Some things are too grand for the mind to comprehend. For example, I am having trouble processing that my 14-year kidney transplant anniversary will be two days from now. It’s hard to think that, 14 years ago, I was basically on my deathbed. There were, however, a few key people who believed I would survive – including myself – who wanted me to live and helped make that happen.
Life is full of challenges, triumphs, pain, joy, sorrow and milestones. It is a beautiful work of art full of peaks and valleys that will include happy events and sad ones, good health news and bad news, too. The sooner we embrace the ebb and flow of life, the more enjoyable it will be.
In honor of my 14-year kidney transplant anniversary, I want to rewind to the year I received my transplant and recall major events that have taken place each year since, both good and bad, because life is a beautiful blend of triumph and adversity.
2002 – Both of my kidneys were removed. I was on dialysis and received a kidney transplant.
2003 – I started working full time.
2004 – I founded the South Central Pennsylvania Chapter of the PKD Foundation and became the Chapter and Walk Coordinator.
2005 – I discovered my love of public speaking after sharing my story at the PKD National Convention in Anaheim, Calif. Since then, I have shared my story at more than 85 events across North America.
2006 – I organized my third consecutive Walk for PKD and was the co-chair for Campaign for a Cure, where I shared my story and helped to raise more than $1 million for PKD.
2007 – I was severely injured as a passenger in a motorcycle accident.
2008 – My biography, “My Favorite American,” by Dennis McCloskey, was published.
2009 – I was diagnosed and treated for Lyme disease.
2010 – Noah, my then-boyfriend, and I took a month-long trip and moved cross-country from Pennsylvania to California. I also had my gallbladder removed after arriving in California.
2011 – My childhood seizure disorder returned, and Noah and I got married at Glacier Point in Yosemite National Park.
2012 – I was selected as one of Donate Life’s “12 Inspiring Women” for their “20 Million in 2012” campaign, and helped raise awareness for organ donation by speaking at various events, participating in a photo shoot in Los Angeles and interviewing with the media.
2013 – A disk in my lower back herniated. It has been a marathon of chronic pain ever since. On the upside, our family became complete when a stray cat, Mister KaliKat ManCoon, “rescued us.”
2014 – I had back surgery to remove the part of my lower back disk that herniated.
2015 – I had the honor of being asked by Otsuka to share my PKD journey at their event to celebrate the launch of tolvaptan, the first treatment for PKD in Canada. I also had skin cancer removed on my shoulder.
2016 – Noah and I are in the process of buying our first home in California and we are so excited!
As you can see, whether facing PKD or other challenges, we all have good and bad days; great years and challenging ones; celebratory times and others of sadness. The important thing is to get up every morning, face the challenges before us and make the best of our lives. My life is living proof that life goes on amidst the deepest valleys of sorrow and the highest peaks of joy. I only see one option in life and that is to keep going!
Thank you to my kidney donor, Sally Robertson, for making these past 14 years possible! Cheers to many more years of life and living it to the fullest!
What are some of the greatest moments you like to celebrate? What keeps you strong and helps you overcome life’s challenges?
Thanks for your encouraging account Valen. Much depends on our attitude towards our health issues. A positive one seems to lighten the situation a bit. Strength to you and Noah.
Absolutely! I firmly believe our positive mindset is the most important part of our journey to good health. Thank you for your kind sentiments.
I’m thrilled that your 14 year anniversary is almost here! You’ve come a long way, and I am always so happy to see your beautiful smile.
My precious kidney was donated to me by someone who was in an accident. It has been three weeks now, and much has happened. I got the call early July 20th. I was told to be at the hospital in 20 minutes. I was ecstatic! Two days after surgery I was discharged. A week after that I became violently ill. It was determined that I had a UTI and a blood infection.
The doctors finally succeeded in finding an antibiotic to combat it. I receive daily infusions for three weeks. My creatinine is finally coming down, and I’m beginning to feel better! I even got my catheter, stent, staples, and dialysis port removed!
Things are definitely looking up. 🙂
Have a wonderful anniversary celebration!
I am delighted to hear from you and ecstatic to know you received a transplant! Yipeeee yay! Thank you very much for sharing this monumental news with me! I’m so sorry things started off scary with getting sick, but thrilled you and your kidney endured the scary hiccup and that things are “looking up.” Take good care of yourself and please keep in touch on how you are doing.
My anniversary celebration was amazing! So excited you will now be joining me in having transplant anniversary celebrations too! ✨
Thanks Valen! Your inspirational,real life stories are the best!
Thank you so much Maureen! I greatly appreciate your support and reading my blog!
HAPPY 14th TRANSPLANT ANNIVERSARY
Every year is such a gift and you have proven over and over , how grateful you are for that gift by all you do . Continue to LIVE LOVE LAUGH Thankyou Sally from a very grateful recipient as well xo
Thank you very much my dear, beautiful friend! My gift of life has gifted me with so much that I am thankful for, like your priceless friendship. Big love to you and your family!
