It’s hard to believe it has been 23 years since we met. You arrived in a fierce and unforgettable manner. I went from having no clue who you were to having an alarming blood pressure reading of 160/140 mm Hg as a 10-year-old, and then being diagnosed with you. Wow, you wanted to be heard and you were, loud and clear. From that day forward, you have led me down a very unique path, one I wouldn’t wish on anyone, yet I’m okay with it. What other choice have you given me?
Little did I know upon our meeting that you had touched countless lives on my mom’s side of the family. Even though you are genetic and there is a 50 percent chance you’ll introduce yourself in a family member’s life, that percentage didn’t apply to our family. You did not skip a generation. You took my grandma before I was born. I wish I could have met her. You cut my aunt’s life short in her late 40s and made me endure more severe side effects of PKD than any of my other family members.
When you arrived, I was too young to fully comprehend the incredible impact you would have on my life. When I was 10, I was told that you wouldn’t affect me until my late 40s to early 50s. It wasn’t long after my doctor made that statement that it became untrue, and I learned firsthand every aspect of your cruel and powerful being.
When I reflect on my youth, I realize you made growing up harder than it already is for a healthy child. Your debilitating pain and countless cyst bleeds led to many hospital stays, with one lasting six months in my senior year of high school. You cut vacations short, stopped me from participating in gym class and sports, and eventually made your ugly self visible on the outside when my kidneys enlarged and made me look “11 months pregnant,” according to one of my surgeons. It is hard enough trying to fit in and, thanks to you, I felt very different and alone.
Somehow I survived middle school and high school and emerged as a strong individual, even with all that you put me through. As much as you tried to bring me down, though, my spirit was strong and I graduated with honors. I was not going to let you beat me. I had a promising future and I started college. That was when you took control and I was at your mercy. Your cyst bleeds led to an almost year-long hospital stay where both of my kidneys were removed, I was on dialysis, had pancreatitis, a congenital anomaly, and received more than 70 blood transfusions. I was too sick to be placed on the transplant waiting list and needed a living kidney donor to become healthy enough to keep fighting you. I was so lucky to receive a kidney at age 19, which led to my health being restored despite the many times you attempted to take my life.
I’m not sure why you attacked me the way you did. What did I ever do to you? Why when I was so young? I wonder what I would be like without you? How would my life have unfolded? Would I be a mom and have children if we had met later in life? Did you put me through all of this because you knew I could handle it? Because you knew I was strong enough and would use your challenges to help others? That is the only sense I can make of you. The odd thing is I have never had any anger toward you. I’ve just dealt with you as best I can.
Although you’ve made me devote so much of my life to you—something I will do for the rest of my days—it may be hard to believe, but it’s not all about you. I also have epilepsy and chronic pain from scoliosis to deal with. I know you took a lot away from me and tried to defeat me, but I like to look at the positive attributes you’ve given me. You made me grow up fast, although I think I’ve always been an old soul at heart. You gave me no choice but to be a fighter, or else I would have died. You taught me how powerful I am both physically and mentally, which in turn has helped me through other challenges in life. All of the loss and pain have given me great perspective on how precious life is and how to appreciate the little things. Positivity was the most powerful weapon against you.
I’ve taken the negativity and pain you’ve brought into my life and have used it in a positive and productive way. I’ve shared our journey together at more than 85 events across North America. This is the 188th article I’ve written on how I live positively despite you. Doing things like this has helped heal the wounds you caused and has helped others who are affected by you, too. There has never been any use in asking, “Why me?” because I know I am not alone when it comes to battling PKD.
I do have something to thank you for. Thank you for keeping my mom so healthy. Please continue to be kind to her. Although my life has been forever altered because of you, PKD, you do not define me. As ugly as you are, I’ve managed to create and lead a fulfilling life that is rich in love. I look forward to the day a cure is found so that you won’t have the opportunity to affect future generations. I will continue to find the best in you regardless of how much you test me, because PKD will not beat me!
What would you say to your PKD?
Kris and I are in our car driving to our vacation destination of Prince Edward island. Kris just finished reading your blog aloud and she got very choked up. We both agreed that It is one of the best and most creative articles you have written. Good job, from two of your Canadian friends.
