Jordan Barber – I developed diabetes after a kidney transplant

We hear how Jordan Barber developed post-transplant diabetes mellitus after having a kidney transplant.


Jordan Barber (26) lives in Bloemfontein, Free State.

 

Stage 5 renal failure

Jordan Barber was diagnosed with Stage 5 renal failure in September 2014. His glomerular filtration rate (test used to check how well the kidneys are working) was 4 mL/min. This meant he had End Stage Renal Disease (ESRD); his kidneys had lost almost all ability to function effectively.

Jordan explains, “I was placed on dialysis (where all the toxins are removed from your body by a machine) for four hours a session, three times a week. A transplant was always the only solution and goal my medical team and I worked towards, to get back to a normal life.”

For four years, before a matching donor was found, Jordan had to go for three sessions (four hours) of dialysis every week, while still studying to complete his degree.

“I clearly remember going to dialysis at 4:30 in the morning so that I could be the first one put on the machine. Sometimes I even had to do dialysis on a Friday night which was never pleasant, especially while you are a student,” Jordan says.

Thankfully, he completed his studies in 2019 a year after his transplant.

Transplant

Jordan explains that the process of the transplant was long. “It involves many blood tests, doctors’ consults and other tests to ensure that your body will be able to withstand the transplant, if it’s done. You are also constantly monitored to ensure that if an organ does become available, your body is in the best condition to allow for a successful transplantation.”

“All the complications were discussed and consent had to be given to go ahead with having the transplant and accepting the risks. I recall that one of the risks is even skin cancer.”

He adds, “Waiting just over four years is a long wait. But, well worth it, looking back now and knowing everything one has to go through to receive a transplant.”

On the 19th February 2018, Jordan received a life-changing phone call to say there was a match (from a recently deceased person) and he should come to the hospital immediately.

Life after the transplant

The transplant went well and Jordan started experiencing the benefits. “My life has changed a lot since the transplant. I have a lot more freedom and free time and not constantly planning my life around dialysis. There are no worries about restricting fluids and avoiding eating certain foods anymore. Having a transplant is the greatest blessing that can happen to you. It gave me a new lease of life and a second chance.”

Post-transplant diabetes mellitus

Two years after the transplant, in May 2020, Jordan was diagnosed with post-transplant diabetes mellitus due to complications and side effects of the transplant medication. “In 2019, I had to use insulin for other diabetic related issues that arose due to medication, which was later changed and I could stop taking the insulin.”

When asked if he was upset by the fact that he had developed diabetes due to the transplant, he responds, “I was more nervous that it would affect my kidney function. But, luckily it didn’t. After that I just took things day by day and slowly got used to having diabetes.”

Currently, Jordan uses Apidra, a rapid-acting insulin, before each meal. Then at 10pm every night, he use a long-acting insulin, Optisulin. “Injecting yourself is scary in the beginning but you get used to it very quickly,” Jordan says.

Current lifestyle

The 26-year-old exercises frequently.“I usually walk and play golf in my spare time and try to lead an active and healthy lifestyle. I was due to take part in the South African National Transplant Games in June. But, due to COVID-19, it had to be postponed. I was going to play Table Tennis with the hope of qualifying for the South African team that would go to the World Transplant Games.”

He adds, “I also try to limit carbs and sugar as much as possible and only eat at mealtimes. I don’t snack between meal unless I have a hypoglycaemic episode and I drink a lot of water as well. Adapting to living with diabetes is a challenge. But, once you have a daily routine, it becomes quite easy to manage your glucose levels and it becomes routine.”

MEET OUR EDITOR


Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on [email protected]


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Sikelewa Duba: The reality of uncontrolled diabetes

Eighteen-year-old, Sikelewa Duba, candidly shares the complications  she has endured with her struggle of controlling her diabetes.


Sikelewa Duba (18) lives in Port Elizabeth. She has Type 1 diabetes and is part of DSA Port Elizabeth Young Guns.

Diagnosis

Growing up I was a healthy child. Then, in February 2015, when I was 13, I lost weight. My mom was concerned as I was a chubby baby. I also started urinating a lot, especially during the night. My mother took me to the doctor. I still remember my first reading; it was 26,6. The doctor told us that I have diabetes and I was admitted to hospital.

I did not know what to expect at the time, but I just did not want to die. I remember not wanting anything to do with needles. Not knowing that they were going to be part of my daily routine, forever. The doctor explained everything about my condition to me thoroughly and a dietitian provided me with a meal plan to follow.

Not getting the most effective medication has been the biggest challenge as my medical aid only covers certain insulins and has limited doctors’ visits. Thus, being the reason why I am a patient at a public clinic. Ultimately, this means that I must work twice as hard to keep my glucose within range.

Diabetic ketoacidosis

For the first two years, it was all smooth sailing in terms of range (4-8). Later, I noticed that my injection site was swelling up. So, I thought that the solution was to inject only twice a day, not four times a day. I wasn’t aware that I should change my injection sites.

At first, I feared skipping a dose. But, as time passed by it was easier not to inject. Little did I know that this would take a huge toll on me later.

In March 2018, the aftermath of my actions began to unveil. I suddenly felt tired and one day on my way to school, I experienced breathing difficulties.

At school, they called an ambulance and I was rushed to hospital where they told me that I had diabetic ketoacidosis (DKA). This was due to me skipping injections which caused uncontrolled diabetes. This was an eye-opener; I could have ended up in a coma.

So, I started working towards who I was before. Someone who managed and took ownership of her diabetes. I stopped skipping injections and starting alternating my injection sites. I also learnt how to adjust my insulin dose, based on my readings. Whenever I felt something was wrong, I tested my glucose and adjusted my insulin dose.

Surgical removal of a boil

In May 2018, I developed a boil on my left buttock. One night the pain was so unbearable that the doctor saw it fit to be removed. This meant that I had to be operated on. I was really scared, but all went well. The doctor explained that the boil was also a result of uncontrolled diabetes.

Since then I have had another boil in my right buttock. Though, this one didn’t need to be surgically removed.

Cataracts

The most recent challenge I faced was not being able to see clearly after lockdown stage 3. I always wore glasses but noticed that my eye sight had become worse. I was referred to an eye specialist and after running a few tests, he concluded that I had cataracts.

As soon as I heard that, I knew it was because of my uncontrolled diabetes. The only solution was to have cataract removal surgery. I wanted to have the surgery as soon as possible because I could not see in class, especially the board. So, on 14th July, my left eye was operated on. Then on 28th July, my right eye was done. The results are amazing that I don’t even wearmy glasses anymore.

Search for a better insulin

My doctor is concerned about my glucose levels and all the complications I have experienced. He is currently researching the different types of insulin that my medical aid will cover and be picked up from a pharmacy. In the meantime, I am monitoring my glucose levels as best as I can.

My journey so far has been tiring but I have learnt a lot as well. The challenges I have faced so far are extremely worrying. They have made me realise that having uncontrolled glucose levels can, and will have, dire consequences in the long run.

I have endured much and there is still much to go through. So, to all Type1’s out there I would like to say: please aim for progress, not perfection. It is always better to start gradually and measure progress using small steps, and avoid taking on too much yourself. Reach out for help.

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