You truly are an inspiration! Thank you for taking the time to tell your story and inspire us. I was diagnosed with Polycystic kidney disease at age 26, but I have been lucky enough that I don’t have any problems yet ( I’m 54 now). However, I have seen multiple family members go through dialysis and died from this terrible disease. Happy 14 year anniversary and may God grant you many more!
Thank you so much! It is an honor to share my journey!
Wow, fantastic that you are 54 with no problems. With this “family” disease, it opens us up to not just dealing with it personally, but seeing our loved ones endure it too. I’m so sorry that you’ve seen multiple family members endure this ugly disease. I wish you many more healthy years!!!
First of all, may I congratulate you on your 14th year with a kidney transplant. You have had many setbacks but you always come out a winner! A true fighter.
I too have PKD but fortunately I have two friends who are great matches. How lucky am I!
I was amazed at how many friends and strangers came forward to donate once the word got out. The word was spread by a sign outside our store where my husband wrote “KIDNEY WANTED. TYPE O. INQUIRE WITHIN “. Needless to say, that sign got people’s attention.
We haven’t scheduled the operation yet because my kidneys are still functioning at about 20%. I feel fine now but I know that will change.
Best regards, Kiki Bernard
Thank you very much for your anniversary wishes and encouraging sentiments!
Two matches is fantastic! Love the sign you created. I commend and admire you taking the initiate to think outside of the box and get creative with spreading the word that you need a kidney. People don’t know what we need unless we ask and I truly believe people want to help, we just need to let them know how they can.
I too had two friends who were great matches. I’m very excited for you. Please stay in touch on how you are doing and I’d love to hear from you after your transplant surgery! Wishing you the best on your PKD journey as you get closer to receiving your new kidney! 🙂
My transplant happened on Jan.17 and everything went exceptionally well. My donor, which I now call my kidney sister, is almost 100% and I’m about 85%. Hopefully, I will continue to improve but for now I feel great!
Best regards, kiki
Oh Kiki, you just made my day! Thank you SO much for sharing this fantastic news. Wonderful that your donor is almost 100% and that you are headed in the right direction toward 100% as well. The gift of life is a miracle and I’m thrilled that you received this second chance. I wish you many beautiful and healthy years!
Happy 14th Transplantiversary! It surely has been an interesting journey for you! But now you are on a more positive, inspirational journey! 🙂 Thanks for being such an inspiration to the rest of us who haven’t even gone through half of what you have been through!! Thanks for doing all you do!!
Thank you so very much my dear friend, Lana! Friendships like yours fuels my passion to keep sharing my journey. It is a true honor.
Hi Just had a transplant in June after 7 years of dialysis. The last 3 years have been really rough. I had my kidneys removed because they got so big a little over a year ago. I had just about given up and I was so sick, I felt like I was going downhill and dying. I wanted to check into a hospice and say goodbye. After 7 years, I gave up on believing I would get a transplant. Then I thought of the mustard seed. The bible says if you have faith the size of a mustard seed, NOTHING will be impossible for you. A week later I got a really great match for a kidney. I feel incredible and I got my life back. I am very grateful. A bottle of mustard seeds sits on my night stand to always remind me.
Congrats Valen on 14 years. You have been a positive inspiration to me through all the years. ❤️
Thank you very much Deb! Hearing this warms my heart, thank you! 🙂
Wow! That is what I said out loud to my husband after reading your comment. Thank you for sharing your incredible story, which exemplifies the extreme importance and power of hope, faith and believing. My heart hurt knowing what you endured and that you wanted to check in to hospice. I am overjoyed with the outcome of you receiving the gift of life and knowing that you have your life back. Wishing you a beautiful journey ahead with your new lease on life. Transplantation is a true miracle! I love that you have a bottle of mustard seeds on your night stand. From here on out, when I see mustard seeds I will smile and think of you!
To My Heroine,
Thank you for sharing your journey! I needed this today! As always you rock my friend.
You’re the best, Liza! Thank you for your sincere support, it means more than you will ever know! Hearing that you needed this = mission accomplished for me writing this post. 🙂 xoxo
Woohoo Happy 14th Kidneyversary!!!! Wishing you all the very best and that you continue to celebrate many many more Kidneyversaries;) thank you for everything you do to raise awareness about PKD and organ donation. Big hug♡
Thank you SO much dear sweet Noelia! I’m very grateful for this journey and honored to help raise awareness of PKD and organ donation! I can’t wait for the day you tell me you are receiving a transplant! Big hugs! xo
Thank you for your uplifting journey. I too have PKD and am 9 years post transplant with a creatinine level of .50 so miracles do happen. I hope all those who are waiting receive their miracles too.
Thank you for sharing your encouraging and fantastic sentiments. Congratulations on being 9 years post transplant and with an extraordinary creatinine of .50!!!!!! Your kidney is definitely happy in its new home! 🙂 Wishing you many more healthy years with your miracle!
