Meet Valen

I am a passionate advocate for organ donation and polycystic kidney disease (PKD) with a sincere zest for life and boundless gratitude for this extraordinary journey. I was diagnosed with PKD at the age of 10 which led to a challenging childhood full of hospital stays and cyst bleeds. In addition, I spent almost a year in the hospital as a teenager, where both of my kidneys were removed, I was on dialysis, endured severe pancreatitis, received more than 70 blood transfusions and thankfully at the age of 19 received a life-saving kidney transplant. This second chance restored my health and gifted me the opportunity to find my purpose in life, turning my health challenges into something meaningful and being a role model for others that I wish I had when I was younger. In my early 30s, PKD affected my liver and I became very ill again. Thankfully, at the age of 35 I received a life-saving liver transplant and the ability to continue doing what I love - helping others and living life to the fullest.

Shortly after my first transplant, I discovered my love of public speaking and have shared my story at more than 100 events across North America. I’ve coordinated educational and fundraising events and helped raise over $1,300,000 for polycystic kidney disease research. I have written over 250 blogs and articles for various organizations, magazines, and journals, sharing the challenges and joys of this journey to helped educate, empower and give hope to others that they are not alone.

I’ve had over 30 operations, have more than 65 inches of scars crisscrossing my body, been a patient for 35 years and an advocate for 20 years. I am now 20 years post-kidney transplant and four years post-liver transplant. My journey has been extraordinarily challenging, yet extraordinarily beautiful. It has given me a powerful vantage point and perspective on life, knowing the importance to appreciate the little things and that being alive is a gift and something to celebrate. I know and have empathy for the challenges others with chronic illnesses face (as I also have epilepsy and chronic pain from severe scoliosis as a child and Harrington rods placed along my spine), have compassion for what it’s like enduring living in the “waiting zone” prior to receiving a transplant and the amazing life that comes post-transplant. This difficult at times yet very joyful journey takes work, but it is worth fighting for.

I strive to set a positive example that one can live a fulfilling, productive and joy-filled life post-transplant, the importance of being your own best advocate and encourage others to say YES to organ donation. I hope you enjoy taking a look around my site and that it is a positive place for you to gain knowledge and inspiration no matter what challenges you may be facing in life. I encourage you to connect with me on my social media accounts. I really look forward to hearing from you. Cheers to the gift of life and living our best lives!

Almost everyone on my mother’s side of the family has suffered from polycystic kidney disease (PKD). The oldest to live in my maternal family is my mom at 66-years-old. Everyone else passed away from PKD complications before the age of 53. My older brother just received a kidney transplant and my mom still has her original kidneys and her health is well with no need to endure dialysis or transplant, yet. Although I was told that I would follow the same path as the rest of my family and not be affected until my late 40s to early 50s, my journey wound up evolving the complete opposite than the rest of my family as I am the youngest in my family to endure such severe side effects from the disease.

I was diagnosed with PKD at the age of 10 when I went to my pediatrician for a check-up and my blood pressure was sky-high at 160/140. I was sent for an immediate ultrasound, and cysts polluted both of my kidneys. From age five I battled through seizures, scoliosis surgery and countless cyst bleeds. I spent a year in the hospital when I was 18 where I had a bilateral nephrectomy (removal of both kidneys), pancreatitis (fed by a picc line and unable to eat or drink anything for six months), endured daily dialysis, a congenital anomaly (bleeding vessel in my stomach), and received more than 70 blood transfusions because of all of the cyst bleeds. My kidneys were working 60%, but had to be removed because doctors could not stop the cyst bleeds. I was too sick to be placed on the transplant waiting list but needed a kidney to survive. A close family friend, Sally Robertson, was a match and world-renowned transplant surgeon, Dr. Robert Montgomery, took the risk of performing the transplant and at age 19 on August 13, 2002, I became the first in my family to receive a life-saving kidney transplant which took place at Johns Hopkins Hospital. Seventeen-and-a-half years later, that same kidney is doing great!

If you had asked me about my PKD journey several years ago, I would have told you that I climbed that mountain and conquered it when I received my kidney transplant. I never fathomed this devastating disease would come back into my life, full force, many years later. I knew PKD could affect other parts of my body, causing aneurysms, diverticulosis and polycystic liver disease. However, my scans for these potential issues were always clear and I was grateful my liver remained unaffected by PKD.

In Fall 2016, I started to get sporadic bouts of sepsis. As a transplant patient with a suppressed immune system, I rushed to the emergency room every time, with tremors, a fever, abdominal pain and nausea. I had a high white blood cell count and bacteria in my bloodstream, but all other lab tests were fine. I was given fluid and IV antibiotics for a few days, and sent home never knowing the cause. 