Dennis and Kris McCloskey
Dear Dennis & Kris,
I hope you two had safe travels to PEI and are having a lovely time! Makes me smile imagining Kris reading this aloud. It means a lot to know how much the two of you enjoyed this post. Thank you for your continued support and love! I consider you and Kris not just my Canadian friends, but my Canadian family! 🙂 xo
Your article touched me, too. I also have multiple conditions and my husband is beginning to comment on how I have doctoritis. He says I’m addicted to going to doctors. Along with the PKD stage V I also have an oncologist and an gynecologist following me for a breast lump nine years ago (my mom and sister both had breast cancer, my mom died of it and my sister died of ovarian cancer). I have a surgeon who created my fistula last fall and 3 weeks ago had to insert a balloon catheter into it to enlarge it. Now I’ve been having MRIs to try and determine the cause of both right leg numbness, pain and tingling for 14 years and lack of muscle control of my anus this year. So I’ll be seeing a neurologist Monday.
I’m handling all of this the best I can and just taking things one at a time, one day at a time. The best thing I’ve done lately is to join a diet and exercise group online that allows me to take positive action to maintain my health. I am still being evaluated for the kidney transplant list and will have a whole other group of doctors there! So there! Thanks for allowing me to vent!
Take care on your journey!
I totally sympathize with all of the doctors. Our health is complex and we require a team of doctors to care for us. I hope your neurologist appointment went well.
You’ve got it figured out by taking things one at a time. That is what I do and sometimes we have so much going on that one thing at a time is all we can handle. Wonderful to hear that you found something positive to help maintain good health. It is good for us to focus on areas of our health that we can control, since there are other complications that we don’t have control over.
Always here for you to vent. Take good care and keep that positive spirit.
I TOTALLY AGREE with everything our/ your Canadian family said A beautiful post and as Kris found, this one made me very emotional . Our lives would indeed be different without PKD…..but….I think my sweet friend ……that we are all born with a life’s mission and this is ours. I cannot imagine now, not having all my PKD family and transplant buddies in my life. I love them all and they have all brought so much to my life. xo
I couldn’t agree more dear Jan! You have brought so much to my life and I can’t imagine not having you in my life! Thank you for your support, friendship and love! xoxo
Valen, one of your best. Very empowering letter to that 3 letter thing we all despise. Like you, it will never beat my spirit or rule my world. Hoping to be at your walk in September. Love to you and your family
Thank you so much, Cathy! Means a lot to hear you say this post is one of my best! This was one of my favorite blogs to write! We are kindred spirits and I’m thankful for your friendship! xo
I would say to my son’s PKD:
I hate the uncertainty you create for the life of my child. The hardships he is destined to face because of you saddens me. The uncertainty of not only what may happen but which pieces of his childhood will be altered by you. His innocence has already been stripped somewhat from doctors’ appointments and blood work.
Despite not knowing when your wrath will come we grow stronger as a family every day to stand against you when the time comes. My sons are educating their classmates on what you are and you will no longer be able to operate in the dark. We have acknowledged and accepted your presence in our lives but we will not embrace you. You will be defeated. Your uncertainty on impacting future generations is just as uncertain. Be warned.
And I would say perfection to you as well Ann! Thank you for taking the time to read my Dear PKD letter and sharing your own. Big, big, big hugs to you and your family!
I wish I could have been at the convention and met you and your family and had been able to exchange PKD books.
WOW! This really hit home. I never even heard of PKD until my grandson was diagnosed with it. I will walk for PKD as long as my knees will let me. Then I will use a wheel chair. Thank you so much for your inspiration. My daughter wrote a book about PKD. It is called “My bumpy kidneys.” It tells children how PKD effects people. Please let everyone know to use this book for school children to learn about PKD.
God bless you and yours,
I very much appreciate your touching sentiments! Thank you for your steadfast support of PKD…the unconditional love you have for your grandson will help him immensely on his journey. It is love that has fueled my passion to fight. Wishing all the best for your family!
Fantastic!!! I come from a family with pkd. My father and brother both passed away at age 53 from this horrible disease. My younger brother had a kidney transplant and is doing great. I also have pkd who has passed this horrible disease to my beautiful daughter. This disease is hereditary in our family. The article you wrote was so powerful and beautiful at the same time. You have so much fight and positive attitude. You are one heck of a person. This article will motivate a lot of people with this horrible disease. Thank – you for this upbeat and positive article. My you stay healthy and all your dreams come true.
This disease is such a devastating family disease and I am so sorry for all of the loss you have endured. Thank you for your sweet sentiments. I hope this article helps to raise awareness of PKD and empower those fighting this ugly disease. Wishing you, your family and beautiful daughter all the best!
I marvel at your highly spirited heart and steadfast vision Valen. This passage– so beautifully written, and so eloquently told. I salute your courage, I applaud your strength and stand in awe of your life’s journey. May your many life-renewing gifts to others return your way to feed your most deserved life through optimum wellness, soul-felt love and sustained inner joy. Blessings, Risa
Wow, Risa! This message really spoke right to the core of me. I have read it several times trying to soak in every heartfelt and touching word. Thank you for your genuine support and beautiful message. I look forward to the day we meet.
