AF advice

[Leafield15]

Hi my husband has AF and has been really poorly since last July. 2 ablation on he’s still not right. Meds have been adjusted several times and he has another cardio version soon. He gets breathless, unable to walk far, feels sick sometimes, trouble sleeping at times. Loss of appetite at times. Today he had an echo gram which showed he has a poor functioning heart, functioning at 35%. It so worry and upsetting to hear and hard to see him feeling poorly on his bad days. Any help or advice would be appreciated. He’s currently working from home and not getting the exercise he needs so planning to do more light exercise to help

[Fullofheart]

Hi, I have had AF for 17 years (sine late 20s) and recognise many of those symptoms and have very often had them dismissed, especially chest pain and breathlessness. I've also had well periods though and mostly been able to function pretty well other than when first diagnosed and now. I'm told I now need more 'aggressive' treatment as I also have reduced heart function. Waiting on cardioversion then discussing ablation following. I'm told this might not be too successful as I've been in AF for so long. Currently on bisoprolol. Helping a tad. But it's hard to get the meds right, as you are experiencing also by the sounds.Have you had the echo report explained to you, and do you have a copy?

The figures need interpreting properly. If you have the report, I recommend ringing BHF helpline and talking it through with one of the nurses. If you haven't had the report, do ask for it. I was quite alarmed by my report but once explained I feel much more informed and more positive.

Hope this helps! Wishing you and your husband well and hope he is seeing a good cardiologist. Makes a big difference!

[Diddyd]

I agree with Fullofheart that discussing this with a professional will help. The other thing to do is contact arrythmia nurses if you were given a number for them to support you.

I have AF and gradually developed the same symptoms with the same LVHF of 30-36%. The symptoms were due to not enough blood being pumped out of the heart in one heart beat. I was offered the choice of ablation or a pacemaker. Ablation would only be 50% successful in my case and I know that you often need more than one. The thought of that was too much for me and decided on pacemaker - CRT-p plus node abalation (pace and ablate). It is over 90% successful first time and I no longer take high doses of 3 heart drugs which seemed to have little effect.

The nurses can help discuss what is happening with you but also try and expedite any appointments or arrange one if you don’t have one. If you don’t have this contact then call the medical secretary or see the GP to get them to expedite things.

Lack of appetite - eat only small meals whenever you are hungry. Don’t get hung up on times of day etc. Eat what you fancy.

I could not eat large meals; creamy things; dairy; chocolate ( took me 6 weeks to eat my small Easter egg! Unheard of!); spicey things; tart things. Even the smell,of food could be enough to make me want to be sick. My poor husband cooked me lovely meals each day and often I could not eat them or only small amounts. I favoured plain soup; boiled eggs; plain salad; fruit.

Nausea- I hate feeling sick and this was a real bug bear. Sometimes I would sip small amounts of soda water and this helped or ate one small plain cracker or sipped ginger tea sometimes sweetened with a little honey. All of these helped and it was just a matter of finding something that worked. Some days one thing was more successful than another.

Also if nausea continued at night, then I slept propped up with pillows and a wedge which can easily be bought quite cheaply from places like Amazon.

I am self employed and carried on working from home. Fortunately my working day is late afternoon/early evening so I could rest up in the day and take my time getting out of bed so that I had enough energy to work.

Exercise- I managed to do lower impact things like Pilates and yoga for awhile but then I began to suffer with fluid retention and shortness of breath that made it difficult to do even this. Be careful with exercise and do something very gentle but be prepared to stop if dizzy or light headed. I have just found a really good web site that has gentle exercise videos on especially compiled for people with reduced heart function.

pumpingmarvellous.org/heart...

Don’t be alarmed by the term heart failure here; the exercise videos are for anyone with cardiac problems as well. They are quite good and you can pick what you want to do. They are quite far down the page so keep scrolling past the info to cardiac/HF rehab section.

I understand it is very upsetting to see. My husband and daughter found it very difficult mainly because they felt they could not change things for me and were watching me suffer. Be there for your husband but also carve space in the day for you to look after your mental well being. They found going for a walk or talking to each other helpful. They both took up yoga and love it. Also they use the Calm app for meditation. This all helped them through a difficult time.

Your husband may find the Calm app useful too either for the meditation section or for the sleep stories/sound baths to listen to at night when it is tricky to sleep. There are other apps such as Headspace that are equally as good.

I hope some of this helps you find a way through the current circumstances and that your husband can manage some of his symptoms better until he gets further medical care. Best wishes to you both.

[Leafield15 in reply to Diddyd]

Thank you for your reply. I think he should push for the pacemaker. It has been mentioned but they said down the line but after reading your response I think he should pursue it more. He has a cardio version on Thursday and has lots of questions to ask at his appointment. He’s under the Freeman and they have been good to date so fingers crossed.

