UPDATE Pace or Ablate - now completely confused

[Diddyd]

So I made a decision after all your helpful comments and careful consideration to go with a pacemaker.

The EP came back and was happy that I had a clear logical reasoning for my choice and he would be happy to do that as a plan but would now add diltiazem in to the mix with monitoring and see me the next day (today)

He returned after 6pm today looking absolutely shattered and not like he’d had the best of days.

He said that I could go home if I felt well and he would continue to increase my drug dose in the community then get me back at a later date for a review.

Or if I still felt unwell then they would keep me in hospital; increase drug dose and continue monitoring but this could be a bit of a drawn out process.

😫😫😫😫😫

To be honest I don’t feel that much different from being at home when I got sent in in the first place.

I am fed up of going round in circles; trying to stay out of hospital as my arrythmia nurse wants but getting sent back in hospital by a GP every time I have contact with them as they panic and tell me I am going to die of heart failure or a heart attack.

The nurse was trying to get me in the New Year to see my regular EP and both were pushing me to make a decision on a procedure and to ‘stop going round in circles and coming back into hospital’ so when I saw the EP in hospital yesterday he told me that that counted as my new year appointment.

I was expecting to be monitored and have the procedure this week so am completely taken aback by the change

Also to be told that I would be reviewed at a later date as he would consider me safe so we had plenty of time to think about a decision for a procedure/PM was a shock/goal posts moving again moment

It caused me to burst into tears as it took such emotional effort to come to a decision yesterday which once made had given me closure on the turmoil I was feeling.

Especially as nurse/regular EP has been pushing for me to make a decision on a procedure so thought I had already hit that point and that was what I was doing yesterday.

I don’t like taking drugs and don’t want more being added in. He said even if I go into NSR I would remain on them and could not come off them.

Now totally confused with what I am doing.....

[Ianp66]

Oh no, what a day, I really do feel for you. I had much the same before I got to the point I'd had enough. As you say GPs panic, I got sent a couple of times to A@E, for the staff at hospital a couple of times to get annoyed making me feel a burden, sent home until next time.So was this your regular EP today that seemed to be tired and change direction?

If your not happy, and it's a major life decision, maybe get a second opinion if possible. Its awful enough a condition without feeling bounced around, continuity of care, maybe the same Gp and treatment route is very important from my experiences. Don't lose heart though, I was in an awful place two years ago, had suffered permanent AF for near a year, and still had a happy outcome, please don't get too stressed, I know it's hard, but that won't help.

[Diddyd in reply to Ianp66]

I have not seen my regular EP at all as it has not been his turn on wards. So the EP yesterday and today was the same consultant but different to my regular one.

You have hit the nail on the head with continuity of care being the problem. You never see the same GP with the system the practice uses. Not helped by all GPs being part time and most working only 2 days a week. The arrythmia nurse is meant to be my main point of contact but that is only mon to Fri 9-5pm.

Am trying hard not to get stressed but it’s kind of a should I stay or should I go situation 🙄

[Ianp66 in reply to Diddyd]

I'd speak with your own EP if he's the one you have confidence in. I had similar issues with our local doctors, but after kicking up a massive stink got the same Gp to see me, even if it meant waiting a day, the usual Gestapo on reception were told that i had to have the same doctor as I had a heart condition they were managing, that seemed to make a point, and ensured I got the continuous care and same information, as probably the same you get sick of repeatedly telling the same case history every time and having the same questions and differing opinions, it's really disheartening, it's an awful situation your in.

[Buffafly]

I suspect the hospital is struggling with Covid emergencies and that is why the procedure is being deferred and you shunted out. Or maybe someone ‘on high’ has vetoed it at the moment.

I do think you are owed a proper explanation of the change in plan.

I take diltiazem and it’s fairly effective for me but can cause fluid retention which is already a problem for you so I think I’d opt for staying in hospital for a few days to see how it goes.

It’s a terribly distressing situation and I do really feel for you 💜

[Diddyd in reply to Buffafly]

They don’t have COVID patients here and they are keeping me in and were very clear that it is not about the bed which I thought could be part of decision. I think that they have gone away to discuss and because of my age and it being very final a pacemaker and ablate; they want to give the drugs more time. My heart rate is not stable enough for me to go home so they have upped drugs further and continue to monitor. With a view to establishing below 90 for resting heart rate. If that is achieved and I tolerate side effects, then I can go home. See how I get on. If that’s not achieved or I get home and cannot manage then they will pace/ablate which would be 4 week wait. So that seems reasonable. I am ok as long as they can tell me the rationale behind treatment decisions and not keep changing their minds!