As I sit here and read this tonight I feel as if you’re writing my own PKD journey. I too have persevered and it too has taken some most cherished memories from me. Most people don’t understand but I know you do, and those like us. Thank you for sharing this. Thank you for letting other see how strong those of us with PKD are.
Thank you for this touching message. I am so thankful that you were able to connect with my post, as those of us fighting PKD “get it.” Only those enduring PKD and in the trenches with us understand all facets of what living with PKD is truly like. Your last sentence made me smile…we are strong! Keep that positive and strong spirit! 🙂
Wonderful writing Valen.
I would say:
Because of you my mom who was my best friend, will never get to see me walk down the aisle. She will never fuss on how I will wear my hair or the cut of my dress. She will never get a surprise pregnancy announcement from me. I can’t call her to discuss nursery themes or baby names.
Because of you, every time my baby brother gets dehydrated and there is talk of dialysis my chest clenches like someone is gripping my heart. I obsess over his kidney function and lab levels.
Because of you I have to warn any girl he dates what she’s in for long term. Will she make a good caregiver? I am not naive, I understand it is not for everyone.
Because of you ultrasound techs don’t have to wait for the doctor to tell me what is on the screen, I’ve known what a diseased kidney looks like since I was 15. I have known what immunosuppressants are since I was 9. It’s ingrained in me.
But because of you I have met some of the most wonderful people in the healthcare field and on some of the worst and darkest days of my life, nurses have usually been the greatest blessing.
So because of you I am going to school to be a nurse.
I can’t thank you enough for joining me in writing a Dear PKD letter. Thank you for your willingness to share your deepest thoughts and the reality of what living with and growing up with PKD is like. It means a lot to me that you wrote this, thank you! I share your same sentiments on nurses and I think it is wonderful that you are going to be the greatest blessing to someone in their time of need. Your mom is proud!
If you are on facebook, I would love for you to friend me: Valen Cover Keefer
Wishing you all the best! Hugs!
Valen, what a beautiful story. I must say, you are one incredible, brave and inspiring gal. I am ongoingly amazed at your courage and attitude. You are my hero! Blessings to you and yours. xoxoxoxoxoxoxoxo <3
Thank you so much for your continued support and friendship, Marsha! I am truly honored to be your hero! 🙂 xoxo
The only thing that I can add to this wonderful open letter. You are not alone because my daughter faces challenges everyday, only they are not as severe. I pray for you and your mom daily and like you I feel blessed that I can help my daughter. PKD they will find a cure I just hope I can be here to celebrate that day.
Knowing we are not alone is comforting. I didn’t know that until my early 20’s. Thank you for your prayers, support and friendship. Your family is so lucky to have such an amazing caregiver! Your strength and your many PKD loved ones you have cared for is admirable. I hope I can be here to celebrate that momentous day with you! xo
Beautifully written Valen. Sadly this condition is not really visible, besides the swollen belly appearance. No one knows what one goes through. Being positive helps a great deal! It’s good to do for others. I do pray a cure is found to prevent the future generation from suffering.
Thank you so much, Jean! I pray for the same and will continue to share my story and do all I can with the hope of future generations not having to endure what we do. Wishing you the best!
Hello I’m Richard,
I have had PKD for some time now and I’m on my 8th yr of Dialysis, I have watched my Mother and Grandmother fight PKD. I have to have a heart and kidney transplant witch know all about ,that’s OK I’m going to keep kicking it’s ass ,sorry about the curse words. I’m so sorry you had to start so young, I do feel sorry for my Aunt Gail, cousin Amber, answer son Stetson. My aunt is going threw a lot she does Dialysis already, my cousin and son have no idea what we are g owing threw except what we tell them , but I know they will be strong .
Well Valen God has blessed you just almost like he has blessed me maybe we can meet one day to share our story to each other and others who might not think they have a chance .
Thank you for sharing your family history of PKD. I commend you for enduring 8 years of dialysis thus far. I know that is not an easy lifestyle, yet our lifeline while we wait for a transplant. I hope you receive the gift of life soon! Keep that fighting spirit, it is what keeps us going!
As I read your piece I am sitting alone in a hospital bed battling an infection related to my PKD. As you know it can be a scary and lonely journey; your letter makes me feel as if there is a kindred spirit beside me cheering me on. It reminds me to keep the faith and to keep moving forward. You are a courageous, inspirational and generous soul. Thanks for helping so many others while you help yourself.
