Can facebook find me a kidney? Finding an organ donor when you’re not white
Life Takes a Sudden Turn
Hi, I’m Simran. I was born prematurely on the 13th of April 2002. So many babies are born early, I never thought it would have such a huge effect on my life.
As a child, life was wonderful. I’m an only child from Walsall but I have always lived with my extended family, so I’ve always felt loved. The school was great; I wanted to be a lawyer or pursue some other really cool professional career. I was quite active as well, going to karate lessons and doing my fair share of swimming. The only thing that wasn’t so great was that I was usually ill with urine infections or other such things. I brushed this off as one of the downsides of being born prematurely.
Life at Senior School was a little different. I went to a huge school, which was scary at first but I made friends quickly and settled in well. After a while, all my initial fears disappeared and I was happy again.
The Shocking Diagnosis
Then things started to rapidly change. I was 13 years old at the time. I would come home from school and go straight to sleep. I was constantly tired. I realised something wasn’t right so, in December 2015, I went to the hospital and got tested. I thought I may have diabetes as it’s a common medical complaint in my family. They tested my blood and I went home. However, not long after I arrived at home, the hospital called to say that I had to come back immediately.
My blood pressure was so high, the doctors said there was a high chance that I would have had a stroke if I hadn’t come in when I did. My kidney function had deteriorated so much that it was irreversible. I had end-stage renal failure. I was seriously panicking. I remember saying to my mum that I’d be fine as long as I didn’t need surgery. The next thing you know, the doctor told me I was going to have to have a kidney transplant. After she left the room, I remember crying a bunch.
I ended up being in the hospital for a week. The specialists were trying to prevent me from having dialysis for as long as possible because they didn’t know when I could get a kidney transplant. My parents got tested and I was put on the waiting list for a kidney. Unfortunately, no one in my family has been a match for me.
A Life on Dialysis
I have now been on the waiting list for almost five years.
To be a match, the person needs to be the same blood type (O Positive), preferably the same ethnicity to ensure a better tissue match and they must be relatively healthy (not a big drinker or smoker). There are six tissue types for a donor to match and it is preferred that all six are met.
I was put on medicine for my blood pressure along with special phosphate tablets. I was doing that for 3 years until I was put on Peritoneal dialysis. I spend 8 hours every night on dialysis. The machine does 4 cycles and basically acts as my kidneys, filtering out waste products and excess fluid from my blood. The tube for dialysis is surgically attached to me 24 hours a day. Dialysis can be really painful and I often have to miss school.
My illness has changed my life a lot. I now have to go to bed early and then I am confined to my bedroom so that I can get my dialysis done. I haven’t been able to go on holiday for the past five years, as my position on the transplant list would have to be frozen. However, that has now changed and I can travel to a country close to the UK but my position on the list will still be suspended.
There are so many people who need a transplant. As I am Indian and my blood type is O Positive, it is quite rare for me to get a kidney. At first, I believed that the average life expectancy for someone like me on dialysis is 3 years. Thankfully, I was wrong.
A Struggle with Mental Health
Honestly, up until I was 15, my illness didn’t really affect my mental health too much. But when Year 12 at school came round, I really struggled. I started to feel a bit sorry for myself. I was fed up with the dialysis and I couldn’t cope at school. The constant tiredness meant I couldn’t do as much as other people my own age. When I was applying for University, I got really upset because of this and my future seemed so uncertain. If someone asked me about things I do outside of school, I wasn’t able to say anything. It made me feel like I was lacking in my life.
Recently, I have started talking to a councilor which has helped so much. I can open up more to someone who doesn’t know me or my condition. But, until I find a donor, I’m still in the same situation.
I could stay on this kind of dialysis forever, as long it continues to work well and I stay healthy. Otherwise, I would have to change to Haemodialysis which is even more difficult and would require a hospital visit multiple times a week. People on Haemodialysis also have a higher chance of contracting a blood infection.
Advocating for Organ Donation
My parents and I have created a Facebook page called AKidney4Simran. The aim is to raise awareness about becoming a donor and let people know what it’s like to go through needing and waiting for a kidney. As well as my own experience, I also share other people’s stories on the page. We want to educate people on the processes of organ donation and how it all works.
The government has now brought in the new organ donation law which requires people to opt-out if they don’t want to be on the donors’ list once they pass away. I am hoping to encourage people not to opt-out by showing them that organ donation can change someone’s life forever.
Hopefully, I will find a match soon. Whatever happens, I want to go to Uni. I don’t want my situation to hold me back. I want to study Child Psychology and do everything I would be doing if I wasn’t ill.
My parents have been amazing through this. They do everything with me and the whole family has taken it in their stride. The school have been great; they understand that I can’t do all the projects and have been really supportive. They even allow me to go home as soon as my classes are finished.
As a 17-year-old girl who has been waiting for a kidney for 5 years, my message is:
Take the time to understand how illness can impact someone’s life; the everyday challenges and uncertainty they might face. Imagine it was someone close to you. No one is saying that you have to donate your organs, I know that’s a big deal. I just want to spread the word about organ donation and how it can change the life of someone with a debilitating illness like mine. I hope that my story resonates with readers from all walks of life and helps them to relate to other people with any type of long term illness.
Simran’s Links:
Charities:
Children needing kidneys, who’s appeals on Facebook are currently live looking for Donors: