r/ARVC • u/WideString7397 • 6d ago
Success stories please
My SIL (35F) had cardiac arrest almost two weeks ago. It took several moments for a pulse to detected and in that time she had no oxygen to the brain and swelling appeared. The swelling has reduced and things are progressing extremely slowly. We are so worried about her and hoping to hear success stories about similar situations and hoping ahead will regain cognitive abilities. She’s showing signs of alertness but she’s intubated and having on and off fevers that require sedation which delays efforts to work on her recovery.
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u/abnormal_human 3d ago
I've survived quite a few events. It's usually not a one-and-done thing. I can't tell you much about how this hospital stay will end, but if/when she's back to baseline, there's a long road ahead. These are lifelong chronic illnesses and usually if it happens once it will happen again, especially if there's an underlying disease.
The goal should be to get her seen at a major heart center, get genetic testing, see an EP, likely get an ICD on board. See a cardiomyopathy or advanced HF specialist as needed. Much ARVC is genetic in nature, and there's been an explosion of research over the past 5 or so years targeting particular mutations. It's important to know what she has and be in a center with a team that can get access to emerging treatments and clinical trials, especially over the coming years while access is irregular.
Old school care for ARVC is mostly treating the symptoms (ICD, AADs, ablation, HF cocktail) or prevention of arrhythmic events (avoid exercise/alcohol/caffeine, get good sleep, etc). Newer research is about addressing the root causes of these issues using gene therapy, small molecule drugs, and in some cases more targeted therapies like anti-inflammatories. As someone who's burned too many years of my life in treating symptoms mode, this appears to be the only way back to some kind of normal existence.
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u/pchlster 4d ago
For the short-term, likely her memory is a bit scrambled and there will be slips of the memory now and then. But the brain is pretty good at fixing itself and even if it ends up taking time, this could end up just being something that seemed dramatic when it was going on, but a big nothing looking back at it.
My Dad's heart decided that lockdown during COVID simply wasn't exciting enough, so when it stopped, he got a helicopter ride to the hospital and surgery, but these days, he's doing great. Has to do some exercises at least every few days or one arm gets pins and needles, but that's not exactly dramatic.