Sehnaz is looking for a kidney donor
This is a story about my life. A life that for the past 16 years I have fought hard to negotiate my everyday experience on a dialysis machine. What it is to lose the function of both of my kidneys. On the rare occasion when a person has opinionated their understanding of kidney failure, and living on dialysis, it goes like this “I suppose it is a case of pressing the button on that machine, and getting on with the rest of your day.” I cannot even summon the strength to respond. Not because I do not want to. It is because I cannot find anything in life’s experience to compare it with. Or even begin to convey the daily reality of living on dialysis.
Leading up to my kidney failure, I had been feeling very unwell. As the weeks went by, I felt heavy in my body and was rapidly putting on weight. I could not understand what was happening to me! As I walked through the doors of the Renal kidney outpatient unit, the nurse asked me if I was, okay.
At this point I was walking at a snail’s pace, breathless, heavy on my legs, as though any moment they were going to drop off. She asked me if I was passing any urine? I was so busy trying to keep things together, that I had not realised. I had not passed any urine for 2 weeks. She took some blood. At 8 am the next morning I had the nurse on the phone, telling me both my kidneys were not working. In a daze, I listened to the rest, which was, that I needed to be admitted so that they could insert a temporary access line in my chest, to start dialysis.
Even though I did not know a great deal, at that point, what this dialysis was! Instinctively, I felt a complete revulsion, at the thought of what would follow. If I thought my life had been challenging up to that point, living on a machine would bring on adversity of the most extreme reality. I told her point blank I did not want to go on dialysis. She got my doctor (who had known me for the past 25 years) to call me. As I recall, “Sehnaz it is not easy to die, it is slow and a gradual process, of your organs shutting down” Please reconsider… How long? 3 to 4 weeks depending…
As the days turned to a week, two weeks, I was becoming progressively weak. Adapting to the fact of leaving life, and mentally coming to terms with dying. Having to consciously decide to end your life, is probably the toughest call for the human mind.
As the days turned to a week, two weeks, I was becoming progressively weak. Adapting to the fact of leaving life, and mentally coming to terms with dying. Having to consciously decide to end your life, is probably the toughest call for the human mind. But the choice you’re given, is also the harshest, as I have come to find out, in the last 16 years of dialysing. Although I was told the inevitable, i.e., the gradual shutting down of organs, I woke up one morning and opened my eyes to pitch-black darkness. I could barely make out anything in front of me, I was not able to see with my eyes. I was shocked. I think at this stage I might have cried. I realized this was going to be a slow and painful ending. What frightened me even more was the gradual vegetating of my body. I had to face the fact I would no longer be able to determine what happened to me. I felt I had to go and see my mother, who lived in Leicester (who has since passed away), and the rest of my family. When I conveyed to them what I was facing, I did not get much in the way of a response! Looking back, I am glad I made that decision because it gave me a reality check. I spoke to my doctor and got myself admitted to the hospital.
I started dialysing in June 2007, three times a week at the Royal Free Hospital, London. Nothing in life comes close to the acute shock and trauma that the body goes through while you are on the machine. Over three to four hours the machine processes the cleaning of the blood, toxins, and fluid, through the tubes that are attached to the access veins through needles in your arm. As I am dialysing, my body temperature drops very rapidly to an unbearable level. Words defy how I managed to sustain the extreme levels of hyperthermia cold for the duration of three and a half, to four hours of dialysis, each time. Cramps in legs, feet, and arms/fingers are another very debilitating effect of dialysing, that has had a huge impact physically and mentally. Sadly, the impact of dialysis on your body continues after with total exhaustion and fatigue. Along with having to limit my fluid intake and a restrictive diet. After 7 years of dialysing in a hospital unit, and need more than 3 sessions a week, I had to decide to start dialysing at home. I transferred to the home dialysis unit at Guy’s and St Thomas Hospital in 2014, which trained/prepared me for dialysing at home. I now dialyse at home 5 times a week. Dialysing at home, as opposed to a hospital unit, has its pros and cons! If anything, dialysing at home means I have to do everything, it is much tougher and isolating. From carrying fluid bags weighing 15/20 kg (I am a very slight person, weighing 25.5 kg). Carrying weight more than my body can sustain, means I go through a lot of physical pain. To endure the effects of a created fistula, to put needles in my arm over and over, that has traumatised, all the nerves throughout my body. Along with the routine of debilitating cramps and extreme cold. From preparing the machine to needling, and dialysing on the machine, takes between six and a half to seven hours. Each morning, before I open my eyes my first thought is ‘Dialysis’.
I have been on the National Kidney Transplant Register to find a match for the past 15 years. I am still waiting for the phone to ring and bring me the news for a potential match. Why is it taking so long? When they screened my profile for a kidney match, it came back with several antibodies in my blood, as a result of receiving blood transfusions between 2001 to 2003. At the time, I was told that antibodies get washed out of the body over time. In 2007 I am told; that in some individuals the anti-bodies remain. This means that to find a match with a similar profile is like “a needle in a haystack” in their words. Every day I question myself, ‘Why am I putting up such a fight to live’. When you’re faced with life or death, you will always choose life. Even in the most extreme circumstances, you have a choice. The given choice may come loaded with challenges, but also comes with a silver lining. At times even for me, this is hard to take. The silver lining is, that it has made me a better human being, more humble, more compassionate, and more knowledgeable of how difficult it is to be human. More importantly to live life. It has made me appreciate this privilege called life’. Yes, after all this time I have lost hope of receiving a healthy kidney, at times it hurts me, because I don’t want dialysis, and this level of suffering to be the final word.
On Monday 15th May 2023, I went to see Anita Copley, the Living Donor Transplant Co-Ordinator at Guys and St Thomas Hospital. She explained the advances that have been made, in the way of clearing the anti-bodies from my body through treatment. For this to happen I need a living donor. She encouraged me to reach out to a wider audience through social media. In telling you my story, it has already brought me a glimpse of hope. I hope that may well speak to you. I thank you for taking the time to read about me, and the challenges of kidney failure and dialysis. You may have questions and want to know more about what it means to be a living Donor.
