When my son was in his late 20s, he was diagnosed with a type of kidney disease called IGA Nephropathy. He had been feeling under the weather for some time, but we all just put it down to him leading a busy life and burning the candle at both ends. The doctor recommended he do a blood test just to be sure everything was okay. 24 hours after they tested him, he was admitted to hospital for really high blood pressure and diagnosed with kidney disease.
The doctors explained that nothing had caused his kidney disease. Sadly these thing sometimes just happen, and it was just bad luck. They did a biopsy and found out that his kidneys were working at 6% capacity.
His renal team were brilliant at explaining everything to us during that really difficult day. We spoke for over 45 minutes, discussing the different dialysis options. They explained that dialysis would keep him alive and keep him functioning, but a kidney transplant would be better for him in the long run. My wife and I both immediately volunteered to donate.
Beginning the donation process
Again, the team were fantastic at explaining that there was a lot involved in donating a kidney. There would be a lot of tests, and there was always the possibility they’d find something wrong with us that meant we couldn’t donate. We both went away and did a bit of our own research to make sure we understood everything, but there was never any doubt that we wanted to move forward.
The doctors were right – there were a lot of tests involved! There were lots and lots of blood samples, scans, 24-hour blood pressure monitors, all sorts. I also had to speak to an ethics advisor who explained the risks involved in donating a kidney. As a project manager by trade, I understand that risk is always involved in anything you do, and it was really useful to have it all explained early on in the process. Although, it was interesting to hear that there was a higher risk of a car accident on the way to the hospital than having a serious issue during the surgery.
They got to the point of planning an MRI scan and had to choose one of us to move forward with (they could always then test the second person if the first wasn’t able to donate for any reason). The renal team chose me, as I had the same blood type as my son, and at the time I was under 60 while my wife was over 60, which meant she would need more tests than me.
During the process they recommended I lose a bit of weight, which would help me to recover quicker after the operation. Fine with me, it was a good reason to set myself the goal!
Honestly, I didn’t feel nervous at all during the process – we both knew we would donate if we were able to.
Arranging the transplant
After all the tests, we were told the brilliant news that I was able to donate to my son and a date was set for the transplant. Sadly that date then got cancelled because of Covid, but the renal unit was keen to resume transplants as soon as they could. Some time later they rang up and asked us to be their first kidney transplant post-Covid.
We were given a transplant date for about two weeks later. That was probably the first time I felt nervous, as it all started feeling quite real! Again, though, there was no doubt it was what I wanted to do.
Because of Covid, I had to go into hospital alone when I was admitted the day before the operation. My son was able to come in and see me in the morning to wish me luck, then soon after I was walking down to theatre.
I don’t remember the operation, but they told me everything went well. I needed to rest in my hospital bed for a day, but the following day I was able to see my son in his ward. The difference in him was amazing. His skin colour had changed from a dull grey to a lively pink. His renal team were really happy with how everything went. It was a really emotional moment for both of us.
I stayed in hospital for three days for them to keep an eye on me, and my son was in for four days, before they let us go home to continue our recovery. I definitely felt worn out for a few weeks and would get exhausted despite doing nothing. My wife made sure we both did a bit each day to keep ourselves moving, even just a short walk. The worst pain I felt was whenever I sneezed! It was also awkward to get to sleep for the first week, until someone recommended I try hugging a pillow which really helped. Other than that, the recovery was as fine as could be expected.
Within about 4-5 weeks, I basically felt back to my old self.
The difference in my son
His operation was less intrusive, which meant he actually recovered quicker than I did – though he had to go to hospital a lot more to check the kidney was functioning well. Everything went as planned, and with each day he got better and better. Nowadays he leads a really active life. He went surfing after Christmas!
At the worst point, my wife and I were terrified we were going to lose our son. We built our lives around supporting him however we could. Seeing him so healthy and well in himself after the operation is all we could ask for.
Yes, I was in a bit of pain for a short period of time after the operation, but I wouldn’t even call it being unwell. It was just a recovery period. The long-term gain from the transplant is worth it every time. All it took was a couple hundred grams from me. He can have that!
If you’re looking at donating a kidney, be ready for the journey. It will probably take longer than you think and will be frustrating at times, but try to take a deep breath. The doctors are brilliant at explaining exactly why each stage of the process is needed. Whilst it can seem like it takes a long time, in reality it’s going as quickly as it’s able to.
The hospital was brilliant throughout the whole process to remind me that if it was ever too much, we could take a break or stop the donation. They made it clear at every point that I was in control and it was my decision whether I wanted to keep going. Having been through it all, I understand why it’s not for everyone. I chose to donate and it was the right decision for me, but that doesn’t mean it’s right for everyone. Take the time and make the decision that’s best for you.
