“She needs a kidney, otherwise she is going to die.”
I have been in shock since Monday, so this blog post is a few days late. But it is an important one nonetheless…
My friend whispered the words “she is going to die”, but I could hear every single word like they were burned into my soul. And I really didn’t even think about it, the words just came out of my mouth: “She can have one of mine.” Our mutual friend stared at me in disbelief and asked me if I was sure. I said I was. And I really, really was. The very sick subject of our discussion had left the conversation to go and lie down – it was very clear that she was deathly ill. I softly knocked on her door and asked her if I could come in. She welcomed me inside with a wave of her hand. I didn’t have a long speech, so I just said. “My name is Nicci. I want to give you one of my kidneys. I have an extra one, and you need one so it’s no big deal. What do we do next?” And yet another person stared at me with total surprise on her face. “Are you sure?” Her voice was soft, but strong. I said I was 100% sure, and so the journey started.
Anybody that knows even a little bit about kidney donation knows that it’s not a quick process. It’s tests and tests and then more tests. Testing to see if you can donate a kidney begins with a blood test. The test will determine your blood type and if it will match the recipient’s blood (compatibility). If your blood type is compatible with the recipient, two more blood tests will be done (tissue typing and cross-matching.) I went for the preliminary tests, including general tests like cholesterol, urine tests etc. and after the first round I received the all clear, and our blood groups were a match. We were elated and it felt like I won the Lotto. We had to wait a while as the admin for the next rounds of tests were done – and at one stage Discovery took so long to give authorisation that my friend told me not to worry, she would pay for the tests if Discovery didn’t come through. So the next week I went for the second and third round of tests.
Those tests really weren’t as easy as the first lot, and I would lie if I said it was a walk in the park – especially considering that I have a holy fear of needles. But every single time they stuck that thick needle in my arm I just thought about my new friend receiving dialysis twice a week, and then quickly felt ashamed for being such a woos. She was going through immeasurable pain – virtually on a daily basis.
After being so over the moon with the results of the first round of tests, hearing from the transplant coordinator that we weren’t a match after the tissue typing was done, was like somebody physically punched me in the stomach. I couldn’t eat for two days and cried uncontrollably when I got the news. She was even more devastated. I’m not known for giving up though, so within a day or two I was on the phone with the coordinator after I had done my research together with Dr. Google, and I enquired about their domino transplant program.
A domino exchange kidney transplant occurs when a non-directed donor starts a chain of transplants, thus helping several patients in the process. Often this donor will donate to a recipient (#1), while that recipient’s donor will donate to recipient #2, while their donor will donate to recipient #3 and so on. These matches are made via a matching database into which all pairs are entered. It sounds complicated but it really isn’t. It just meant looking for a match for my friend from another donor who was also not a match with her intended recipient but would be for my friend. Easy peasy.
Unfortunately, South Africa is not up to par with the rest of the world when it comes to a kidney transplant database and THREE YEARS since I first offered my kidney, there was still no progress with regards to the domino exchange program. I know how frustrated I was, I cannot imagine how it must feel for someone that knew if she is not going to get a kidney, she will either die or her quality of life will be so low, she would prefer not to live. My heart was broken, as was our mutual friend’s as well as everybody else that knew about the journey. I harassed the kidney transplant coordinator up to the point where I was forbidden to phone her and only allowed to send her emails. My pleas fell on deaf ears, as did everybody else’s!
My intended recipient friend and I kept in contact via WhatsApp, but I could tell that she was beyond despondent about us not being a tissue typing match and honestly, I didn’t know what to say to her. So, our telephone conversations were always a bit strained and the air of disappointment when I spoke to her was so thick that I sometimes struggled to breathe. It was very difficult. For both of us. But we kept contact via WhatsApp and that helped a bit. My friend was in and out of hospitals and her health was deteriorating rapidly and she continued her dialysis twice a week. Except for a WhatsApp here and there, we didn’t have a lot of contact. She did however, give me a piece of her mind during a time when some mutual acquaintances we knew had quite a bit to say about a situation I was in, and I appreciated her loyalty so much. I am so thankful that she knew that.
About two years after the first round of tests, I was contacted by SANBS out of the blue. It wasn’t a pleasant conversation. They told me that they were suing me for more than R6000 – the amount that was not covered by Discovery. I explained to them that my friend’s medical aid was supposed to pay for the tests, but they told me that Discovery would only pay in the case of tissue match donors, which I wasn’t. I was flabbergasted. I was only trying to help and here I was held responsible for R6000, that I did not have. They basically shrugged off any defense and demanded payment.
After contemplating it for days and days, I sent my friend an email about the matter, reminding her that she said she would pay, but she responded in a way that left me totally flabbergasted. It wasn’t like her and I was hurt because I was only trying to help and now, I was being pursued (and sued!) by SANBS! I thought getting our mutual friend involved (the same one that told me she needed a kidney) to try to diffuse the situation was a good idea, but it wasn’t and within a few hours all 3 of us were upset. I didn’t know what to do and I felt so helpless.
This uneasiness and unhappiness about money caused our friendship irreparable damage and believe me, if I had the R6000 I would have paid SANBS without even mentioning it to her. But it is a lot of money that I really did NOT have, and I felt that there was nothing wrong in reminding her that she offered to pay for the tests if her medical aid doesn’t – for whatever reason. She never denied that she had said this, but things were terribly stiff and uncomfortable between us as she said SANBS were ‘pushing their luck’ and I must just ignore them. I cried every time another debt collector phoned and ended up not answering my phone unless I knew for sure that the person on the other side wasn’t after my blood! (They still are by the way…)
But above everything else I cried when I thought of my friend and how this situation has affected our friendship. We have emailed each other a few times after the fact and I am relieved to say that we sorted things out as much as it is possible in writing, but things were never the same again. I vowed to get in my car and drive to Springs to talk things out (and hug!) in person as soon as I get a chance to do so.
I never got my chance. On Monday 19 February (my grandpa’s birthday) René got her angel wings and she is free from all the pain and suffering she had to endure. We never got to look each other in the eye and I never got to give her one last hug or say goodbye. Everyone knew she was sick, but she was such a fighter, and she got back up every single time she was knocked down. But not this time.
I am so sad that I cannot attend her funeral tomorrow but the irony of a new life entering this world exactly at the time of her funeral service is not lost on me. And I know she would understand.
René, I didn’t get a chance to say a proper goodbye, and I really, really didn’t expect to say goodbye so soon (even though I probably should have) but please allow me to say this today:
*You are one of the bravest women I have ever met, and it was an honour to know you.
*Your love for your son knew no bounds and I know he will miss you endlessly.
*I’m so sorry I couldn’t do more to help you live to see your grandson grow up and I’m so sorry that things were weird between us towards the end. It all seems so bloody trivial now.
*You really fought the good fight and came out victorious.
*I will continue to create awareness for organ donation. Promise.
*You never taught me to crochet like you said you would!
My deepest condolences to your son, family and friends for their sad loss.
I will never forget you. Rus sag Renétjie.
Don’t let money or things or issues get between you and those you love. Don’t ever take life and love for granted. And never, ever underestimate how painful regret can be for those who are left behind…