Oh Judy, I am so sorry to hear you are in the hospital battling an infection. I hope they have a handle on things and a strong plan to restore your health. It really touches me to know that you took the time to write to me while in the hospital. Hearing you say that this letter makes you feel that you have a kindred spirit beside you cheering you on means the world to me! We are kindred spirits and please know I am cheering you on! You are correct, this can be a scary and lonely journey, but please know that as you read this, you are not alone! I hope you can feel my warm embrace. Try your best to stay strong and take each step forward, I know it is not always easy, but I’m pulling for you. Thank you for your sweet sentiments. Please keep me posted on how you are. Sending lots of love and healing hugs from CA!
My son was diagnosed with PKD about 3 years ago, he is now 38. He suffers from severe pain everyday. He has had infections due to this horrible disease. At this point he has never been hospitalized but, he also doesn’t go to the Dr very much. He tells me I will be going to the Dr more than he can imagine in time due to PKD. He never complains, no matter how much pain he endures, his biggest fear is his daughter could inherit this mean, viscous disease. He is my only child , and it breaks my heart to see him suffer and there is nothing I can do for him. I hope and pray he has many years before he has to go on a transplant list. I also, hope and pray each and everyday they find a cure for this awful disease! We have walked in the PKD walks every single year since he was soap, and I hope this year more of our family will walk with us. I’m so sorry for what PKD has put you through you are inspiration to all of have PKD. I cry a lot when I’m alone because I don’t know what to do for my son, except to pray and be there for him… And, that is the most hurtful, desperate feeling any mother can have. I would say to PKD why do you have to be such a viscous, painful and devastating disease!! And, YOU will NOT beat MY SON!!! Thank you for your story and your encouragement! God bless each and everyone with this horrible disease!!
Thank you for your sweet sentiments and for sharing your raw thoughts as a mom of a son with PKD. I’m sure my mom can sympathize and connect with your emotions. I inherited PKD from my mom and have never been bitter or angry. I have always looked up to my mom with the utmost respect for all she has seen and endured because of this ugly disease. I’m grateful she brought me into this world. It is love and support that has guided me through the pain and continues to. Makes me sad to know you cry alone and feel helpless. Next time you feel like this, please know I’m giving you a big hug and know that even though you wish you could do more to help your son, try not to be too hard on yourself and know that loving and supporting your son will help him immensely and is very much appreciated. I hope your health is well and wish all the best to you, your son and family!
This letter was such a true reflection of PKD, I could not stop reading it. I am from South Africa and I can tell you that this disease is not very common here. I first came in contact with it when I married my husband. His mother’s family is full of it and both him and his sister got it from his mom. His sister died with a brain aneurism due to PKD before her 40th birthday and his mom a month after at the age of 66 whilst on dialyses. He has cists on both his kidneys making each as big as rugby balls. With the grace of God none of my daughters have the disease and I am very thankful for it. This disease is not only physical but also mental. As a spouse you need to be so cautious not to get trapped in the aftereffects of this disease. The pain and the discomfort of the PKD victim (I call it a victim because it feels like it) and mood swings and sometimes disillusions can be very overwhelming. I wish we could have had better care and clinics to assist my husband. I know that in SA they do not remove the PKD kidneys during transplanting and that is sad. I just hope when it comes to that point that we can do it in America. Thank you very much for being a advocate for PKD. Your life story is very inspiring.
This letter was such a true reflection of PKD, I could not stop reading it. I am from South Africa and I can tell you that this disease is not very common here. I first came in contact with it when I married my husband. His mother’s family is full of it and both him and his sister got it from his mom. His sister died with a brain aneurism due to PKD before her 40th birthday and his mom a month after at the age of 66 whilst on dialyses. He has cists on both his kidneys making each as big as rugby balls. With the grace of God none of my daughters have the disease and I am very thankful for it. This disease is not only physical but also mental. As a spouse you need to be so cautious not to get trapped in the aftereffects of this disease. The pain and the discomfort of the PKD victim (I call it a victim because it feels like it) and mood swings and sometimes disillusions can be very overwhelming. I wish we could have had better care and clinics to assist my husband. I know that in SA they do not remove the PKD kidneys during transplanting and that is sad. I just hope when it comes to that point that we can do it in America. Thank you very much for being an advocate for PKD. Your life story is very inspiring.
I’m so glad you enjoyed this post. Thank you for sharing your connection to PKD and shining a light on the mental aspects of this disease in addition to the physical. I’m so sorry that your husband has pkd and the loved ones you’ve lost. He’s lucky to have an amazing caregiver like yourself. If you’re on Facebook, please feel free to friend me – I’m listed at Valen Cover Keefer. Also, if you ever consider coming to the United States for care, please let me know and I’d be happy to help connect you with the best doctors. Wishing you all the very best!