Valen’s husband, Noah, offers insight into what it’s like to be a caregiver to a PKD patient.
I sat with my face in my hands as the fifth person tried to start an IV in Valen’s delicate veins. She was trembling vigorously, staring at the ceiling; her tired eyes were red and glassy. She winced as the needle pierced her skin for the eleventh time; tears again welled up. We had been at the hospital for several hours at this point and we were both exhausted, neither of us had much left to give. This had to work. I waited with baited breath and finally heard the words I had been waiting for, “I can taste the saline!” Valen exclaimed. A wave of relief came across me and my eyes welled up with tears, the IV was a success.
Many of us who care for PKD patients have had similar stories and emotions as we bear witness to the lives of those living with this disease. The difference for us, in comparison to medical professionals, is it’s personal for us – these are our loved ones, our partners, our siblings, our friends. For them, it is twice as difficult; they endure the physical aliments and see the ravages this disease takes on us as it is printed on our faces and weighs on our emotions.
To help endure all that we go through, Valen and I are very open with our emotions. I know when she is upset and frustrated by what she is going through, as well as what she perceives she is putting me through. I am very quick to respond that it is a privilege to be able to be of some support in what she is going through. We chose each other to share this life together, both the stunning triumphs and the days that are a little cloudier. If she has the ability to gain strength from my presence, or positivity from my spirit, then I am more than happy to provide it. This is not always easy-going and both of us can become tired of watching what the other has to go through. We are sympathetic, compassionate people, but we would not change who we chose to share this life with.
The best advice I can give to those going through the PKD journey, caregivers and patients, is to be honest and open with your feelings, and do your best to control the only thing you have any control over: your attitude. The way I face the challenges of being a caregiver is rooted in a simple quote that hung on an old piece of paper on our refrigerator growing up. It was a quote my mom’s father had instilled in her and that she instilled in us:
PKD Patients: How do you keep the lines of communication open with your caregiver and what do you do to let them know you appreciate them?
PKD Caregivers: How do you keep the lines of communication open with your loved one battling PKD and how do you show your appreciation for your PKD patient?
You two are the epitome of a loving, supportive relationship. I am privileged to know you both and be inspired by your example. I love how you choose to deal with hard things openly and honestly and are always looking for the first opportunity to find humor and hope in situations. You brighten any room with your depth of experience about what really matters in life…you’ve beaten everything that’s been thrown at you without an ounce of bitterness. You two are amazing!!
As a care giver to my 24 year old daughter who was diagnosed with PKD when she was just 2, and received a kidney last year from her dad, I try to appreciate what I consider the “silver lining” of hard situations. The amazing, dedicated people I have met on this journey (like Noah and Valen), the very close relationship I have with my daughter from all we’ve been through, and I have a heightened appreciation for the present moment. I don’t put experiences off and I look for things to celebrate every day! I cultivate an attitude of gratitude (some days it’s easier than others for sure)…my daughter was born with a disease that caused her kidneys to fail at a young age but she has the miracle of a transplant and is getting married this summer. 🙂 Grateful! I bow to the relationship you two have~ your wisdom and example have directly benefitted me and my family. Thank you for blessing this community with your advocacy and special brand of support. Keep on lov’n life Noah and Valen…you are making it brighter for all of us!! Love you both~ Julia XOXO
Dearest Julia,
I have read your comment several times because I cherish your sentiments and they mean so much to me. You have a way of expressing yourself in such a genuine and positive way that touches my heart greatly. I just adore you and your family! You totally ‘get’ us and our lives are so much richer since you’ve become a part of our lives. I admire you and your family and how you are using your journey to help others! You are perfect for the role of Chapter Coordinator for the Sacramento Chapter and will make a huge difference and touch the lives of many. I’m grateful to be one of the lives you’ve touched. Thank you for your friendship and for supporting and loving us. We love you! XOXO
Thankyou for this post Noah. It is so important that the caregivers be heard from, in this journey we are all on together. You are an amazing husband and the part of that role that is caregiver, is also amazing You do have a wonderful loving marriage and I am so proud of you both, because I know all too well, just what a toll this disease takes on everyone in the family. Its just so hard seeing your loved one suffering so. I have said many times, that I’m so glad it’s me that’s sick and not Doug or the kids, because I don’t know how I would / could handle that. I love the quote re ATTITUDE and agree completely. As a patient I have, once I got over the shock of diagnosis , tried to have the best and most positive attitude I can have, to live my life to the fullest and to cherish each and every day. Sending lots of love to you Noah and thankyou for taking such good care of My Favourite American sweet friend
Thank you so much Jan! Noah appreciates you reading his post and for your sweet words. I say the same thing, that I am a much better patient than caregiver. I guess we are just used to being the patients. I admire your strength and how you lead your life so positively despite all you have endured. If only we could live closer, but you are always close at heart. You and your family mean so much to me! XOXO
You two are amazing! You are the true definition of soul mates!
