On Tuesday 16 July 2019, my kidney twin, Jason and I, with both of our mothers arrived at the hospital, ready to change his life. It was an exciting moment for us. We checked into the transplant ICU in rooms next to each other and the process began. The first interesting thing to happen was a couple of nephrology students asking us if they could observe the surgeries. It’s a teaching hospital but they still need patients to sign off on them observing. We were happy to do that, but I gave them an extra task while in the operating room. At our meeting the previous week, we had asked the surgeon if we could get a photo of our kidney and he agreed, but I had not spoken to any of the surgeons on that morning yet. I told the nephrology students that they needed to make sure we got a photo, as long as it was still allowed. They came to visit us a couple of times over the next few days, bringing with them a collection of photos for us of both procedures. It is amazing to have this record of our epic adventure!
Just before surgery.
Surgery time came and they stopped outside Jason’s room for us to get a couple of photos and hugs. My mom came into the theatre foyer and gave me a hug then got one from my amazing anesthesiologist (who was one of the top doctors in the transplant unit and would be the main one I interacted with for a couple of days). She asked him how long it would take and was told 2-3 hours. Once they got inside me things got a little more complicated and in the end, the surgeries took 4 and a half hours each. The complication was an extra little artery that had been hidden on every single scan they took. My right kidney (which we named Excalibur) had 5 blood vessels and was not a candidate for transplant as a result, but my beautiful big and healthy left kidney (named Merlin) was perfect, 13.5 cm long with only the normal vessels, etc and all in the correct place, or so everyone thought. I totally believe that God was in control through the entire process and this only highlighted how his hand was on the process. If that extra artery had shown up, the transplant would never have taken place!!!
Back in ICU, my mother had survived the stress of the extra long surgery and everyone was happy with how it all turned out. My stats on the monitor were all good, so they took me off the oxygen, and my oxygen level started slowing dropping. When they were at 88, I was put back on oxygen and a chest x-ray was taken. Mom went over to where they were looking at the x-ray and they explained that it looked like I might have a leak in my lung. They came into my room and asked if I was struggling to breathe. I replied No, wondering what they were talking about. They explained about the leak and told me they needed to put a chest tube in. I wasn’t worried and happily agreed to it, hoping to get to see what they did as I am super curious about medical stuff and watch far too many medical tv series. They started cleaning the front left of my upper chest and I commented that I thought they would go in from the side. Apparently, they use the side for fluid and the top of air or gas. Next thing I knew I was waking up and the tube was in. I was mildly disappointed, but understand that many people do react badly when medical things are happening and it is safer for the patient to be asleep. The tube did its job and was removed on day 3. Multiple x-rays with it in, clamped and removed showed that I had recovered fully from what was in fact not a leak, but a fully collapsed lung! My doctor declared me his most interesting patient as in all his years as a doctor he has only heard of a pneumothorax (the technical term for collapsed lung) from abdominal surgery but never seen it. They were not sure how it happened, but the best guess was that I have a small hole in my diaphragm which normally is not a problem, but with my abdomen pumped full of gas, it leaked into my chest cavity and affected my lung. My doctor was also very surprised to see that although my creatinine numbers did increase, they stayed within the normal range. In his 10 years of being involved with transplants, he had never seen a donor whose creatinine had not spiked above normal levels after surgery.
The day after surgery.
My recipient is very brave as a few days later when we had both been moved to the normal ward and were visiting each other, with our mothers in tow, he joked that I handled the collapsed lung so well with basically no symptoms, that he had signed me up to be a living lung donor. My mother told him that this had been stressful enough and if he tries something like that, she will be very cross with him.
I spent the first night in ICU and then moved to High Care. On Wednesday the physiotherapist visited Jason (still in ICU) and got him out of bed and sitting, telling him he could walk the following day. She then came to me and said we could walk down the hall, and the following day go downstairs to visit Jason. However, after walking a short way she decided I was doing well enough to go visit ICU! It was so good to see Jason sitting up and so healthy already. His colour was already better than I’d ever seen it and he continued to improve over the next few days. When she came to see us on Thursday, the physiotherapist gave up on both of us as we were up and walking. She declared that as long as we continued to do that, she was not really needed and wasn’t going to keep charging us for work we obviously didn’t need. On Thursday we also both moved to the Transplant Ward, Jason in his own room as he needed isolation and me with two other ladies. The hospital we were in was amazing and Jason referred to his room as a hotel room. Apart from the bed and drip when he needed it, it really did not look like a typical hospital here is South Africa. We particularly enjoyed the coffee shop downstairs and went there at least once a day, to enjoy a decent cup of coffee, Jason in his surgical mask! On Thursday we were sitting at the coffee shop and a group of people were there handing out teddy bears for Mandela Day (South Africans celebrate Nelson Mandela’s birthday by doing 67 minutes of good to remember the 67 years he spent in jail.) The teddy we were given was dubbed Sir Lancelot to keep with the theme of Merlin.
Coffee at the hospital with Sir Lancelot.
Saturday was my birthday and I woke up in the hospital with laxative medication waiting for me (it is important to get your insides working properly after abdominal surgery) but shorty after that I went through to Jason’s room where a friend had organised cake and gifts. I also got released from the hospital and could stop taking the laxatives!!!!!! Birthday blessings come in different ways depending on the circumstances. Jason stayed in the hospital for another few days to ensure his medications were working well. That evening I again celebrated with a couple of friends over a small meal. The biggest impact on my life since surgery is a reduced appetite, which is not necessarily a bad thing. The early days I was a bit worried as everything, including chocolate, tasted terrible. I warned Jason that if that didn’t resolve I may need my kidney back because life without chocolate was not an option. He was relieved when my taste buds sorted themselves out once the anesthetic was out of my system.
Birthday celebration in the hospital.
Sunday evening I took my last pain medication. I still had plenty, but no longer needed it! I spent the next 10 days in Johannesburg in case of any problems and my mother and I were blessed by a friend of Jason who let us stay in a beautiful log cabin on his big property. Lots of space to walk and visit with the pig and chickens and soak up the sun! It was good to get back home to Port Elizabeth to my furkids and all my friends and family here. Apart from a few days when I had a pain at one of the incisions (possibly caused by doing a bit too much and pulling an internal stitch leading to some internal bruising) I have been doing amazingly. I am being very good and resting lots with only walking, although I’m very keen to get back to Jiu Jitsu as soon as I am cleared to!
About ten days post-surgery.
The place mom and I stayed after surgery.
Jason is doing very well even with some minor challenges getting his medications to the right levels, which is a normal part of the process for organ recipients and I’m looking forward to seeing him at the end of August when I go up for my 6 (well, it will actually be 7) week check-up.
Three weeks post surgery – my run with my housemate. (I walked it.)
We shared our story with the local newspaper and it was put as the main front page story on the Saturday edition, which we really did not expect. We wanted to raise awareness for organ donation, without realising that August is National Organ Donor Awareness month in South Africa. I also did an interview on a local radio station. Although I’m glad it does create awareness, I still don’t really know how to respond when people tell me that I’m a hero or such like. I will continue to raise awareness in my own way and am particularly excited to show the world what exciting adventures I can have with only one kidney. There are some exciting plans for the next few years, so stay tuned. But first I need to get back on the mats…
