I posted this morning , I can’t See my post anywhere.It was about ablation and pacemaker.

[Luludean]

Long problem with my info from AF , have reported it frequently.

[Hidden]

Can see this one but not the previous one.....

[Luludean in reply to Hidden]

Not sure which” this one “ is? I wrote it this morning about fear.

[Hidden]

Luludean, I contacted AF Admin 3 weeks ago to see if there was anything they could do to help with your problem of disappearing posts so there is nothing else we can do as members to help resolve the problem. It seems strange the some posts are getting through when others are not as this does not seem to be happening with other members. I think you will agree that it suggests that there is either something wrong with your PC or you are are doing something wrong. I see you belong to other forums in Health Unlocked so I wonder if you are directing your posts to other forums. Sorry, but there is nothing more we can do remotely.....

[Luludean]

I will try. Thank you.

[jeanjeannie50]

Can't see any recent posts from you before this one.

[Buffafly]

I think you wrote it but the 'click' didn't take effect, possibly broadband/internet probs? Ours is rubbish and if the message doesn't get through to the server quick enough you have to send again.

[Luludean in reply to Buffafly]

Thanks lord knows what I do wrong now. I used to be fine at this game.

But I am gently unravelling. Wrote long post about my recent trips into AE/ coronary care. Had avoided this for 4 years do, am so miserable! These trips and one night in, were caused by a urine infection. (Before Christmas I got a glowing report from a cardiologist ( not an AF man) . This report judged me totally fit enough to travel alone to Singapore and NZ. I did this fine!!)

Now all of a sudden the drugs dont seem to be working and they want to do another ablation and fit a pacemaker on which I would be totally dependent. This freaks me out , can’t think about anything else. The only way not to drop over the edge is for me to be physically busy busy all the time. I can quite easily trip myself into Rapid scary AF . Sorry for moan, the worst thing is the conflicting information one is given , even in Addenbrookes. Now I have a 5 week wait for a 24 hour heart monitor ! That is crazy , NHS being so underfunded and over “ managed” that it is collapsing. Nurses should be paid treble what they earn! Such calm, intelligent kind people!

End of rant.

[Buffafly in reply to Luludean]

I can understand this idea (Pace and ablate) is a shock but I wouldn't freak out over it, in fact I wish it would be offered to me. If I have an episode of AF the only thing I can do about it is go to A&E. I would love to be able to take a PIP but I can't without P&A. For reasons particular to me I am reluctant to have another ablation so really I am helpless. The doctors I saw in A&E told me I am pretty fit and healthy (after asking me if I wanted to be resuscitated/kept on life support if things went pearshaped!) I guess you can be fit in between episodes of AF - doctors don't rate it as a life threatening condition normally, though it might be for me if I take medication to stop it 😬 I also get AF triggered by infection which is more likely as we get older. Sorry not to be more sympathetic (envious instead 💚) but my spine is held in place by a load of titanium rods and screws so I am more enthusiastic about modern technology than many people, very grateful it is available. My father died of a combo of COPD and heart failure caused by Permanent AF because there simply weren't the drugs and tech interventions available today.

I know waiting for answers is terribly stressful so I hope things move on as quick as possible for you. Best wishes 💕

[Luludean in reply to Buffafly]

Just sent another!

[Buffafly in reply to Luludean]

Not appeared, very strange! Your replies are working OK and your short posts worked too. If you know how to copy and paste I suggest you copy, I'll put up a post for you to reply to and you paste a reply.

[Luludean in reply to Buffafly]

Dear Buffafly, thank you SO much! Made me pull myself together !!! So you have had bionic work done! ! Full of admiration! I think living alone and 4 kids scattered is adding to my self obsession. Only use my I pad. Copy and paste beyond me.

BUT I paint , just at this moment wrapping up paintings to put in an exhibition. L

[Buffafly in reply to Luludean]

What a brilliant way to keep yourself busy while you wait. What medium do you use? You can do wonderful art on an iPad if you can get to grips with the technology 😊

[Luludean in reply to Buffafly]

Hah! I know ! But I paint portraits and big landscapes! Did children’s book illustration MA not that long ago. Decided “sod the world “ in 2000 after mitral valve repair and went back to art school . Loony thing to do .

