As I sat down to write this article, I was in Medi Clinic Bloemfontein in bed 25 in the Urology ward. I was admitted with a bladder infection as infections are very common post-transplant. If there is one message, I can give to people, it is that health is wealth and that it is something you do not ever take for granted because in a heartbeat it can be taken away from you.
My story started in September 2014, when I was a second year student studying at the University of the Free State in Bloemfontein. I was a relatively active person but wouldn’t say I was fit and healthy. At the age of 21, I never felt that I was a candidate for chronic renal failure, especially to the extent to which my kidneys had deteriorated.
Back in Hospital to beat the infection
In the middle of September of 2014, I suddenly started to feel sick and would vomit occasionally. It was nothing that I thought could be that serious. For 2 weeks this occasional vomiting continued and fatigue started to set in. I told my mom that I thought that I should go to the doctor just to see what was going on.
I booked an appointment and during the consultation the doctor tested my blood pressure and noticed it was slightly elevated. He decided to draw blood to get a better picture as to what was going on. He prescribed some medication for blood pressure and off I went again thinking everything was ok.
Later that same afternoon the Doctor phoned and said I should come in to see him immediately. I didn’t initially really understand the severity of him telling me I had Creatinine levels (indicates how well your kidneys are functioning) that were over a 1000 (in a normal person creatinine should be between 60-100). He said I should immediately go to the Medi Clinic casualty in Bloemfontein as the Nephrologist was waiting to see me. The Nephrologist told me my kidneys were functioning at between 4-5 % and that I had to start dialysis immediately in ICU.
My dialysis machine and I!
My life was turned upside down within 24 hours. My parents rushed through from Welkom and my aunt from Cape Town. They couldn’t believe that all of a sudden, they were confronted with questions from the doctor of do you know of anyone that would donate a kidney to your son nor are any family members prepared to donate a kidney. It dawned on me that in order to live normally again I would need a kidney transplant. Various family members and friends volunteered to get tested but none were a match. I was placed on the transplant waiting list to wait for a cadaver kidney. This waiting list is extremely long due to the shortage of donors in South Africa.
I had to start dialysis 3 times weekly for 4 hours per session, while I was still studying and trying to finish my degree in Wildlife Management. Dialysis is hard to explain to people that have never needed it. It drains you, breaks you down emotionally and physically, you feel like a prisoner on that machine and there’s nothing you can really do without it otherwise you die. Because I was a student, I had to fit dialysis in and around my schedule, resulting in me having to go as early as 4:30 in the morning on a Monday, Wednesday and Friday and sometimes even Saturdays. In Bloemfontein the winter temperatures can drop to as low as -6 degrees Celsius and I had to get up and go to dialysis while most other people were still snug in bed.
Life was a constant struggle being on dialysis and trying to study as well, I also had constantly low hemoglobin making it even tougher to function normally. Up until 2016 things were carrying on as normal without any serious complications. However, In the September of that year, things really took a turn for the worst, when I was rushed to hospital with an infection in my AV fistula. My body was so weak I was in ICU for 3 months. I remember my mom telling me that I went into complete organ failure and was on life support. The doctors informed my parents and friends it was time to say their final goodbyes because I wasn’t going to make it. I pulled through and am still here fighting for my health every day. I cannot imagine what they must have gone through during that whole ordeal
My Mom and I
After that 2016 incident I continued on dialysis but, I was also removed from the transplant list because my body would reject the organ because as I was still in recovery. I had to wait until my body was in the correct condition to accept a new organ. In mid-2017 my Doctor confirmed that I was healthy enough to be placed onto the list again.
2017 was as normal as it could be with me carrying on with dialysis and continuing my studies. I was also focusing on my health so that I was well enough to receive a transplant. Unfortunately, during the December holidays my AV fistula got infected again and I had to spend 10 days in hospital just before Christmas. I was discharged on the 21st of December and my family and I went down to Durban for the holidays.
Holiday dialysis is another story. Not doing dialysis whilst on holiday is not an option as you will get really ill or even die. As a visitor at a dialysis unit you have requested to visit, you have to fit in where there is a place for you. New Years Eve of 2017 was spent on dialysis as this was the only slot available to me while in Durban.
At the beginning of 2018 I told my mom that I think this is my year for a transplant. I received my gift of life in February of that year and had my last dialysis session as well! I will never forget that phone call I received from the doctor telling me the news I had been waiting for 4 years to hear. I am so grateful that a donor family decided to donate their loved ones organs.
