So upset ! After 12 month wait & failed cv back to 4 -5 months wait to see Ep .

[kkatz]

I am so upset & even wonder life is worth living.I will get over this but so down.after my failed cv the Arrythmia nurse went through further options and I thought he was offering them.Rang today and basically he has to refer me to an EP to make a decision.the waiting list is 4-5 months for this alone and at end of it the Ep may think too big a risk.I am sat in tears and I don't cry.I had to fight all the way to get the Cv and I am worse than before. Just feel nothing to look forward to.

[Megams]

~Hi kkatz - I am so sorry to read of your situation and not too sure what cv refers too.I just want to extend a hand in reassurance that others like myself care from the other side of the world and hope that your issues can be sorted and resolved sooner rather than later.

Abundant Easter blessings & hugs are sent your way ~

[kkatz in reply to Megams]

Thankyou.Cv is Cardioversion.

[Megams in reply to kkatz]

~Of course it is kkatz - so sorry your ticker didn't stay put long enough for you to benefit - darn.Can meds not help in meantime until opportunity arises to see EP?

[kkatz in reply to Megams]

I am so totally adverse to taking more meds and managed the year with no extra meds.But speaking to the Arrythmia nurse I was practically begging for them.Before the cv I could do most things on most days.For example I could do 3ml walk with a couple of rests for a few minutes .Some days more.Avoided Inclines. built it up from 1/2 mile.Sometimes I got caught out & had to do 5 or 6 ml or really steep hills.We went away for the weekend on the hottest week in Summer & found accomodation was up Cardiac hill & restaurants at the bottom.I though it was going to kill me. Suffered & needed to rest for a while but survived.I could do a crown green bowling match but not if really hot weather.I could do half a flat green match but not a full one.I couldn't enter my bowling competitions.Hopefully I will get better over the next week or so.

[Megams in reply to kkatz]

~I totally get it with meds - had to bite the bullet & keep trying to find meds to help hold ingoing pesky tiresome paf - realized in the end if I didn't I was adding additional strain to already tired struggling heart.Side effects from meds worth it just to get to 2nd base.

Was totally resistant to ablation too - been the best thing ever

Realize a change of attitude was what I needed ~

[Natur in reply to kkatz]

I share your devotion to exercise. I’m 82 and it gives me strength to endure (helpful) assaults like ablation. I also share your despair at being unable to get attention when needed. Finally I also share your aversion to unnecessary meds. Diltiazem has been very useful to me when my AF was only occasional; it was my go-to when episodes occurred. Maybe medicine while you wait will be useful. Best wishes and keep up the good work!!!

[Singwell]

I understand you've had a blow but try to think of it as a set back, it's not an ending. AF is a journey for all of us - because we're all different sometimes it takes a while to find the right solution. It's highly likely there WILL be a solution of some kind - medication that suits you or a procedure such as ablation - that will make your life better. It may not take the AF away but it will make it easier to live with so you can get on with and enjoy your life. 4-5 months isn't long in the UK I'm afraid. If you want to speed that up ask for a private appointment. And if you are really struggling and miserable with the AF symptoms, tell the nurse and ask if there are is any interim help you can have in the meantime.

[kkatz in reply to Singwell]

What makes it so bad is that my persistent AFib started Jan 31st and I had 6 months of fighting to get my referral actioned and 7 months waiting to get the Cv done.Cant go through that again so I am not going to. Chase & try to be positive.Not put my life on hold.

[Singwell in reply to kkatz]

I understand. Yes, that's an unacceptable level of waiting. I didn't know about the 18 week rule given below. Write, pester, be proactive.

[kkatz in reply to Singwell]

But 18 weeks to see the Ep and then maybe be told not suitable for invasive action or wait 18 weeks for the action.

[Singwell in reply to kkatz]

Yes, that's the NHS at present. I waited 6 months for both my ablations once the decision was made. I think it varies between NHS trusts.

[Thomas45]

The NHS standards states that the MAXIMUM wait to see a Consultant is 18 weeks. The pandemic may have lengthened this time which is understandable. The alternative is to go private.Some years ago I had breathing difficulties due to nasal polyps. Then the waiting list was 3 months. I decided to go private, saw a consultant in 2 days.

You can go private to see an EP and then go back to the NHS for treatment. I don't the current cost. I've had AF for 26 years but have never had an electrical CV, nor seen an EP. My AF has been permanent but mainly asymptomatic for the last six years.

Last July I needed to see an NHS orthopedic consultant. I didn't go private on that occasion and waited only 4 weeks. I will be seeing an NHS Consultant Ophthalmologist shortly after a 12 week wait.

[kkatz in reply to Thomas45]

Even 18 weeks seems an eternity after last year I was referred in Feb 21 . Despite paying privately for echocardiogram and my doctors chasing I was stuck in the heart failure stream and rejected.Doctor referred me again.August telephone call from Arrythmia nurses.Had to fight all the way through against "with your age & other medical history your treatment limited".I really feel the only way to cope with this is to just focus on self help ,loose weight & build up my excercise capabilities.I had got used to managing it before Cv.Thanks for the advice though.Still totally up & down at the moment.

[Thomas45 in reply to kkatz]

One of our difficulties is that we do not have medical qualifications. You are anxious about your health. I'm not anxious about mine. The only thing that's causes me anxiety is the thought of flying, so I avoid it and travel by other means. You seem to have no problems flying to Portugal.It's easy for those who don't know you to tell you to stop worrying. I have a friend who's anxious about aspects of his life. No reasoning nor medication stops his anxiety. I take the "whatever will be, will be" attitude to life and put my trust in medics.

I'm 76 and have other ailments - asthma, lymphoedema, a benign prostate problem, and right foot drop, the latter being inoperable. I will be having at least one colonoscopy this year, and await laser treatment for posterior capsule opacity on my right eye.

I live alone with my wonderful 3 feline companions. I have avoided Covid by having 3 jabs, 4th to come, and being in voluntary lockdown.

I wish that you have an improvement in your health.

[kkatz in reply to Thomas45]

Thanks for views & I appreciate your outlook.I am not anxious about my health.I also have many other quite serious health problems .I always have just plodded on & people are quite amazed at my attitude.I suppose it is my inability to do the things I could do previously & having built up my hopes re the Cv. I have nearly died a couple of times and lost 3 children ,2 within 5 days of birth.I am a survivor and will survive this.

[Jajarunner]

What a b*mmer. No wonder you are upset. Is it possible to see the EP privately? I was forced to do this during the first lockdown and it was excellent as he then referred me back into the NHS for an urgent DCCV and the ablation. It's pricey though £250 for a phone consultation.....

Good luck xx