Update from me!

[nikonBlue]

Hi all, just thought I'd pop in and update. I saw a wonderful Electrophysiologist in Edinburgh ;last week and yesterday received a lengthy latter from him explaining all that's going on with my AF.

Upshot is that he has me booked in for a Radio frequency ablation but this won't happen till at least the end of this year unless there's a cancellation. meanwhile he's advised me stopping the Flecainide as we both think this is making matters worse at times. I had a call yesterday from my gp and have an appointment to discuss all that was in the letter and see about the changes in medication, but appointment isn't for 2 weeks!

I'm now on a mission to lose weight as he was very diplomatic and just said my BMI was a bit on the high side.....yes, I know I'm overweight so that's me trying very hard now in case a cancellation does happen. Scared to death about it all but glad to have seen him and at last feel someone has listened to me.

Stay well all,

Blue

[Bagrat]

Fabulous. Communication is the key to success ( with a modicum of expert knowledge too)

[Bailey2004]

Good to hear, my EP is in Edinburgh also and he’s been amazing over last 2 years, always there to listen and answer any concerns I have and weight loss was diplomatically mentioned to me too. Wonder if same guy. I’m a 48yr old female and I struggle with weight loss more so since I was diagnosed with AF but managed a stone and only got at least another stone to go if I can. I ended up going private still with him at Shawfair for my ablation in April as he told me waiting list was close to end of year. Fortunate to have insurance through my work. He told me waiting list in Glasgow was 2 years though so 6 months in Lothian reasonable! We’re not hopeful mine has worked so may be back to the drawing board with him next month at my check up. I was petrified before my ablation and had put it off for a year which wasn’t wise as AF progressed quickly so urgently needed it done. Good luck to you when it comes, hope any weight loss eases your symptoms in the meantime.

[Gumbie_Cat in reply to Bailey2004]

Good to see these reports of Edinburgh. I will be seeing someone in a couple of weeks, in Edinburgh too.

[nikonBlue in reply to Gumbie_Cat]

hi, I saw Dr. Grubb and he was lovely, totally explained everything and when I asked him to write something down he said no need as he'd send a letter the next week covering our appointment, that letter arrived on Friday as he promised.

Makes such a difference when you don't feel you're being rushed out the door and I was with him for at least 45 minutes. My daughter who took me to the hospital was getting worried as I was in so long. Can't praise them enough and very little waiting around. Good luck with your appointment!

stay well,

Blue

[Gumbie_Cat in reply to nikonBlue]

So reassuring! I hope you get seen quickly, it must be difficult with anti-cancer treatments as well.I will be seeing Dr Lang, who also sounds really good.

[nikonBlue in reply to Gumbie_Cat]

Yes, Dr Lang may be doing the actual procedure if Dr. Grubb can't schedule round it once we have a date.

[MummyLuv in reply to nikonBlue]

Dr Grubb is my EP too, he has a very respectful style. Unfortunately I waited 8 months for my ablation and then he was off with covid (obviously that can’t be helped) and a young doctor Dr Stirat appeared next to my bed the day of ablation.

The ablation itself was no where near as bad as I had worried about. The team put you very at ease and you are in and out in a day.

[nikonBlue in reply to MummyLuv]

hi,I'm having it done by general so will be kept in for 24hrs minimum he said. I expect it to be the end of the year unless there's a cancellation but that timescale allows me to work hard on the excess weight!!

stay well

Blue

[MummyLuv in reply to nikonBlue]

Is there a reason he’s using RF rather than cryoablation? Certainly will give focus for getting the extra weight off, I lost 3 stones before my mini maze. Good luck! Look forward to following your journey 👍

[nikonBlue in reply to MummyLuv]

Hi,He says in the letter that this might be the better approach. He would use a 3 dimensional mapping system to build up a map of my heart, and then target ablation around the pulmonary veins. Further ablation in the upper right hand chamber to prevent atrial flutter. Sounds scary eh? I'm sure he knows what's best....I hope! That's straight from the letter.

Blue

[dmac4646 in reply to nikonBlue]

Hi - hope all is well - I too was on Flecainide but had to come off it - I notice you had the same advice - do mind telling me why that was the case with you ? Hope you have had or are getting close to an ablation !

