Nicole Harr
Nicole Harr, our Director of Community Engagement, has officially received the gift of life! Now post-transplant, Nicole is ready to share more about her time leading up to and following her surgery with the PKD community:
Four months ago, I received the gift of life from my best friend, Sue Full. Getting to transplant day was a long road for me, my family and friends. I was referred for transplant at the beginning of 2016 and so began my forever relationship with my transplant team! As I reflect on my time on the list, waiting for transplant, I realize how fortunate I was to have time; time for my evaluation, time for potential donors to be tested and time to adjust to what was to come. As my kidney function held steady over the next year, I continued to monitor my labs closely and kept all medical appointments so that when the time came, both my donor and I would be ready.
In the spring of 2018, my kidney function was clearly declining and we knew it was time to get everything in order so that surgery could be scheduled. Sue and I were evaluated again, passed with flying colors and our surgeries were scheduled for July 31. This evaluation was particularly nerve wracking because we both knew that if we didn’t pass for any reason, I would be looking at dialysis, at least for a while. We were both very aware that there were no guarantees that we would both be approved again. Getting the green light for transplant was even more emotional this time around! In the weeks leading up to surgery, I had many mixed feelings. It felt like I had been on this slow moving train for the past two and a half years and now, as we were approaching the station, the train was moving faster than ever before. I knew I was ready and that a transplant was very necessary, but I was also pretty nervous about the surgery. In addition to my family and friends, the PKD community stepped in during those last few weeks and carried me to the finish line and beyond.
Nicole and Sue the day of their transplant surgeries
The last few days before surgery are a blur to me now. I remember being very busy, getting things “ready.” That is what I do when I am overwhelmed—plan! The morning of surgery brought with it a sense of calm. I knew what I needed to do and I was ready to get it done. It was very surreal to lie in the hospital bed, ready for surgery, and chat with family and friends literally minutes before a surgeon and his team were able to save my life because of the generosity of a friend. We laughed and we shared a few tears and we all knew that all of our lives would be forever changed by the miracle of living donation.
My transplanted friends told me that I would feel better immediately after surgery. I thought they were crazy. I mean, how can you feel better when you wake up after surgery? Well, they were right. Of course, there was some pain and discomfort but I actually did feel better right away. If I had to describe how I felt in one word, I would choose “brighter.” I just felt brighter than before and ready for conversation! I won’t say recovery was easy but the pain and discomfort I felt was overshadowed by how good I was feeling. My best advice: take recovery day by day. Don’t over-do it, because if you do, you will regret it, and listen to your health care team! If I can do it, anyone can.
Nicole and Sue four months post-transplant
Since transplant day, I have had a lot of time to reflect. I am overwhelmed with gratitude for how far I have come in such a short amount of time. I think about Sue and the sacrifice she has made taking care of her kidneys until I was ready for the transplant and going through surgery so that I can have a full life. My family and I will live the rest of our lives in gratitude for this opportunity. We will treasure each day and celebrate this gift with every moment we share. I am reminded how much energy it takes to survive living with chronic illness. I remember my response when I was asked how I was feeling before surgery. I would respond, “I am feeling pretty good, just tired.” I was not feeling “pretty good.” I had adjusted to life with minimal kidney function. My new kidney has taught me that “low kidney function tired” is not the same thing as normal tired. I am now grateful for “tired” because it reminds me that tomorrow, I will not wake up tired. I will wake up refreshed and ready for whatever comes my way thanks to this new kidney!
Nicole and Sue are an inspiring duo. I work with them to raise money for PKD research. Their example played an important role in my husband’s decision to donate his kidney. I am proud to call them friends.
Thank you for sharing your journey with us. You and Sue are an inspiration to all of us!
So happy to hear you are both doing well!! I was following your story and I was worried when I didn’t hear anything about you both after the surgery. My daughter is my potential donor so it is uplifting for us to hear that all is well with you both! Wishing you both many many years of good health!!
Hi Debra, Thank you for the comment and sorry to worry you! We both have recovered so well and are feeling great! Best of health to you and your donor.
It was exciting to hear that you felt better immediately. I know too well what the constant fatigue feels like and am greatly looking forward to having some energy. Thanks to the compassion and generosity of my friend who is my living donor, assuming all my pre-op tests go well (hadn’t realized there were yet MORE tests), we are scheduled for for transplant Dec 10. I am beyond grateful.
Hi Nancy,
I was just amazed at how much better I felt so fast! The only reason we had to be evaluated again is because of the amount of time that had passed from the first evaluation to surgery. My kidney function was very stable so I put off the surgery for quite a while. My center requires the recipient to be evaluated annually. Sounds like you are all set. Best of health to you and your donor!
An update: Had my pre-emptive transplant Dec 10. Like you, I felt better as soon as I woke up. Based on my experience and deep gratitude, I’ve begun working with the Living Kidney Donor Network to share information about living donation. I will try and organize a workshop at my center because although they clearly say that a living donor is your best option, they provide little/no information on how to approach seeking such a donor. I also hope to work with my local PKD chapter here in San Diego. I’ve learned so much through this experience and want to share what I’ve learned to benefit others.
So happy for you both. Wishing many healthy years. My husband is my donor and I feel overwhelmed and nervous. It makes me a little bit less anxious after reading your story. Thanks for sharing.
Anna,
I understand completely! The PKD Community provided amazing support to me and to Sue. It is so helpful to hear the stories from others. You will do great!
Thanks for sharing your story Nicole!! I am on that journey now (was scheduled for transplant 10/23 but had to postpone due to infection) and am hoping to have the transplant in the next 45 days. I can really relate to how you feel about what Sue did for you as my sister is my donor and has worked so hard to get ready to give the gift of life to me. Wishing you both a very special thanksgiving this year and many years of health and happiness!!
Kevin,
Hoping you have a fantastic Thanksgiving as well. Best of health to you and your sister!
I happened upon this last night. This really encouraged me. It’s almost like you were writing my story. I began the process for transplant evaluation and donor search in December 2016 when my GFR hit 20. I was so disappointed to realize that it would come much earlier than I had thought when I was first diagnosed with PKD. Over the past 2 years, I have had 3 different donors go through the testing, with the third one finally being the charm! I was blown away by the number of people who were so willing but unable to get tested due to their own health issues. I have said and thought the SAME THING regarding feeling better after surgery. In my mind, I don’t think I feel that bad. I feel “pretty good, just tired.” When I read that you immediately felt better – the word you used was “bright” – I think I felt hope and a little excitement for the very first time. My surgery is scheduled for December 4, less than 3 weeks away. Thanks for sharing your story!
Hi Cindy,
Congratulations! I am so excited for you. I will be thinking of you on Dec. 4. You are both going to do great. I hope you both have a very quick and easy recovery. Don’t over do it! Best of health to you both!
A friendship like no other is formed by organ donation. You are both an inspiration! Enjoy the holiday season with your loved ones.
So glad to read that you’re doing well! I received my gift from my elementary school friend/college roommate two weeks ago today! I love your description that you feel “bright.” So accurate! And you’re so right…there is a huge difference between low kidney function kidney tired and tired! I’m so thankful to my beautiful friend for her gift and will honor it by living my best life and taking good care of myself!