Organ Donation is a conversation, and we want to TELL your stories. Today we feature our first transplant recipient story, the story of Marilee Chananie from KZN.
1. Which organ/tissue did you receive, and in what year?
I had a simultaneous Pancreas Kidney Transplant in 2014
2. What was life like before the transplant? How did you spend your days?
I have always been active and on-the-go doing stuff. Until I really got ill and doing a lot became very challenging. Lack of energy, a sore aching body (because I was poisoned by my kidney’s inability to clean my blood) meant I was quite poorly. Notwithstanding this, I continued to work full time and even take a daily walk to keep “fit for transplant”. To be honest I also slept a lot and was very depressed. At the same time I was trying to finish my Masters degree. Women are good at multitasking, aren’t we? I was lucky my boss was very understanding and on the days I went to dialysis, I was allowed to work from home afterwards. In the weeks leading up to transplant however, I was rapidly declining with my liver and heart taking a lot of strain. I was breathless, had no energy and was nauseous most of the time. I began to lose hope, I wanted to give up.
3. Describe the emotions experienced when you received “The Call” for your transplant?
I was calm because it was entirely surreal to me. I switched into my practical mode – one which means almost zero emotion, just practical tasks. I set about making sure my bag was ready, whilst my husband organized a way for us to get to Joburg quickly. Even as I was taken into theater, it still didn’t feel real. As I lay on the table though, I was overwhelmed with a mix of emotions. Gratitude beyond mere words, hope all would turn out well; sadness for the grieving a family was going through…and indeed I felt a lot of love for all those around me. I had not had time to have any pre-med so believe me, no drugs were involved in how I was feeling – simply no panic, just serenity.
4. What is life like now, after the transplant?
Initially I was like the Road Runner – couldn’t keep me still. But this caught up with me within 10 weeks and I ended up having a really challenging time, in and out of hospitals for the next 5 months! I was more in hospital than I was at home. Yet since I am determined not to let anything get me down, I continued to study and finish my Master’s degree and I continued to work, even in isolation in hospital. I have an amazing job and employer who did a lot to accommodate me and my unique circumstances. Best of all I am healthy and don’t have to be on dialysis or take insulin and my liver, heart and lungs are all strong and healthy. I participate daily in sporting activities, and recently qualified to attend the World Transplant Games to be held in the UK next year as a member of the SA National Team.
5. What advice would you give patients on the waiting list?
Make sure you join a support group who can help you deal with your physical and emotional well-being. Normal healthy people just don’t get how it is to be that sick and to be facing your mortality. Those who are waiting or have been on the journey will help you and give your care givers a bit of time off from you. It isn’t easy for them either as they watch you deteriorate. Also, try to keep “transplant fit” by following your doctor’s orders regarding nutrition and exercise.
6. Why do you think there is a shortage of donors in South Africa?
I think people don’t want to talk about it because death is scary, but in truth, you don’t necessarily have to die to donate (like in the case of a kidney or lobe of your liver or even bone marrow). Additionally, I think we have massive cultural barriers as well, and generally speaking the public is poorly informed. This is compounded by the fact that Government does nothing to promote organ donation. It has become a fact that awareness is now reliant on those private individual and NGOs out there to push for more public awareness. Lack of funding to drive awareness is hampering education efforts as well – our economy currently is rather unsupportive all round in the areas of donation and transplantation. It is up to the graduating medical professionals to already have a positive mindset regarding donation; it is up to existing professionals to continue their development by learning about donation and sharing their knowledge; the people passionate about 2nd chances at life, like TELL and myself, will continue to do our bit to educate and inform.
7. If you could describe transplant in one word, what would it be?
One word isn’t enough! At my best effort though I would have to say “SYMBIOSIS”. I get to live on thanks to the gifts from my donor; and my donor gets to leave a legacy – and in a way, live on in me.
LAST THOUGHTS…Whilst death is tragic and devastating, the pain of this event is balanced out by the good donation does, saving so many lives, and giving recipients a chance to have a better quality of life, and a 2nd chance to make a real difference in a world that needs caring people. I am forever grateful to my donor’s family for saying YES to donation. If I can but ask one thing: Please have the organ donation conversation with your family and friends. Let them know your wishes, know what theirs are too.