Valen as a child, close to when she was diagnosed with PKD
I look at PKD as a family disease. For those of us who are not victims of a spontaneous mutation of PKD, it is likely that we are surrounded by numerous family members who are battling the same disease. One would think that we’d have great support surrounding us, but sometimes it’s hard to talk to–and support–our loved ones who battle PKD when we are in the trenches with it, too.
Valen’s grandma
For the first 10 years of my life prior to my diagnosis, I did not know what PKD was and never heard those three letters spoken together. Even though my mom has PKD and I lost my grandmother because of the disease before I was born and many other of my relatives have died from PKD, I never remember this being talked about. I don’t blame my parents, because why did I need to learn at such a young age that my mom was living with a disease for which there is no treatment and no cure, let alone that I myself could one day inherit it, too?
There are many emotional facets to PKD. I know my mom faults herself for passing this disease on to me, but I’ve never looked at it that way because her mother passed it on to her. There is no reason to think it is someone’s fault. I never once was angry at my mom for inheriting PKD. I know she also wishes she would have been the one to endure everything that I have from this awful disease instead of me going through it.
Valen and her Aunt Donna
My Aunt Donna, who didn’t live close to us, also had PKD. I remember her coming to visit us for a week and seeing her sit on the floor with a Ziploc bag full of meds. I knew she had PKD but we didn’t talk about it. I wish we had, because she decided to not pursue dialysis or transplantation and passed away shortly after this visit.
For some family members, it may be so difficult to endure the disease themselves, that they can’t handle watching their loved ones suffer from it, too. Maybe some parents are devastated that they passed this disease on to their child and are too emotional to talk about it with their children. Or perhaps they struggle with denial and they can’t face what their future may be like.
Valen and her mom
Sometimes support needs to come from outside our inner circle, from people who live with PKD but aren’t related to us or are mere acquaintances. Since some of us are surrounded by family members battling the same issues, one may think we are guaranteed to have the beneficial support we need, but that isn’t always the case. It is important to not fight PKD alone. I encourage you to seek support, whether it is with your family, friends and/or in your community.
Do you talk openly about PKD within your family? Where does your support come from?
We do and it is so helpful but can be overwhelming. We are awaiting transplant for my husband. I’m donating through the paired program hoping to help more than just my husband in the process. Wanting him to feel better is the only thing I really think about right now. His mom had her transplant over 2 years ago so that makes it easier to talk about it with them. Wishing everyone with this terrible disease the love and support they need!
Hi Sandy,
Thank you for sharing where you and your family are on your path with PKD. I’m happy to hear that you have support within your family. What an amazing wife and human being you are to not only give your husband a second chance, but someone else as well. I hope the transplant happens soon and that your husband feels better and your thought process can switch to thinking about happy things that you and your husband can do together. Wishing you all the best!
I have lived with PKD for 14 years and just 4 years ago did I really know what I had and the severity of it. Like many, my mother inherited it to me the youngest of three. She never spoke to me about it even when going through Dialysis. She finally spoke to me about it when I sat with her whilst she waiting to be taken in for her long awaited transplant. To this day I feel like I do y have the information I need to know how to live my life with PKD. Regardless, as I read this article I wept because this is the first time in my life where I feel like someone understands what it feels like to have this disease that tears through entire families.
Thank you for writing this.
Dearest Ana,
I can’t express enough how much your message means to me. Thank you so much for sharing your personal PKD journey and for your incredibly kind sentiments. I wish I could give you a hug. Please know you are not alone. If you are interested in connecting with others in your local area, let me know and I’d be happy to help make that happen. If there is anything I can do to help you on your path with PKD, please let me know. Thank you for your comment and helping to fuel my passion to keep sharing my journey. Hugs and wishing you all the very best!
Great article, thank you Valen for writing it.
My husband’s siblings and other family members have died from PKD. Our son is very much aware of the disease. His Aunt and Uncles died from it. His elderly grandmother chose no more treatment and we were at her bedside when she died. My husband has PKD and a transplant, which is a blessing; but has its own challenges.