I could send you some images by e mail. L

[Buffafly in reply to Luludean]

Not loony, my daughter (49) is doing MA in 'Mythology, Cosmos and the Sacred'at the moment - a lot of people do think that is loony. I would love to see your work, I have a small collection of children's illustrated books, some old and some modern.

[Luludean in reply to Buffafly]

Now those books sound interesting! Well done your daughter!!! Sounds an amazing course! I was 50 when I went back to art school. Felt like Methusula but it it really rejuvenated me!

Just got on from appointment with a gut consultant whom I trust? He said” hold fire on pace etc, your AF is not that bad, chest pain is reflux . “ Understood my terror and angst from too much and conflicting info. One specialist who sees me as a whole person not just a heart item. Any way . Tomorrow got to lug paintings in and out of car , down across town and see if they all get in to the exhibition,

Best W , L

[Luludean in reply to Buffafly]

Hi Buffafly, how are you.

Did you ever feel you were being missed or slipping through the net?

2 weeks of fear . 5 week wait for a heart monitor, or, I can go privately and get one instantly for£450. I find this obscene! But fear may drive me to pay. This morning finally Insisted on appointment with GP.

I am getting weird chest pains very high up in between ribs. It has not happened before . Cardio thinks it is not heart. Gut man thinks it could be gut but, no one seems to know. Inspire of 2 trips into coronary care I have had no chest X-ray.

I know it is not imaginary but, it is taking over, I am staying in. Hope you and family are well.L

[Buffafly in reply to Luludean]

Sorry to hear you feel so down Lulu, I am also not terribly happy at the moment, back and hip playing up but nobody told the weeds in my garden it has been winter 😱, I have not received a follow up appt from my cardiologist since I was in A&E, the higher dose of medication didn't suit me and now I've got a breast lump - pretty sure it's a cyst but it has to be investigated 😧 If we lived closer we could meet up for a decaffeinated coffee to drown our sorrows..... Very frustrating about waiting for the monitor but I think things get speeded up if they think it's urgent - I was told six weeks wait for an 'urgent' monitor but got it in two. Don't waste your money, have a nice day out or two instead 😊 As you mentioned 'lugging' paintings (how did the exhibition go?) I suspect you have strained something in your ribs or chest. I have to be very careful about picking things up and try to avoid anything heavy.

I'm thinking you really need something to help with anxiety, either short term medication to break the loop, or a course in mindfulness or CBT. As you are seeing your GP perhaps you could discuss it? I know it is horrible to be trapped in a spiral of anxiety and you do need help to break it.

Best wishes Xx

[Luludean in reply to Buffafly]

Good to hear from you!!! I understand your feelings!!

Horrid spiral to be in!!

Wish they had never said” do you have chest pains?”

Never had but o boy I do now! All in the head? It is just so Unnerving!

Got urgent appointment with GP. He was quite shocked by my hospital stories. Said pain in chest was “vagus nerve related” like Sanjay Gupta goes on about. As it lies just behind heart it alarms when it plays up and, it plays up when one is stressed, taking heart pills which upset gut anyway and.... joy of joy wheezy cough is due to Hay fever . Honestly! AF people can’t take anti hystamins.

Got appointment with a psycho person ( jungian) next Friday cos I am sinking under all this medical stuff. Also have big problems with daughter who lives at end of my road. Sods law , the nearest one is always a challenge , vile son in law ! Grand kids being neglected.3 other kids live NZ, France and one working in Cape Town. Bla bla...

So money will go to shrink not private monitor. No pills and no CBT , it does not work for me.

But back to you, I hope you have a supportive partner / family. It is hard work being invincible. Get that cyst checked out , one problem to get rid of! Weeds are amazingly quick

Growing!

[Buffafly]

Hi Lulu, sounds like progress! My daughter (one doing weird MA) is a big fan of Jung (BA in Philosophy) so much so she used to run discussion group. Hope it helps.

You can take antihistamines unless they fight with your meds? I take cetirizine every day all year, luckily own brand is very cheap as it's not prescribed any more, gr....

Best wishes again.

[Luludean in reply to Buffafly]

O ! I was always told with AF , on Digoxin, Losartan and Rivaraxaban. Anti histamines were not allowed, because they dilate the blood vessels. Lovely sunny day today !