I was diagnosed with kidney disease at the age of 22. But I've unknowingly had the disease from that age of 19 (that's when I started to experience some mild symptoms). I would randomly throw up and my legs would not bounce back (as I would press my fingers against them. The symptoms became worse then I turned 21. I gained a lot of weight, I had difficulty breathing, I had really bad edema and found it difficult to work. And I have an extreme case of nausa and was throwing up 5 or 6 times a day.
I cannot begin to explain how kidney failure has changed my life. It is an extremely hard condition to live with. When I was first diagnosed with kidney failure, I was very numb. I automatically denied it, I prayed for it to be a dream and I spent months crying myself to sleep. I would always stay strong in front of my family, but then I would close my bedroom door and cry for hours. It was hard dealing with the nausea, frequent vomiting, severe edema through my whole body which caused me to have pneumonia. The awful side effects to my kidney biopsies - one of which caused my kidneys to bleed and led to a blood clot in my bladder, almost killing me. After the procedure, I spent hours screaming, crying and vomiting in pain at the hospital ward, until the doctors arrived in the morning and administered morphine (21 hours later). The pain felt like death.
Adjusting to dialysis (where my blood is removed from my body, cleaned and then returned to me) has been quite hard. I get extreme fatigue, insomnia and I feel nauseous (I feel less nauseous now than I did when I had kidney disease), so I guess that means dialysis is trying to manage my symptoms. I get severe back and bone pain. Sometimes, after dialysis I can't move my hands because they are so cramped and stiff. Usually I have difficulty breathing because the fluid consumed stays in my stomach until it's removed via dialysis. Everyday I worry about my diet and whether or not the content of potassium in my meals will kill me (I try my best to eat low potassium foods). Potassium regulates your heartbeat, and too much potassium can give you a heart attack. Sometimes dialysis makes me so exhausted, that I find it difficult to get out bed, but I try to push myself to carry on with my day.
My biggest fear is catching an infection in my catheter or being on the waiting list for more than 3 years and still not getting a transplant, which would ultimately impact my dream of traveling the world in my youth.
Most people only need 1 kidney to lead a normal and healthy life. So I would like to encourage more people to become living donors. Also dialysis is extremely harsh on the body, not many people realize that if you spend 4 days without dialysis, you will die. We need to end the waiting list. There aren't enough people from ethnic backgrounds registered to the organ donation list. The lack of donors is troubling and it is a public health issue which must be addressed by our local government.
I've always been taught God tests people with trials and tribulations because he wants to bring them closer to him. So I consider this illness a blessing. Without this illness, my family and I would never have known the importance of organ donation (because it's not something talked about in the Asian community. I'm proud to say we are all registered organ donors now, and this would never have happened had I not had organ failure.
I am very content and happy with my life because I have no reason to be sad. I have a roof over my head, food on the table, hot water and electricity. I live in the UK - where medical care is free. What more could I want? Albeit I don't have health, but God has blessed me with 1000 more reasons to be happy. There are so many people in third world countries who can't afford dialysis and die a painful death. And it pains me so much to know that people are suffering in the world and it's a reminder to always be grateful with your life.
My faith in God has kept me going through the hard times. There have been many times when I wanted to rip the tubes from my body and walk out from dialysis. But God gave me the strength to continue. Also, I have a supportive network of friends and family who have kept me positive. They are amazing!
Interested in helping Saima?
You will have to contact the kidney transplant coordinator at The Royal London Hospital, Whitechapel London - to receive information and quote my name Saima Jannath. You need to tell them you would like to get tested for me. If you don't live in London, they can transfer all the tests to a hospital local to you.
Call using the below numbers:
0203 594 1751
0203 594 1752
Name: Saima Jannath
Location: UK, London
Date of Birth: 26.08.1993
Donor Blood Type Needed: O+ (but my doctor said the donor can be from any blood type, as I can have plasma exchange therapy to remove the antibodies