Three years ago today, Noah and I woke up in Colorado Springs, Colorado. Our Volkswagen station wagon was filled with the supplies we needed for our month-long cross-country journey and move from York, Pennsylvania to Auburn, California. It was day number five on the road. A new day. A new horizon of hope.
For two years, we planned, saved and did all we could to prepare ourselves for the biggest decision we had made thus far in our lives. We had spreadsheets that calculated all of our expenses and savings. A three-month deposit was placed on a townhome that was awaiting our arrival on June 1, 2010. Everything we owned outside of what was in the back seat of our car was placed in a POD (self-storage container) and shipped cross-country. Saying goodbye and pulling out of my parents’ driveway was heart wrenching. The snapshot in my mind of my mom, dad and their dog standing in the driveway as we pulled away will forever be embedded in my memory.
During our month-long adventure to our new home, it was hard to believe what we were doing, seeing and accomplishing. Noah and I were leaving behind our family, friends and everything we knew to follow our dream; our dream to travel, explore, and seek adventure and to not live in one place all of our lives. There were a lot of ‘what ifs.’ However, the way our trip went and how the last three years have unfolded, we know we are where we belong. We have learned what two people can accomplish with a lot of planning, hard work and love. Also, how amazing it is how one can embrace change when you set your mind, heart and soul on an aspiration. I am proud of this accomplishment, because I believe it shows how one can live a fulfilling life post transplant and with an incurable disease like PKD.
“You never know how strong you are until being strong is the only choice you have.” – Anonymous
Having something to look forward to, setting goals and achieving them have played a vital role in sustaining my positive attitude and outlook on life. Each new day is a beautiful gift that begins with a new horizon of hope. Playing a role in helping to find a treatment and cure for PKD has been a significant part of my life since I learned of the PKD Foundation in 2004. It has been a beautiful thing to watch the Foundation grow and achieve greatness as I myself have grown as a person.
Meeting PKD survivors and learning their amazing stories has given me strength and encouragement. Sharing our stories is such a powerful tool to help each other, to help raise awareness and help raise funds to support research. Our hard work has led to extraordinary results, such as the recent announcement by Otsuka Pharmaceutical Co. Ltd. that the U.S. Food and Drug Administration (FDA) accepted for “priority review” the company’s new drug application for the potential use of tolvaptan to treat ADPKD. If approved, this will become the first pharmaceutical therapy for patients with ADPKD. This is fantastic and extremely exciting news. Thank you to all of you who participated in the clinical trials and helped raise funds which gave the Foundation the opportunity to fund early pre-clinical animal testing of tolvaptan. Hopeful news like this fills my heart with joy as I can feel that we are getting closer to finding a treatment and or cure for PKD. What is remarkable is that we are all playing a part in helping to make this happen. We are changing the future, together.
From my cross-country journey from PA to CA to my journey of living with PKD, I have learned so much about life and myself. We can accomplish great things with the support of one another and when we join together. Following your dreams and achieving them takes hard work, but is attainable. You are only as big as the dream you dare to live. My dream is to live to see the day a treatment and or cure is found so that no one will have to suffer the full effects of PKD and endure the same trials and tribulations that ourselves and all of our families have. The PKD Foundation is making great progress, but needs our continued support and help to keep the momentum going.
My heart is telling me that with each new day, with each new horizon of hope, we are really getting closer to the day where we will fulfill our mission to ENDPKD. In addition to support, inspiration and hope, our mission requires financial resources. This is why several generous donors have offered to match donations made by individuals between May 1 and June 30 (up to $75,000).
No matter what role we are playing in the fight to ENDPKD, we must stick together, NEVER LOSE HOPE and remember, PKD WILL NOT BEAT ME.
When I found out about the new drug I nearly cried. I have just been accepting PKD as a normal part of my life and never really thinking much else of it. I knew it was going to get worse as it goes on, but this new medicine could change my future! I’m only 21 and my cysts are no problem to me yet. This is truly a blessing! I can’t wait to see what the future holds! #ENDPKD
Hi Olivia,
You are so young and my hope is that all of this research will lead to a treatment and or cure so that those around your age and future generations will not have to deal with the full effects of PKD. Never lose hope! Wishing you all the best!
Hi Olivia,
I am so glad to hear that you are healthy and well. I too can’t wait to see what the future holds and wish with all of my might that a treatment and or cure is found as soon as possible. I hope your health continues to stay stable and well for many, many, many years. 🙂
I am reading this sitting outside of the CT room that my 19 year old daughter is in having her final test for donor evaluation. She has stepped in and taken my place in our family journey. I found out last week that I can not donate to my husband for medical reasons. Our hopes were so high when we found out I was a match. We knew she was a match too but I had comfort in the thought that I could donate to my husband because one day our seven year old son will need a transplant. I struggled with giving up my kidney to my husband because my son may need it. Knowing that she could potentially be her brothers donor made my decision easier. Well…..here we are. She is so wonderful for offering such a gift but as a mother, I am a mess. News of Amy treatment is some light in this journey. Thank you to everyone who shares their story. I read them all.
Hi Melissa,
Wow! It was so moving to read your comment and imagine what stage you are in and that you were sharing your story with us the very seconds you were experiencing such emotion. Sending lots of positive thoughts, strength and love your way to you and your entire family! Everything happens for a reason and wishing you all the very best!
I participated in the Halt PKD study, it is wonderful to see some things coming from all the studies out there! I hope that everyone will remember that without us participating in these studies we can not find a cure for or children, grandchildren and so on. There will be a Cure and with all the help that we can give it will be soon! Thank you Valen for all you so and keep up the good work!
Hi James,
I can’t thank you enough for your support and all you and your family have done and continue to do which is helping to get us closer to the day our dreams will come true…the day a cure is found. You and your family are so special. Thank you very much for participating in the Halt PKD study.
Today，in hospital，the doctor told me that there is no cure or treatment of ADPKD ，and do not consider to have a baby.I don’t remember how many times I heard these words.I feel helpless and hopeless.But when I read the news ：Tolvaptan Special Update: Accepted for Priority Review by FDA,I see the hope again.I hope that one day PKD Foundation will come to China，or we will have an organization like PKD Foundation.
Thank you Valen.Enjoy your life.
Hi Jie,
I am so saddened to hear of the news that you received in the hospital. What does this mean for your marriage? Please do not lose hope. There is so much hard work and research going on which is getting us closer to a treatment for PKD. I wish that you had a chapter or a group for support in China. Please know that you always have support here. Sending lots of strength and love your way.