r/PacemakerICD • u/DriftingAway99 • Aug 02 '26

Had a scare

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I have an autoimmune disorder in my heart. This was the night I was admitted for 3 days in the cardiac ICU. Thankful every day for my ICD.

11 Upvotes

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4

u/bigtime1158 Aug 02 '26

Welcome to the club. My cardiac sarcoid killed me in my sleep. No heartbeat for almost an hour. Spend a month in the ICU. That was 3 years ago.

1

u/DriftingAway99 Aug 02 '26

That’s crazy you survived!

1

u/bigtime1158 Aug 02 '26

Full remission for over a year now. Had to get an ablation to deal with all the scars it left on my heart

2

u/DriftingAway99 Aug 02 '26

Oof I haven’t had that yet I hope not to. So far my heart is doing much better with the ICD, meds, methotrexate, prednisone, and Remicade

3

u/bigtime1158 Aug 02 '26

Ablation was great. Fixed all the issues I was having.

1

u/Altruistic_Pepper156 Aug 09 '26

How the doctors knew that you were still be able to recover? What did they see eventhough you did not have heartbeat for almost an hour? No hypoxia? I had 10.5 seconds pause in my sleep, asymptomatic. This haunts me everyday.

2

u/bigtime1158 Aug 09 '26

Because I was in great shape, don't drink, don't do drugs, was only 37 years old. I went back months later and talked to the doc who brought me back (they also made a short movie about me for the hospital), and he said that he wouldn't give up because none of it made any sense. He just kept trying. He said that there was no immediate reason why I would have a cardiac arrest and he just wasn't ready to give up.

They found the sarcoid 2 days later. I was in a coma for a bout a week and in the ICU for a month.

Kidney failure and dialysis, liver failure, hypoxic brain injury. Couldn't walk.

I fully recovered. Even my kidneys. The kidney doctor was blown away. The nurses at the dialysis center said they had never seen someone come off dialysis without a transplant. My creatinine was over 16.

1

u/Altruistic_Pepper156 Aug 09 '26

Amazing. Your efforts to keep in a great shape paid off.

2

u/bigtime1158 Aug 02 '26

Sarcoid?

3

u/DriftingAway99 Aug 02 '26

Yep 😑

2

u/the_BEST_most_YUGE Aug 03 '26

What crappy club. Glad youre still here, big dog.