PKD Connection Blog

Voices of PKD

Aneurysms: The silent destroyers, part 1

Rob Herman

My name is Robert Patrick Herman, proudly named after my mom and dad. I was brought into the world on Friday, August 13, literally in the middle of the Los Angeles riots of 1965. My mom always said it was a party for me that got out of hand! So it makes sense that if I had a crazy entrance, then the rest of my life might just be pretty crazy as well. So far, it has lived up to its billing, but you can be the judge of that over the next several weeks as I share with you a little about my incredible PKD life.

On October 2, 1974, we moved into our beautiful new home. Just ten days later, my mom was screaming in pain as my dad took her to the emergency room. She had a massive cerebral hemorrhage caused by her polycystic kidney disease (PKD). I had just turned 9 years old.

Patricia Herman

After flatlining twice on the operating table, my mom’s doctors gave their official clinical diagnosis: Patricia Ann Herman would be a “vegetable” for the rest of her life, with extremely limited motor skills, vocabulary, and memory. Oh, and for good measure, my mom didn’t even know who me and my three siblings were. My mom did not even know my name!

Welcome to an entirely different life; a life of defying the odds by trying to teach my mom how to be a functioning person all over again. The thought of putting her into some type of care facility never crossed my dad’s mind. In fact, it was his idea to put word signs on everything in the house: door, cup, refrigerator, plate, cupboard, window, sink, on and on. We worked diligently to try to teach her how to read, write, think, remember, communicate, everything. Day after day, month after month, for years this went on, as I also attempted to grow up.

Rob as a child.

I went to school late so I was home with my mom as my dad went to work. Before he left, my dad would warn me of the possibility of my mom having “mini seizures.” I will never forget watching my mom lying on her side on the floor of our living room, suffering through an uncontrollable seizure, as I tried to hold her so she wouldn’t hurt herself. It’s not something any child should ever have to see their parent go through. I was 12 years old, alone and so scared.

If you, or someone you know, has had an aneurysm – especially from PKD, please feel free to share your experiences, both physical and emotional, in the comments below. It can be very therapeutic.

Also, please get checked regularly for aneurysms if you have PKD. In an upcoming post, I will explain from my experience why this is so very important to prevent or stop these silent destroyers.

Learn more about aneurysms on the PKD Foundation website.

Comments

  1. Mary Nixon says:

    Rob, I understand. I was 10 when my Dad left for work. He didn’t come home. He was at his place of business when his aneurysm burst. He passed away at the hospital. My life was changed forever.

    1. Rob Herman says:

      Sorry for your lost Mary. Three years ago my sister did that. She went to lunch with my dad and his (new) wife, went back to work, and died before she hit the ground. And she had recently been checked for aneurysms!
      Never Give In!

  2. Karen Kessler says:

    My father had PKD, was on hemo dialysis for 15 years until he died from a brain aneurysm that burst. I was away at college so i didn’t witness the emergency at home, 911 call, EMT arrival, ambulance ride, and the initial emergency room intake, but the heartbreak of losing someone because of the complications from PKD still affects me decades later. I also have PKD and I’m grateful to have more hope for treatment than my other family members with PKD had (they are all gone). I’m also grateful for the PKD Foundation!!

  3. Marilyn Bright says:

    My brother died from aneurysm. I have pkd. I was checked for aneurysm. They found 2 one on right temple one on left temple. They clamped the one on right off. The left one hasn’t grown any. I get MRA done once a year to check it. My grandpa & dad ,brother sister passed away from PKD. I have it in stage4 .daughter has it She won’t go to Dr.

    1. Rob Herman says:

      Hi Marilyn,
      I am so sorry for your losses. I am always shocked at the generational impact of our disease. As you’ll learn in my later blogs, we absolutely understand the need for continuous and regular check-ups. We’ll pray your positive MRA results, and for strength to fight the good fight against stage 4.
      With regards to your daughter, I never wanted to go to the doctor either, especially if I felt good. (Don’t tell her that! LOL)
      Never Give in! Rob

  4. Rose says:

    I have PKD, long family history. Last January I was in ER for uti, was admitted second day I had the worst headache ever, when dr made rounds, nurse had told her about my night. She ordered MRI, waited another day to get results, and was told i had an aneurysm. Ordered CT. Was discharged and told i should follow up with Neurosurgeon. For three weeks i went on with normal life, working, driving..Finally on the 30th of January, i got to see dr in Baltimore. He took one look at my scans and admitted me. Next day 8 hour surgery to clamp aneurysm. Said i was very lucky, because it was leaking, if it would of ruptured, it would of killed me.
    So as a 52 yr old with PKD, stage 3, listen to body, be your own advocate.
    Thanks for sharing Rob…

