Donating Left Kidney to PKD Sister
When I was 14 years old I was told my two older sisters had a different dad. Their father died in his 20s and my mum remarried. It meant nothing to me, they were my sisters. At 33 years old I found out my older sister had PKD in her kidneys and liver. She was 40 years old, in hospital and seriously ill. No one told us what PKD was, we never knew anyone who had it and to be honest, the word ‘genetic’ was all I heard. 50/50 were not good odds, I just hoped it wasn’t from our mother’s genes. As all the older generation were dead there was no one to ask. I just hoped. As we aged I just saw everything as age related, my sister’s tiredness, her lack of appetite and so on. Then the operations started, her para-thyroid, her heart, her brain (for a tumour). She would often wonder (out loud) why she was the only one ill in the family. I hoped she was, in a strange way. All the time I knew I was getting older, I knew PKD could hit me after 40 and I hoped it missed me out. I never wanted to know.
When my sister got to 53 it was clear she needed a transplant, her creatinine was through the roof, her kidney function on the floor. She never complained about it, just wittered on about what she would eat or couldn’t eat, how she missed cheese, etc. So the time came where the passing conversations of ‘Well, you can have one of mine.’ came clearly into focus. Would I do it? I never doubted I would, mostly because I couldn’t live it myself if I didn’t at least try. Only 1 in 5 make it through from start to finish. First port of call was my GP. My sister lives in the highlands of Scotland and I live in the Midlands in England, different countries and different health authorities. I was told 6 months and I thought that was a long time, but I first had to get past the idea that I would have to know if I had PKD. I think that was the hardest thing for me. I remember waiting with a lot of pregnant women waiting for my scans. I remember thinking how much I didn’t want to know, how I was frightened of being like my sister, just 7 years later than her. If there was a time I needed courage, that was it. When I got the results, that I was clear, that I didn’t even have one cyst on a kidney I was over the moon. I knew then that I would happily give my sister a kidney. I guess I had to face the idea that I would possibly need a kidney if I had PKD and I would give anything not to face her disease. I think because I went through so much fear and questions about me at such an early stage, I thought the rest would be plain sailing. Honestly, it isn’t that easy. The health screening is a long process, no jaundice, no cancer treatment, no bad blood pressure, no mental health issues, no anything really. I had had back surgery in my 20s, the surgeon said, that was good, I had a high pain threshold!
After the scan we went through a series of tests, the hardest to organise was the HLA match. I just thought it would be ok. My sister was worried, we needed 3/6 match and we are genetically half sisters. I decided it would be paired if the match wasn’t there. It was a minor miracle we were a 6/6 match and I got the call. I phoned my sister straight away and she cried. That was when I remember thinking how real it was, how much it meant to her and how frightened she was. The last thing to work on was my weight. I had to lose 2 stone in weight and that meant exercise and diet. To have a target, to have something so profound driving you, really makes you want to do the right thing. No sugar in my mouth, lettuce became my friend.
As my sister got worse, the date was given to us. It was quick in the end, slow in the lead up. I knew there was a pressure on my weight, but I knew I could do it, 5.30am exercise time and 6pm exercise time. Always hungry, but I played music to inspire me, music to keep me going. I was surprised I passed all the tests so easy, I remember thinking, ‘Goodness, I am lucky, I am healthy, just a bit fat.’ Sometimes I would cry at the thought of what was happening, it really did overwhelm me in quiet moments. All the time I just couldn’t get my head around what was going to happen,I just knew that I could help my sister. That was what overwhelmed me. My other sisters would not have passed the medical screening, we all knew that, so in a sense the pressure was on me.
My partner was so supportive, but in herself could not see the pressing need, the yo-yo ing of my emotions, the fear of failure I had. I have to say that Edinburgh Royal Infirmary were fantastic in treating us as a couple, they never even blinked an eye that we were gay, they were more concerned about my work, the traveling and logistics.
