Tag Archive for: NPH

Obamacare, Trumpcare, Personal Care

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By AB Plum


Ignorance is bliss.
Too many facts confuse us.
Time changes everything.
Sometimes, we know more than is good for us.
Life is a mystery; we can’t know everything.
Waiting and patience are virtues.

Lately, these platitudes and clichés have claimed too much prime real estate in my brain. And, I know why. (The Obamacare/Trumpcare debate plus some reflections about personal health care have made an impact).

My husband and I spent a lot of time over the past six months poring over different medical opinions before we and his docs detected a pattern:  Normal Pressure Hydrocephalus. (NPH). 

We then had to weigh treatment options (Do nothing.  Start with a spinal tap. Go for brain surgery. Wait and see; come back in three months). Next, what were the risks of the brain surgery? What was the best-case outcome? When would we see improvement? How painful was the procedure? What kind of recovery might we expect?

So we made the go-with-surgery decision—with a high degree of optimism—in December. The procedure, scheduled for February 6, was postponed. Time—and a very nasty and persistent sinus infection changed those best-laid plans. Patience became stretched. Waiting involved weekly lab tests and several x-rays to satisfy two doctors that the infection had responded to treatment. March 7, my husband went into OR asking “enough questions so I can do this myself the next time.”

Recovery brought its own challenges, and sometimes we longed for ignorance. But now, we are grateful for his ability to walk normally again. The hard part, as the cliché goes, is behind us. 

Now, we are trying to share the best of our experience with a long-time friend. Her husband has just been diagnosed with Idiopathic Thrombocytopenic Purpura (ITP). Wow! Is that a mouthful.

Like us with NPH, she’d never heard of ITP. The mountain of info is overwhelming. The possibility that the cause may not be found for his extremely low red platelet count is scary. The need to wait and see, to sit by a hospital bed patiently waiting for one more test result is exhausting. Googling every vaguely related keyword is tempting, but too often results in being confused by too many contradictions and not enough hard evidence. Going home without a definitive cause for the drop in red blood cells carries both relief and anxiety.

My husband and I had to wait almost a week to say with certainty that his surgery achieved our goal of normal walking. Our friends may have to wait much longer to see if this 5-day stay in the hospital is a one-time occurrence or the first of many stays.

In their case, the cliché, time will tell, keeps popping up. Right now, I’m offering a different heartfelt cliché: Be grateful for every moment and get back to your normal life as quickly—and safely—as possible.

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AB Plum lives and writes in Silicon Valley, where amazing innovations in medical practice and technology meet.


Foresight and Hindsight

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Aunt Edie was a hypochondriac.

The wife of my father’s older brother, Aunt Edie earned her reputation in my large, extended family of aunts, uncles, grandparents, first cousins, in-laws and outlaws. No matter the clan-gathering occasion, no one asked her how she was. Because . . .


Because she could bore you to death with her aches and pains in two minutes flat. 


Like a spider, she never let her victim escape in less than half an hour’s recitation about her medications, her insomnia, her indigestion, her aching feet, her hair loss, an undiagnosed medical condition so rare it belonged in medical books.  


A hang nail, so the gossip went, would send her to the hospital in a flash.


In my nuclear family, my parents and five siblings rarely admitted to feeling unwell. Going to the doctor cost money we didn’t have, so we went for required vaccinations and for visits to treat the scary convulsions my youngest brother began having in early infancy—and outgrew by the time he was toddling. (This condition was not one mentioned outside the immediate family. We were not Aunt Edie. We kept stiff upper lips).

When my two children were diagnosed as adolescents with Type I Diabetes, I  fought the instinct to keep the disease a secret. But because I didn’t want my kids to feel ashamed or guilty—or succumb to the temptation to deny their diagnosis—I tried to speak openly with them, friends, and family about their treatment.

Sometimes my stiff upper lip wobbled, but I figured crying was allowed.

My husband grew up in a family not too dissimilar from mine regarding illness and admitting illnesses. So, for the first thirty years of our marriage, he rarely acknowledged even a sniffle. When he was diagnosed with TIAs, we consulted a good neurologist, followed his common sense and adjusted, taking in stride fifteen years later the need for three cardiac stents.

Now, we’re facing the likelihood of a cranial shunt to rebalance the fluid surrounding my husband’s brain. At first, like Aunt Edie, my husband told everyone he met—or so it seemed—about NPH (Normal Pressure Hydrocephalus). Friends and family listened, asked intelligent questions, and offered support. I feel very grateful that we live in an age when opening up about health concerns has become more “normal.”

In
hindsight, I wish I’d had the foresight to benefit from current insights:

 

  • Not everyone is fortunate enough to enjoy good health throughout life.
  • Listen to others whose misfortunate is to be sick for short or long periods.
  • Aunt Edie, we ‘done’ you wrong!

How—about you? Are you a parent who doesn’t want to worry the kids? Do your adult kids let you know after the fact about a serious illness affecting them or their spouse and kids? I’d love to hear your thoughts on this topic.