Hameeda Ali: Kidney transplant changed my life

March is National Kidney Month and World Kidney Day is being observed on March 10.

Kidney recipient Hameeda Ali shares her journey of survival on being diagnosed with end-stage renal failure to having a successful kidney transplant at Eric Williams Medical Sciences Complex, Mount Hope.

At age15, I was diagnosed in January 2014 with end-stage renal failure; that is where a person's kidneys stop functioning.

Prior to diagnosis, I was a normal, healthy child with no health-related issues, until I became suddenly ill. It still did not occur to me that it could have snowballed into the fatal conditions that I was soon to suffer from.

I went to school and lessons and a few days later it kept getting worse, and then I thought to myself that this was not normal, nothing I did made it better, even visiting a private doctor did not give any ease.

My feet became extremely swollen, walking a few feet felt as if I ran a mile, (I had) no appetite and constant vomiting. My parents rushed me to Mt Hope hospital where I underwent extensive testing and eventually, they us that my both kidneys stopped functioning and I needed to start dialysis treatment immediately.

No doctor found the cause of my diagnosis, the mere fact that I was in the early stages of kidney disease for months, but showed no signs until it was too late, was heart-breaking. My parents were distraught, but they kept it together for me. It was a very emotional time, but all the lovely doctors and nurses guided us according. I did a small procedure for my permanent catheter for dialysis and began treatment. I stayed in the hospital for three weeks and then I finally got to go home.

It was only at this point the reality of the changes that renal failure had on my life showed. I needed to adapt and learn to balance treatment and school. I was very restricted in terms of my diet, many of my favourite foods I had to stay away from, and food without salt isn’t great. I was only allowed to have 500ml of fluid a day, the thought of only having such small quantity of water during an entire day baffled me. Or going to the beach, and all you’re able to do is sit in the shade and watch everyone else have fun because you can’t get your permanent catheter wet. In addition, I was on a large quantity of medication which I had to take daily.

It was a very hard process, for me, it took a great toll on my mental health and overall psychological well-being. I was often very sad and depressed, unmotivated to do anything, keeping up with school was difficult since I had dialysis three days a week for three-and-a-half hours every time. I basically felt like giving up. No one really understands the negative effects sickness has on a person both mentally and physically, especially someone my age, but I tried my best not to show it.

I was lucky enough to have an amazing support system, my incredible family, as well as my amazing friends, teachers at San Juan South Secondary School and my dialysis nurses and doctors at Mt Hope were wonderful. They all surrounded me with love and support, and I will forever be grateful for them.

Two years and four months later, May 5, 2016, I was lucky enough to be blessed with the greatest gift I could have ever asked for, a new kidney, my donor was deceased, so unfortunately, my family and I were unable to meet the family of my donor, but I would like to say that I have endless gratitude for that family, whomever they may be, and thank you for this second chance.

Transplant

I needed to stop school for a while, which meant I was unable to continue with CSEC exams that year. Thankfully, my whole transplant experience was easy, mainly because I had an amazing surgeon, Dr Samuel. My new kidney started working immediately. Still groggy from the anaesthetic, I kept talking to my mom and saying funny, crazy stuff, but the one thing I remembered saying was how much I love God, I never go a day without giving thanks to him.

My recovery process was surprisingly pretty painless. I was amazed at the amount of water I was now allowed to drink, which therefore made me want to use the washroom a lot, which I was also happy about since being on dialysis, I couldn’t do that (because kidneys are filters, and when it's completely gone then there’s nothing to filter fluid to your bladder).

I went home after a week and I was still under constant monitoring and weekly check-ups. The first few months after a transplant are very crucial since there is a higher risk for infection and rejection. I followed every word my doctors said, and my recovery was very successful. The most difficult thing for me after transplant was the huge wave of side effects I experienced from immuno-suppressant drugs. It was indeed something I struggled to adapt to since I know some of these symptoms are something I must live with for years to come. Nevertheless, I was so happy and grateful to have sort of a normal life again.

Post-transplant

I am now 23 years old, almost six years post-transplant, in my final year at UWI where I am pursuing my BSc in Economics and I am healthy, strong, and resilient. I have not had any further complications since my transplant. I try my best to lead a healthy lifestyle, with a balanced diet and exercise. I often attempt to also encourage people to take care of themselves and their kidneys. I strongly believe people don’t understand the importance of their organs until something unfortunate happens.

Having your life turn upside down, with no reason or explanation to be found as to why such a thing can happen is very difficult to have gone through. We must also remember sickness and disease do not have a particular age to look for; it can creep up on anyone. I am an example of the way it can strike silently. Given the world’s current pandemic, this just makes life for people with any type of illness that much more difficult.

MORE INFO: Since 2006, the National Organ Transplant Unit was set up under the Ministry of Health. The unit is under the North Central Regional Health Authority (NCRHA) and is located at the Eric Williams Medical Sciences Complex, Mt Hope.

Trinidad and Tobago was the first English-speaking country in the region to have legislation for deceased donation, the unit said. The unit has done 46 transplants from 27 deceased donors and 152 transplants from living donors since it opened in 2006, however, it relies more on living donations. The unit said more donors are needed in order to decrease the waiting list of people seeking transplants.

The Kidney Recipient Support Group of TT is on an awareness drive to promote kidney health and donation awareness. Anyone who wants to become a donor can access the website of the Ministry of Health at health.gov.tt

For more info: 663-1703, or e-mail notu@health.gov.tt