Well had the call, I'm in next weds the 12th for my scans, then by end of the month for the ablation with Sabine Ernst, also spoke to my own EP today who said I'd be in the best hands and that I'd be offered an ablation at some point of my treatment, just when is down to the resources, he said that he has restrictions as to when he can offer one, whereas the Brompton has more resources so can be more aggressive with they're treatment from the start, he also did his junior dr there so he said it's an amazing place.. heart and lung centre of excellence
So... it's all getting very real now, the nerves are starting to kick in😬😬😬
All the best for your procedure when it finally happens, will look forward with pleasure to hearing all about how it went and what it was like. Kudos to you for putting yourself forward for this trial, although it sounds like you're in the best hands with Sabine.
Hi hope all goes well for u , I g to the royal Brompton all the time it's a lovely hospital I go ever 2 months for treatment there great u will b fine and looked after very well hope all goes well for u X
Of course you are nervous - that's common sense - but it's a wonderful opportunity to have up to date treatment and follow-ups from one of the best centres and EP's in the British Isles. Please do keep us up to date with your progress and well done for going for it.
How exciting. I dont think you can go wrong really given that you would have been put on waiting list for an ablation anyway. Now the decision is made you will be feeling positive. Well done for grasping the nettle. X
Hello juggsy75, I too have my scans on the 11th and the Ablation on the 20th with Dr Sabine Ernst . I know that most will think this is strange but I am excited about this trial and can not wait for it to begin not nervous at all. I suppose it is because The Royal Brompton is one of the finest cardiology Hospitals and a pioneer in heart and lung transplants etc. It is gold standard treatment there and I consider myself very fortunate to be on this trial. Because of the train strike which affects where I am in East Sussex. I have been booked into the Royal Brompton's hospitality accommodation arriving the day before the scan and the day before admittance to the ward. It is just a fantastic hospital that goes out of its way to help. other wise because of the strike I would lose my place in the trial.
Good luck with yours and just keep thinking that very soon you will be free of the beast.
Barbara
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What's the hospitality accommodation, how much etc
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Hello juggsy75 The Royal Brompton have adjacent almost to the hospital accommodation for overnight stays for family and relatives its like a mini hotel very similar to St Thomas's hospital where I stayed once when my husband underwent an amputation, it was amazing
For a single room it is £54 but you can also book a double for £67for yourself and your partner. it is in a secure building with showers kitchen and communal lounge. I found it in the Royal Brompton website and contacted Dr Sabine Ernst team, because of the strike I would not have been able to make the scan or the ablation . Dr Ernst has to ok it and of cause she did. I am spending in all three nights as the strike does not only interfere with the scan date but the ablation date as well. I do not want to let them down as I was told that the nuclear scan has to be flown in and only last 24hrs. This trial is obviously costing a lot of money .
If you decide to book accommodation with the Royal Brompton you need to ask for the hospitality suite I do have a number for them but I am not sure if I am allowed to post it on here. Please let me know.
Barbara
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I may see you on the 12th then,
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Most definitely Dr Ernst will have us all tucked up and well looked after.
Thank you Finvola. I will in deed let you know. It obviously is not going to be a walk in the park with the nuclear x-ray and scan and, of cause they do a TOE at the ablation as for Dr Sabine Ernst I have complete faith in her . Just something tells me this is right. If it works as well as her papers say it does then I have been a part of a trial that will eventually be rolled out for everyone who battles the beast AF and,this just might be the beginning of the end of people having to return again and again for multiple ablations who knows, at least Dr Ernst is trying to make a breakthrough and a progression in the treatment of AF and I am happy to be part of that.
Thank you Barbara for volunteering for this procedure with Sabine Ernst. You are in good hands at a fantastic hospital and it will be fascinating to hear all about it. You are truly a Pioneer in our AF futures. Anne
I am so excited about this trial not nervous at all I trust Dr Ernst completely. This is going to be such a breakthrough if it works meaning no more multiple ablations to tidy up or nasty symptoms as some if not all get after ablation. It truly will be the biggest breakthrough for years.
Please everyone keep everything crossed that this trial works and if so more will come along to embellish upon it and who knows an absolute complete cure. I do believe there is one out there for us all and this just might be it.
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Good luck with your scans tomorrow flipflop......
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Hello Juggsy. sorry just seen this post once again apologies. I have had all the scans and the injections today . The first scan was a CT scan with a dye injected into a vein in the arm called contrast medium this makes you feel a little warm for a short period but nothing to worry about. The scanning machine looks like a huge doughnut ring a huge circle that you are put through but is very open. Scan took about forty five minuets. The following day at 9am I had to go to the nuclear medicine department where I had to take four small potassium Iodine to replace any iodine that the radio active injection leeches from the thyroid, after taking the tabs I had to wait one hour for them to get into my system and then have the radiation injection through a vein in the arm and then the x-ray which shows up everything about the heart, that lasted for about 45 minuets and then soon after a second x-ray on a different machine in another room that lasted for about 30 minuets, this shows the lungs and chest area to make sure there are no problems such as clots hiding anywhere, then I had to go away for a couple of hours told not to drink or eat anything with caffeine in as it can affect the radiation in the body. I then had to return again and have both X-rays repeated. Dr Ernst is leaving no stone unturned she is being very thorough. In all for the four X-RAYS I was there from 9am till 3pm. Arrived back in Eastbourne by Coach 10pm a long, long day but, it is done and dusted now and so next Thursday for me is the big day.
Barbara
Now that you have made your decision I wish you all the very best . Look forward to a full report in due course!
Good luck Juggsy. You are going to be in the safe hands of an all-round wonderful hospital. They have fantastic equipment up at The RBH and that can be quite awesome but reassuring. Thank you for volunteering for the new procedure. I for one am very grateful as you are part of all of our AF future. Please do let us know all about it.
Great to hear all these positive posts about the Brompton. I am still stunned that NHS England want to stop all surgery at Brompton and Harefield as they say it does not meet all the new criteria.
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First appointment with EP
Still in AF but discharged from cardiologist
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