PKD Connection Blog

PKD Will Not Beat Me

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?”

My grandma lived to be 93 years old. No matter the age, death is difficult for those left behind. Currently living with PKD, however, and having lost family members at an early age, I know that my grandma’s life should be celebrated. She lived a healthy, full and happy life and was loved very much. If living with health issues since the age of five has taught me anything, it’s that one could not ask for much more than a long and healthy life.

Valen’s grandparents

After Dad, Mom and I visited Grandma at the mausoleum, we went to her home, which she had lived in since 1956. When we walked in the door, it still smelled like her house and I couldn’t help but say “Hello” in a loud voice like I used to do because her hearing deteriorated with age. It was bittersweet to walk around her house. I tried to soak everything in since I knew it would be the last time I would see it. We looked through old photo albums and I found great comfort in seeing her in her 20s with a big smile on her face, enjoying life with my grandfather, who passed many years ago.

Her passing was a classic story of the elderly. She fell, fractured her hip, had surgery, went into a rehab home and died several weeks after her fall. It was all so sudden.

Valen and her father at the mausoleum

A poignant moment that occurred the weekend before her passing was when my father visited Grandma in the rehabilitation home. It was the last time my father saw his mom. They shared a very emotional conversation about life, loss and how they felt about one another. They expressed sentiments that I’m positive both were so thankful that they did. Grandma kept saying how tired she was and how hard this was for her. Dad was holding her hand and squeezed it and she didn’t squeeze back. The fact that she was too tired to squeeze my father’s hand in response was really tough on my dad. I can’t help but think that this conversation was what my grandma needed to feel fulfilled and know that it was her time to go. She passed away in her sleep shortly after their talk. We don’t know exactly why, but I wonder if she was just ready to let go, if she was too tired to keep fighting, if her hope faded, if she lost the will to survive, if she was content with her life and if she was at peace with dying. I miss her greatly, but we could all wish for the life and death that she had.

Valen when she was younger with her grandmother

Loss and death is a part of all of our lives. With PKD being a “family disease,” we experience this often and sometimes at a young age. It seems quite unfair. I never met my maternal grandmother because of PKD. My aunt chose not to go on dialysis or have a transplant and let herself die. I wish I knew why she didn’t have the will to survive. However, we must all respect each other’s choices. I can see how one can become tired and overwhelmed by our journey and how physically, mentally and emotionally challenging it can be. It takes a strong will to survive to walk in our shoes, but I believe life is worth it and I hope I will continue to have a fighting spirit for the rest of my days.

Two days after saying my goodbyes to my grandma, I became very ill and was rushed to the emergency room at York Hospital in York, Pa. Stay tuned for my next blog to learn how I fought through my recent health hiccup and my will to survive.

How has loss impacted your PKD journey? Have you lost someone special because of PKD? I invite you to honor them today by sharing a little bit about them and what you have learned from their life.

Comments

  1. Karen says:

    I’ve lost all my aunts on my mom’s side to PKD. Lost my mom back in 2006 too. She was in hemodialysis for 10 years. During the last two years, she just gave up. Hemodialysis is so invasive, she just couldn’t handle it anymore.

    I was her caregiver. I have PKD too. It was so ironic, I was seeing my possible future before my eyes. My creatinine is still in the 1s so I’m good.
    Thankfully my older brother got a transplant in 2015, and is doing great.
    So I’ve seen both sides of ESRD.

    Sometimes I wonder what will be MY ESRD story…

    1. Valen Keefer says:

      Oh, Karen, I’m so sorry for all of the loss you have endured and that your mom’s final years were so tough. Dialysis is so hard.
      To be a caregiver of someone with PKD when you yourself have it takes great strength. Not all of our journeys unfold the same and I am happy to hear that you are doing good and that your brother received the gift of life. Your mom would be so happy!
      I think we all wonder how our story will unfold. Let’s stick together and take it one day at a time. Wishing you and your family all the best!

    2. Stephanie says:

      My dad has a very similar story to your mom’s. He did HD for 10 years and his heart became so weak from the dialysis that he developed afib and had a stroke. The last two years of his life after his stroke was the hardest because his once vibrant personality was withdrawn and bland. He eventually died from complications this past April. He died a week before my daughter was born. It’s only been less than three months since his death, and I wonder when the grieving will get better. I don’t feel I am coping very well.

