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I Dare You to be Brave!

“You gain strength, courage, and confidence by every experience in which you stop to look fear in the face. You are able to say to yourself, `I lived through this horror. I can take the next thing that comes along.’ … If you fail anywhere along the line, it will take away your confidence. You must make yourself succeed every time. You must do the thing you think you cannot do.” – Eleanor Roosevelt

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Put Others First

kidney transplant

If I had died, my organs would have been donated to someone in need. I’ve always believed in the value of organ donation. I survived, but unfortunately my kidneys did not. My family was devastated as I was left with only 13% kidney function. My only hope was a transplant.

My 36-year old baby brother, with the support of his wife and two young daughters, stepped up as a living donor. To our joy all tests looked excellent. We excitedly prepared for a transplant at a top ranked hospital near home.

One day we got the call…but not a good one. It turns out Matt is 1% of the population with multiple renal arteries. Crazy, right?! That means he has 3 arteries to his left kidney and 4 to his right kidney instead of the usual 1. The transplant team felt the risk was too high and they turned us down. My whole family cried. Then we got creative….

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Shingles Hells

I thought I was so smart! Before getting a kidney transplant I researched vaccines that I needed. I discovered that the shingles vaccine recommended for everyone over age 60 is a live vaccine and not allowed after transplant. It took some convincing, but my insurance agreed to pay for the vaccine for a 48 year old. Woohoo! I got the shingles vaccine and proceeded to transplant feeling both safer and smarter.

Fast forward 10 months…. Turns out I don’t know everything. The shingles vaccine (known as zoster) while important is still only 51% effective and less so in immune compromised people such as organ transplant recipients – like me. After 4 days of brutal rib and back pain I woke up Monday morning with a garish rash wrapping in a wide swath around my ribs on the right side from spine to sternum. 24 hours later the tell-tale blisters were forming.

Fortunately I had a doctors appointment scheduled anyway – because I always have a doctors appointment scheduled somewhere – and I got started on antiviral medication, extra pain pills and lidocaine patches. My bedroom looks like a pharmacy! But I’ve got it under control and once again I felt smart. For a brief period.

After 24 hours of aggressively managing pain with pharmaceuticals and chocolate, I finally read the directions on the prescription lidocaine patches out of curiosity. I mean, how complicated could it be? Peel off the backing and stick the patch to your skin….’Do not use for more than 12 hours in a 24 hour period.’ Huh.

Husband: “How long have you been wearing the patches?”

Me: “24 hours. I’ve been in hellish pain!”

Husband: “Yeah, getting too much lidocaine in your system is bad.”

Me: “Why? Does it make you go numb inside?”

Husband stares blankly…..

It turns out that too much lidocaine absorbed through the skin can be fatal. I can just see the obituary now – she died from a sticker. I’m seriously rethinking feeling smart.

Maybe you’ve felt pretty smart sometimes. Maybe you’ve had your pride knocked down a peg or two. Much like shingles, it hurts. How we react makes all the difference. As long as we don’t get angry and defensive, these humbling lessons provide opportunities to add useful knowledge and humorous anecdotes to our toolkit. You never know when those tools could be a lifesaver for someone else. Wishing you many lessons and a full toolkit.

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Expect Delayes (yep)

I was certain my brother would be my kidney donor. Even though we didn’t yet have a surgery date we assumed it would move forward. He tested as a good match; it was just up to the surgeons to review. We cleared our calendars and prepared for hospitalization. I told at least a couple of dozen people that I would likely get a kidney transplant in August. I turned down work opportunities.

And then, my brother uncharacteristically showed up at my house in the middle of his workday. I just knew. We went to Jamba Juice and everything seemed happy until we were sitting on my deck in the sunshine and he said he had bad news. After months of tests and jumping through hoops the surgeon called Matt yesterday to say they aren’t comfortable with the level of risk associated with putting his kidney in my body. We’re unclear why. The problem could be my damaged anatomy or the complications of his multiple renal arteries – both of which we had been forewarned about. Mostly likely it’s a combination. We’re waiting for more information.

Meanwhile I’m trying to get my head around this disappointment. Before meeting up with my brother I was at a Toastmasters meeting sharing my ‘Living 5 Rules’. I assumed I would miss next week’s meeting because I would get a call saying we were moving forward with the transplant. I already knew that an Operating Room was available. On the way home road construction blocked my usual route. A large warning sign blinked – “EXPECT DELAYES” spelled just like that. I laughed while thinking, “Apparently there was a delay in 5th grade English!” All together I felt very smart.

I came home to learn that I should expect delays. Life is like that. We think we have all the answers. We’ve worked out the plan in our heads and scoff at the warning signs. We are so smart. But that doesn’t change the need to be flexible and EXPECT DELAYES – while keeping a sense of humor.