“Valen! Look at this!” Dr. Robert Montgomery exclaimed.
My world-renowned transplant surgeon cradled the chalk-white kidney in his hands and seconds later, the mustachioed, rock ‘n’ roll music-loving doctor transformed this lifeless organ into a beating, crimson red, living organ. Blood squirted up like a small fountain. A concerned Dr. Montgomery looked up at me and asked, “Are you okay?” I assured him I was fine.
I was witnessing a miracle and experiencing one of the most surreal moments of my life. On October 2, 2007, I had the opportunity to see what my body went through while under anesthetic when I received my kidney transplant on August 13, 2002. I have not only lived the miracle of transplantation, but I have also seen it.
I stood on a stool at the head of the patient’s bed in Carnegie Room 724, aka Operating Room #4 in Johns Hopkins Hospital in Baltimore. I had been invited by my transplant surgeon to witness a bird’s-eye view of a kidney transplant operation. I peered inside the deep pit of the woman’s body and was overwhelmed with emotions thinking how far I have come and proud of what my body has endured.
My body has been on a battlefield since the age of 5, fighting against seizures, scoliosis surgery, diagnosis of polycystic kidney disease at 10, pancreatitis, eleven months in the hospital where both kidneys were removed at 19, seven months of dialysis, congenital anomaly, and more than 70 blood transfusions. I won the war when I received a life-saving kidney transplant.
Next, Dr. Montgomery prepared to attach the kidney to the bladder. He glanced up at me, pointed to a machine and asked me to turn off the saline drip. We intensely watched and waited to see the kidney produce urine and pee for the first time. Seeing urine squirt out was momentous and the sign of success. While on dialysis for 7 months I did not pee once, so I could fully appreciate how wonderful this moment was.
Earlier, at 8:45 that morning, I had witnessed the laparoscopic surgery on the donor patient. I tried to imagine that patient was my donor, Sally. I was able to see what she went through and what she sacrificed for me. This gave me a greater appreciation of not only my donor but also every donor out there. The day in the operating rooms ended at 2:19 p.m., with a successful removal of the kidney from the donor and a beautifully-working transplanted kidney in the recipient.
This was a life-affirming day for me. Watching the woman’s transplant in the operating room helped me to completely understand in a visceral way what happened to me, and it helped to validate my life and everything that my family and I went through. Seeing it with my own eyes helped to open a window into my soul that allowed me to soar to new heights and fueled me with motivation and determination.
Since this once-in-a-lifetime opportunity, I have shared my story with thousands of people in North America and reached even more around the world via my award-winning biography, “My Favorite American” by Dennis McCloskey.
I love how one beautiful thing in life leads to the next bigger and better beautiful thing. It is thanks to my biography being written that I had the opportunity to see firsthand a kidney transplant.
I am fortunate that I am alive and that new chapters keep unfolding before my eyes, because I was not hopeful that I would survive unless I received a transplant.
Dr. Montgomery, the superstar transplant surgeon of Johns Hopkins Hospital, said that on my sickest days he saw a light in me, and felt compelled to get me better. He stated that after successfully saving my life he altered his medical career “to specialize in only the most difficult cases.”
I attribute one factor as to why I am still alive today, because I never thought for a second I was going to die. I had hope! After 11 months in the hospital, having both kidneys removed, unable to eat or drink for 6 months straight and having to be fed by a pic line, all the while undergoing daily dialysis – I never lost hope. I never gave in to self-pity. Instead, I stayed focused and determined. I vividly remember the day in February 2002 when my family was called to my hospital room to say their good-byes because the doctors did not think I was going to make it through the next emergency surgery. I stared into the eyes of my loved ones with full confidence. I knew I was going to see them when I woke up from this next operation.
The power of positive thinking and the control our minds have over our bodies is beyond comprehension. I know if I would have lost hope, my body would have followed the same path and I would not be alive to share my story of hope today.
I have a full appreciation of how beautiful and precious life is. My life has been full of health hurdles and I continue to have health hiccups but I don’t let them slow me down. I keep fighting and making the most of every healthy day!
On August 13, 2011, I celebrated 9 years post kidney transplant, by para-sailing above gorgeous Lake Tahoe with my husband, Noah. As I was flying high above the water, it was so quiet and so peaceful. Tears streamed down my cheeks as I looked at Noah and I was overwhelmed with joy and gratefulness for how far I have come.
My mind was flooded with positive thoughts as I gazed out at the mountains, and I soared through the sky with a renewed sense of hope that everything is going to be OK. I have realized that there is a plan for all of us. We don’t all have to soar with the eagles. We just have to go with the flow of life and remain positive, hopeful and faithful.