      I too have PKD and watching his struggle was like watching my future. He went on dialysis at 42. I’m 31 and in stage III kidney disease. I’m very scared for my future.

      1. Nikki says:

        Hi Stephanie, reading your story felt like reading the story of my life actually. Im also 31 and recently learned im in stage lll. I didnt know i was that far and it came as a shock to me. I lost my dad a year ago due to PKD, having seen him battle this disease since i can remember. I totally agree with you – watching him struggle was like watching a movie of my future. i say it so many times….”Ive seen this movie”. It scared me so much, and i also am struggling to cope with the idea.
        It is a year after my dad passed, and I can promise you the grieving gets better with time. I will never stop missing him and the worst is that I can’t phone him and ask him PKD related questions (he was always my go-to guy). But, i can’t tell you how relieved i am that he is not in pain and discomfort anymore. Seeing him like that broke my heart every time. I recently started visiting a psychologist to just discuss some of my worries and fears for the future – and so far i have learned that i cannot control the future, i cannot stress now about something that has not happened yet. I can handle what is happening right now and I can only do my best now (controlling BP, drinking water, exercising). So far – i decided to take things one thing at a time. But most days, im scared and feel alone because I cant tell him what I am going through. (and no one else really understands as this is an ‘inside condition’ where you look perfectly fine on the outside)

        Congrats on your beautiful baby girl that was born – it is such a blessing and I hope you enjoy her. After a very long process with Preimplantation Genetic Diagnosis Im finally pregnant with a PKD-free embrio (YAY!) and really hope all will work out – it is still VERY early days..i am scared as to what this pregnancy will do to my kidneys….but, one day and one health issue at a time. All the best x

        1. Valen Keefer says:

          Dear Nikki,
          Thank you very much for sharing your journey. I can’t believe the similarities between you, Karen and Stephanie. It means a lot to read your words of support to Stephanie and I trust it will give her comfort. I’m so sorry that you too lost your father because of PKD and all that you have had to see and wonder if you too will go through. Please read my response to Stephanie in which I share how my mom and I have had opposite paths with PKD. I appreciate you sharing your experience with your psychologist and what you have learned. Your words of wisdom will be great for others to read. If you are on Facebook, please feel free to connect with me. I’m listed as Valen Cover Keefer. It made me sad to read that you are scared and feel alone without having your father to talk to. I can relate that it is hard for others to understand because we do look fine on the outside. If there is any way I can help you along your journey, please let me know. Congratulations on being pregnant with a PKD free child. I hope your pregnancy goes smoothly. Wishing you all the best and thanks again for sharing and providing comfort to others on my blog. It means a lot!

      2. Valen Keefer says:

        Dear Stephanie,

        I wish I could give you a hug! I just read the above message from Nikki to you and I can’t believe how similar your journey is to Karen and Nikki. I hope her message gives you some comfort. Thank you for your willingness to share your story and the loss, pain and concerns you are enduring. I’m so sorry you lost your father and had to see him go through so much because of PKD and that he was not alive for your daughters birth. It is important for us to let our emotions out and please don’t be too hard on yourself as everyone grieves differently. Grieve how you have to and I hope you are surrounded by family and love to help you through. One aspect that I can share from my story is that I inherited PKD from my mom. Everyone on her side of the family passed before 53 because of the disease. My mom is now 61 and is doing well with her original kidneys. Then there is me who is 34 and had both kidneys removed at 18, was on dialysis and had a kidney transplant at 19. We don’t always follow the same family history as our loved ones. My mom and I are on opposite ends of the spectrum. I’m the youngest in my family to endure such severe side effects from the disease and the only one to ever receive a transplant and she is the oldest to survive. I hope you will follow a path like my mom is on. Sending lots of love and healing hugs your way!

  2. Maureen Gardner says:

    Thank you Valen-love hearing your special thoughts about your dear Gramma. Growing up I leaned a lot about loss from my Mom. Before she died at age 88 she had lost 4 of her 6 children. One was a 6 week old infant. Two of my older brothers died as teens-14 and 17. They had kidney disease but this was in the 60 s when Ultra sounds were rare. They never had a diagnosis of PKD so we don t know, Sadly my brother 2 years younger than me fought a tough battle with lymphoma but passed away at age 49.
    When my daughter was diagnosed as a teen with PKD it was pretty scary. So it is 12 years later and I am so thankful for the Pkd foundation and you for all the inspiring stories and great info!!

