Can you tell us what led to you needing a transplant?
"I was diagnosed with nephrotic syndrome at the age of 13 and started dialysis at 23. During those years, I went through many different stages from wanting to know everything about my disease to believing it didn't actually exist because I felt fine. When I started dialysis, I didn't know much about organ donation. I was told to ask my family to get tested but at the time, I couldn't wrap my head around living donation. Thankfully I started volunteering with the Kidney Foundation of BC and met many people who shared their stories on receiving kidney transplants through living donation.
After a few years on dialysis, I started having conversations about organ donation with my family. I wasn't able to find a direct match through my family but did have someone come forward via Facebook. I was blown away that she wanted to donate her kidney to me. Our blood types matched but unfortunately, I ended up having antibodies that ruled her out of donating to me. This is when we learned about the Kidney Paired Exchange Program and she entered with me. Sadly, two weeks before we were set for my surgery, I got a phone call informing me that my match was unable to donate. My donor was still able to move forward but I wasn't. After I was taken out of the chain, I took this as an opportunity to fully educate my family and from there, I was blessed to have my two brothers and boyfriend decided to enter the paired exchange program with me."
How did you feel when your husband, Shak entered the paired kidney exchange program? And when you found out there was a match?
"Our story is a bit unique in that my surgery for that date was actually scheduled to be with my older brother. We had chosen the ABO-incompatible method. A few weeks before the transplant, Shak received a phone call stating that there was a match found in the paired exchange program for me. He immediately said he wanted to donate his kidney for me, but when I received the phone call, I had said I didn't want him to donate and wanted to go ahead with my brother as the donor. Shak was quite persistent and argued with me that he should be the donor. He ended up convincing me to go ahead with the Kidney Paired Exchange Program. After transplant, it was overwhelming. I loved him before transplant and could tell him anything, but after transplant, I didn't even have the courage to say thank you as I felt it wasn't enough. It was so emotional being around him knowing that someone loved me so much that they were willing to go through this procedure to keep me alive."
What were some of the things that went through your mind when thinking about the procedure?
"This was my second time getting ready for the procedure. This time around, it didn't really hit me that I was getting a transplant until the morning of, and the nerves were crazy. I was more worried about Shak than anything else. He spent the night before with me at the hospital and he was the first one to go in the morning after. It was so emotional. Once he was taken in, I went back to the room and found the sweetest letter he had written for me. The tears just started pouring down. A few hours later, it was my time to go in. I think I was a bit numb as it still didn't sink in that I was getting a transplant."
How has your quality of life been since receiving your transplant?
"My life has been amazing since transplant. I was able to finish the tail end of nursing school feeling healthy, I married the love of my life, went on my first big trip post-transplant, landed a career which is extremely rewarding and added to our family. I reflect often and I am just so grateful for the gift I received. We have all these things we wanted to do and because of organ donation it has all been possible. Every year after transplant has been full of blessings - this last year in particular was very special. Our son Kaysen was born and honestly, my heart was already so full of love but after having him, I swear, it feels like it's about to explode."
It must have been so special to get pregnant, give birth and hold Kaysen for the first time. Can you share your feelings around the entire experience?
"I always knew I wanted to be a mom, but never actually thought about what it would be like with kidney disease. After getting married, Shak and I decided that we wanted to start a family. It was a big decision as we were not sure how pregnancy would impact my kidney. Once we decided to go ahead with it, it was not an easy process. It took more time and resources than we had ever thought it would. Once we found out I was pregnant, we were both excited and a bit anxious. For the most part, we kept the pregnancy to ourselves and started sharing the news after three months with our immediate family and really close friends. Being pregnant was amazing, feeling little baby kicks was so exciting...the heartburn, not so much. My pregnancy itself was pretty normal other than having a bit of high blood pressure in the beginning. My kidney started to get impacted near the end of my second trimester. I was lucky to have an amazing team around me that checked on me constantly. They noticed a rise in my creatinine so it was decided that I needed to be induced at 35.5 weeks. After being induced, it took a little over three days for the little guy to come out but once I saw him, I knew it was totally worth it."
Do you have any words of advice for other female transplant recipients who are considering pregnancy or trying to conceive?
"Having a baby is a big decision. If you have kidney disease, whether you're on dialysis or post-transplant, I would suggest educating yourself (with the help of your healthcare team) and discuss all options with your significant other. I have had kidney disease for almost 20 years and not once did I think about conception or fertility until two years post-transplant. Had I planned it out earlier, I would have paid more attention to what else was going on in my body. I was so focused on the disease itself and then on dialysis that I ignored everything else that was going on with me. Conception wasn't easy for us and if I were to go back, I would definitely ask my healthcare providers more questions. As a transplant patient, I had such great care and was monitored so closely by so many different teams. My nephrologist and transplant nurses were amazing. Although my schedule was filled with non-stop appointments, I was very grateful that all these people were incredibly invested in taking care of me and the little human that was growing inside me. I have visited my healthcare team often with Kaysen and to see the joy on their faces is very rewarding - they have all been a part of this journey."
As a renal nurse, how does it feel to give back to others who are going through a similar journey?
"Being a renal nurse was a big decision for me. I wasn't sure how I would feel working in an area that would be a daily reminder of my kidney disease and dialysis but since I started, I have never looked back. It is so rewarding working with this population. My own journey has impacted the person and nurse I am today and I really thrive to provide the best care for our patients. Thinking back, I was not the best patient when I was a young teen/young adult and I see myself in a lot of the young patients I work with. I understand what they are going through and what their mindset might be at a young age and really try to guide them in the right direction. Being on this side of kidney disease/transplant has also opened my eyes to how hard the healthcare teams work to provide care for their patients. These people are so invested in helping their patients have the best quality of life and I am proud to be a part of it."