PKD Connection Blog

Voices of PKD

Aneurysms: The silent destroyers, part 2

Rob Herman as a child after his mothers diagnosis.

Following my mother’s episode and subsequent diagnosis as a “vegetable,” life was continuing in the Herman household. We kids were no longer kids. I was 13 and wanting my own life, like any know-it-all teenager. My mom was getting “better,” but also more frustrated with herself. Someone gave her a card with a cute bunny in it. When she tried to read the card and couldn’t, she became very mad at herself. She said, “That’s how I feel, like a ‘dumb bunny!’” From that day forward, she would berate herself by calling herself a “dumb bunny.” It ripped me up to hear that. We tried to change her association with the phrase and make it into a cute, lovable bunny. If someone you love (including yourself) is going through their own difficulties, please encourage them to stay strong and to Never Give In!

Rob’s father with his granddaughter.

My dad never gave in. My dad was so incredibly busy, which forced us kids to learn to be very self-sufficient. But how does one man work full time, care for five kids (yes, I counted my mom as a (big) kid at that point), handle all the doctor appointments, medications, bills, etc., and still try to take care of himself? That is the true definition of a “man” and a “father” to me.

Four years into my mom’s aneurysm recovery, my dad was diagnosed with foot cancer! Surgeons were forced to remove the skin from the entire top of his right foot as part of the treatment.

Despite all these struggles, no one in our family ever asked, “Why us, Lord?” We trusted in our faith, trusted in each other, and we did whatever it took. We lived by the unspoken motto: Never Give In! (I still live by that motto today. As you’ll learn later, I would need it… often.) In fact, almost 10 years to the day since her devastating brain hemorrhage, my mom passed her driver’s test! The state of California had once again deemed her competent enough to drive on the crazy streets of Southern California! This was truly a milestone in her recovery.

Rob’s parents.

At that point, the new clinical diagnosis from all her doctors, and anyone else, was unanimous: Patricia Ann Herman was no longer a “vegetable.” She was a walking, talking, highly functioning “miracle.”

The human spirit itself is miraculous and can accomplish incredible feats. If you have your own “miracle” story, please share it with me in the comments below. I pray, no matter what struggle you may be facing, you Never Give In!

Comments

  1. Mary Ranz says:

    My own mom suffered a brain aneurysm associated with PKD a few days after her 63rd birthday. While PKD runs deep in our family, she was the first with a brain aneurysm so no screening had ever been done. Unfortunately, she had no warning but a severe headache and was quickly gone to heaven. She was my best friend and the best mom anyone could ever ask for. My sister and I both have PKD and are screened regularly now due to what she experienced. She entered heaven 7 years ago this June and will forever be in our hearts. Her name was Janice Pittard Sasser.

    1. Hi Mary,
      Thank you very much for sharing your story about your mom. The best mom, and a best friend are great titles, and she appreciates (from Heaven) you honoring her!
      It is so tough to watch a mom go through an aneurysm at any age. But if you and I can help just one person get screened and catch an aneurysm before it’s too late, our mom’s deaths will NOT be in vain.
      Blessings to you, your sister, and Janice Pittard Sasser.
      Rob P. Herman

  2. Robert J Herman says:

    As Rob’s father I can’t be more proud of him and thank God and his Guardian Angel for being there at his side thru all that he has endured. There were times I’m sure when he thought, wow, enough already and then wham! another crisis. He truly is a remarkable man.

  3. I learned “Never Give In!” from you Dad!
    Thanks again for everything!!
    Your son, Rob

  4. Rebecca Wilkin says:

    I thank you for your foundation, for your website, and for the information. I am very sad to tell you that my younger brother, Jim, age 41, father of 4, passed away on June 30, 2018. He had PKD. I did not know a lot about it. He is the youngest of 8 children, and the first to pass away. He was a hard working guy who loved his family and he did not complain about being sick. We are all so sad and wonder what we should have done. We all expected him to someday need a kidney, but we did not expect him to die at 41. We are going to send away for the report from the medical examiner. Thank you for your information on this disease.

    1. Rob Herman says:

      Hi Rebecca,
      Please know that we are all sad with you. Since he had PKD and is/was a father of 4, chances are his children could have PKD. If they don’t have any symptoms, it is still important to be educated about what to look out for. My now 13 year old daughter has PKD – from me – and had brain surgery when she was 5 for a brain cyst.
      Know we are all praying for you and your family, and we will do what we can to help.
      Remember my family’s motto: Never Give In! (N.G.I.)
      Rob Herman

  5. Terry Watnick says:

    We are researchers at the University of Maryland School of Medicine and at Yale School of Medicine. We are interested in understanding the genetic basis for aneurysms in PKD and why some people with PKD get aneurysms and others don’t. We are collecting blood/DNA samples from people with PKD who have and aneurysm. You don’t have to come in person. If you are interested in learning more about this study please contact us: Terry Watnick (twatnick@som.umaryland.edu) or Ashima Gulati ashima.gulati@yale.edu.
    Thank you!
    Terry and Ashima

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