My name is Liz. I am a 40-something mom who has learned a lot in life and feel compelled to share. I got inspired to start blogging awhile ago. Over three years ago, I lost a good friend very suddenly. Gina was only two months older than I was when she suddenly collapsed and died. She was alone at the time, and we think now that she was dead for about two days before she was found. She was 41 and was staying at her parents' summer home in Delaware (although it was October then). Her father was doing a lot of remodeling of their house in Baltimore, and it was just easier for her to stay in Delaware while he worked on the other house. Her parents had planned to surprise her with a completely redecorated bedroom when she got back, and because she was disabled and unable to drive, they checked on her every weekend.
She'd been having problems with her asthma for several months, and they were concerned about having her stay alone, but she apparently insisted she'd be okay. We talked on the phone--and ran up horrendous bills, which her parents paid in full without complaint--chatted on the computer, and kept in constant touch.
Then I tried calling her one day, and she didn't pick up. Surprised, I figured she'd call right back, as she always did. When she didn't, I thought she might have gone back to the hospital and that I'd hear from her in a few days.
Then I got an e-mail from her account with her name in the "from" and "subject" lines. I thought this was odd and was immediately concerned...and then stunned and distraught as I read from her brother that she'd been found dead, next to her bed, holding her nebulizer.
Gina and I had become friends because of some health issues we shared. I don't have asthma, but she and I both had hydrocephalus and epilepsy and ran an online support group together.
Hydrocephalus. What a word! How does it roll so easily off my fingertips? I know it's a big word, and most people have no clue how to say it or what it means. This is the proper name for the chronic buildup of fluid inside the brain. There is no cure, only treatment, and the treatment is surgical. The shunt--a thin, flexible catheter that drains the fluid constantly--is a man-made device that breaks down over time and needs to be periodically replaced, in whole or in part. One end of the tube is inserted into the ventricle (the pathway through which the fluid would normally circulate) and probed down into the peritoneal cavity near the stomach so the fluid can drain and is absorbed into the bloodstream. Both Gina and I had been diagnosed with "hydro," as we called it, when we were infants, and we had both had about a half dozen shunt surgeries. I would later learn that she had a very large porencephalic cyst. The cyst consumed about a third of the space on her CT scans and MRIs.
While she was doing well with her hydro, Gina continued to have problems with her asthma and spinal stenosis, which is a constriction of the spinal cord. Her epilepsy was also an ongoing issue. We have since learned that her death resulted from a "complete simultaneous shutdown of [her major] systems." Even now, I have questions, and I know they'll probably never be answered, but I want the world to know she existed and carry on the advocacy work she started. I hope I can make her proud.
You do great things everyday for others with hydrocephalus. You have been here for me since 2003 when I first found out I had this condition and had had it for 20 years. You helped me to find different groups and sites to link to that is why I blog today to share the information I have. Plus I don't want another person going through what I have. I rather this be me than someone else.
ReplyDeleteI remember when Gina died. It was such a shock... I still can't believe she is gone :(
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