Our son learned about genetics in elementary school and he knows he has a 50:50 chance of having the disease. Our son is also aware that severity, symptoms and onset are variable.
My situation is this: My husband and I had genetic testing in utero. We know our son has the gene. My husband does not want to reveal this info to him now (son is in his mid 20’s) because my husband experienced that life changing info as problematic, limiting even before he knew he had PKD. I respect my husband’s decision. However, I know we need to share the genetic PKD info with our son, if and when it looks like he is in a serious relationship.
I am struggling about what the therapeutic advantage would be for our son to know
he has the gene before the wolf (symptoms and/or potential fiancee) is at the door.
So far I am treating the information sharing like the “sex talk” guidelines–make room for questions, but only answer the ones he directly asks. He is not asking. Have others dealt with this situation?
Hi Lily,
You’re so welcome! I’m glad you enjoyed this article.
Thank you so much for openly sharing your personal path with PKD. So you were able to do testing before your son was born to determine if he has PKD and he does? Just want to make sure I understand as I have never heard that being done before. Fascinating and I oh so hope other parents out there share their thoughts on this. I am not a parent, but I can understand how this talk would be quite difficult and the pro’s and con’s of talking now about it or holding off. As a patient, I would want to know even if there isn’t anything immediate that I could do. However, there are others that may prefer not to know until necessary. Sending love as you navigate through this and hope parents chime in on your question. Hugs!
Hi
I have PKD and I am in my late 70’s. I have three children (all grown adults). Two have been tested for PKD and are fine. My oldest son, won’t go and get tested.my nephrologist has offered to see him and speak with him but my son doesn’t want to do anything. It upsets me to know he might have PKD and could be looking after his kidneys better at an earlier stage of this disease.
Hi Joyce,
Awesome that you are in your late 70’s – it gives hope to many with PKD that they will live long, healthy lives. Wonderful that two of your children do not have PKD and let’s hope that your third child doesn’t have it either. I’m sure it is really hard to see him in denial and not wanting to take care of himself. If he would go see your doctor, he could receive the same great news as his other two siblings and then could get rid of a lot of worry that I’m sure lives in his mind often. I wish there was a way that I could encourage him to get tested. I hope one day soon he will be open to it. Sending love and wishing you and your family all the best!
I found out that I had PKD when I was around 18 years old. It was realized then that my mother also had the disease. She has since passed away four years ago (age 66) after being on dialysis for over 12 years. I am 45 years old now and my kidneys have also begun to decline and since my mother was adopted there is no other family members with this disease so I do relate with wanting to reach out for support outside the family circle. My older (and only) sister did not end up getting this disease…thankfully, but sometimes I wish there was someone I could talk to that understood what it is like to live with PKD. Is there anyone that is currently taking the drug Jinarc/Tolvaptan? I have been on it for about 10 months and would love to connect with someone else who is also taking this drug.
Hi Christina,
I’m so sorry that you lost your mom because of PKD. With now not having any other family members with PKD to talk to for support, would you be open to connecting with your local PKD chapter? I live close to Sacramento, CA and am a part of the Sacramento chapter and some of my closest friends are involved in our chapter. I also founded the South Central PA Chapter and made wonderful friendships through that chapter as well. It is just an option and if you are interested, I’d be happy to help connect you with your local chapter. Also, if you share your email address, I’d be happy to connect you with a friend who has been on Tolvaptan for a very long time and I know would be happy to talk with you. If you’d like, you can email me at pkdwillnotbeatme@yahoo.com and I’d be happy to connect you with the support that you need and I’m also here if you ever want to talk. Sending hugs and wishing you all the best!
My father has had a long battle with PKD. He went on dialysis around 2012. He finials recieved a transplant but then had other problems and it stopped working a year later. He now is back on dialysis and has about a 6 months before he will not be eligible to have a transplant. It is so difficult wondering if someone would care enough to give him a kidney. I also have PKD so I am not eligible and can only hope in what seems to be pipe dreams with all the research that seems to be taking way longer than it could and not have enough money.