Today, one month ago, I donated my left kidney to our best friend.
I have been an avid supporter of Organ Donation and written about it on a number of occasions here. Not many know that I have been going through the work up to be a living donor to our closest friend for the past 2 years. (Yes, it has taken 2 years)
Then on the 23rd of February, at 6 am at Donald Gordan Medical Centre, it finally happened. I gave a part of myself away.
This all started 7 years ago when I was a snot-nosed 21 year old. 7 years ago our best friend fell ill. The kind of ill that left him in a hospital for a month and then made him reliant on machines for the rest of his life. He has had life long issues with his kidneys but at the age of 27, he went into stage 4 kidney failure. He will need dialysis for the rest of his life, or a transplant. I remember not knowing what dialysis was. I remember thinking they will do his once or twice for a few hours and he will be okay, he will come home and things will be normal.
I knew nothing.
All I knew was I couldn’t sit by and do nothing. So I asked to be tested to see if I could be a match. It was a long shot as we are not blood-related. As it turns out, I was a perfect match. But my application was immediately turned down due to my age. I sat right there in a ward in a hospital in Pretoria and I promised him that should he still need one when I am old enough he will get mine.
5 years passed. Some better than others. Many 3 am trips to casualties. Many infections and complications and days where were so frustrated that he had to be at dialysis and miss out on important events that we thought we could just scream. 5 years passed and he still needed a kidney. That call that we were waiting for just seemed further and further away.
I asked to be tested again and still, I was a match. This time we were going to go through with it. I was determined. Part of me looks back now and feels brave. Another part of me looks back and thinks “you had no idea what you were doing”
It started with a cross-match, wherein very simple terms my blood and his blood get mixed and they watch to see if he rejects my blood (This is extremely dumbed down and a very complicated process but for the purposes of sharing I thought I would simplify it)
Our cross-match was negative. This means he does not reject me. We were elated, but cautiously so as there were still a million opportunities for them (the doctors and Department of health) to say no. Because there was still so many things that could make this not happen, we chose not to tell people. Only a hand full of people knew I was going through the testing.
There were many tests, then some retests. And even more, tests just when you think they are done with it all. They test the crap out of living donors to ensure their safety (the living person willing to slice themselves open that is) The tests were fine, they didn’t hurt or scare me. I mostly had to draw blood, pee in tiny bottles or go for X-rays and CT scans.
At the end of the tests, we had to get approval by the Department of Health. This was the last big yes we needed. The call came early December and we knew the operation would be early in the new year.
We went to see the surgeon and we thought he was going to give us about a month notice to get our affairs in order. We got one week. As we sat in his office the transplant was to happen the next week. It was so soon. It was so overwhelming. I cried the whole way home. I was excited to get it over but so incredibly scared. I wish I could tell you I did this all with a smile on my face and a skip in my step but I was not that donor. I was petrified.
My amazing sister flew in to help the night before and I can not thank her enough for taking almost 3 weeks out of her life to come and help. I would have been lost (or gone crazy) without her.
Alarms set for 3 am we left went to bed know our lives would change forever.
I was wheeled into surgery at 6 am sharp and about an hour later the recipient joined me. The operation took 6 hours.
I remember waking up in recovery in extreme pain. Like EXTREME pain. I have never felt anything like it before in my life. I thought I had some tolerance and I read how people who donated woke up and felt fine. Yeah, not me. I felt like someone spooned out the kidney with a rusted ladle. I remember seeing the recipient next to me and trying to reach his hand to hold it. He just out of reach. My sister and husband were waiting in ICU and there is a horrible photo of me smiling with my husband. I look pale and disgusting. I was not calm in ICU. I hated the beeping of things around me. I remember them saying things like my blood pressure was too low and that scared me. I wish I was that strong woman who cracked a joke and slept it off. That wasn’t me. Every beep scared me. Every move I made worsened the pain. Despite feeling like a total failure I was doing okay and was sent to high care where I spent the next two days before moving to a normal ward.
The recipient did amazingly well and the new kidney was producing urine like it was getting paid to pee. He immediately had more colour and a few days later he told me how he can already feel a difference. I was so happy. I can not explain the joy I felt knowing it worked. My kidney was making him feel better.
