Last week, my mom, Pam, faced her fear and flew alone for the first time, from Pennsylvania to California, to be with me for Mother’s Day. In celebration of her turning 62 this month and Mother’s Day, I wanted to do a special Q&A with her. I sat down with my mom, face-to-face in my living room, and asked her some difficult questions about our PKD journey together. We laughed, we cried, and I hope you are as inspired by my mom as I am.
Valen: What do you remember from the day you were diagnosed with PKD?
Pam: I remember being devastated and going with your dad to his mom’s house and crying. I was 21. At the time, my mom was on dialysis and I just couldn’t believe it. I always felt different than my sister and brother, and I wanted to be different by not having PKD like they did. I had already had your brother, Brandon, when I was diagnosed and the whole thing rocked my world.
Valen: Looking back, what would you tell your 21-year-old self the day you were diagnosed?
Pam: You’re going to be different than the norm.
Valen: How would you describe your personal path with PKD?
Pam: I’m amazed by it. I always felt doomed. When I was in my 30s, I wondered how many more years I had until I’d have to go on dialysis and when I was going to die. It dictated my thoughts. I didn’t think I would have a future. I assumed my lifespan was going to end in my mid-40s, but then my mid-40s came and everything was quiet. Then my-mid 50s came and my world was rocked by having cancer. I thought, ‘No, no, I already have a label.’ If any health issue would arise, it would be PKD-related. However, uterine cancer taught me that wasn’t true. Thankfully, I beat uterine cancer and am doing well. Now my 60s are here and I am utterly amazed. My heart aches, though, because I would have rather followed the normal progression of PKD and be able to give my currently healthy life to you, my daughter.
Valen: What symptoms do you have?
Pam: I’ve been on high blood pressure meds since I was 30. I get occasional sharp, stabbing, needle-like pain in my kidneys, but that hasn’t happened in quite a while. It is a reminder that I have PKD. Most recently, I’ve been having side effects from the cysts on my liver. I have a distended feeling in my upper abdomen, feel full quickly and can get nauseous after eating.
Valen: When you got pregnant with me, your doctor suggested you should get an abortion. Tell me more about that.
Pam: When I got pregnant with you, my mom had died six months prior. The thought of bringing another child into the world that had a 50 percent chance of having PKD was really hard. I spoke to my doctor about my concerns and he suggested I get an abortion. The abortion was scheduled and the papers were signed. The closer the appointment got, the more I thought about how I was about to kill a child, and I just could not fathom living with that decision. I took a walk the day before the scheduled appointment and received a powerful sign from a child. There was a woman pushing a stroller on the opposite side of the road. We were both walking towards each other and the little girl watched me as they approached and continued to as they passed by. I felt like the little girl was telling me to have this child. I went home and read parts of the Bible, and the next day your dad and I got up and went to York Hospital. We sat in the parking lot and I was bawling. Your dad told me that I didn’t have to do it if I didn’t want to. I told him I didn’t want to and we left York Hospital and drove straight to my doctor’s office and told him we didn’t want to proceed with the abortion.
Valen: How does it feel to have lived to see the first treatment for PKD in the U.S.?
Pam: I’m thankful and amazed. It is huge and we have waited a long time for something like this. Looking back, it is pretty extraordinary, because when my Uncle Kervin went into kidney failure, there was no option for him, not even dialysis. There were no options for all of my other aunts and uncles who didn’t even know what was wrong with them. We have come a long way.
Valen: How do you feel about the PKD advocacy work that I’ve done and how I’m sharing our family story?
Pam: I’m very proud. I find it amazing how you have this tremendous desire to reach out to other people and continue to help PKD patients and spread the word of organ donation. I think of my mom and sister and how amazingly proud they would be of you. I wish they would have been able to see you and be with you and appreciate you.
Valen: You raised a child who went through every aspect of PKD; what would you say to other parents raising a child with PKD?
Pam: I can sympathize with how gut-wrenchingly painful it is. I feel for them. I so feel for them! All I can say is that their child can blossom like you did. As a parent, it is hard to get past the heartache because you don’t want your child to have PKD at all. Sometimes, though, the child can handle it better than the parents and it doesn’t have to be their whole world, it can just be part of their world. Their child, like you, Valen, can turn it around to be amazingly beautiful. I’d suggest finding other people going through the same thing and lean on them for support and guidance. When you were growing up, we thought we were the only ones out there dealing with PKD. Ultimately, what I would say to other PKD parents is this: You are not alone. Surround yourself with positive people and things. Take your caregiving role in shifts so you don’t wear out. Try not to wear your emotions on your sleeve because it may not be good for your child to see.
Valen: What has PKD taught you?
Pam: It can be kind and it can be evil. I think of people who pass away in their 60s and I’m still here with this disease and to think I let it define me. Don’t let it define you.
Valen: Do you have a message to people that are consumed with worry?
Pam: Bitterness doesn’t get you anywhere. The more Valen goes through, the less bitter and more humble I am. Valen and her husband, Noah, help me think with a more positive approach. I am much more thankful. I look at the small things and appreciate them more. Try and stay hopeful, because as ugly as it may seem for weeks or days or months, things can turn around.
What is a poignant moment you’ve shared with a relative who also has PKD?
Thank you both for your honest heartwarming conversation. You are the best-I can relate to many of your thoughts and feelings!
You’re so welcome. It is an honor to share our family journey. I’m happy you could connect with our thoughts and feelings. Hugs!
Oh my… this is one of the most wonderful things I have read on PKD.. I am extremely grateful for the many things you do for PKD awareness. Will share this everywhere. Thanks wonderful ladies!
Your incredible sentiments really touched me and mean so much! Thank you for your continued support! Hugs!
Thankyou for your story. I am hoping to get some feedback on my concern. I’m stage 4 PKD and recently my hemoglobin went below 10, like 9.4, obviously I was very fatigued and working full time. They just started me on Procrit injection once a month, 20,000 units. I feel fine but the warnings on Procrit scare the life out of me. Does any one have any experience with this drug? It was only mentioned to me by Dr. and pharmacist that side effects could be injection site redness, nobody said anything about heart attack, stroke, sudden death! These were online and in literature with medication.
I do not have experience with this and since there haven’t been any responses to you, I wanted to reach out and see if you are on Facebook. If so, I think this would be a good question to post on the PKD group sites on Facebook. Please let me know if there is any way I can help.
Hi Joan: I’m on Procrit every month my Hemoglobin drops below 10. Does not happen every month. I feel better when it comes up, especially at 11 (such luxury). Tiredness never goes away, though. Guess it comes with PKD. My transplant is 29 yrs old…. I am 83 yrs young. We’ll probably die from something else…..Stay Safe….