Going on Dialysis

Laura came and picked me up at work and we went to the doctor today. The appointment was at 1:30pm at Baptist Hospital. Just as we feared, it was suggested that we start getting ready for dialysis. Even though we knew this was coming and we tried to prepare for the news, it still hits you like a ton of bricks when you actually hear those words come out of the doctor’s mouth.

“You are the worst case of bad luck I have ever seen.”

Yup, she said it. Dr. O didn’t mean anything bad by that, she just can’t believe that it happened so fast. Everything that could go wrong did. The first medicine they gave Laura that was supposed to help ended up putting her in the hospital for 20 days (six of those in the ICU). Some people with FSGS end up with kidney failure within 10 years. In Laura’s case, she developed collapsing FSGS, the worst variant of FSGS and kidney failure happened within a year.

The next stage is dialysis. Apparently there are several ways to get dialyzed. Hemodialysis is what most of us are familiar with. This is where you get stuck with a needle and have to sit there for 3 hours while they cleanse your blood with a machine.

Then there is peritoneal dialysis. I didn’t know this even existed. Basically they stick a permanent tube in your abdomen and use it to put fluid in and take waste fluid out.

Hemodialysis requires them to create a fistula. This is where they graft a vein to an artery to not only give it aortic pressure, but also make it grow and make it stronger and suitable for a dialysis needle. Otherwise the vein would just collapse. Hemodialysis would require 6 weeks of training for both Laura and I. They teach you how to stick her with the needle. How to work and clean the machine and how to handle any emergency situations.

There really isn’t a good option, no matter how you slice it.  However, with four boys, PD may be the easiest for Laura because she could even do it herself if she needed to.

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Learning from Sam Berns

Okay, kidney disease sucks! We all knew that already, but I just wanted to get it out there and say it. Some days are better than others and some days just plain suck! On those really sucky days, the only thing Laura can think of is:

  • “Why did this happen to me?
  • “What if I would have tried a different medication?”
  • “Would I be this sick if I had taken been healthier and eaten healthier?”

Then you realize that things could be much worse. You see that there are people out there who are in worse situations, yet remain strong. For example, Sam Berns was a 17 year old that suffered from a disease that caused him to age prematurely called progeria. Unfortunately, he passed away in January 2014. However, he showed us that we have to focus on what we CAN do not on what we can’t do. We can all learn a great deal from him and how he lived his life.

In October 2013, Sam went on stage and gave a very uplifting Ted Talk called “My Philosophy for a Happy Life”. Here it is…

Thank you Sam for showing us how to be strong!

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