Actual appointment face to face with an actual human!

[Indigrow]

After being sent to A&E last November by GP, diagnosed with AF and discharged with meds, then an echocardiogram beginning of March, I have an actual appointment booked with an arrythmia nurse end of July! Still a little bit in shock that I'll get to talk to someone! Came about because my GP wanted to discontinue the Apixaban meds, I suppose it must be expensive. Anyway, explained how life is (or rather isn't), result is continuing with the meds and a chased up appointment. I don't know whether I slipped through the system or am now jumping a queue...

[Autumn_Leaves]

Welcome to the club that nobody ever wanted to join!

Please don’t think you’re “jumping the queue”. You have every right to healthcare. I’m a relative newbie to AF and my first appointment with an arrhythmia nurse is a telephone appointment which keeps being rescheduled, but I did manage to see a doctor in the Arrhythmia Clinic last December so am “in the system” at least. I’ve found the level of care for a newly diagnosed AF person is a bit minimalist and hands-off. I don’t know if that’s because the NHS are prioritising the more urgent cases while everyone else has to self-manage. It certainly looks that way. I hope you find your appointment with the arrhythmia nurse helpful. I saw one for ectopics several years ago and she was very helpful, patient and willing to explain things. It might be an idea to prepare a list of questions beforehand. Good luck!

[Indigrow in reply to Autumn_Leaves]

Thank you! I'm still coming to terms with actually being able to talk to someone...I will start keeping a note of questions. Have felt so isolated, but taken support from this site; so useful hearing everyone's experiences. X

[JOY2THEWORLD49 in reply to Indigrow]

Hi

In many ways you are lucky because of being noticed.

In NZ after Stroke with AF Rapid and Persistent then 4 days into being in hospital a Carotid Arteries Scan showed a shadow on my Thyroid. All new to me as no meds prior!

The consent for a Biopsy was Oked by me.

No follow up! For stroke and AF.

I had to remind my Triage Team that I had not got an appointment for Biopsy.

A problem as I was internally REFERRED. It was like that all the way towards my Thyroidectomy 4 months later as members were arguing that Ishould wait 6 months after stroke.

It was @ 4 months as my Surgeon and Anaesthetist aired on the side of caution. The whole thyroid removed which included the 1.9 carcinoma in right lobe, one surgeon spotted a little in left lobe. All12 lymph nodes removed on right. 2 were found that the Papillary Cancer was already affected.

I was lucky.

Al the best while you get sorted and do ask for an information pack which I did after the Thyroidectomy. But I was still trying to go down the naturale way. The Chemist gave me a 'wake up call. Thyroxine is the synthetic hormones' pill to keep you alive.

cheri JOY. 74. (NZ)

[Hylda2]

I just tell anyone who wants to fiddle with my meds that I will discuss with cardiologist. They back off! Haven’t seen a cardiologist in years! 😉🙄

[Indigrow in reply to Hylda2]

Genius! Thank you for sharing your wisdom xxx

[waveylines in reply to Indigrow]

Yes indeed don't let a GP fiddle with your meds..... insist cardiology deal with it. I hope your appointment goes well. If the nurse isn't able to answer your questions do feel able to ask to speak to a doctor.....

[JOY2THEWORLD49]

Hi

Apixaban discontinued, I can only think that you may be changed to another cheaper modern anti-coagulant.

I'n on PRADAXA 110mg x twice. It has an antidote.

Relax and make a list of questions.

chers JOY. 74. (NZ)

[Indigrow in reply to JOY2THEWORLD49]

Thank you. Planning to make the most of the appointment!

[Hylda2 in reply to JOY2THEWORLD49]

Me too! They tried to tell me I would only take one tablet a day instead of two! So!!

