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Ellie's Story

 

Gitelmans or Bartters aren't words I had ever heard before I met the man who became my second husband. But boy did I have a crash course the first time he needed hospital!!

 

The lack of information available is truly appalling. He was in his 30's when we met, and he was always led to believe that these disorders were male only and would cause premature death, among other things that were just nonsense. Sadly the false impression he had impacted his treatment, as well as making him reluctant to comply with meds. As his partner, later his wife, it was so difficult to see the damage caused to him on every admission.

 

The good admissions were the ones that ended after a few days with some missed sleep and sore arms from the constant needles. The bad ones were the ones that would haunt me for months after; the long nights at the hospital arguing, or educating the medics on how to treat him; the days sat by his bed acting as a filter to the doctors wide variety of theories, some good and some just dangerous.

 

Then, when I became sick of the contradictory information, I started to learn for myself which was a much harder job than I first imagined. It came to a point when I was more informed than most of the doctors who treated him during a crash. I would keep copies of blood results with me for the doubting Thomases who didn't believe someone could function with low levels. I would keep sachets of salt in my handbag for when the nurses would refuse to believe just how much sodium he needed daily. It was exhausting to be the one to plan for the medics to screw up as, even when I went home, I was sitting waiting for calls to tell me they had messed up when I left!!

 

Daily life was usually quite peaceful between hospital stays, but going away anywhere was something that created more stress than it solved half the time. Between packing enough meds and making sure there was a hospital nearby who could help if he needed it on top of the normal holiday bumps I was often left feeling like staying home alone would have been more of a break!!