Voices of PKD: Brittany Hay and Colin Grieve
Polycystic kidney disease (PKD) is no stranger to Colin Grieve. Colin grew up surrounded with people battling PKD; including his father, uncle and grandmother. Colin had his battles as a child, a youth, and as an adult. He has memories of spending time in the IWK Health Centre in Halifax, NS. Colin always lived life to the fullest, and never let PKD stop him from having a positive outlook on life. Staying positive was important, knowing one day that he too would need a kidney transplant.
When I (Brittany Hay) met Colin, his kidney function was about 40%. Not knowing much about this disease, I took some time to educate myself, knowing that I would be by his side every step of the way. As the months went by and with each doctor appointment, we knew his function was starting to rapidly decline. We noticed small changes in Colin; mostly fatigue, certain food issues, blood levels fluctuations, soreness, aches, and pains in his kidneys. Considering all of these things, Colin continued to work his full time job. I cannot say enough good things about the nurses and transplant team. They guide you through every single step of the process. They set us up with dialysis teaching, to prepare us for this prior to the transplant; knowing that this could very likely be our next step.
As Colin reached the final stages of kidney failure with his function at 10%, the process of testing living donors was opened up. We were so fortunate when family and friends started stepping up. Colin’s sister, mother, family friend and myself all got tested as soon as we could. This process is thorough, which means it’s timely. Patience is needed. Unfortunately, during this process for Colin’s sister Kelsey, she found out that she also has PKD. This was tough to hear for our family. As I continued through the testing, I tried to keep myself humbled from the start, not getting my hopes up or down. I knew that getting the test was all I was able to do. I wasn’t able to control the outcome of any of this. When my phone rang or an email came through, my heart would drop, preparing to accept that what was meant to be would be. Each update was good for the most part. We had some retesting to do, only because they need to be 100% sure on every single test. As we overcame each test one at a time, they would guide me through the next step of the process, until we got to the very last test. In total the entire process took approximately 6 months (September - March), with the last test on February 9th. At this time, things started to set in and the reality that I very possibly could be Colin’s donor match. This is something we prayed for, for a long time, that we could be getting the positive results and the transplant date on Feb 21. That had to have been the longest 2 weeks of my life. Our transplant date was March 9 2023, which for this year was NATIONAL KIDNEY DAY. Kinda cool!
During the 6 months of testing, we really took our health seriously; especially our diet. When it comes to PKD, we know that there isn’t a whole lot we can do, but one thing we can do is control our diet. I did a lot of research on kidney friendly diet plans and went from there. We learned how to grow and harvest our own food too. I truly believe that’s what gave us more time. Even though Colin’s function was getting quite low, he didn’t end up having to go on dialysis. According to the doctors, it would be a very close call and they weren’t sure if dialysis was completely off the table. It all really depended on how Colin was feeling. At one point, Colin’s function had gone from 6%-10% and we were all shocked. I made sure that Colin really listened to his body, not to push it, to rest when needed, and to avoid catching any ailment was very important.
Once we got our date, we had 2 weeks to buckle down. We wrapped up work, with Colin being a school bus driver, and me being an aesthetician, we had a lot of close contacts. The one thing I wasn’t expecting to take a toll on me was the support. It was truly amazing to witness the goodness in people that we surround ourselves with. I don’t even have words to describe how that felt. Emotions were running extremely high and still are to this day. We truly are blessed with our family, our friends, and our community. “Small community, BIG hearts” is a real thing, let me tell you.
Once we arrived in Halifax, the transplant team took over and answered any and all questions and concerns one might have. We did all of our pre-op testing, and had incredible help from nurses and staff that went above and beyond for us both. Colin’s potassium was high. He had to get that down to ensure surgery was safe. Potassium was one of his levels we had to watch closely early on. We met our surgeon Dr. Thomas Skinner, and he was nothing short of amazing. He did his magic and the next thing we knew, it was all done. We were both doing well and recovering. Colin was impressive. Going into surgery, his creatinine level was 990 (which is very high) and within 3 hours post-transplant, it went down to 750. Then by morning, it was 350. His current creatine level is about 103. Colin was discharged 5 days post op, which is unheard of! I was discharged after 4 days. Intense as this entire process is, you need to have lots of faith - faith in yourself, faith in the professionals, faith in the process and faith in God.
Today (April 19th), we are almost at our 6 week post-op date. I can say that things have been going according to plan. Colin is doing incredibly well. The change in his physical appearance, his energy levels, his appetite, his mental health and his new outlook on this second chance at a “normal” life is something I will never forget or take for granted. At this time, we are still very cautious about visitors and take precautions in public areas. The professionals are still adjusting Colin’s medications. His immune system is low but is going to slowly build back up. Until then we will continue these precautions. They suggest that about 3 months post-op his natural immunity will begin to build. For myself, the donor, I feel great. I don’t notice any significant change. The soreness from the surgery was the only thing I had to overcome, and it was only for a few weeks that it was uncomfortable. I'm preparing to return to work May 1st, having a total of 7 weeks off. Colin is going to be taking 7 months off. As he is a school bus driver and with the timeline of this transplant, we figured starting fresh in the school year was the best option for us. We plan to take the year to let our bodies heal, and adjust to this new life before we plan to start our family.
Thank you for reading about our PKD journey and I hope that this can help others have some hope or even insight on how a transplant journey can be successful. I know that each story is very different for many reasons, but having faith and staying positive is the most important!
Brittany & Colin