Duran Thomas from Worchester in the Western Cape was blessed with a new kidney at the beginning of last year. His mom, Michelle Thomas, shares his journey with us.
1. How long were you on the waiting list for your organ?
For over 2 years.
2. What was life like before the transplant? How did you spend your days?
I’m speaking on behalf of my child and can only try to explain what we’ve experienced as a family. Before the transplant Duran was a little boy missing out on so many things. When he became sick, it was supposed to be the time that he would have gone to a creche, but he never did. After his diagnoses of END STAGE RENAL FAILURE in Nov 2015 we’ve been in hospital than out of it. He had no appetite and became so thin. At 4 he weighed as much as a 1 year old baby… 11 kg!
Most foods were not good for his kidneys. He was and still is a very fussy eater! He was restricted to 500 ml of fluid that consisted only of a special milk to gain weight. I had to manage some water in between. I gave him ice cubes to ease his thirst. I used 5 & 10 ml water to make the cubes. Sometimes he would “steal” water, especially during those dreadful summer days. He had to be weighed daily after his dialysis treatment, then we could pick up that he had more fluids than usual!
He had to survive on PD (PERITONEAL DIALYSIS) and on a feeding tube in his tummy for two and a half years. His tiny body had to cope with a catheter (tube) hanging out of his abdomen and a hole in his tummy for the feeding tube. Most of the time he had no energy and would sleep long hours after his PD treatment. He went on his PD machine each night for 10 hours and 6 hours. He never knew what comfortable and peaceful sleep was, as was the case for me! I was trained to do the dialysis at home.
Besides his kidneys failing, his heart also took a major blow due to fluid overload. His heart function was at 11% compared to the 60% it should’ve been! Duran was mostly at home, spending his time watching TV and playing games on his tablet. Movies and music was his joy! He loved to dance while he was connected to his machine and although his movement was limited by a metre long, cord from the PD machine attached to his catheter, it did not stop him. We became very isolated from the outside world. Trips to the hospital in Cape Town were our outings! Family trips and visits were too much of a hassle because it felt like you had to pack a whole medical centre! Duran got sick easily and we did not want to expose him to too many people.
3. Describe the emotions experienced when you received “The Call” for your transplant.
Waiting for “The Call” was nerve wrecking at times. I had 2 cell phones because I was scared to miss it. On an evening in January 2018, I was the only one who heard the phone (a very old Blackberry) ringing in another room. It was the professor herself! She was speaking in a very slow voice, so as to not give me a fright (However I already knew….because why else would she phone anyway!?) She said she thinks that they have found the perfect kidney for Duran. We had to pack calmly and go to the hospital. We prayed, we laughed…. Actually there’s no words to describe the feeling!
4. What is life now, after the transplant?
Life is so good after the transplant! We’re counting our blessings each day! It’s been 1 year and 9 months since the transplant. Our son is growing each month, gaining weight, , went to school for the first time, went on his first day trip with the school on a bus without his mommy! He has made friends and is playing like a normal boy! He can drink as much water as he likes although ironically it’s a bit of a struggle to get him to drink water sometimes!. He does not like fruit and veggies but at least he can eat again. Now he has a big appetite. We have more time for family trips now! We have our challenges but it’s better than living with kidney failure. Not a day goes by without thinking of our donor and his family. We’re forever grateful to them for giving us this amazing gift!
5. What advice would you give patients on the waiting list?
I would say that they should keep the faith and do not loose hope. Take care of yourself so that your body can be ready and in the best shape when the time comes. Be prepared at all times. Keep your bags and meds packed and ready. Talk to family members about your situation, you’ll need the support. There will be false alarms too but try not to dwell on that disappointment because it’s best to receive the best possible organ, your team has your best interest at heart. We also had 1 false alarm and had all the tests done through the night and early morning our son were already dressed for theatre when the call came that Duran’s antibodies were attacking the new kidney. The staff was more disappointed than us but we saw it as a trial run, at least we knew what to expect when the time comes.
6. Why do you think there is a shortage of donors in South Africa?
I think it’s because there’s too much misinformation and stigmas around organ donation. Much more awareness is needed and that’s why these real life stories of recipients of organs are so important to share. People have more compassion for these stories than medical articles and statistics.
7. If you could describe transplant in one word, what would it be?