[nikonBlue in reply to dmac4646]

hello,

The consultant said it could be that the Flecainide was actually encouraging to have flutters etc and said it might be an idea to stop and see how I went. With the agreement of my gp, I did but sadly the AF episodes became once again intolerable and now I take just a 100 in the mornings and the 50 in the evenings and it's not too bad. I used to be on 150 twice a day.

I had a letter a few weeks ago from the hospital just to apologise that they hadn't been able to have my procedure done by the supposed allocates number of weeks and that unfortunately there was still further delays ongoing......but we knew that eh?

Am ok most of the time and have had some issues connected to my breast cancer stuff but all in all I still consider myself amongst the lucky ones!

stay well,

Blue x

[dmack4646 in reply to nikonBlue]

AF is a struggle without the other issues ! Is the Flec working for you now ? I was put off Flec for the same reasons and am on Droneaderone (Multaq) now its nowhere near as effective as Flec but has calmed the heart so I am in AFIB but not badly for 12 hours and NSR for 12 hours ! So was just interested to hear how going back on Flec has worked .

[nikonBlue in reply to dmack4646]

seems to be ok though I do still get times of flutter but not so much actually going into an episode. Flutter does last for hours though even with using breathing techniques.

Blue

[dmac4646 in reply to nikonBlue]

Hope you hear about ablation soon

[Gumbie_Cat in reply to nikonBlue]

I got one of those letters - although I didn’t expect the procedure within 12 weeks. Thing is, it arrived in my NHS EComms with the heading ‘TTG BREACH’.

I thought I had done something wrong 😂 I’m getting a cryoablation in Edinburgh next month! A little terrified.

[nikonBlue in reply to Gumbie_Cat]

eek! I know what you mean. Am very anxious about getting my procedure too but here's hoping it helps and makes life just a little bit kinder eh? Good luck with it and do let us know how you are.

Blue

[Gumbie_Cat in reply to nikonBlue]

Good luck to you too! I was getting episodes of around a week on dronedarone, then things seemed to improve a little. But I’ve been stuck in persistent AF for four weeks. Getting worried that it’s less likely to work, though the consultant is optimistic. Also on Flecainide/Bisoprolol - though it’s only the rate coming down.

I’m also taking part in a study, so my ablation will be longer, as they will look at the right atrium too. Not likely to affect my treatment, but perhaps it will help others in the future. However, I will find the extra monitoring reassuring,

[nikonBlue in reply to Gumbie_Cat]

I've also agreed to take part in a study! I take the Fecainide and Bisoprolol too. Hang in there and we'll both get through eh?

Blue

[nikonBlue in reply to Bailey2004]

hello,I was told it would be at least the end of the year, but said I'd accept a cancellation. apparently, the hospital only has an anaesthetist for this procedure , one fortnightly so easy to see why the wait. Still, it does give me time I hope to lose the weight. I'm never sitting still apart from now on the laptop but I am on anti-cancer treatment which is a bugger for the weight so it's all a bit harder, but I WILL lose it....watch this space. I hope you're ok with your treatment and good luck to you too!

Blue

[Gumbie_Cat in reply to nikonBlue]

Do they give a very strict BMI to aim for? I’m in the overweight category too. I guess I will find out soon enough, and they might not advise the op anyway!

[nikonBlue in reply to Gumbie_Cat]

Yes, on the letter to my gp & me it does say a 'suggested' BMI So, I'll do my utmost to get there asap!!

[Gumbie_Cat in reply to nikonBlue]

It’s a goal to aim for, and that will help. Best of luck! I shall be prepared in advance - and try not to eat all the wrong things in the meantime…

[dedeottie]

It really makes a difference when you feel listened to by anyone but in this case, by an expert! If only we had access to an expert ear more often. Your GP sounds very proactive though. I don’t think any GP has shown any interest in my AF journey in the whole 20 years I have had it. Good luck with everything , you are at least on the first rung of the ladder by being on the waiting list. X

[nikonBlue in reply to dedeottie]

hi there,As I said this all has happened after a 4 year wait because my GP suggested I contact the E.P. myself. He even sent me a copy of the letter he's sent to my gp and the surgery has already called me to say they need to see me regarding changes in the meds I'm on as E.P. agreed that the Flecainide seems to be making matters worse instead of better. but alas I can't see a gp .......for 2 weeks!!!! Par for the course eh?

stay well,

Blue -)

[Cha275rL in reply to dedeottie]

