A letter from a transplant recipient to her donor

Valen and her donor, Sally

Dear Sally,

Many of us only get one chance at life. A chance to grow up, dream big, find our purpose and fulfill it. Looking back, when I was a teenager, I did not have many dreams or plans for my future. I didn’t envision the man of my dreams, my perfect wedding, how many kids I wanted, or what my ideal house would look like. Maybe that was because I grew up with PKD and subconsciously knew I had a disease for which there is no cure. My health challenges shifted my focus and priorities to different things than most young people my age would desire.

Caring for the caregiver

Valen and her parents during a recent hospital stay

I believe health issues become harder to face as we age. As children, we don’t analyze and worry about things the same way we do as adults. When growing older, the focal point we have on ourselves broadens and opens our eyes to new perspectives on life. As we evolve, so does our stress level and concern for things and people. Looking back, I’m glad that I went through dialysis, the removal of both of my kidneys, and my transplant in my teens because I feel it was much easier to go through all that with a young mindset and my parents there to take care of me. One aspect of my health journey that I have learned about, from childhood to adulthood, is the importance of caring for the caregivers in our lives.

A good day

Valen with her infusion nurse, Michael Torres.

When you live with chronic health issues, the definition of a good day can be much simpler than what most people think. I have also learned that we cross paths with people for a reason. There are individuals in the medical field that are exceptional at their jobs and deserve to be recognized. I was fortunate to have a medical angel for a nurse during my recent sepsis episode in Pennsylvania who made every day I needed to get an infusion a good day.

The will to survive, part 2

Valen battling PKD

Valen in the hospital in York, Penn.

In a split second our world and our health can change dramatically. We can go from being healthy to severely ill, thinking we are fine while relaxing on the couch and then spiking a fever and dry-heaving while calling 911. This happened to me at the beginning of May, two days after I paid my respects to my grandmother in my birthplace of York, Penn.

The will to survive, part 1

Valen and her grandmother

I flew to my birthplace of York, Pa. at the beginning of May to say my goodbyes to my paternal grandmother, who passed on April 11, 2017, and to support my family. I stood in the mausoleum where my grandmother was laid to rest and read her name plate in disbelief – “Emily E. Cover 1923-2017.” It was hard to fathom that my grandmother was in a casket behind that nameplate. I couldn’t help but think to myself, “Why are you in there, Grandma?”

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.