[pusillanimous in reply to Hylda2]

I feel for GPs. they have so many conditions and patients of different ages and temperaments to deal with. I'm in South Africa, so if you want good medical care you have to go private - this is not as financially crippling as it sounds, as we have non-profit making organisations called Medical Aid Societies that we can subscribe to. Thesebear most of the cost. depending on the plan you choose. I have been seeing my lovely GP for 15 years (I see a cardiologist annually). I was taking Xarelto, but reading this site, it appears that Eliquis is the anti-coagulant of choice, for AF. I asked her to change me to that, which she did. When I went to the pharmacy with the new script, I saw he was dispensing half a packet, I immediately protested that I should be taking 2 x2.5mg a day., he agreed, but phoned her to clarify, she had no problem with accepting that was the right dosage. When I saw her I apologised for questioning her prescription, she said she had no problem with that and said that she does not always get things right and appreciates all feedback.

[DoggieMum]

Glad to hear it. I have finally got an appointment with an arrhythmia nurse in July after refusing to take 'no' for an answer. It's a shame we have to go to these measures to see a professional and it's counter productive for them as well as is causes more work for them than if they did it the first time. Rant over

[Magson]

If I can give you a tip- try and keep a log of your AF episodes so you have a record and you can present this to your EP team. If you are not aware of your AF episodes(like some aren't) get a Kardia monitor. This worked wonders for me and the process moved more smoothly and quicker. Good luck.

[Indigrow in reply to Magson]

Mine seems to be ongoing, funny rhythm whenever I check pulse or oximeter. The echocardiogram results weren't clear according to the summary because fast afib was present. I guess a Kardia could be useful; I'll look back at the discussions and recommendations on here and get one so I have something to take with me to the appointment. Thank you.

[Healthy65]

Treatment for AT should not be undertaken by a GP and you will need more than one echocardiogram to sort out what is at okay Buy a Kardia portable ecg monitor use it to record incidences of afib . As for Apixaban that's the recommended blood thinner to protect you from strokeUnless you have suddenly stopped having a fib runs there is no reason not to take preventative meds

It's a job for a cardiologist to sort out and your GP should be doing that referral asap

Getting on top of a fib before it develops into permanent condition is the priority

I had an ablation done in April as I was delayed getting treated things were really developing with res us unit like a second home I was in that often

Don't be fobbed of you need that assessment and treatment path by the way the newer pulsed ablation is so much safer and takes less time

Push to get the real solution and Good advice / help through the real experiences of folk on this platform

Good luck keep strong

[Indigrow in reply to Healthy65]

Thank you! It's so hard to know when to push for appointments and when to wait. All the stories on the news are about a creaking system and I didn't want to add to that unnecessarily. But I am very glad to have an appointment with a medical professional!

[Chinkoflight]

Hi Indigrow, I don't think it's personal! Staff have discovered the novelty of making a telephone call, but always from a withheld number in my case!I have a 'silent' LINQ implant ECG to record 24/7/365 for up to 5 years. In May I had a telephone call from a physiologist who told me I had an AF event, just one shortish event but she would let the consultant know. He phoned me up the next day and said he would leave a prescription to change my medication at reception and write to my GP. Since my stroke emergency in an out of my area hospital in March '22 I haven't seen any member of staff from the NHS local cardiology team apart from the two nurses who implanted my LINQ and a member of staff who fitted a 7 day Holter last summer. There is no follow up planned either with the local stroke or cardiology teams. Down to my Primary Care team ie GP to monitor me now.

[Indigrow]

That's why I love this community! Thank you for sharing your story, it really helps to bring perspective.

[Territorial]

I live in rural Australia getting a cardiac nurse took 2 weeks a cardiologist 3 months an electrophysiologist 9 months and an ablation 12 months for persistent AF..I was pushing to get an ablation from day 1 too any way i wish you all the best and good health..

[kkatz]

I can beat that 2.5 years from switching from Paroxysmal to persistent.only time I actually saw a doctor or Arrhythmia nurse was when they did the CV ,then the ablation.Follow up after ablation at 3 months was face to face but next one at 6 months will be telephone