[Leafield15 in reply to Diddyd]

Can I ask how you found the procedure and recovery from the pacemaker?

[Diddyd in reply to Leafield15]

See what they say after the cardioversion. Am really pleased he is armed with questions!

I am probably not the best person to ask about the procedure!

The pacemaker fitting was under a local anaesthetic and it was an inexperienced EP under the watchful eye of the experienced EP. He took longer (2hours)and I had no sedation. It was ok but he had a few problems and kept calling the experienced EP to help out. Not being sedated you hear every word which makes the anxiety levels rise somewhat. I would definitely ask for sedation for this part

Only needed paracetamol for 24 hours after. Restricted use of left arm for 6 weeks and no lifting. Got a bit shoulder sore but a physio told me to lean forward and dangle arms allowing them to gently rotate. That worked a treat. Slept on back propped up on a wedge and pillows.

The PM was not switched on and was going to be after the node ablation 4 weeks later. This ended up being 12 weeks later due to Covid and back logs. However, a highly experienced EP with a kindly, trustworthy manner did the ablation. I felt in safe hands. This again was under a local. No sedation at first. Entry for the femoral vein in the groin. I could ask questions and see the images on screen which are fascinating. When they Ablate, you don’t feel burning but discomfort in the heart area which can sometimes be a tightness into your throat and roof of mouth. But it is very short lived before they move on to the next site. So all bearable. Now most people only go up to this point. A node ablation is meant to be more straightforward than other types and takes about 30 minutes.

However, as soon as he thought the electrical signals had stopped, they came back so he decided to go through the femoral artery, this is a deeper blood vessel (located by ultrasound) in accessing this I felt a white hot pain in my leg as he was close to the nerve so he decided to knock me out totally with sedation. I had no knowledge of what they did to me from then until I opened my eyes.

Went back to ward where you lie flat for 4-6 hours and a nurse checks the site regularly. After this time you can get up but stay in overnight. Then cardiologist and the cardiology physiologist ( pacemaker person) comes to see you in morning to check all is well and you get discharged.

The EP who did the procedure came to see me immediately after to find the heart monitor going at 148bpm and in AF. So the procedure had failed. This is really, really uncommon! The success rate of a node ablation is above 90%. Some figures state 98%. So that meant he had to list me as high priority for a second node ablation.

Immediately afterwards at home I felt tired and a little bit achey in the heart area but did not need painkillers and rested. I was back at work after a week.

Unfortunately, about 10 days later, I collapsed at home and needed to have the second ablation done as an emergency. My heart did not know what to do as I had a pacemaker set at 50bpm and a partially ablated node! So it was all over the shop.

They had to 3D image my heart this time and found I was technically challenging as my heart is physiologically different in shape and position so it had been very difficult for them to locate the areas to ablate and they had to do a transeptal puncture ( hole through from one side to another) which I was told is not common in a node ablation.

The pacemaker was set at 90 bpm in day and 50 bpm at night. This was for 4 weeks then I went to pacing clinic and it was dropped to 75bpm in the day. I go back in 4 weeks again to have it dropped to 62bpm day time. They do this if your HR has been high for awhile. Mine has been high averaging130bpmfor 9 months. It allows the body to adjust. After this point it should be just about tweaking to get it right for your lifestyle.

I was also given a monitor that goes under the bed which uploads data from the pacemaker every night at 2 am whilst asleep. There are alerts set so that the hospital contacts you if there are any strange readings etc. So it is peace of mind.

The best bit is that I have come off high doses of digitoxin/ diltiazem/ bisoprolol and just have apixaban and furosemide. Hoping to get rid of the furosemide soonish!

It is just over 4 weeks and initially it was tough but I now have times where I feel like a new human. So if you asked me was it worth it...... I would say yes.

Importantly rest when you need to and potter between times. Take it slow and easy.

Apologies for such a long post, but I know when I was making the decision about the procedure it helped to have as much information as I could about the process.

I could have opted for ablation for AF but my chances of success quoted was low and I did not fancy the recovery period plus having to repeat the process more than once. You also may need to continue heart drugs. The uncertainty would be too challenging for my brain! Whereas the pace and Ablate had a higher success rate; faster recovery; not repeated and no uncertainty plus you can come off heart drugs. Life expectancy is no different either way.

It is a personal decision that others may have chosen differently. Please get in touch if you have any questions along the way.

Wishing your husband a speedy resolution to his symptoms with a decision that feels right for him.

[Leafield15 in reply to Diddyd]

Thank so very much for this detailed response. Much appreciated. I wish you good health. You’ve certainly been through a lot too

[Diddyd in reply to Leafield15]

You are very welcome x