Friday, May 17, 2013

Day 5: The Other Medical Condition

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

I was going to write an entirely different post then the one I'm writing today. But this morning, I checked my facebook,checking on a friend that I haven't talked to in some time...and the condolences were there, scrolling down her facebook page.

She died one year ago today. I am deeply saddened.
I could delve into the myriad of other chronic diseases, discuss the bad and the not-so-rough ones. I'm not going to do that. I'm going to talk about that disease, that the world needs to know about, and may that have ultimately claimed her life.

Her name was Tess, and we met on an online message board for people with Bartter's Syndrome.Bartter's Syndrome, as you may or may not know, is an inherited kidney condition in which the ion (potassium, magnesium) reabsorbing parts of the kidney do not function correctly and dump out these particles back into the urine. This is a problem, because your body needs to maintain a constant level of these to function correctly, and if blood levels of them drop too low you can have seizures, heart rhythm disturbances, and possibly a heart attack. (as well as all over twitches and muscle weakness)Depending on just how screwed up those parts of the kidneys are, you may need massive IV infusions of magnesium or potassium. (if you cannot take in enough orally) Also, because magnesium and potassium strongly affect sodium and calcium, levels of those may be impacted as well. In rare instances, it may lead to kidney failure. Tess had had Bartter's Syndrome from birth,and was on pretty significant IV doses of various electrolytes. I'd been diagnosed at the age of 23, and had had a fairly stable time of it up until a hospitalization for an intesseception (in 2008), and then required massive doses of IV magnesium(in the beginning, 2-3x a week. I had no life.) She was a wealth of knowledge about the disease, and sent me several hundred vials of magnesium/saline solution, helped me figure out how to use an insulin pump to administer it, helped me find a competent nephrologist.(so I could stop having to get it IV) And then something strange happened, she was diagnosed with type 1 diabetes. (as an adult, in her late 20's) She'd had to deal with her chronic disease all her life...she knew what Bartter's Syndrome was like. I'd had diabetes for 11 years, I knew what that was like. Bartter's Syndrome is extremely rare, something like 1/million people. Type 1 diabetes= not so rare, but still, rare. (if you were going to get diabetes, you'd be more likely to get type 2)
Which made us probably the only two people on earth to have both. And she lived just a state away. I regret never getting to meet her, I'll always regret that. She was so kind and helpful and med-savvy. (I found out from her obituary that she'd been in RN school, before having to drop out.) She asked me questions about the insulin pump about diabetes and insulin pumps and eventually got an insulin pump.

People live with Bartter's Syndrome, successfully. People live and thrive and have careers and babies and travel the world with this disease. For me, its never really been the constant, daily, life-threatening threat (it has been once or twice, but not consistently)...and it may have actually saved my life when I was diagnosed with diabetes.(as metabolic alkalosis balances out metabolic acidosis). It allows me to eat as much salt as I want, and it doesn't interfere with day-to-day life. (all I have to do at this point, is to get an IV infusion once a month) I'd defiantly switch my diabetes for just this disease.But other people aren't so lucky with it. Some people have a rockier course with a disease, while some just sail on through.

RIP, friend.

1 comment:

Scott K. Johnson said...

Wow - what a crazy coincidence! I'm so sorry that you've lost your friend. Even this short blog post is a pretty great tribute to her and to the connection you two had.