Pain months after

I'm a 32 year old female and had an ICD implanted 8/3/15. I have takosubo cardiomyopathy with prolonged QT syndrome. It reared ito ugly head in my sleep and thankfully woke my husband who saved my life until emt arrived! After 4 days in a medically induced coma and a 9 day total stay they fitted me with an ICD. Ihave to say I'm extremely skinny and the thing popped out of my chest to start! I was getting discharged when they found a pneumothorax to keep me another day! A week after being home I still felt awful and they kept telling me it was impossible to be in so much pain. I went to a different er and they did a CT scan to find a small hole in my heart! Transferred back to my cardiologists hospital another six days and thankfully it healed on its own! I am a soccer referee which includes a lot of running and A LOT of raising my left arm!
The pocket has gotten a lot bigger and now sits in my arm pit a lot and turns sideways. It causes me a lot of pain and I haven't done a games or heavy lifting for 2 months now and in still in daily pain! I have seen the NP twice in the last 2 weeks and they basically tell me I have to live this way! I feel helpless does anyone else feel this way? I can't see my doctor until Feb. Is there anything that can be done or am I doomed to live in pain because of my occupation? Any help would be great because no one seems to be able to help or give any advice because I don't know anyone that had gone through this!


1 Comments

Better Care

by oldearthworm - 2016-01-04 03:01:58

I cannot envision the "thing" (ICD) popping out ...That would be like a man's eyeball popping out ...
OMG !
As I read .. I see some horrible medical care , I hope its not as bad as I think , but I'd seek something better , somehow ..

You know you're wired when...

Muggers want your ICD, not your wallet.

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Good luck with your surgery. It will improve life amazingly.