Newbie Here with Questions

still early days

by Pacemaker_Sally - 2020-01-02 23:52:41

This is a tough one. How do you know when something is normal vs. dangerous and an indicator of possible complications? 

I'm not sure what recovery guidelines they gave you, but mine included things to watch out for (fever, hiccups, etc.) and suggested "no shoe tying" for at least a week. For the next few weeks, I would suggest "if it hurts, don't do it". If you need pain management, take it on a schedule and don't allow yourself to have big pain spikes.  

I needed a lot of pain management for the first few weeks. It varies from person to person and it is definitely worth keeping yourself as comfortable as possible while the healing takes place.

Hello!

by arent80 - 2020-01-03 00:12:44

Thank you Sally! I was warned about the fever, hiccups, night sweats etc. I was also told there would only be pain near the incision. This is why the chest pain was of concern. I am definitely limiting all aspects of my life to allow my body to recover but all of this has made me pretty hyper-sensitive as well. This has definitely been a life changing experience! Again thank you for commenting back :-)

Have you tried a non-steroidal like ibuprofen?

by crustyg - 2020-01-03 09:31:36

The pain from pleurisy and pericarditis is due to the inflammation, so it would make sense to try an anti-inflammatory such as ibuprofen - if it's not forbidden for you.

Your description of the pain sounds a lot like pleurisy, but you are pretty firm about not having chest infection symptoms (not easy to see some chest infections on a CXR - it's a pretty blunt instrument).

When you say your blood work was normal, did they actually test ESR/CRP?  Full pop diff on the blood count?

Sorry to be the Cassandra here, but pericarditis from a PM lead implant is very possible if the lead has partly penetrated the heart muscle wall.  If they've done the CXRs properly they should be able to rule that out with some confidence, but not entirely.  There's a post on this forum last year where this was suspected, but the CT couldn't be read with any certainty (you get a flare from the metal tip of the lead which can obscure exactly what you want to see).

If it were me, I'd be camping outside my EP doc's door until I was happy that they haven't messed this up - and then I'd try the ibuprofen (I'm not anti-coagulated - not keen on NSAI if anti-coag'd).

A lot will depend on whether the pain has changed (getting better, worse, no change) and how *you* feel about it.  Worse with breathing (pleurisy is usually *much* worse with deep inspiration)?  But yours sounds very postural, which *I* think tends to suggest it's mechanical, not infective.  But, as a counter to my pessimistic outlook, I had several episodes of sharp pain in my L chest some time after implantation - turned out to be PM pocket pain, nothing to worry about. It just didn't feel like the front of my chest (standard L sided, in front of the pectoral muscles), felt more like the middle of the chest for me.

Let us know how it goes for you.

Best wishes.

Have you tried a non-steroidal like ibuprofen

by arent80 - 2020-01-03 10:35:19

Hello there!

Thank you for your detailed response. I would say that as of this morning it's getting a little worse. I will return to the EP office today. I woke up having night sweats and a temp of 99. I keep researching pericarditis and I have all of the classic symptoms. It even hurts now when I tilt my head back and swallow. I feel the same stabbing chest pain. It helps when I sit up or lean forward as well. I'm also having crazy palpitations. Prior to the surgery I didn't have any. Ever since I've had them daily and last night I had a pretty long episode which has never happened before either. Usually it's one quick palpitation not back to back for like 10 seconds. I was lying down and it actually made me sit up rather quickly. I'll keep you all posted with what I find out today. They mentioned an echocardiogram but I'll push for that and a CT. Thank you all for the responses it is greatly appreciated! 

I don’t want to scare you but

by guods2020 - 2020-01-03 22:30:22

I joined today just to comment here. I don't want to scare you but I was having shooting chest pains on the opposite side of my PM (implanted 12/5/19) that eventually turned into pressure in the middle of my chest and weird gurgling/sore throat feeling. I was discharged from the ER with diagnosed with pleurisy (CXR and CT normal) only to be admitted 2 days later via ER with cardiogenic shock and cardiac tamponade. They drained over 1/2 L blood off my heart and another 400ML over the next 6 nights in the hospital. Can you request an echocardiogram to rule out something similar? 

I don’t want to scare you but

by arent80 - 2020-01-03 23:24:50

Wow! That is quite scary. They admitted me for an overnight stay. So far I've had blood work, cultures, chest X-ray, EKG, echocardiogram, CT of my lungs and ultra sound in my legs to check for clots. I am still waiting on results but I'm in a safe place for tonight. I'll keep everyone posted. Hoping for positive results!