A letter from a PKD patient to her mom

Dear Mom,

Happy Birthday! You are 61! Wow! The first word that comes to mind is ‘hallelujah!’ With living cross-country from each other—from California to Pennsylvania—for seven years now, I am so grateful to be in Pennsylvania with you today to celebrate this monumental occasion. You are the oldest to live in our immediate family with PKD. You are breaking records and I am so proud of you and happy for you and our family. With the special bond that we share, I can’t fathom how hard it was for you to lose your mom when you were in your early 20s. She was 53 and tirelessly battled PKD until it unfortunately won. I regret that I didn’t get to meet the woman who created you. I sometimes imagine the three of us together. I know I would have loved her.

Before and after transplant: a Q&A with Nicole and Valen

As our friend and colleague Nicole Harr prepares for her upcoming kidney transplant, we arranged a Q&A between her and longtime blog contributor Valen Keefer to help her and others learn more about transplant preparation and life post-transplant:

MRI of Valen’s kidneys pre-nephrectomy

Nicole Harr: How did you prepare for your transplant surgery?
Valen Keefer: The months leading up to my transplant were different than most. I was too sick and my kidney function was not at the appropriate percentage for me to go on a transplant waiting list. I had a bilateral nephrectomy at 18 because my kidneys were gigantic and my cysts would not stop bleeding. If the kidneys weren’t removed, it would have been a fatal outcome.

I’m fine

“More than 80 percent of those with chronic, invisible illnesses downplay their true feelings to make others feel more at ease.” *

This statistic really hits home. Can you relate to this, too?

For those of us without a “PKD belly,” our disease is quite invisible. Living with epilepsy, a kidney transplant and chronic pain for me is mostly invisible, too. We personally endure our illnesses daily, both physically and mentally. Sometimes it feels easier not to talk about it or to not be honest with others and ourselves on how we are really doing.

To have or not to have kids

Some people dream of having kids from a young age; they know how many children they want and plan their pregnancies accordingly. Others may become pregnant unexpectedly or may choose an independent lifestyle with no children. Then there are people whose lives and health lead them down a path where childbearing isn’t possible or maybe just isn’t meant to be. I fall into the latter category and I’m at peace with this because it is ok to be different and not conform to a standard.

Finding support in your local community

Valen and her PKD family.

When friendships and connections unfold organically in life, we know they are meant to be. I believe we cross paths with people in life for a reason, but it may take time to understand why. However, not everything in life comes to us; we may need to reach out and seek what we are in need of, whether that is the support of like-minded people, inspiration or friendships from those who understand what it is like to live with PKD. I was reminded of all of this at our recent PKD Sacramento Chapter meeting for our upcoming Corks for a Cure fundraising event.

One more try

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Nurses search for a vein in Valen’s arm with an ultrasound machine.

A few months ago in November, I was getting prepped for a back injection procedure in hopes of relieving some of my chronic pain. An hour and a half passed with more than ten failed attempts to place an IV in my arm—that’s 90 minutes with several different nurses wrapping my arms in warm blankets, tying a tourniquet around my arm, looking for a vein, prepping the vein, inserting a needle in it, hoping to see blood return for a sign of success and instead seeing fluid build around my vein, indicating that it blew.

Celebrating you and 200 posts

Screen Shot 2017-01-11 at 4.49.21 PM“The pain taught me how to write and the writing taught me how to heal.”
-Harman Kaur

I am excited, honored and in awe that this is my 200th blog post. Today’s post is dedicated to you: all of my amazing supporters who have followed my journey here. From faithful readers who have been with me since the beginning to those who are reading this blog for the first time, from those of you who have shared beautiful comments to quiet readers whom I have yet to learn are reading my articles, today I celebrate you and how much your support has had a positive impact in my life.

The gift of giving

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Valen and her brother, Brandon, as kids

Giving comes in all forms. This holiday season, I can’t help but reflect on how much my parents always gave to make Christmas so special. My parents went all out with decorating, presents and making sure it was a magical and memorable day. The best gift they ever gave me, though, and still do to this day, is love.

Sometimes we receive gifts or give ones that can’t be wrapped, but their impact is immense and forever lasting, like my kidney transplant. I’ve never seen the kidney that my donor Sally gave me, but I feel and see its influence every single day.

No time for sadness

screen-shot-2016-11-08-at-3-55-01-pmNoah and I went back to the very spot we got married in Yosemite National Park to mark our 5-year wedding anniversary. When taking trips, I constantly hope that my health will cooperate and I won’t have any medical “hiccups” that will alter our plans. I’m sure other patients share the same sentiments. However, I will never live in a bubble—my desire to experience and soak in life as much as possible is far too strong for that.