This was an amazing story. I had 4 children and they all were born with this dreadful disease. My oldest son received a transplant and he is doing great. My second daughter has an abdomen as large as being 9 months pregnant, so far not on dialysis. The next girl has an abdomen as large as being pregnant for triplets, and has been on dialysis for two years with many complications. Now her heart is slowing taking a beating. She is 52. My young son who is 49 has no problems with blood pressure or anything other problems except he has a brain aneurism caused by this dreadful disease. But that of course now is mute as his lung cancer caused him to have multiple tumors in his brain.You are a precious person and God loves you very much thanks for sharing your story with all of us.
I am so very sorry to hear how this terrible disease has affected your family. If they inherited it from your side of the family, how are you doing? Before they removed my kidneys, I had a young nurse come into the room and asked when I was due. I looked at my Mom for her to tell this nurse why I looked pregnant, because I was in shock to be asked such a question. It saddens me to hear all that your family is enduring and also fuels my passion to keep raising awareness for PKD so others will not have to go through what your family has to live with every day. Thank you for sharing your family story and for your support. I wish you and your family all of the best and hope you will continue to follow my blog and find it beneficial.
Great story! I like how you pointed out the importance of positive thinking as I believe it is crucial to have with any major hurdle in our lives. I remember watching my dad struggle with this disease and if it wasn’t for his positive outlook on life I know it would have been a lot harder on him and us. I got diagnosed 10 years ago when I was 17 and am getting ready to go on the transplant list and I think that seeing my fathers attitude toward it has really helped me mentally prepare for what lies ahead. Never underestimate the power of positive thinking.
P.S. Lake Tahoe looks awesome!
I am a firm believer in positive thinking. Even if we wake up in a not so positive mood, I believe it lays the path for how the rest of our day will go. We are close to the same age. I am 29. I am happy to hear of your father’s strength and positive attitude which has set a wonderful example for you. I hope that your wait on the transplant list will be short. Not sure where you live, but Lake Tahoe is amazing and hope you get to see it some day.
Great story. My mother had transplant by al ratner in 2003 and she had good 8 yeara of wonderful life but repeat anuerysm rupture took her life away. God bless u with a long life
Thank you! I am so sorry that your Mom is no longer with us, but thankful that she was able to have 8 wonderful years thanks to the gift of life. I hope that your health is well. Thank you for your sweet message.
God bless you as well with long life
Thank you Valen for your stories. You are such an inspiration to me!!! Thank God for your healing and possitive attitude. You truley are a blessing.
Thank you so so much! Your sweet remarks fuel my passion to continue to write and provide hope!
Hi I am 47 have PKD and on dialysis. While on vacation in late August my 16 year old daughter got quite sick. Upon returning home we ended up in the emergency room. With bloody urine. She had pkd. Not a huge surprise. The big surprise was how bad it was. Her creatinine was at 3 and her kidney were massive not a spot without large cysts. We spent 14 days in hospital and have returned twice. She keeps busting cysts. Already three transfusions.Blod pressure out of control. The doctors at children’s hospital were confounded they had never had a case like this with someone so young. Your blog I will pass on to my daughter.hopefuly, it will give her some inspiration as she begins the journey with PKD. i would also be very interested in hearing more about your issues with cyst bleeds and what course your doctors took with you. Any adise would be great.
Wow Lori! Your daughter sounds a lot like me. I’m so sorry to hear what all of you are going through and I can oh so relate. The doctors were baffled by the fact that my cysts would not stop bleeding. That is why they removed both of my kidneys. I had cyst bleeding through middle school and high school. Sitting in the car for a long duration of times would cause them to bleed. I couldn’t play sports for fear of being knocked down and causing a cyst bleed. My kidneys were huge. Polluted with cysts. I looked pregnant. I had over 70 blood transfusions to try and compensate for the blood I was loosing with all of the bleeds. I had crazy high blood pressure and they could not get a handle of it until they removed my kidneys. Spiked so high it induced seizures. For my bleeds they tried to drain them and then after that didn’t know what to do but remove them. Where do you live? How is her health right now? She might enjoy reading my biography as well. “My Favorite American” by Dennis McCloskey. I will be sure to write a blog on my cyst bleeds soon. Thank you for this suggestion. This really hits home as this was my main issue. Please let me know if you have any questions and or if there is anything that I can do to help. You are welcome to email me at email@example.com. Thinking positive thoughts and wishing all the best for you, your daughter and your family.