On the Cusp of Dialysis, and I'm Starting To Feel It.....
I hope this message finds everyone in the best of health and happiness.
It's been a long time since I wrote a blog post here - Life has been crazy with work, family and everything in between.
My battle with PKD has taught me a very valuable lesson, that I haven't always been attuned to because my attention was always on reaching the next level (an infinite loop) -- and that is to make sure to reflect and appreciate each and every moment because life happens so quick and each day is truly a gift. This past month was really great - got to see a ton of family, had a daddy-daughter date at the Zoo, took Serena to one of her first plays, did an Easter egg hunt, and got to meet my new nephew Makai for the first time....just to name a few things :)
I also wanted to thank everyone that supported the GoFundMe campaign! It will certainly be put to good use as the PKD community just made an awesome achievement recently! The FDA has just approved a drug called Jynarque (https://pkdcure.org/jynarque/), which is the first treatment to slow the progression of the disease! Hopefully we can continue the campaign to further the innovation around finding a cure for this disease.
I recently had some blood work done, and my kidney function continues to decrease. I've been working hard on dieting and consistently working out to keep my energy levels up and maintain overall health -- but I still feel exhausted by 7pm each day. My doctor had also increased some of my medication which now is making my ankles and feet swell significantly each evening.
Going out and meeting up with friends/family at night can be challenging, because at the end of each day, my energy levels are low and my ankles/feet swell to the point where it's really uncomfortable/painful to walk around.
Despite these challenges in my life, I am determined to get through this. I am so grateful for my wife, family and friends - whom have been there every step of the way. And although I can't necessarily control the external factors around me, the one thing I do have full control over is myself and my own will to see this through.
As Gandhi has said:
"Strength does not come from physical capacity. It comes from an indomitable will"
Thank you so much to each and every one of you who has/will continue to help me through this.