Breathless after ablation

[Steverobson5]

Hi afib people

This is my 1st post ever on anything but looking for help

I had my ablation just over 3 weeks ago - pre op I was slow at walking but not breathless now even getting out of the bath leaves me out of puff. I need a stick to walk to rest on every 100 yards. I have chest pains while walking so all up not happy. I have read about the nerve issue and this seems the likely candidate for the change - also my heart races now 4hours per day per op 2 hours per day. I am seeing my cardio tomorrow any suggestions re investigations welcome and if anyone else has had the nerve damage what was the prognosis-many thanks Steve

[rosyG]

Hi- sorry to hear this Steve- Some others will post who have had phrenic nerve injury- in the literature it says most people recover in 6-12 months. I would ask if there is anything to alleviate your symptoms in the meantime Do let us know how you get on

[Steverobson5 in reply to rosyG]

Rosy - many thanks - yes I've seen the 6-12 month timeline - I am looking to see what I can do to a get better and b live in The meantime e.g. Fly etc - I will post my outcome when I've seen the cardiologist many thanks steve

[pamcronrath in reply to rosyG]

Are you on amiordorone after ablation??

[Tessybear]

Hi I’m sorry to hear about your breathlessness. When you see the cardiologist ask about phrenic nerve damage. I had exactly the same after my ablation. I asked the cardiologist to see a respiratory consultant because I knew something wasn’t right. When the respiratory consultant compared an up to date X-ray with one taken before the ablation he noticed my diaphragm was raised and the only explanation was damage to the phrenic nerve during ablation surgery. The phrenic nerve tells the diaphragm to move up and down so the lungs can expand when breathing . If this doesn’t happen breathing is very laboured. The good news is that for most people it repairs itself over time. Mine has repaired, and I am almost back to normal now after two years, so I hope you get some good advice. Best wishes to you.

[Steverobson5 in reply to Tessybear]

Tessybear

Many thanks for your detailed reply - I will use this in my discussions with my cardiologist today

Take care

Steve

[Steverobson5 in reply to Tessybear]

Tessybear

Many thanks for your detailed reply - I will use this in my discussions with my cardiologist today

[Surreyhunni]

Hi Steve

I had my cryoablation in August and was left with phrenic nerve damage. Such a debilitating condition! To make matters worse for me I have also since been found to have kidney cancer and need the kidney removed but because of the phrenic nerve damage and the fact the ablation hasn't worked, its been in doubt as to whether it can be done. As to whether or not the risks are too high.

I have felt like I'm on death row! ..... fortunately after extensive tests they have now agreed they will remove my kidney but I am at high risk and will need intensive care and in an induced coma for a few days afterwards.

They confirmed mine by x-ray at the A&E when I was rushed there as I had trouble breathing. They suspected a blood clot. Previously I had phoned the hospital where I had the ablation explaining my problem and they said ' if you still have it at your post ablation check up (not scheduled until 4th Dec) then we will investigate but nothing can be done before then'. Saying I just have to live with it! Not very helpful at all.

All the best but I think we can only hope it will heal itself and the sooner the better.

[Steverobson5 in reply to Surreyhunni]

Surreyhunni,

Sounds like you have been through a lot - I really hope they get on with sorting you out soon - all the best and thanks for your kind words

Take care

Steve

[rosyG in reply to Surreyhunni]

Good luck with your surgery. Massive amount to cope with . Stay strong let us know how you get on please

[Surreyhunni in reply to rosyG]

Thanks Rosy - its pencilled in for the 29th. I hope you are well x

[rosyG in reply to Surreyhunni]

I hope you are fully recovered in time for Christmas Do let us know how it goes please- very best wishes

Rosemary

[Surreyhunni in reply to rosyG]

Thank you I will x Bit disappointed I won't now be able to attend my follow up appointment for the abalation as I wanted some answers.

[rosyG in reply to Surreyhunni]

Get the hospital to contact the ablation staff and get feed-back- they need to work together for you

[Surreyhunni in reply to rosyG]

It's at a different hospital. The consultant only comes to my hospital once a month - hence why I have a 4 month follow up instead of 3 month.