After only 5 days in the hospital, I was discharged and deemed fit to recover at home. The pain was increasing but I thought this was normal due to me moving more. 2 days later the recipient was sent home too. Amazing right? Back home my sister and husband forced me to take it easy, I barely moved from the couch. But something felt wrong. I knew something wasn’t right.
There was a pressure when I urinated. Not on the side where they took the kidney but on the right side. The remaining one. We called the Nephrologists office because its all we had. (I was given no surgical follow up) and they said that doesn’t sound normal they will get back to us. They never got back to us.
Over the next few days, I developed a fever and started feeling generally ill. Very nauseous and so tired I couldn’t move. My sister was able to contact one of the surgeons and he instructed us to come in immediately. Because he didn’t have admitting rights at the hospital it took us almost 2 hours to get a bed. Scans and blood and urine were done immediately and all that they found was an elevated marker in my blood that indicates inflammation (therefore infection). They kept me over night, gave me oral antibiotics and sent me home the next morning. I went home the Tuesday morning.
By Friday my fever was back with vengeance and I couldn’t keep down anything. I had never felt so ill and so scared in my life. At just before 11 pm on the Friday evening we made the call to go the casualties of a hospital closer by. I was admitted after yet another CT scan and told my infection marker (CRP) was 187. Normal is between 5 and 10. I was sent to ICU for the night and to be transferred via ambulance back to Donald Gordan the next morning. I was FLIPPING OUT. By now it was 4amish and I honestly thought this was it, this is how it ends for me. They have no idea what’s wrong and I just keep getting sicker. I was scared, crying, clinging on to my husband and sister for dear life not to be left alone in an ICU full of people connected to machines and things flashing and beeping and people dying around me. Every fibre of my being wishes I could be the calm collected cool chick, that took this in stride. I am not. I was ashamed to have done something others deem so big but be so scared for my own life. I felt selfish and wrong.
6 am on Saturday I was transported via ambulance back to Donald Gordon where they were waiting for me in high care. All the surgeons I briefly met before the transplant were there and none of them could quite figure out what was wrong with me. All they knew was that it was indeed a bacterial infection. All tests came back inconclusive. Then I started responding to a very strong IV antibiotic. I got a dose once per day and with every dose, my blood work looked better. I was still scared as all hell but the doctors in high care were the most comforting and explained things to me. I am still thankful for their kindness. After the 3rd dose, I was once again moved to a normal ward. (by chance the exact same bed I had been in before)
My blood worked looked better but again I was scared the drug would stop working or that I would be stuck in this hospital for another week. Had it not been for my people who spent their days at the hospital with me I would have gone crazy. I hated every minute there.
The head Nephrologist then saw me and told me to be safe I need to continue the IV antibiotics for another week. (I broke down in tears at the thought of being in hospital even longer) Becuase they didn’t know exactly what bacteria it was hey could not down grade me to something I can take orally. I was devastated. I felt I was living proof of the saying “no good deed goes unpunished”.
But as luck would have it, he returned later the day and was pleased enough with my bloodwork for me to continue my antibiotics as an outpatient. This meant I could go home. Home, my bed, my couch, home. But this also meant still having a drip in my arm, getting up at 5 am every morning and going to a hospital to get treatment.
And so we got up. Every day at 5 am I got hooked up to a line and got my antibiotics. They joy and relief I felt when I finished the treatment cannot be explained. I was so scared. A part of me still is. As I am sitting here typing this I am still on another course of treatment that is precautionary to ensure whatever bacteria it was is properly gone. The pain is still there but getting less and less every day.
It has been one hell of a month.
I am ashamed that I was not able to be braver. That being sick scared me and the complications threw my life upside down. I felt like I failed. I was supposed to be healthy and fine and there for the recipient. Like I always was. Part of me still feels like I failed. But you know what. The guy that got my kidney is doing so great it really doesn’t matter. Everyone that sees him tells him he is full of life for the first time in so many years. That’s enough for me.
Being a living donor was not what I expected. I was not as brave as I thought I would be. Some days I feel the scar is massive and others I don’t care. Some days I fear he won’t use the kidney to go live, be adventurous and see the world. I fear he becomes bubble boy, too afraid to live.
But when I see him smile, being happy about being able to pee for the first time in 7 years, I know he will be just fine and I am worried for nothing.
I will do this whole month over again and again just to be able to see him how I see him now. Looking forward to the future.
So here is to life, the difference one month and one kidney can make.