Update to previous post re : AF: After a pace... - AF Association

AF Association

23,913 members28,940 posts

Update to previous post re : AF

cali111 profile image

After a pace & ablate plus PVI I am now with LS mild impairment at first, but developed into RS disyncracy which has now got worse and I cannot walk without severe shortness of breath. It was shortness of breath on exertion which took me to the EP initially so after 4 years I am not further forward. My EP described this as my rate is now perfect but my rhythm is all over the place, and I was to have another AF ablation this month which is now on hold. Now my symptoms have got worse I have suggested looking at a CRT when he carries out this ablation, but who knows, I am waiting for his answer. This lockdown has hit me very hard mentally but when I read of people who are worse it makes me grateful that my EP is still trying after others gave up. The light at the end of the tunnel is that my GP is on the ball now and treating me with high doses of diuretics to cope with fluid overload and a very small dose 2mg of Candesartan to help my failing heart. I am now lost as I do not have heart disease, any lung disease, my valves and atria size are all normal. Does anyone out there suffer from just AF with no underlying symptoms yet are unable to walk. I am a carer for my autistic son and he has taken over my shopping as I am unable to stand in a que to get in the supermarket. I did the other day and we ended up with a take-away as I felt too ill to cook. I dare not look for a future and take comfort that I wake up alive each day

19 Replies

Wow Cali life is certainly a struggle for you. I cannot offer you advice but I would like you to know that I am thinking of you. Sending you flowers & hugs 💐 💝

cali111 profile image
cali111 in reply to TamlaMotown

Thank you. I did not think that anyone would read it!

TamlaMotown profile image
TamlaMotown in reply to cali111

Whyever not you're a lovely member of the forum. You take care now 🙂

I am so sorry to hear that your symptoms have worsened. You have , and indeed still are going through so much.

Hopefully the high dose of diuretics will help with the fluid overload and help you to get more mobile.

Also hope that this lockdown will ease soon.....very hard on people like yourself.

Can you not contact your local authority to arrange for food supplies to be made to you. Some are able to do this.

Best wishes

J x

cali111 profile image
cali111 in reply to Jalia

My social services and carers people have contacted me to see if I needed help but as my son also lives with me I took the opportunity to push him further in shouldering responsibility for the home, not easy but I still have to steer him towards independence as he is now 36 and will inherite if anything happens to me and I am 75.

Hi Cali111. My experience is not quite the same as yours but might be similar enough to be of interest. I had a pacemaker fitted as an emergency for complete heart block. After a couple of weeks when I hadn’t improved, the pacemaker had recorded hundreds of very short episodes of AF. I continued to be unwell and very breathless on the slightest exertion but was fobbed off for 18 months or so. I then got a second opinion from a cardiologist at a bigger hospital and he repeated all the tests. These showed a lack of synchronicity of the ventricles, meaning they were beating at different times and not enough blood was being pumped out of my heart, so not enough oxygen was getting to my organs. I have no coronary artery disease or other problems like that. In December I had a CRT pacemaker fitted and this has made a huge difference to my health, the only thing that has in two and a half years! I can walk, even uphill, without getting breathless, other than the normal levels of being unfit! I can bend over too and stand for much longer periods. I do have the odd day or two still of feeling very fatigued and ill but that is once in a month or so, instead of how it was almost every day. The cardiologist had said it doesn't work for everyone but I have been delighted with the results so far and have an appt with him next week to discuss how I have been, probably by phone. I am looking forward to telling him how much improved I am. I really hope you get somewhere with your treatment options.

cali111 profile image
cali111 in reply to fantasyfanuk

This is what I am hoping for with CRT. When I last asked about this the EP said it was debatable as my heart wasn't that bad, but as he agreed to carry out a RF ablation to hopefully return me to sinus when I spoke to his secretary two days ago I asked her to put this to him about the CRT. So I live in hopes.

Thank you making me believe I have a future again.

CDreamer profile image
CDreamer in reply to cali111

Hi Cali - so sorry you are so poorly. I think I told you this before but I also have improved QOL massively with CRT - mine was implanted BEFORE I had any dysfunction. My sats prior to CRT would be around 92 & sometimes fall to 88. Now rarely below 95 & usually 97-98. Makes a huge difference. I’ve had almost no AF since it has been working 100%.

Keep pushing for CRT.

cali111 profile image
cali111 in reply to CDreamer

I got a reply from my EP to say that they may be resuming outpatient ablation in the next two months but it was too dangerous in the hospital at present. He also commented on my CRT query and said because my echo was showing no problem with my pumping function that returning me to sinus should solve my breathlessness . So I will have to wait and hope he is right.

I presume you are talking blood oxygen. Mine are still at 98 but my rhythm is very erratic. I am lost now as to understanding what is happening to me. Just have to trust the doc's to keep me going until I can get an answer. I deteriorated approx. one month ago for fluid retention but ever other test BP, blood oxygen, heart rate came back perfect. I remember you saying about the CRT but he said at that point it was debatable as my heart was testing ok,so all I can do now is push!

Sorry your having such a hard time Cali. I am sorry I don’t have any advice for you, just sending a hug🤗

Cali, I know what a hard journey you have been on; I can't offer any advice but please don't think there is not future, come on here and tell us how you are feeling; someone may be able to help and all of us care very much. Sending very best wishes your way xxx

Thanks for your support. It is a weird time also very frightening.

Hi Cali

Do you mind me asking what meds you are on(if any)? Could they be having a detrimental effect on your breathing?

Xx

cali111 profile image
cali111 in reply to Lilypocket

2mg candesarten, 25mg. Spironolactone ,80mg.furosemide, 10mg apixiban.

Lilypocket profile image
Lilypocket in reply to cali111

Thanks for replying. I do hope you get the CRT and that it alleviates your breathing difficulties. It is so frustrating when the drs can't find the root of the problem. X

So sorry to hear you are struggling at this difficult and scary time. I cant help regarding your health issues but I too have a special needs son who is 25 and I agree with you regarding them getting as independent as possible, as we will not be here forever. Its not easy though. It might be worth getting in touch with your Council regarding other needs as they may be able to help in some other way. Do take care and keep safe and I hope you get things sorted very soon.

JaneCx

cali111 profile image
cali111 in reply to JaneChapple

Thank you. He is well supported by Autonomy and Gateway but their meetings are suspended due to COVID

Hope you are a bit better now and have the support you need.

Take care

JaneCx

You may also like...