Thank you Crystal! That means a lot coming from you…someone that provided great support during my darkest days! I will always remember and appreciate all you have done for me and my family. I love and miss you! xoxo
I believe with you that attitude is everything in this day to day battle with PKD. My love looks at his dialysis as a “part time job”, or “time for the oil change” and just lets it be what it is. A miracle that is given to people in kidney failure who are lucky enough to live in our times. After two failed transplants, that option is not meant to be for him…for now…but in his eyes he will be the PERFECT candidate when that new treatment comes along for people with his antibody problem and he can’t wait to see what it is! He will be like the little kid in the first row at school with his arm waving in the air saying “pick me!” In the meantime, he just celebrated 12 YEARS on dialysis. It is LIFE and it is good!!!! We laugh, we love, we enjoy and celebrate.
Hi Tina,
Ironic, as I have said that my health issues are like a “part time job.” I very much admire your positive outlooks on all that you both endure, it is inspiring. Did your husband have plasmapheresis performed to help with his antibody problem? An amazing accomplishment to undergo dialysis for 12 years. Wishing you continued happiness as you navigate this journey with the wonderful outlook that you share together. Hugs!
So touching and inspiring. Especially the part when you write ” it is a privilege to be able to be of some support ” so profound and a true testament to your unconditional love for Valen. I am so thankful that I met you both. Thank you for writing and sharing with us all.
Hi Mary,
Noah and I both appreciate you reading his post and for your sweet sentiments. I am so grateful for Noah’s love. He is an amazing husband and caregiver! I think the best part is that we both know how lucky we are to have each other and appreciate our love greatly. We are both very thankful that we met you too! Hope to see you soon and hope you are having a beautiful holiday season. Hugs!
Valen is an amazing PKD Warrior for all suffering from this disease. We’ve been blessed with her compassion, knowledge, and her never ending desire to spread the word and raise awareness. The PKD world has benefited greatly having her on our side. She’s special that’s for sure, put on this earth, and given this disease (unfortunately), to encourage others, enable others to see there is hope. I am so very happy she’s been blessed with you, Noah, to see her through it all. The PKD world needs her, and you. She’s been through so much more than most PKD patients have and yet endures. NEGU, Valen and Noah, and thanks for always being there with encouraging words. So happy you have an amazing warrior to help you endure.
Wow, Sue, what amazing and touching sentiments. Please know that genuine support like yours fuels me to keep fighting and sharing. Your heartfelt thoughts touch me greatly! Thank you for your continued support and friendship!
Noah, thanks for sharing I have pkd and I don’t have a good support system so it’s very hard for me, I take comfort in reading about your journey. Valen you are my warrior princess #wewillwinthefightagainstpkd
Hi Paige,
Thank you for reading this blog and for your sweet comment. You sharing your sentiments led me back to reading this older post, and I appreciate that. I am so grateful for Noah’s support and I hope you find your “Noah” in life. Sending love and hugs! #PKDWillNotBeatUS
My boyfriend has PKD and currently undergoing dialysis. He’s the father of our 3 beautiful children, Emily -10, Alisia – 8 and Silas – 13 months. I work 8-16 hours as a psychiatric Technician at a mental hospital so there are many days where Im extremely stressed and exhausted. But I thank God every day for giving me such a wonderful, loving, and hard working man. He keeps me sane whenever I feel overwhelmed. I try my hardest to help him cope with this disease as he helps me cope with life. I wish I could help him more but work makes it difficult since I’m the breadwinner for our family. So reading your story gives me a lot of hope and encouragement to get me through this tough time in our lives. Please check out our gofundme site and share if you can. We’d greatly appreciate it. It’s under help David become a PKD survivor.
https://www.gofundme.com/5nlfxq8?pc=sms_db_co2876_v1&rcid=ad5a19d74c58490eb99563600826f711
Thank You
Hi Vanessa,
Thank you very much for sharing your path with PKD. I’m so happy that my husband’s post gave you hope and encouragement. I can’t even imagine the stress surrounding you with work, raising three children and supporting your husband. You’re an amazing caregiver and please know that you are helping your husband more than you’ll ever know. Keep hanging in there and make sure to take care of yourself along the way. I hope your husband receives the gift of life very soon and you can get back to enjoying life like you all deserve. Hugs!
Thank you so much for your wise words. Over the last five years we have watched my father in laws disease progress and recently lost him due to multiple organ failure. Now I am faced with what the future looks like for my husband and I as he was just diagnosed at the age of 38. His dad was not forthcoming about his progression and so even though we have seen one family member with the disease we still feel like there is a lot of unknown. I hope we can proceed through this as graciously as you have, and support each other with love and positivity.