[irene75359]

I am not surprised you are upset; I have been following what happened to you, and all the helpful replies, and could empathise with your uncertainty over which way to go. You have articulated very clearly about what has happened to you, I think the second EP's about-face in your treatment has caused all the confusion. I would certainly speak to the arrhythmia nurse (who seems to be on the same page as the first EP) and explain your distress. If it is within your means to see your own EP privately, and you trust him, he may well take you under his wing and follow through with any procedure on the NHS. Wishing you the very best of luck.

[Diddyd in reply to irene75359]

I got to see a very good cardiologist this morning who had a wonderful patient relationship with the old lady opposite me. I was worried that his manner would be a bit patronising for me but he soon changed when he arrived at my bedside and was very skilful in his approach. He picked up quickly what I wanted and where I had struggled with what I had been told. I had written loads of notes with flow charts to get my head straight; try and become less emotive and more to the point with my wants and understanding of where we are and summaries with questions. He spotted this and quickly asked if it was ok if he could use the paper and pen to sketch something. He wrote a clear simple diagram in treatment stages with all options and where that would lead next. He assured me I could lose some of the drugs if LV function restored with heart rate controlled. And others we could tweak doses. So that made me happier that what I am on now is not what I’m going to stay on forever. If rate control not achieved or drugs side effects intolerable then pace and ablate on table and a 4week wait if coming in.

[Diddyd in reply to Diddyd]

My EP is on duty today and will call to see me later. The arrythmia nurse has also been. So feel better today. Although would prefer the magic wand approach of getting better 😊

[irene75359 in reply to Diddyd]

Relieved to hear that you are feeling better and that you spoke to a cardiologist who could communicate effectively! Please keep in touch and let us know how things pan out.

[Barb1]

I should get it in writing that Pace and Ablate is the plan when COVID allows. That's about all they can do at the moment. If I were in your shoes I'd also get home asap where you are more comfortable and possibly less stressed. Try and keep calm. Many of us are playing the waiting game at the moment.

[Diddyd in reply to Barb1]

They won’t let me out at the moment. HR too unstable but am planning on getting home ASAP now I am not having a pacemaker this week!

[Barb1 in reply to Diddyd]

Agree with you! Hope HR calms soon.

[BrotherThomas]

I, too, sympathise with you, I've had similar problems myself with conflicting information given by different cardiologists who, essentially, come with preconceived ideas and don't listen to what their patients tell them. The last one was so far up himself that it's a wonder that he hadn't suffocated!!

The situation with GP's doesn't help either, I've now seen 5 of them and none was prepared to help me. The other problem is that it seems that no-one in the NHS talks to each other about patients so we come back to the differing opinions of different Doctors. They also seem to have forgotten that it's their job to inform patients and recommend treatment; it's the patients decision as to whether or not to accept the doctors advice. Doctors should not foist treatment onto patients or con them with empty promises.

All I can suggest is that you do your best to understand your condition and, when you make an informed decision on what you want to do, insist that that's what you want. If the doctor you're talking to wants to do something different, find another one who'll do what you want. it's your life!

[Diddyd in reply to BrotherThomas]

You made me laugh with your suffocation comment. The doctor today was very good. This route was confirmed by arrythmia nurse and EP so now feeler are on same page. But we will see.......

[momist]

I'm very lucky in that my AF is very sporadic and I go for long periods in between sessions. When it does happen, I manage it myself and just muddle through, I've only risked A&E once the first time it happened, and vowed never to make that mistake again, once I'd educated myself about the problem.

I've been waiting for an ablation now for three years, and had two pre-op sessions in 2020 ending up both times with the procedure cancelled for Covid19 congestion in the hospital. TBH, I don't want to go there while there's chance of me catching it!

I'm so sorry to hear that your treatment has been so severely impacted, but yes, the hospitals are under enormous pressure just now, and I fear it will get far, far worse in the next few weeks. If you CAN cope at home, then that's where I would want to be, and the answer to the GP problem is to just not go there. If your condition gets worse, communicate with the arrhythmia nurse first, not the GP. I hope you get through this, good luck.

