As our friend and colleague Nicole Harr prepares for her upcoming kidney transplant, we arranged a Q&A between her and longtime blog contributor Valen Keefer to help her and others learn more about transplant preparation and life post-transplant:
Nicole Harr: How did you prepare for your transplant surgery?
Valen Keefer: The months leading up to my transplant were different than most. I was too sick and my kidney function was not at the appropriate percentage for me to go on a transplant waiting list. I had a bilateral nephrectomy at 18 because my kidneys were gigantic and my cysts would not stop bleeding. If the kidneys weren’t removed, it would have been a fatal outcome.
My transplant was my last hope for survival. My preparation prior to surgery was to stay as healthy and strong as possible as I endured dialysis several times a week — sometimes every day. I stayed open-minded, positive and hoped that the surgery would restore my health and give me a second chance. Thankfully, it did.
NH: What was the biggest lifestyle change for you after your transplant?
VK: Some of the biggest lifestyle changes have been adopting a lifelong medicine regimen, becoming a full-time patient with doctor appointments and monthly blood work and appreciating the importance of becoming a knowledgeable patient and advocate. I also have to be very aware of germs and protecting myself from getting sick because a suppressed immune system responds differently than a healthy one. A common cold or flu can be very bad for a transplant recipient. I have to act quickly when medical symptoms arise.
Receiving a kidney is a priceless gift that comes with great responsibility. We are responsible for getting the most out of our transplant. It is up to us to take care of ourselves, especially our kidney, and learn as much as we can along the way. The changes are worth it. Life is precious and well worth living to the fullest.
NH: What has been your biggest challenge after your transplant?
VK: Getting others to understand and appreciate the significance of my health issues and seriousness of having a suppressed immune system. I’m not tethered to a dialysis machine anymore and on the outside, I look healthy. When others see that and know I received a transplant, they think everything is better. Yes, life is better, but a transplant is not a cure. If I were to get sick, it could have grave consequences for my kidney and overall wellbeing. If I have a fever or start vomiting, I have to go to the hospital right away for fear of infection and not being able to keep my vital meds down. I am almost 15 years post-transplant and take my role as a transplant recipient very seriously. I will do all that I can for the vitality of my kidney.
As transplant recipients, we have to take different precautions than some. Before going to gatherings, I’ve learned to ask if anyone there is sick. This allows me to decide whether or not it is wise for me to attend. When others don’t walk in our shoes, they don’t understand what our lives are really like and we can’t fault them for that. So, in the end, our health is in our hands. It is our job to educate others, as well as ourselves, and make the best decisions to live the happiest and healthiest lives we can.
NH: What’s one thing you know now that you would have liked to know before you had your transplant?
VK: How beautiful life would be. At 19, I needed a kidney to survive. Dialysis was very challenging for my body and it kept getting tougher as the months progressed. I didn’t know what to expect post-transplant. I approached things one day at a time as I waited to receive the gift of life. I wish I could have met someone who’d already had a kidney transplant and had a better understanding of the miracle of transplantation. Talking to someone who had been in my shoes would have provided invaluable hope. This is one of the reasons why I am passionate about sharing my story, with the goal of providing hope and education to others that I wish I’d had in my time of need.
Nicole was referred for transplant evaluation in December 2015. After being evaluated in February 2016, she was put on the transplant waitlist. As soon as she was listed, several people contacted the transplant center to be evaluated as her donor. It took 8 months for Nicole’s living donor, Sue Full, to get through her evaluation and be approved. Read more about her journey here.