You’re so right. I have never seen an EP, and my GP isn’t all that interested. I was almost fainting at times, and had to hang onto trees to keep upright, so they halved my beta blocker to 25 mg. Don’t feel faint any more but pulse still too slow at 47, but he’s waiting to see what the heart monitor says before trying anything else. Not got the heart monitor yet, been waiting for it for 6 months. 🤬

[nikonBlue in reply to Cha275rL]

hi,Been there with monitors fitted for 24, then 48 hours then a week and finally 2 weeks with a change of recorder after the week. Not much showed up so I guess I was put to the bottom of the pile! However in the last 2-3 years the AF has progressed significantly where I'm having episodes of flutter daily and that as I'm sure you know is exhausting. With the added 'wait' due to lockdown my gp then suggested re-referring me. I was admitted by ambulance as the medics suspected a heart attack. Thankfully it wasn't but that spurred me to ask again and this time I called the E.P'S secretary myself. I then received an appointment with him about 3 weeks later.

stay well, and keep pushing for some attention. It's taken me a few years to do it but now I have.

Blue

[Cha275rL in reply to nikonBlue]

Thanks NikonBlue I will. I get a bit of flutter too and it’s not nice. I see you were treated in Edinburgh. If you live there you’re not far from me in Dunfermline.

[Ppiman]

It was good to read that the NHS is still functioning, even if creaking! You sound as if you are under a good doctor. I gather there's evidence that lower weight and more exercise are both helpful in bringing the heart into physically better shape. I'm not too overweight, but am on a mission to lose half a stone by eating slightly smaller portions of everything except fruit and veg!

Steve

[nikonBlue in reply to Ppiman]

hello,Yes, I'm aware of being bit overweight! Been cutting down for a while now and still fit in clothes though can be somewhat 'tighter'. I also have started using a smaller plate and bought only 'green' food last week when shopping.

I have waited almost 4 years to see this E.P. in Edinburgh and as nothing was happened even allowing for the dreaded cover and lockdown, my gp suggested I contact his secretary myself, and I did and within weeks ....here I am! I couldn't be happier that something has at last been decided though like I said the thought of the procedure is terrifying but I realise the weight reduction will only help with it all, including having a general.

I walk the dog 3 times a day but sadly he's getting really slow (12) so not the same long walks like we used to but the park beside me does have outdoor gym equipment so I've started going there without the dog a few times a week plus I'm doing a simple workout at home in the mornings. As they say, 'every little helps'

stay well,

Blue

[dedeottie in reply to nikonBlue]

I think losing weight and making other life style changes has always got to be the way to go and my new EP asked me if I drank alcohol before agreeing to offer me this ablation. The answer was NO although I would if I could!However, in my case :

I lost 4 stone and have now had a BMI of 21 for the last 10 years. My blood pressure is on the low side, I have never smoked. I drank too much alcohol for probably too many years but first cut right down then stopped completely except very occasionally having a glass if it is a champagne celebration for something like a wedding.

I don’t feel that any of this has had any effect on the progression of my AF except that professionals appear to be more inclined to put me forward for procedures which of course is not to be sneezed at.

I feel we should all take responsibility for our own health especially now the NHS is so delicate but don’t beat yourself up if you can’t always eat in a perfectly healthy way. X

[nikonBlue in reply to dedeottie]

well done you though! I've never smoked in my life but I have a wee dram now and then and as previously mentioned I never sit still fr long and am out walking several times a day. Anti- cancer medication I take doesn't help and therefor it's a bit harder to lose weight but hell's teeth, I WILL!!

[dedeottie in reply to nikonBlue]

With a spirit like that you most certainly will. Go you!

[Ppiman in reply to nikonBlue]

My wife's late aunt (reached 96!) had to watch her weight all her life and ran the most successful diet club in the area for years. She had a mantra: calories in must be less than calories out. But her way was to stay with the foods you are used to and reduce the volume. I think she had it right. Yes - people will argue that the metabolism is this and the metabolism is that, but the simple law of physics must apply at least in general. Anyway - it works for my wife and I and worked for her. She used to say that changing eating habits was likely to fail, and, again, I think she knew a thing or two. She also used to say that exercise, good in all other ways, was rubbish for losing weight!

Best of luck for when your ablation day arrives. You'll be absolutely fine. My son's colleague, now 76, has had five!!

Steve