[Diddyd in reply to momist]

This is all so true. One way to look at it, is that really they have your best interests at heart. Believe me I would of stayed away if I could. I am lucky as there are no COVID cases here; they are at another hospital. The systems in place are very rigorous. No visitors; no outpatients etc and we have special COVID curtains that are clear thick plastic so we can see and talk to our little bubble of 4beds. It is strange shuffling to the toilet in the early hours, trailing wires; wearing nightwear and a face mask. Bizarre. But feel very safe in the environment.

[opal11uk]

There is nothing worse than going round in circles over a health matter, its worrying and debilitating. I thought about your comments and put myself in your place, what would I do in your situation? Well, I would need to get this out of my system for a start so would sit down and write a letter to my original EP with a copy to all interested parties including your GP, just stating the facts as outlined in your post and that after much thought and investigation you have made the decision to opt for a Pacemaker, state this in your letter and ask when this can now take place.. When I had mine fitted it was as a day patient, you have to take care for at least 6 weeks after the procedure and they will instruct you accordingly, you also have regular pacing checks at the hospital. I generally put everything in writing a) this clears my mind and puts things into perspective and b) I have a copy to refer to plus a diary of events.

The biggest problem you have is the current situation hospitals are going through with Covid, they are overloaded to capacity however they are still doing some elected procedures, and that is what a Pacemaker is, but they are also trying to keep patients out of hospital and away from possible infection from the virus, so you are stuck in the middle and of course it is degree of urgency that is considered too, I guess if they can stabilise you with a change of medication in the interim that is what they choose rather than a hospital stay, albeit only for a day. Please remember that stress will have an effect on your condition too and shedding tears is the body's natural way of de-stressing huggggs. I, like all of us, wish for this dreadful situation to pass and that we can get back to normality, my eldest son is ill with Covid and his wife too so I am seeing this first hand and its very scary and I pray for the Oxford vaccine to be approved and all of us can get vaccinated but in the meantime we stay safe in our homes. For A/F sufferers (and others in ill health) this is a worrying time and the worry causes stress and the stress sends us in to A/F so try and relax as best you can, get your thoughts on to paper, if you can find something hobby wise that will help you relax, listen to music and so on, just don't eat chocolate and put on loads of weight! My husband is 80 and is never still, up until lockdown in March he was playing competitive table tennis, full of vim and vigour, I should add that he has Leukemia but ignores that fact but needs to have something to do so, being an old sailor, has decided he would like to make knots.......so several visits to Amazon and he has all the gear and sits most of the day getting knotted lol., he is also trying to put a ship in a bottle but for me it means he is occupying his mind and this in turn helps with his mental wellbeing so whilst I am not advising this for you it does go to show that if the mind is occupied life becomes a little less stressful. I send love and best wishes.

[Diddyd in reply to opal11uk]

I am sorry that you have experience firsthand of COVID. It is a very difficult time. I got everything out of my head by making notes; flowcharts and questions to bring some order to my mind so I had clarity when speaking to the doctor today with my thoughts and what I wanted. It was really helpful mr he clicked o straight away. ‘Oooh a visual learner, like me’ he said. Took the pen and made the simplest diagram which gave complete clarity. I am pretty tough and keep going, generally speaking. Spend a lot of time researching the Science and am very proactive in my care. I got A Fib to go away for 8 months before fleccainide dropped me too low; damaged my natural pace maker of the heart and flipped it into persistent AFib. But sometimes, it just all gets a bit much! Certainly an emotional roller coaster that I am not enjoying riding on. I loved hearing about your husband and how he occupies himself. Good for him. Maybe I will look at knot making! Always wanted to get a bit further than a basic slip knot!

[opal11uk in reply to Diddyd]

You now have this in hand, the only way is forward, good luck xxx

[Diddyd in reply to opal11uk]

Thankyou

[Buffafly in reply to Diddyd]

Crochet is similar but more decorative 😀 This reminds me that recently a group of ladies in our church have been yarnbombing to cheer up our neighbourhood. One of them (age 90) who had always led a very active life died suddenly just before Christmas and the tribute to her in church included a crochet posy wreath and the words ‘They also serve who only sit and knit’ 💗

[cali111]

It is good that you have made the decision. I was in your position and then the lockdown in March. He is right you are safe to wait until this pandemic passes the winter rush. Just relax and they will call you when they are able. I was eventually called in July none the worse for waiting.