You said it perfectly. However there's a problem when you cannot make someone else do anything they don't want to do. Loving someone that doesn't care about themself is heartbreaking. All I can do is die inside while she is dying right in front of me. I can't even tell her how angry I am or how selfish she has been to put her kids and me through this unbelievable grief that I certainly will be affected by the rest of my life.
January 8
Is this level of emergency care typical for PAH quality management?
It sounds like your friend experienced a serious PAH crisis requiring emergency intervention. This situation highlights why regular monitoring is so important with PAH.
People with PAH should typically see their healthcare provider every three to six Show Full Answer
Is this level of emergency care typical for PAH quality management?
It sounds like your friend experienced a serious PAH crisis requiring emergency intervention. This situation highlights why regular monitoring is so important with PAH.
People with PAH should typically see their healthcare provider every three to six months to have their lung function and overall health checked. Regular monitoring helps catch worsening symptoms before they become emergencies.
Warning signs that needed immediate attention included:
- Severe trouble breathing
- Significant fluid retention (edema extending to the chest)
- High blood pressure
These are signs of PAH progression that ideally would have been caught earlier with regular follow-up care. The delay between diagnosis and seeking treatment when symptoms worsened may have contributed to the severity of her crisis.
Quality PAH care involves proactive management rather than reactive emergency treatment. Regular appointments allow doctors to adjust medications, monitor disease progression through tests like echocardiograms and blood work, and prevent emergencies when possible.
It's concerning that there was a gap in her care after diagnosis. A myPHteam member shared: "When I got transferred to a new clinic, I had to consistently see them every two to three months because my condition was severe."
Your friend's situation underscores why consistent specialist care and open communication about symptoms are critical for managing PAH effectively.
January 7
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