    1. Rob Herman says:

      Hello Rose,
      Thank you for sharing that part of your story with me. As a 52 yr old, I can relate to the frustration, and relief, you must have felt going through all of that. Listening to our body is SO important. I share some of my long, complicated story in later blogs, but mostly in my book, “Naked in the Middle of a Tornado”.
      My motto will always be: Never Give In! Feel free to use it.
      My family will pray for you. Rob

  5. Lori says:

    Our father was waiting for dialysis in the Veteran’s hospital in Seattle when he appeared to have ‘fallen asleep’. They revived him but he was brain dead. An autopsy was not done. We believe it was brain aneurysm. He was only 59 and not in good shape. That was 1985, he had been wounded in WWII and they had to remove his left kidney because of the shrapnel. So that didn’t help one bit. We were just happy he went peacefully. All of us kids got the disease, two of us left and we have transplants. Both of my brother’s children have PKD, one has both kidneys out and is waiting for a transplant. So far one of my oldest brother’s children has it (he is diseased, also suddenly). We can only hope some or all of their children don’t have it. I donate as often as possible to the PKD Foundation for finding a cure or helping family and people who have it.

    1. Rob Herman says:

      Hi Lori,
      Thank you so much for your comments about your father, a true HERO. Anyone who defends are great country is a hero to me and my family.
      Of course, passing the problems down to the next generation is a favorite of PKD… I hate that!
      And THANK YOU for donating. We donate time and money as much as possible. Also, all the proceeds from my book, “Naked in the Middle of a Tornado”, go to the PKD Foundation. The foreword was written by Dr. William Bennett, one of the founders of the PKD Foundation!
      Never Give In! Rob

  6. mary says:

    Should they have annual brain scans?

    1. Rob Herman says:

      Hi Mary,
      I’m no doctor but I’ve seen enough of them to know it should be “regularly”. I know, “terrible answer”. My sister should have been checked. My daughter still has her brain cyst but it is stable so doctors have said she only needs to checked if her symptoms come back.
      I am having an MRI tomorrow because previous MRIs have shown I have suffered a few mini strokes, and some other weird – my word – issues.
      We all need to please allow the doctors to make these important personal decisions.

  7. Rob Herman says:

    Thank you Karen for sharing. Yes, we never really get over any loss of human life. But we are in this together… so none of us are NOT alone.
    Never Give In! Rob

  8. Wayne Grossman says:

    I am 74 and had kidney failure from PKD In 1992 and a transplant in 1996. 6 years ago I had a mra to screen for possible cerebral aneurysm. I had no symptoms. I did have one. It was surgically clipped at NY Presbyterian with no complications.
    Full recovery took about 2 weeks.

    A screening again last year revealed no new aneurysms.

    1. Rob Herman says:

      Amen Wayne! I actually have an MRI tomorrow because in previous tests they revealed I’ve had a few mini strokes but nothing could be done because of the shape I’ve been in over the last few years.
      You are in my family’s prayers Wayne.

  9. Rachel says:

    My mom had PKD, but she had other complications, reading this makes me realize she was lucky to make it to almost 68..she left us almost a year ago, she would have had her transplant 15 years on 2/19/2018, but she got lymphoma from the immune system being supressed all those years..she was in stage 3 of the transplant..I felt like she wondered sometimes if she would live a longer life, beyond this decade, but for the most part she acted like she was on borrowed time..as far as I know, deceased donor kidneys last 15-16 years, the info I read online for the era she got her transplant it said up to 17 years..so she had maybe 2.5 years left..she would have been 70 by then..my heart goes out to everyone who is affected by PKD..

    1. Rob Herman says:

      Hi Rachel,
      Thank you for sharing your story with me. I get inspired by everyone’s stories; they make me better, they push me to be better – no matter what. I am on my 9th year of a deceased donor kidney transplant, and yes I have days when I wonder if I am on borrowed time (more than normal).
      You didn’t mention if you have PKD. If you do, let me know how you’re doing. If not, thank God, and thank you for being involved in the cause! Rob

  10. Rachel says:

    Hello Rob
    No thank god I don’t have PKD, I was tested many years ago..
    I admire my mom for enduring everything she went thru, she had many good years, she started talking about dialysis and going on the transplant list in 1994, went to Paris in 1995 a year before going on dialysis, a few years before that she went to London..we went on a few trips together in the us and Canada..I am grateful for the memories..finally in 2001 she went on the list, got the transplant in less than 2 years..she started talking about being on borrowed time in 2014, I think she was worried about heart failure at that time, which she had for almost 7.5 years, last year she told me she would be here for 2 years or less in so many words..
    Wishing you many more years of health, it’s great that people can get transplants, her grandmother died in 1930, she was told..she believed that was where the PKD came from..my mom was adopted and didn’t meet her mother until 1988, her birth mother said it didn’t come from her, but it did, some cousins I’ve never met from that side have PKD, they are young right now..

    1. Rob Herman says:

      Thank you Rachel again for sharing even more. And we all thank you for staying involved with PKD though you do not have it – which is fantastic news!
      I want to continue to raise awareness of PKD, but also for organ donation, and the struggles of dialysis. My book just got put on this site under Resources, and on Amazon. And I am working on the screenplay… because my motto is:
      NEVER GIVE IN! Rob
      Also, more blogs coming!

  11. Rachel says:

    Thank you Rob, my mom was told by a friend she should write a book she never did, she thought her life wasn’t interesting enough, she had written in a journal about maybe trying to write it, her friend thinks I should..
    Your story is inspiring, I’d be interested in learning more about your book..

    1. Rob Herman says:

      Hi Rachel,
      My book: “Naked in the Middle of a Tornado: The True Story of One Family’s Unbelievable Fight Against it All” in available on this site under “Great Reads”. (Not necessarily indicative of my book! LOL)
      I just started listing somethings that had happened in my lifetime so my 2 girls would know. (My dad did the same for us kids.) But the list kept getting longer and longer, and then you have a few, or two hundred, pictures…
      Writing is if nothing else – therapeutic!
      P.S. Also check out http://www.TheLifeWriter.com for help writing.

  12. Beatrice says:

    My mom and I both have pkd. In the year 2012, during my little brothers graduation she fainted and then rushed to the hospital. In the hospital she had a bursted aneurysm. She was awake and moving talking eating etc. A month after, Sutter east bay casteo valley then saw she had another one. Which she had open skull surgery for that. She had gotten one clipped and one operated. I was devastated. I’m an afraid for my life as I’m scared I have the same thing. During that time I got an MRI was well to make sure I didn’t have anything growing. In 2012 I didn’t have anything. But I want to get checked and Kaiser hesitates. After all of this mom has two more aneurysms that she’s being checked for every two years. I’m agraid and I need a cure now. I’m 27 years and want a life qnd a family. Prayers for my family please.

    1. Rob Herman says:

      Hi Beatrice,
      I am sorry for your story and what your mom and all of you have been through. I actually have another MRI tomorrow because I have had a few mini strokes in the passed few years so time to see what’s up.
      My daughter is now 13, has PKD from me, and has already had brain surgery at age 5. My advice to her is to live her life on her terms – not the disease. We educate her, without overwhelming her. And I do the same for myself – I only want to know the basics, and not all the possibly scary details because – for me- they don’t matter.
      Take in what you are comfortable with and know when you are being overwhelmed. And make sure you find doctors that are your advocates!
      Oh, and live by our motto: Never Give In! (N.G.I.)
      You are absolutely in our prayers. Email me anytime, and check out my book, “Naked in the Middle of a Tornado”, available of this website under “Great Reads”, or Amazon.

  13. Alexis Denny says:

    Hello everyone! This is a great conversation and one that is of interest to researchers at the University of Maryland School of Medicine and at Yale School of Medicine. These researchers are interested in understanding the genetic basis for aneurysms in PKD and why some people with PKD get aneurysms and others don’t. To do this, they are collecting blood/DNA samples from people with PKD who have an aneurysm. If you are interested in participating, you don’t have to come in person; to learn more, please see the page on our study finder (https://pkdcure.org/clinical-study/genetics-brain-aneurysm-formation-autosomal-dominant-polycystic-kidney-disease/) or reach out directly to the researchers, Terry Watnick (twatnick@som.umaryland.edu) or Ashima Gulati (ashima.gulati@yale.edu).

    1. Rob Herman says:

      Hi Alexis,
      First, you met my wife Linda at the last conference in Kansas City and she says “Hello!” Thank you for your reply. We will reach out to these individuals and do what we can to help.
      I have an MRI tomorrow because I apparently have had a few “mini strokes” and my brain has been physically effected also. Yea me… again. I may have to write on this as well.
      Never Give In! (N.G.I.)
      Rob

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