Attitude is Everything: A Story of an ADPKD Warrior

Attitude as defined in the dictionary:  “A settled way of thinking or feeling about someone or something, typically one that is reflected in a person’s behavior.”

In my opinion, how one deals with a serious rare disease is dependent on their attitude. A person who deals with their disease (whatever it may be) with a negative attitude is likely to make their struggle (having a rare disease is a struggle) worse and more than likely complicate the efforts/treatments to address their condition.  Of course, I’m not able to cite research to back that up but in my situation with ADPKD, I have found that my positive attitude has helped me greatly fight back against ADPKD.

But, this is not about me. I would like to share the story of my youngest sister Liz as someone whose positive attitude kept her fighting to the very end. Her story is one of persistence, which I believe, goes hand in hand with a positive attitude.

Liz, a mother of three children and grandmother to six was diagnosed with ADPKD in her early 30s. It wasn’t a surprise since our mom and grandmother had both passed at early ages due to this silent-but-deadly disease.  But, as was my sister’s style, she decided early on to fight it and not give in to the disease.  She continued working and became a manager with her employer. She went through a divorce but found a man who I am honored to call my brother-in-law. In Ray, she found a person like herself that had a positive attitude toward living life.

She also found a soulmate who, despite her disease was willing to be with her through thick and thin. Liz’s positive attitude also allowed her to help boost our niece through her struggle with ADPKD/Liver disease. They were more like sisters than aunt and niece.

Together, they volunteered with the PKD Foundation to hold different fund-raising events in the Philadelphia area like “Walks for PKD”, casino nights, etc.  Just as important, they traveled to Washington D.C. to meet with their Congressional Representative to fight for addition government funding not only for PKD research but also for other serious kidney diseases.

When my sister finally had to be on dialysis, she became the cheerleader at her dialysis sessions helping young and older people to get through their sessions with her positive, go-getter attitude.  She continued working and being an awesome grandma for her grandkids.  In addition to assisting our niece, Bethie, as her health deteriorated.

Liz

She was hoping to have a transplant like me, but unfortunately was diagnosed with a serious pulmonary disease that would require a lung transplant prior to having a kidney transplant. Nevertheless, she didn’t give up, she continued her positive efforts with the PKD Foundation and she continued working until her health would not permit it.

Whenever I visited her, whether at home or in the hospital, she was always upbeat and kept her hope alive for the needed transplants.  Her husband Ray was a godsend, he would sneak up her favorite treats and ginger ale sodas, but more importantly, provided a strong presence for her, although his heart was breaking with pain.

 

 

Yes, my sister Liz defined the word attitude and had plenty of it and it was always positive. Unfortunately, she quietly passed away on October 18th, 2017 from the complications of her disease, but she never, ever gave up her positive attitude.

 

About the Author: Jim Stevens: 72 years young. Diagnosed with ADPKD at age 36.  Married to Maureen, my lovely wife of 48 years with 3 children and 5 grandkids. Have been on PD and HD. Two kidney transplants in 2001 and 2011.  Have lost my Grandmom, Mom, and two sisters to ADPKD; Lynne at 59 (2007) and Liz at 61 (2017).  A member of ReMend; a nonprofit whose charter is to provide mentoring for people with CKD or ESRD.  Currently living in West Chester, Pa.  with my wife and three dogs. My hope is to see one or more medications that address ADPKD and other serious kidney diseases in the next 3-5 years

 


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