An improvised life

I was discharged Friday after ten days in the hospital. Things finally got sorted out and I got a more appropriate diagnosis and treatment, but it is disheartening to find out just how much advocacy, knowledge and persistence it takes to get proper medical care. Having my father with me was invaluable and I am so grateful for his expertise and diligence.  I am also grateful for Nu, a longtime friend of my sister-in-law’s who looked after Alder with caring and love during my absence. A neighbor told me her son asked Alder who Nu was and he replied, “She’s a Thai person and she loves me.” With the routine of kindergarten, nurture from Nu, nightly reading with my father, and playtime with local friends and neighbors, Alder continued to thrive while I was in the hospital.     I was diagnosed with pericarditis, or inflammation of the sac around the heart. I’m not sure why I got it – it was probably something viral and I may be more susceptible to such things due ...

Hello friends, Things have taken a turn for the mysterious with my health so I thought I’d share some facts about the current state of affairs. I’ve been diagnosed with pericardial effusion, or fluid/inflammation in the sac around the heart. I was admitted to Swedish hospital last Wednesday after several days of severe chest pain. After initial misdiagnosis and treatment, I’m being treated with strong anti-inflammatories and continuous IV saline, and my heart is being monitored 24/7 by EKG. My follow-up echocardiogram today shows no real change in fluid levels, so we are contemplating the next step. That will probably either be to tap the fluid by ultrasound-guided needle aspiration, or a more invasive surgery to drain the fluid and remove a “window” of my pericardial sac. Surgery brings more risk and more recovery time, but would yield more diagnostic information and might help prevent recurrence. Some seemingly unrelated complications arose at the same time, inc...

I met a woman a few years ago who had suffered a severe concussion that resulted in brain injury. About six months after her injury, she updated friends on her condition. Her window of cognitive capacity had increased to four hours; after that, she said, she was physically and mentally wiped out. A previously busy and involved working mother, she now rested most of the time, and had to make constant tradeoffs. For example, if she balanced her checkbook or called a friend, would she be able to manage the next part of her day?   “My doctor describes my cognitive capacity like a gas tank,” she wrote. “Mine is smaller than it used to be, or it burns up more gas to do the same tasks I used to be able to do several of.” I was almost 18 months out from John’s death when I received her update, and I recognized myself in her description. I was fighting to maintain my involvement in the world around me, but felt increasingly unable to give my children what they needed, un...