Thank you for sharing your story. My nephew who is 25 years old and has PKD. He is very resistant to joining a group he doesn’t like to talk about his condition. His nephrologist is now prepping him for a fistula and hemodialysis in the near future. I am a registered nurse and only see the bad side of dialysis and kidney transplant. Reading your story gives me hope that he can have a normal life. I am also sending your story to my sister who is very depressed and feeling helpless I hope it will inspire her as it has inspired me.
Thank you for reaching out and sharing your sweet sentiments! It is an honor to share my journey. We all handle this disease differently and I can understand your nephew, at 25, being hesitant to talk to others. Some of us are outspoken and others are quiet about our disease. I was diagnosed at 10 and on dialysis at 18 and a transplant at 19. I wish I had support when I was younger, but I didn’t know it was out there. Your nephew is welcome to reach out to me should he want a younger person to talk to. Not sure I’m so young now at 33 😉 but I did deal with PKD at a very young age. He can email me at email@example.com.
This definitely isn’t a pretty disease. I’ve endured the ugly, but there is hope and one can live a fulfilling life post-transplant and with PKD!
I’m sorry your sister is feeling the way she is and I hope my blogs will help inspire her. If there is any way I can help you, your nephew, sister or family, please let me know. Wishing you and your family the best!
Thank you Valen for sharing your journey – it has given me hope for my beautiful son Taylor who as my sister Laura said – doesn’t like to talk about his PKD…I noticed all the post were from females ( males are not very open ) Taylor was diagnosed at age 13 and has had a rocky road… now 12 years later he is facing dialysis and transplant in the near further.. Your story has given me hope for his future – one I was not sure of… Thank you to my sister Laura for sharing your site with me and for her support … now I must dry my tears and think of the mustard seed and God promise to care for us..
Wonderful to hear from you. I’m grateful your sister commented on my post and also that she shared my blog with you. Please see my response to her comment above. Your son is welcome to connect with me if he’s interested. I’ve written over 190 posts in case you want to browse through them and read other ones. If you go to pkdwillnotbeatme.com, you can browse through all of them. I have had comments from men, but definitely more from women. So happy my journey has given you hope. Hope, a positive mindset and the love that surrounds me were the biggest things that helped keep me alive through all I’ve endured because of PKD. If I can help you and your family in any way, please let me know. Wishing you and your son all the best!
I have been a member of PKD for 34 yrs. It was formed when nobody knew what PKD was I mean even some Drs. I am post transplant going on 9 yrs. thanks to my twin sister we were 58 at the time,perfect match go figure. At one time they wouldn’t take a donor that old, we have come a long way. I row in my single with the PCRA crew team and expect to race in the Head of the Charles in Sept. Thank you all who went before me, especially my Mom. We also have a quad in the boathouse which was purchased in my name when I had the transplant. Its called the (Kid Baynon) with the PKD decal large on the bow.
We have come a long way and hearing stories like yours is inspiring. Thank you for sharing and congratulations on being 9 years post transplant thanks to your awesome twin sister! Keep rowing and enjoying life! Good luck in your upcoming race!
I have PKD and received my transplant t over 12 years ago. I know exactly how you feel,congratulations
Thank you! Congratulations to you, too!!! 🙂 Every day, month and year deserves to be celebrated. Cheers to many more healthy years.
I just found your post and it was very encouraging for me! Congrats on 14 years and here’s to another 14 years! I don’t know if it is my personality or paranoia, but whenever I get sick, or feel sick, I start freaking out a little thinking that I’m going to get super sick or lose the transplant. I felt your ups and downs while reading this as I’ve had quite a few medical issues beyond the transplant. Anyway, just wanted to say thanks for writing this and congratulations again!
You’re so welcome. It is an honor to share my journey. Thank you for the congratulations on my anniversary. So glad you found my post and enjoyed it! It is so natural for us transplant recipients to carry the thought of wondering if or when we will need another transplant. I try my best to focus on the present and know that I’m doing my part in taking the best care of my transplant – taking my meds on time, being my own best advocate, regular doctor appointments and routine labs, remain positive, hopeful, grateful and trust life will unfold as it should. This provides me comfort during the challenging and uncertain times. Cheers to this beautiful life and second chance we’ve been given. Wishing you all the best!
Today is my 33rd kidney transplant anniversary. I remember just like it was yesterday. I had just taken my son to school (his first Halloween in Kindergarten). When my younger son and I got back home I received the call that they had a kidney for me. It all was so hard to process as I had just been put on the list two weeks prior. I hadn’t even started dialysis as of yet. But God is good and I received my kidney and it is still going strong today.
WOW! This is incredible! Thank you so much for sharing, Sandy. A huge congratulations on reaching this amazing milestone. It gives me great hope as I am around 16 years post kidney transplant and tomorrow will be 3 months since my liver transplant. I’ll never forget how it felt to get “the call.” So fantastic that you were only on the list for two weeks and were able to avoid dialysis. Your kidney is clearly happy in its new home! 🙂 Cheers to many, many more healthy years to come. Hugs!