plan through the NHS.

If you live in Surrey/SW London I could suggest someone, but if you are prepared to divulge your general location, others on the forum may know of someone that could help you. If you decide to go down that route, I suggest you send the consultant your medical history in advance of your appointment, might save some time by not having to discuss your history.

Hope this helps and best wishes, John

[Cypbill in reply to Hidden]

Thanks for getting back to me, your absolutely correct in your assumptions. After 8-years and a lot of reading including posts on this forum I like to think I'm reasonably aware of the condition, I'm equally aware many consultants really don't like to be questioned, nor it would appear patients who have an opinion, worse still when your able to quote statistics as to the effectiveness of a proposed treatment.

Where I am now what with the diabetes and the potential for heart and circulatory complications I am puzzled as to why nobody seems to be able to join the dots, they are intrinsically linked. Similarly with the drugs for hypertension and anticoagulants that can cause kidney complications, induce and or aggravate arrhythmia's.

I have arranged to see my GP in the next few days here in Leeds and I intend to deliver a letter in advance of the appointment outlining my concerns, hopefully he will have something meaningful to offer.

My wife and I have tonight discussed the private sector, an option that really goes against the grain, I was forced down this route to obtain the AF diagnosis in the first place, which after a barrage of tests left me £2k lighter and the cursed AF diagnosis.

I will try to keep this post going with any progress or indeed hurdles.

Thanks again.

[Maggimunro in reply to Cypbill]

Pete, I live not too far away from you and my EP is Dr Andreas Kyriakou at the Northern General Hospital, Sheffield. He is the second EP I have consulted and is the one who who takes time to explain things to me. I trust him.

[momist]

Since you are in Leeds, you are not too far from York. It might be worth your while to contact Dr Sanjay Gupta. He seems to make a point of seeing the whole picture. His contact details are in most of his videos on here, such as

healthunlocked.com/afassoci...

Good luck with your progress.

[Cypbill]

Hi, sorry for the delay, I haven't been so good the last few days.

I'm aware of Dr Sanjay Gupta and indeed asked for a referral last year having read numerous articles and watched many of his youtube videos. His consultation confirmed my understanding of this condition and I fully appreciated his philosophy with regards to looking at an individual as just that, unique, with individual problems, all of with collectively impact of your health, AF as with many other conditions unsurprisingly being the result. I was further encouraged by his thoughts on the treatment of AF and in particular ablation, which is purported by many as a cure. Unfortunately, after his reassuring words, I was passed along the chain to an EP who seems only to be interested in ablation, because thats what he does. As I am less than happy to follow this path, for all sorts of reasons, mostly based on the experience of others both patients and professionals, I have greatly reached an impasse. So, 8-years have elapsed and I'm really no further forward, other than having developed diabetes and potential kidney problems (possibly as result of the various drugs).