NIKPA News

Emma Kearns Blog 11th Aug 23

My name is Emma Kearns, I’m from Dunloy in Co. Antrim. I had the shock of a lifetime in March 2023, when after months of being unwell I returned from my trip in Switzerland to find out my kidney function had dropped to 15%, placing me in the Stage 5 area of kidney failure. I have always had kidney issues, however my function in August 2022 was 25%, so it was a hefty decline.

For a long time I had unknowingly been feeling the effects of my kidney disease. I couldn’t figure out why I had constant nausea, was extremely lethargic and awful hypertension. I visited my doctors for routine bloods, but these then showed the effects the kidney disease had on me. My world was flipped upside down in an instant. I went from having a stable life in Liverpool, working full time to having to move back to Dunloy in less than a week. I had to leave my friends, my job, my home and my partner. I was devastated, and felt like this was the end for me. I was terrified of leaving everything behind and had to face this new life, this unknown fear of what was to come. I am young, only 24; I thought things like this happened to people much older. I felt alone. I was drowning in the information that I was being given, struggling to believe this was my life. I didn’t know anyone else of a similar age going through this, so trying to find people to relate to and befriend to maybe not feel so alone was a struggle for me. However, through NIKPA, Patty and Emma have given me hope. They understand what I am going through because they too have been through it. Talking to them, I have someone to relate to and feel less alone and afraid. 

I am of course, still afraid; naturally. This is a huge change and one that will change the course of my life forever. However, I have decided that this will be a positive experience, and not a negative one. I don’t wish to dwell on the negative thoughts I sometimes get, I remember what Emma and Patty from NIKPA have told me about their experiences and how they bounced back; and how I will surely do this too. I am currently on the deceased donor list and also have family members being tested. I want to take this opportunity to thank those who have donated, or have loved ones no longer with us who have saved countless lives by donating too. It is an admirable thing to do, one you should be extremely proud of. I cant help feeling guilty at the fact I need a kidney, and will be taking one from a family member or a deceased donor. I think I feel guilty because I know that this is a massive, massive ask. One I hate to be going through. I feel guilty if I take a deceased donor kidney, because I don’t know this person, and they would be giving me the greatest gift I could have and I will never have a way to thank them. I feel guilty if I take a family member’s kidney, because they are doing this simply for me and have to go through the testing and pain of doing so. I don’t think the guilt is talked about enough, I don’t think many understand the guilt recipients may feel. I know I am not alone in this, and we do not want to feel guilty. We are beyond grateful that people want to give us this gift. I say gift, because to me that is what donation is. A new organ gives me the chance to finally, for the first time in my life perhaps, know what it feels like to feel well. To feel a sense of normality.

I have had countless hospital appointments since I arrived back home to start preparing for my transplant, but the staff have been incredible. The doctors and nurses in Antrim Area Hospital and meeting James McDaid, who will hopefully be performing my transplant have all been exceptional. They have explained everything to me in detail and have greatly eased my fears about the surgery and what comes after. The hardest part for me is the waiting. I feel like I am constantly waiting for a call to say there is a kidney readily available for me. Unfortunately I know it isn’t that simple. I cling to the hope that someday soon I will have my kidney. I feel anxious waiting, not knowing where I will get my kidney from, or when. But I trust in the renal team that when it is my turn, I’ll be the first to know.

My health at present isn’t great, I have noticed a decline and I am struggling to walk distances without becoming exhausted after a short period of time. Noticing my health decline has been a bit of a bummer. I have very low energy and struggle to go places without soon needing a nap. Being so young, this has impacted my mental health as I watch people my age go about their lives while I wait to get mine. Although it may not seem it, the entire situation has impacted my mental health which I have tried to avoid talking about as I don’t want anyone else in my family or friend circle to feel responsible for trying to improve it. My situation is what it is. I remind myself this is a temporary setback, and if sharing my story can help one person in a similar situation feel related to then I consider it a positive outcome. I’m hoping to do more to bring awareness to organ donation and further discuss kidney disease and the affects it has on those dealing with it and how it also affects the family members or friends of those with the disease.