Pericarditis following pacemaker implant

[mountaintops]

Thank you to all who gave positive responses to concerns about needing a pm. The op took place on 7th September a day earlier than expected, under local, completely painless and home the same day. The following day saw us in A&E with severe chest pain & shortness of breath, was told to sit on a chair in a corridor until I passed out the only time in my life I have ever fainted - diagnosis one tiny pneumothorax that has completely resolved since and a bout of pericarditis caused by the heart reacting to the leads which was finally diagnosed 30 hours later by a cardiologist and an echo, treated with ibuprofen and, when they finally persuaded me it wouldn't make me high, oramorph 😊 Four days later and all was well. Unfortunately two weeks later back it came - saw my GP who was a bit puzzled there was no planned follow up by cardios but suggested repeating the treatment, again five days later all was well but now it's back again. I have rung the hospital to ask for a cardio appointment but was told to go to A&E & I'm not not prepared to be put through that again so am repeating the treatment. Anyone else experienced this following pm? Did you receive any advice about what happens next? Will it ever go away completely? How did you manage recovery? Is it just endless rest (not that I can do anything at the moment)? I was completely well before the pm which was put in for bradycardia and 2:1 heart block - all suggestions gratefully received.

[HeartyJames]

That is awful.. Take care

[Sunnie2day]

Pericarditis can be viral, bacterial, traumatic (as in the placement of your pacemaker), or for no discernible reason (aka 'idiopathic'). I've had 'recurrent pericarditis' since the late 1990s, mine is from Dengue Fever Stage2 (viral).

Recovery from a bout of pericarditis is difficult, made worse by the lack of clinical experience most GPs and even cardiologists have with the condition - it is endemic in sub-tropical parts of the US, sub-tropical and tropical areas like Latin America and Africa, but it just doesn't happen much here. When it does, patients either self-resolve (it can be like a 'heavy cold') or present to GP or A&E when chest pain and breathlessness becomes severe enough to concern the patient.

There is an excellent FaceBook group (uk pericarditis) loaded with tips on coping during recovery, the BHF downloadable pages on pericarditis are quite helpful as well.

The basic tips are:

Sleep with your upper body slightly elevated (two lengthwise stacked pillows under shoulders, neck, head), sleep only on your back or right side - sleeping on your left side brings on more chest pain.

Avoid heat, humidity, and mould. (no long hot showers, no sauna or hot tub, no holidays to the tropics).

Ask your medic about cutting your daily salt intake to less than 3g (salt=water retention=increased pressure on the pericardium). Do not cut your salt intake to less than 2g to avoid complications from low body sodium, 2.5g works for me but you need your medics to assess your best daily intake.

Also ask your medic if you can trial a medication called Colchicine - it can have shocking side effects so if you go on it, be alert to those side effects by reading the leaflet in the packet line-for-line and then posting it on the fridge for future reference. If you can't tolerate it, try aspirin (if you can tolerate it) or paracetamol for pain relief (the chest pain is wicked and perfectly mimics heart attack if bad enough).

DO NOT try to continue a normal physical daily routine no matter how good you feel on one day - one 'good day' used to 'catch-up' will cause 3-7 very bad days with you feeling anything more strenuous than going from bed to bathroom to sofa will cause you to collapse.

Ask for an echo to see if you have effusion (increased fluid in the pericardial sac), and if you do have significant effusion, ask how to manage it to avoid the need for a chest drain (pericardiocentisis and trust me you REALLY want to avoid having to have one). Colchicine usually helps - I can't tolerate it so when my effusion increases my cardiologist orders an 80mg Furosemide (diuretic) once daily for ten days. Everyone is different so be sure to ask your medics, take notes and then follow their advice to the letter.

It can take weeks to recover fully from an uncomplicated case of pericarditis, months to recover if complicated, and years to work out coping mechanisms if the initial case doesn't resolve properly and therefore leaves you with recurrent pericarditis.

[mountaintops in reply to Sunnie2day]

Thank you so much for all the info & practical advice. I'm really sorry you have had to deal with this for so long - almost 6 weeks since my first bout & I had had enough. I clearly need to toughen up & start battling for some help, even if it means going back via A&E. And you are right, on the few days I felt well I went out walking the coast path thinking the fresh air & sunshine would help & 2 days later the pain started again. Will rest this time - may have to get my husband to keep reminding me once the pain stops. Thank you again, I wish you the best health.

[Stanley18 in reply to mountaintops]

On the subject of Facebook, I’m a member of the Pacemaker UK group, which I have found to be enormously supportive. I am sure that you would find some shared experiences and hopefully much encouragement in that forum. I wish you a speedy return to full health.

[mountaintops in reply to Stanley18]

Thanks Stanley18, I have joined - you are right it is supportive, informative & inspiring. I've also joined the Pericarditis UK group which is also very informative (tried twice to join the bigger Percarditis group but must have missed a tick box as I was refused twice, hey ho). Feeling better today after finally sleeping well last night, keeping fingers crossed and resting up - the wet and stormy weather here is helping as not being tempted outdoors.

[ahcm]

Hello. With regard to the Pericarditis, I had to become an expert in it 20 years ago. I developed a very severe backpain that crept round towards my heart/chest. I felt as if I was being squeezed. In fact that's what was happening. The inflammation of the sac that surrounds the heart, the pericardium was squeezing the heart which caused me to nearly pass out. I couldn't speak or move and was gasping for breath. My husband phoned the Dr. who said to call an ambulance. I was in intensive care for two days but at that time no-one could find the cause of all this. My heart rate was pounding away at 240 for a few hours and if I hadn't been very fit the cardiologist said I would have died. I was 52 at the time and did a lot of exercise. I was eventually diagnosed with Pericarditis.

Medication wise, I had a (welcome) dose of morphine for the pain. think I was HIGH for 24 hours so my husband told me. I can't remember. Then I stayed in hospital for a week (it was 2001) and started on diclofenac, which was an anti inflammatory which is no longer in use.

I took that for a month and fell ok and I thought that was that. Wrong. It started again, so back to the Dr. He sent me to A & E and off we go again....another week in hospital. This time as well as the diclofenac I was prescribed prednisalone, a steroid. 30mg a day. Wonderful, I felt better instantly . Took that for a couple of weeks then dropped the dose down to 20 then down to 10 then stopped it. Almost immediately the Pericarditis returned. So back to the steroids again. This went on for another 5 years.They call it recurrent Pericarditis. In the end I had 27 episodes over 6 years. The steroids wrecked my health. They are lifesavers but long term use is not good.

So please do not take prednisalone. I wouldn't wish those side effects on anybody.

Nowadays the drug Colchicine is usually given for Pericarditis. It was this that cured me. It is a drug predominantly for Gout but is also good for Pericarditis. Ask your pharmacist for advice. Then approach your Dr. He may or may not know about this. I never had any side effects with it. With this I managed to come gradually off steroids.

Do keep trying to get seen by cardiology, they need all your symptoms on record to get a good outcome. Treatments for Pericarditis have progressed since my experiences. My 6 years of it probably wouldn't occur now. Anyway, good luck I hope you soon recover.



[mountaintops in reply to ahcm]

Thank you for sharing your experience & advice. 27 episodes in 6 years is awful. I'm glad the colchicine drug worked for you just wish they had tried it earlier for your health's sake. I will talk to a pharmacist & get better informed & start trying to get answers from our beleagured medical profession. It may be better to go with a list of possible solutions rather than just asking for help. Thank you again and I wish you the best health.