Over time these mysterious infections worsened. I worked closely with my doctors, doing every test possible to find the source of infection. After several more sepsis episodes, a PET scan was approved and my liver lit up leading doctors to the source of infection. In the meantime, I kept getting sick with sepsis and was enduring daily IV and oral antibiotics and by 2018 needed a life-saving liver transplant.

My doctors did not think I would survive the wait time for a liver in my home state of California, so my hepatologist suggested I get dual listed. My husband, Noah, and I temporarily relocated to St. Louis, MO and on August 4, 2018 I received a life-saving liver transplant at Barnes-Jewish Hospital.

Upon pathology of my liver, it was determined that I did not have primary sclerosing cholangitis (PSC) as I was originally diagnosed with, but rather polycystic kidney disease (PKD) had caused bile duct plate malformations with von meyenburg complexes leading to the liver infections, which caused the sepsis episodes and the need for a new liver. My native liver did not have one cyst on it!

Now as a 40-year-old dual transplant recipient, I am more passionate than ever to share my PKD and transplant journey with the hope of educating and inspiring others and letting them know that they are not alone. In my 20 years of being active in the PKD community, I have never met another person who had their kidneys removed when those organs were working 60% and needed a kidney transplant because their cysts would not stop bleeding, or a person who needed a liver transplant because of the issues that I had with my bile ducts. I had genetic testing done and it is confirmed that I have ADPKD, PKD1 gene. To think that all of these unique manifestations occurred in the most common form of PKD shows that I can’t be the only one experiencing these life-threatening complications and it underscores the vital need for my story to be shared for patients and the medical community to learn from. My threefold mission is to increase the public’s understanding of the importance of research into kidney disease, to help spread awareness of PKD, and to promote organ donation. Because so many members of my family grapple with PKD, or have died from it, I have developed a strong connection with those who endure the pain and suffering caused by PKD. I hope by learning more about my PKD journey that you will be reassured that you are not alone and that you can get through this. Believe in yourself! I believe in you!

Not everyone gets a second chance in life, nor do they get the opportunity to be a part of a miracle. I’m blessed to have been able to experience this twice. Receiving a kidney transplant at 19-years-old from a living kidney donor and then a liver transplant from a deceased donor at 35-years-old has been a rollercoaster ride, from the hardest days of my life to the most joyful ones. Having the perspective of enduring the transplant process as a teenager and now as an adult has taught me so much in regards to life, love, being our own best advocate and knowing what we are fighting for. 

I was 18-years-old, with both kidneys removed and surviving on dialysis. We are fortunate to have a lifeline like dialysis while waiting for a new kidney. I was too sick to be placed on the transplant waiting list, so I needed a living donor to survive. Thankfully, Sally Robertson was a wonderful match and stepped forward to be my kidney donor. When you have a living donor, you have a bit more control of things as you can schedule your surgery. After almost a year in the hospital and dealing with complications from PKD since I was 10, my kidney transplant restored my health at the age of 19 and has gifted me with the past 20 years of life – it is overwhelmingly remarkable what I have been able to accomplish and experience thanks to the miracle of transplantation.

When I needed a life-saving liver transplant in my 30s, it was a totally different scenario. There is no lifeline when you need a liver, like there is with the kidneys. I went through the transplant evaluation process and my hepatologist did not think I’d survive the wait time in CA. So, I got dual-listed and had to temporarily relocate to St. Louis, MO in order to get a liver transplant at Barnes-Jewish Hospital. I endured the exhausting transplant evaluation process twice and fully know and appreciate what it is like to be deathly ill and wait for “the call.” I have so much empathy for all of the unknowns experienced surrounding transplant and what it is like to live in limbo, what the “waiting zone” feels like and what it is like to try and plan for “the call” when you have no idea when it will come. Add to that, the varying emotions that come when receiving an organ from a deceased donor.

I also understand the complications and challenges that come when being a transplant recipient. The gift of a transplant is not free. It comes with responsibilities and side effects, but we are alive thanks to our selfless donors and the miracle of transplantation. It is important that we honor our gift and donor by taking the best care of ourselves and living our lives to the fullest.

I feel honored to be on the other side of transplant--twice--and to not just be surviving, but now thriving! I continue to be in awe by the incredible transformation that receiving a transplant can make in not just the recipient’s life, but all of the other lives touched by that recipient.

Second and third chances in life are rare and I strive to make my donors proud through my actions and the light, joy, knowledge and hope I spread throughout this world. By taking the best care of my health, helping others, and living life with passion, positivity and purpose. I hope by learning more about my journey and the extraordinary impact that transplantation has had on my life that you will gain insight of how grateful recipients are, and if you are not an organ, eye and tissue donor that you will consider becoming one. There is no greater legacy you can leave than hope and joy for a stranger in need. It will be cherished and bring unconditional joy and gratitude to the recipient(s). If you are already a donor, thank you! Decisions like yours restore life, not only for the recipient, but for the family, friends, loved ones, and everyone that person touches. There is no greater gift than the gift of life!