    1. Valen Keefer says:

      Wow! Your story is incredible. Thank you so much for sharing Maureen. Your mom experienced way more loss than anyone should in a lifetime. You must get your strength from your mother.
      I am thankful for your continued support! We’re in this together. Big hugs!

      1. Maureen Gardner says:

        Thanks again Valen! My nickname for my Mom was “The woman of steel” Hugs to you also!

        1. Valen Keefer says:

          This made me smile! What a perfect nickname for a woman of incredible strength! I’m sure this title was passed down to you! 🙂 Thank you for sharing. Love learning more about you! Hope you have a beautiful weekend! 🙂

  3. Linda C. in AZ says:

    I lost my dear father over 12 years ago to PKD. He initially was on dialysis for over 2 years prior to receiving a cadaver kidney at age 67. I will never forget the call from my mom letting me know Dad was in surgery. He did not want Mom to tell anyone until he was sure the transplant was a go. Since I already knew I probably had the disease, I engaged in conversation with the transplant team and learned as much as I could about the transplant process. Although Dad’s body did not reject the kidney, the anti-rejection drugs caused lymphoma and he went back on dialysis. He decided he would let someone else benefit from the gift of kidney donation, which had lasted him a memorable 2 years and one last trip to see his family in Germany.

    I frequently recall my dad’s PKD journey, especially when I come closer to my 3 month checkup, which is next week. My GFR is 29 (top of Stage 4). I am also aware of the gift of life that God has given me and cherish each day. Acceptance of this disease has been tough at times, but staying informed, positive, and taking care of myself is where I focus my energy.
    Valen, your blog has truly been an inspiration to me as well as reading your biography and I thank you from the bottom of my heart.

    1. Valen Keefer says:

      Oh Linda I can’t thank you enough for sharing your touching story and for your super sweet sentiments. They mean so much! I can feel the love for your father through reading your message. I’m thankful to hear that his transplant gave him a memorable extra two years, but I sure wish it wasn’t cut short by lymphoma. I’m so sorry that PKD took your dad from you.
      I commend you for being proactive and learning as much as you could about the transplant process. I can tell you are going to be just fine by the wonderful attitude you have. You are honest with your emotions and doing the best you can with staying positive and taking care of yourself. Awesome job! Thank you for sharing your story and knowledge, which all of us can learn from.
      I greatly appreciate you reading my blog and my biography! It is an honor to share my journey and hearing emotions like yours makes it all worth it and fuels my passion to keep writing. Sending lots of love! Keep fighting my friend! Your dad would be so proud of you! xo

  4. Marcia says:

    Valen, Karen, Maureen and Linda,

    Thank you all for your responses. Valen- my sympathy- and thanks for sharing your memories of your beloved grandmother. You all help remind me that my exhaustion is part of this incidious disease. I keep dropping into stage 5 and am so aware of the balance of hormones and the chemistry of my body, and the hardest is maintaining some illusion of “being in control” when in reality it is only in my attitude that I have control. And no one knows the path we walk except those of us who are linked by his genetic disease- and that is each of you

    1. Valen Keefer says:

      Dear Marcia,

      This sentence really made me pause, “The hardest is maintaining some illusion of being in control when in reality it is only in my attitude that I have control.” WOW!!!! This is so important for everyone to truly understand and embrace. It is quite hard to balance our lives when we have PKD as it likes to show itself and its side effects whenever it pleases and it can totally disrupt our lives, however we are in control of our attitude and how we will respond to what we are forced to deal with. As I’ve gotten older, I’m really trying to also embrace and not fault those that don’t “get it.” You really have to live through certain things to fully understand and have the greatest compassion for them. I’m so thankful that all of you have shared comments on my blog. This is why I write….to create a community of support, something that I did not have when I was younger and I don’t want anyone else to have to endure this disease alone. Thank you, Marcia, for your invaluable advice!!! Hugs!

  5. r says:

    you do not talk about the liver.

  6. ron covato says:

    please talk about the liver. i carry about 50-60 pounds there.

