Don't be afraid to make waves

January 15, 2017

Please forgive me for getting really personal this week but I've been dealing with a challenging situation for a couple of months now and it’s seriously getting under my skin. In October my husband Don was told he had a 2+ centimeter kidney stone when he went to the doctor complaining of an intermittent yet annoying "stitch in his side" that simply wouldn't go away. LONG story short, he eventually had it surgically removed a couple of days after Thanksgiving and this past Monday he was FINALLY given  a few rather confusing guidelines on changes he should make to his diet.

Now please forgive me again for using this blog as an opportunity to rant (at least a bit): as many of you know for years now I’ve had a suspicion that there's a great deal of money riding on us NOT being healthy and the information Don was given this week by his highly qualified Urologist is, IMHO, just one more bit of evidence I’m right! Here’s why…

Close to 25 years ago my first husband Jack was diagnosed with End-Stage Renal (Kidney) Disease which is a scientific way of saying “you’re dying of kidney disease…it’s just a matter of time.” One of the bright spots of the situation, though, was the Social Worker who was assigned to his case: her area of expertise was dealing with dialysis and transplant patients plus their families and she gave us TONS information on dietary restrictions, recipes, and even invited us to join a support group she facilitated so we could offer/get support from other patients and families in the same boat. Suddenly everything really seemed a lot less scary and complicated (in fact I often think that learning to surf around Jack's illness was my first step on a long path towards becoming a health & wellness professional.)

Now fast forward to today (and a little closer to the point I’m actually trying to make): End-Stage Renal Disease is far less common than kidney stones.* More importantly, even if you make all kinds of healthy post-kidney-stone lifestyle changes, once you’ve had a kidney stone the likelihood that you'll get another is high. And worst of all (and here's where my conspiracy theory really shows up!), I bet if you go on the internet and look up 15-20 really credible sources of medical information you’ll get 15-20 DIFFERENT lists of healthy post-kidney-stone lifestyle changes. Let's put it this way: I advise people on nutrition for a living and even I'm feeling confused about exactly how to shop and cook for Don from here on out!!!

OK I'm done ranting (and FINALLY landing the plane): Don't ever be afraid to put your needs and the needs of the people you love at the top of the list when dealing with any medical situations in which you feel like you're not getting good information. In other words, DON'T BE AFRAID TO MAKE WAVES (I know I'll be making a few at least in the next few weeks!!!)

*The lifetime risk of kidney stones is about 19% in men and 9% in women (https://www.kidney.org/atoz/content/kidneystones) yet only 1% of Americans are currently living with End Stage Renal Disease (https://pharm.ucsf.edu/kidney/need/statistics.)

Let me be clear that I realize the STAGGERING statistics surrounding all aspects of kidney health in this country is a MUCH larger conversation and I’ve simply scratched at the surface of just one small facet of the big picture! I’d be happy to discuss anything related to ESRD and kidney transplantation with anyone at anytime because in 1993 I donated a kidney and for a number of years after that I was a speaker for the Gift of Life Donor Program in Philadelphia (one of the oldest and largest organ procurement organizations in the United States)…in short, I HAVE REALLY BEEN THERE!!!

All that being said, I hope all readers understand my main professional goal is always to help others PREVENT disease…today’s blog is simply just one more aspect of that message!

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