[Fastbeat in reply to Surreyhunni]

Pleased they are going to remove the kidney for you,wishing you all the best for 29th and a speedy recovery.

Jane

[Surreyhunni in reply to Fastbeat]

Thank you Jane as you know that was my biggest wish .... now praying the cancer hasn't spread further than the kidney. I hope you are well x

[Hidden in reply to Surreyhunni]

Surreyhunni how awful for you. Such alot to cope with. Wishing you well. Do let us know how you get on.

Sandra

[Surreyhunni in reply to Hidden]

Thank you Sandra - I hope you are well x

[Adiepie]

Morning Steve

I had significant breathlessness after cryo ablation. It was impossible to take deep breaths and walking was VERY slow! The good news is three months later it has all but gone away and I feel much better. In addition, I had severe indigestion, for which I’m taking Lansaprasole, but this now seems to be improving as well

Your consultant will be able to reassure you, but your symptoms are not unique by any means

[Steverobson5 in reply to Adiepie]

Adlepie

Many thanks for your reassurance and I hope mine all works out the same

Stay well

Steve

[LubDub in reply to Steverobson5]

I have also been breathless after slight exertion since I had cyroablation 17 mths ago . EP said my phrenic nerve was intact He sent me to chest consultant who said I had asthma This is controlled by an inhaler but I am still breathless. I am waiting for the result of a myocardial perfusion scan to see if blood is flowing fast enough through heart muscle.Just want to find out the cause .I am glad to be free of AF but this is restricting my life more.

Hope you get some answers, do let me know.

[Swamps]

Steve please do not panic. I did for about 3 months after my Ablation and I wasn’t properly happy untill 4 months had past. Especially the first few weeks I was out of breath walking to the shop around the corner. Going upstairs at home! I was cursing the hospital as I used to run 5 miles to keep going before the ablation. I complained to the hospital I had listened to the cardiologist who suggested that I’d be as good as new in about a week! The ablation nurses were more realistic assuring me that the cardiologists often believe their own hyped up exaggerated recovery claims.

The result being a more realist outlook. I walked a little further each day put up with the breathlessness and some very erratic pulse ranges. From as low as 28BPB up to over 120BPM all measured on my own pulse belt if I can find a way I’ll upload a Nights pulse variation from a couple years ago but my breathlessness coincided with the low beat and high beat episodes!

My point is after 4 months things started to leap forward! I haven’t had AF or arythmia for about 18 months now (Still get ectopics but more than manageable when you resurch them! I run to keep fit anything from 3 to 10 Miles 3 Times a week dependant on weather and time available! There is a good measure for your heart in excercise “If you can’t talk, walk”

It takes 3 to 6 months for the scar to form across the heart! It’s the scar not the operation that fixes you! They didn’t open you up but there is no such thing as a “Minor heart operation” be patient ask questions. Listen to the nurses and take their advice! The road to recover could be just 6 months away! Good luck look after yourself and take little steps! Improvement is from the day of the operation and not before it. You feel worse now but improvement is improvement no matter how small and for me it eventually surpassed and greatly improved on where I was before! Oh and I’m even lucky enough to also now be medication free as well! Be positive at worst you may need another at best you could be the man you like to remember

Hope my positive ablation give you insentive!

[SophieBella in reply to Swamps]

Thanks good to know. I too have had a 3rd ablation 3 weeks ago, and as you experienced gone from being relatively fit to constantly breathless.

[DrOxford in reply to Swamps]

Thank you for this hopeful post. It's nice to imagine, and helpful to believe, that there may be light at the end of this 3-6 month tunnel. I felt pretty great the first 3 days after the procedure but am now feeling more breathless and exhausted than ever before. I'm going to just take it in stride though, continue to look after myself and, as you say, 'take little steps'. Thank you , again, for these encouraging words.

[Swamps]

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[salious1]

Thank you for this.

[Tikaneko]

I have been searching for this post because I am so struggling with breathlessness but reading this makes me feel a whole lot better. There is some brilliant comments and information, thank you all .