The importance of an Organ Transplantation and what it’s like to be ill and waiting. To be seriously ill with a debilitating and potentially terminal condition is like being in jail, but its your own sick, frail body and you haven’t done anything wrong to ‘deserve’ this. To be waiting for a lifesaving kidney transplant either from a deceased list or from a live donor is never knowing what to feel. Should I feel happy and hopeful that someone passes away soon so I can live? I can’t even pray to God for a deceased kidney transplant as it means praying for another human being, most probably as young as me, to pass away. On the other hand, looking for a live donor is another form of torture and uncertainty. “Don’t get your hopes up” they say, even when you are being admitted to have your final preparations done to receive a donor kidney. “Don’t get happy, the donor might change their mind, get sick, get disqualified any minute… Any moment it feels like”. You can’t feel happy or sad or hopeful or despair.
Don’t feel. Don’t think. Just keep positive… Just one day at a time and hopefully you will make it, you will be the lucky one all goes well for, and you will survive. You are being kept in the dark 90% of the time from anything that happens with the live donor process. You try to piece the picture together from tiny information fragments, trying to guess. “What stage is the testing at? Do I even have any chance? Will I live long enough to be transplanted?” One day at a time. Constant anxiety and worry for the future. Despair and sadness for your loved ones and feeling guilty that they have to deal with it all too. Feeling like you are a burden on society, NHS and your loved ones. Feeling like you failed. Feeling betrayed by your body. How does it impact you physically and mentally? Physically kidney failure feels like the worst never ending hangover. It is there all day every day. Extreme soul crushing fatigue, vomiting and tummy issues, muscle pain especially at night. Oh, the muscle spasms! Most nights I wake up screaming from agonising pain. The itching of the whole body so bad you scratch your skin off with your nails whilst you are asleep and wake up covered in blood, confused and scared. Frequent and violent nose bleeds from hypertension which can’t even be controlled by BP medication. Hypertensive migraines, when the pain is so intense you vomit for days, which means dehydration and a trip to A&E. Dizzy and faint spells are terrifying especially when they come at the worst times possible like whilst driving a car. That’s why I developed driving anxiety and can’t drive myself anymore, which is extremely limiting. In my case it is also severe weight loss and no
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