    1. K_K says:

      Dear Ron, as many of us have not experienced the burden of many cysts in our livers, we’d like to hear your story. What is going on with you?

      1. Valen Keefer says:

        Dear K_K,
        I appreciate your comment and for kindly encouraging Ron to share his story. Thank you!

    2. Valen Keefer says:

      Hi Ron,

      Thank you for commenting on my blog. As K_K so kindly said, we welcome hearing your story with PLD. I personally do not have any cysts on my liver, however there have been two previous stories shared on PKD Connection of two people with PLD. Below are the links to those posts. Also, there was a research post in regards to PLD. I included that link below as well. I look forward to hearing your story. Take care!
      http://pkdcure.org/pkd-will-not-beat-me/body-image-and-a-pkd-belly

      http://pkdcure.org/education/living-pld-kelly-shakoor

      http://pkdcure.org/research/research-update-pkd-foundation-fellow

  7. Sandee & Dean says:

    Thanks to all of you for sharing. Our twin sons are on dialysis (age 44) because of PKD.

    Sometimes I get discouraged & I can’t feel what it is like for them.

    1. Valen Keefer says:

      Dear Sandee & Dean,
      I am so sorry that you are double dealing with this at the same time! My mom is 61 and passed PKD on to me, however she herself has not gotten to end stage renal failure yet. I know she could relate to your emotions and as a child it is hard to watch our parents feel helpless. Please know a parents love and support is greatly appreciated by their children! Wishing your twins, you and your family all the best!

  8. AmyE says:

    I am fortunate to be spared to know the details of the suffering of my biological family members until I was older and was strong enough to cope with it better, but I will never settle for accepting that it can’t get better. There will never be a cure (only treatments) unless there are miracles or genetically modified embryos. I am very heart-broken that some of my siblings are currently reaching ESRD in their mid-30’s. I am over 40 and have only had minor symptoms. In fact, my doctor’s office just called 2 hours ago with great news- my gfr is back up at 117! I was a little nervous since the last 2 tests at independant labs revealed that it had dropped 50 points from last year. I am very grateful that I am so healthy, but most people don’t know that I would rather suffer than watch them suffer. For now, I will just continue to raise awareness and money and continue to participate in clinical trials!

    1. Valen Keefer says:

      It is determination like yours that the PKD community needs to help find a treatment and cure!!! I’m so glad you are healthy. Maybe you are the healthy one because you are strong enough to care for the ones in need! Wonderful you received great news from your doctor today! 🙂 Take good care!

  9. Joan Lafayette says:

    I have been living with the knowledge of PKD my whole life. I inherited it from my father and grew up living in its’ shadow being dragged for IVPs’ from the age of 14. It felt like everybody was just waiting for me to show positive. My father died when I was 23 and he was 66. I lost my sister who was 17 years older than I when she was 65.
    I finally showed active with the disease at 25. I’m 68 now and have done well, even though my creatinine is 2.1 and I’m stage four. I choose to remain positive and don’t, can’t, entertain the idea of dialysis or transplant. I live alone am self supporting still working full time . I can’t afford to get sick. It’s just how I have to think. I think my nephrologist believes I have my head in the sand but when you’ve thought about the outcome of the disease your entire life and choose to believe in the best and believe “all things are possible through Christ who heals me” , I just wish doctors could be a bit more supportive of patients that are trying to stay positive.
    I realize things could get worse and IF they do I will deal with it but in the meantime I’m fighting this thing with all the positive imagining I can muster up, thank you very much.
    Wondering if anyone else out there is dealing with the same struggle.

    1. Valen Keefer says:

      Hi Joan,
      Thank you for sharing your journey and positivity. This is a family disease and your story exemplifies this and how we not only deal with it ourselves but endure it in other ways by watching our loved ones fight it and pass on. I’m sorry this has been such a huge part of your life, but I share the same outlook as you and stare PKD right in the face with all the positive energy possible. I trust if the day comes that you will have to go through dialysis and transplantation, that you have the strength to beat it. It is awesome that you are 68 and doing well with PKD. That’s quite an accomplishment. I was diagnosed at 10 and on dialysis at 18 and had a transplant at 19. I’m wishing you all the best and appreciate you reading my blog and sharing how PKD has impacted your life. PKD Will Not Beat US!!!

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