So to the operation day. I went to Edinburgh the day before the op. The final tests were done (read that as weight taken), an arrow was put on my left side and then it hit me, it was real…really real. The target was achieved and I was about to do something I didn’t know much about except in theory. I did know I wanted to help my sister, I knew I would be ok, I knew it was about me, in a sense nothing to do with my sister, I wanted to make a difference, I wanted to do a good thing, that drove me forward, a sense of peace. By this time I had heard so many people telling me it was an amazing thing I was doing, now I believed it. I am not trying to say I felt like a super hero, because I didn’t, I just felt the enormity of it all and it hit me in waves, then I laughed and joked about it with everyone near me. I am not going to pretend that I just sailed into it all. I hated all the attention, I hated all the praise. After the final checks I was sent away to the hotel and the ‘clan’ started to arrive. They all had a great drink that night, I smoked a lot. I knew I wasn’t supposed to, but I did.
The day of the operation I was up at 5am, I slept badly due to a lot of snoring people around me. I bathed and off we went. I have to say at this point that I always felt so lucky every time I went near a renal unit over the assessment time, walking into the hospital to give a kidney made me feel so lucky, lucky to be so healthy I could do it. I walked in that morning knowing my sister was upstairs waiting in the ward. I was in day surgery to start with, my arrow never washed off, stockings on, paper pants on, paper hat on, gown. I was ready. I walked to the operating side room. The next I knew I was awake and feeling a bit groggy. The pain couldn’t have been too bad because I was being told to hit my button for relief, I refused. Maybe I am just difficult. Apart from having my pubic area shaved, against my wishes, I was absolutely fine. In a sense I remember thinking it looked like being at your own funeral, all the family there, so nice to me, waiting on me. But the best was seeing my sister there, next to me. I looked across to her and I know I cried. She was much better than me! I saw her daughter and her smiles, her fears about her own future and I knew that what we had done was a message to her and her brother, help each other, share what you can. I saw my sister’s husband, my wife, my other sisters, all happy we were both alive. I was happy my sister could start living again. At this point it might be worth pointing out my operation was abnormally long because I had 3 arteries on the donor kidney, so it took ages to take it out laproscopicly. It was 52% of my overall function, as usual, my sister got the better deal! I think the family thought I was dying, hence the smiles. My operation was just over 5 hours. All the time the co-ordinator went straight to my wife to tell her, that meant a lot to me – my sisters are quite vocal, strong women, who of themselves can demand the main stage. My quietly, lovely wife never had to demand anything, the co-ordinator found her.
I found out a lot about myself in the next 24 hours, I disliked being immobile, I hated my catheter, I wanted a cigarette, I had a slow heart beat, I breath shallow, I love my family, I am stronger than I thought, I didn’t miss my kidney, my sister loved her new kidney. Her creatinine fell from over 250 to 94 in 24 hours. Within 12 hours I was mobile, within 24 I was off the HDU, within 25 hours I was having a cigarette! We called the kidney ‘Cissie’ after my grandmother. I was named after her, but refused the nickname!
After transfer from the HDU, I was in the renal ward. I was the only donor there. Many were there for rejection after transplant. One lady lost her kidney function after a liver transplant. I would like to say it was ok, but I hated being there, I wanted home! After 4 days in total, I left the main renal ward and my sister took my bed, I went back and visited her, staying in the hotel due to the long journey. My surgeon did not want me to go home too quick, so I didn’t. Really I wanted to go home at same time as my sister, but that never happened. As I left her she could eat cheese! My journey home was slow, I got tired really quickly, but I got home. Even then I just wanted to get back to normal. I decided the next stone in weight was mine, for me. The fitness I had gained, I would keep. I probably did cycle too quick, but after 6 weeks I was ‘jogging’, well, my version. It is nearly a year since the operation, my sister still has her PKD kidneys, she struggles with their size, but she is well and I am getting ready to run 10k in May, the anniversary of our operation. Every step is to show others who are unfit, overweight, just quietly getting on with life that there is more out there. I may not do much else with my life, I may get fat again, I may stop running, but right now, I feel I got as much out of giving my kidney to my sister as she did. I am 48 years old and no longer need to look back to ‘better days’, I have them right now. There are some things I struggle with in life, grey hair has arrived, I am menopausal, I am getting arthritis, my blood pressure isn’t great any more, I have to watch my potassium intake. However, on the plus side, my pubes grew back, I am fitter, I am happy in myself, I appreciate the quality of life I have and if I could, I would do it all again, the angst, the fight for fitness, the fear, everything.