My sister and I outside the Medi Clinic
.Post transplantation is probably the hardest thing I have gone through. A person doesn’t realize how many adaptations you have to make and challenges you still need to face. My hemoglobin kept on falling to levels around 5. I had to use the first 6 months of 2018 to fully recover. My hemoglobin has since been at normal levels of around 15. Due to the immune suppressants I have also since developed Type 1 diabetes and in total I’ve spent about 3 months in the hospital post-transplant. Even through all the hardships I am here to tell the tale today. I am now healthy with normal hemoglobin and blood pressure readings, and I am enjoying life to the fullest post-transplant.
If there I one thing I can take from this experience it is to never give up, always stay positive and take things day by day. Receiving a transplant is a gift. Someone once told me that receiving a transplant was for him was a bigger reward than winning any amount in the Lotto. I feel exactly the same way. Organ Donation is a very hard thing for many people to understand. However, if you yourself need an organ or anyone close to you needs an organ that is when you will really understand the critical shortage of organs in South Africa.
My family and friends
Without the support of my family, friends, dialysis staff and medical team I don’t know where I would be today. The constant, encouragement, love, support and motivation to never give up and to push through is appreciated in ways I cannot ever explain. Four years feels like a blur and I cannot really describe how I kept on going. I just had to push through each day no matter what.
I fully support organ and tissue donation as this saved my life and without it who knows where I would today. So, please register and do the right thing to save lives and give other people the second chance they deserve.
Have the conversation with family and friends, register and then share your decision to be an organ and tissue donor. You can make a difference. #BeAHero
I am so proud of you Jordan.. keep doing what you doing and always stay positive. kimx
As a family, we are so proud of Jordan’s journey. There were times when giving up was a consideration, but our faith, trust and belief kept us positive We are grateful,everyday for his precious ‘gift’ by a selfless organ donor and family. An organ is truly a second chance – “a gift of life!” Please consider signing up to register as an organ or tissue donor-until you need one you won’t understand the need and necessity. Do the right thing-register today!
Such an inspirational story Jordan! Well written. I cannot imagine what you and your family have been through! You have been so brave. I wish you a beautiful, healthy life!
Thank you for sharing your story Jordan! Wishing you health and happiness for many years to come!
Dear Jordan , you are a true inspiration to many. You have been through so much with a smile on your face. God bless you young man, May your health go from strength to strength. Your parents and your sister are amazing. Love and prayers to you all 🙏🙏🙏💕💕💕
Dear Jordan. You are an inspiration and a wonderful ambassador to others. Truly a role model to so many. May the Lord continue to bless you and may you grow from strength to strength. Thank you for sharing your journey and been an inspiration to so many. Keep up the good fight! Thinking of you and the family. Best wishes.
You have always & will always be in my thoughts & prayers Jordan, as will the whole family. You are an amazing young man, so brave & an inspiration to many. I am supet proud of you. With much love always🤗💙🙏🏻🙏🏻🙏🏻
Things have to change at hospital level. Our daughter had ner Monday and she was in a coma until her death on the Friday. No one approached us about organ donorship until the next day. Her marrow was harvested but the heart, 1 lung and kidneys went to waste. As her parents we were in shock and not thinking. All it would have taken was one doctor or one nurse approaching us and we would have willingly signed the forms. That was in 2015 and who knows Jordan, maybe her kidney would have saved you some suffering. I feel organ donation education should start in school and become something everyone talks about and those doctors and nurses need to think before they just switch off the machines on a brain dead patient. I am so glad you are well and healthy. Please, please don’t ever waste that organ. Someones child died to give you life. I hope that in 80 years you are sitting on a stoep somewhere and thanking God not only for your kidney but for your long happy successful life. May God bless you
Hi Jennifer, I am so sorry for your loss and for the fact that no one approached you about organ and tissue donation. This is one of the things which make it so difficult in hospitals. Ideally, transplant coordinators should be requested to come and speak to the next of kin when someone is declared brain stem dead but often this does not happen. I know that all these loopholes are being worked on and hopefully in the future, there will have a better approach. A lot of issues come into play when it comes to organ and tissue donation e.g. cultural beliefs, religious beliefs, personal beliefs about organ and tissue donation etc. Hopefully, through education, this will change. Kind regards Janet