If I was limited to giving just one important piece of advice to somebody who is new to spinal cord injury then it would always be to "look after your kidneys". You may well argue that looking after your skin is the most important part of being in a wheelchair. However, a pressure sore albeit a horrible experience is not a life-threatening condition, unless of course, you get a serious infection. However, you need your kidneys in order to survive so keeping them healthy is so very important, especially if you are disabled and use a wheelchair.
After I left the hospital in 1987 the annual hospital checkups that I should have been attending gradually declined over the years until I fell off the hospital's radar and didn't even receive any reminders. It was a serious bout of sepsis in 2008 that basically kickstarted me into taking my health more seriously. I can't remember anyone pinpointing exactly what brought on the sepsis but with the benefit of hindsight, I'm almost 100% certain it was my right kidney which I believe been infected for quite a long time.
I spent three weeks in ICU recovering from sepsis two of which were in an induced coma. After leaving the hospital it wasn't very long before I started to feel nauseous. Nausea gradually increased as we approached Christmas 2008. It got to the stage where I was having a great deal of trouble keeping any food down. I could just about manage two or three small mouthfuls of food but then nausea would take over and that would be the end of the meal. I then started waking up in the middle of the night being sick which meant getting my poor parents out of bed three or four times a night. Christmas 2008 was awful, I couldn't even eat my Christmas dinner which is unheard of. Things really didn't improve after Christmas and it finally got to the stage where I couldn't take it anymore. I went into the spinal unit at Salisbury so they could investigate what was wrong. It actually turned out that my right kidney was full of poison and pus. After clearing it all out I felt so much better. In fact, my appetite came back straightaway so I was able to start enjoying food again. However, I was then told that the right kidney was only working around 30% of its full capacity due to a blockage that had probably stopped urine getting to it. I was told there was a possibility that the kidney could cause more problems and it may be a better option to have it removed. I don't think I was in the right frame of mind to agree to that right then so I said I sleep on it for a while. In June of that year, I went back to the hospital had the kidney removed because I just couldn't face the possibility of having to go through another bout of sepsis which very nearly ended my life the first time.
Unfortunately, it wasn't to be the end of problems I would have with my kidneys I kept up with my annual scans which on a couple of occasions did find more stones in my one remaining kidney. I had another operation to remove a stone about three years ago. However, I believe the surgeon left a very small stone in the kidney thinking that it probably wouldn't cause any problems. Now I learnt something very interesting from this last visit to Salisbury. Kidney stones are covered in bacteria which can accelerate the growth of the existing kidney stone but also encourage the growth of more stones. This appears to be what happened in my case. At the beginning of 2018 after having a scan on my kidney they discovered a large stone. I was booked in to have it removed but unforeseen circumstances stopped me from having the operation on two occasions. Finally, in mid-December, I went in for the op only to wake up to be told that it had to be abandoned because the stone was far too big to remove in the way that they had planned. Thankfully, they got me back in towards the end of January 2019 and after a seven-hour operation managed to remove the majority of the stone. There were still two or three pieces left inside the kidney which were removed a couple of days later. For the first time in years, I was stone free.
It transpired that the stone inside my kidney was virtually the size of the kidney itself. How my poor kidney continued to function with something like that inside I will never understand. It just goes to show how amazing the human body is and what it can actually put up with in order to carry on keeping you alive.
I spent the first few days after the operation in ICU because there was a very high risk that I would develop an infection like sepsis which is life-threatening. Not surprisingly I did suffer from an infection but thankfully it wasn't sepsis. After two or three days they put me onto Downton Ward which was a blessed relief because unless you're in a coma it's virtually impossible to sleep day or night on the ICU due to the noises and the fact that they keep the lights on most of the time. Even when they did dim the light you could probably still read a book quite easily. It only takes a pinprick of light to keep me awake. The other thing that became very apparent once I moved back onto a normal ward was the absolute loneliness of being on a ward where you just don't hear people talking and only see the nurse when they are taking your OBS or giving you medication. I honestly thought I was starting to go a little bit crazy when I was lying in ICU. I was given a set of earplugs and a sleeping mask but that just made isolation even worse. So, in the end, I just resigned myself to the fact that there was no way I was going to sleep on ICU. Thankfully, they had a television on a stand which I could put either side of the bed, that was an absolute godsend, don't know what I would have done without having television to watch for those few days.
I spent the best part of 11 days at Odstock Hospital in Salisbury, the longest period of time I have spent on the wards since leaving in 1987. Originally I was a patient on the Spinal Unit so I've always preferred to go on to either Avon or Tamar Ward where I knew the nurses were used to looking after people with spinal cord injury. However, the spinal unit is often very busy and there are no beds available so nowadays spinal patients to the main hospital and stay on Downton Ward where the nurses have been trained to look after people who are paralysed. I must admit to being terrified when they first told me I will be staying on Downton Ward and not the spinal unit. However, after the first night on Downton Ward, any doubts I had were soon gone. The nurses and healthcare assistants are absolutely fantastic and they looked after me extremely well.
It's important for me to express my deepest gratitude to Mr Brewins and his team who carried out the removal of my kidney stone. I have nothing but admiration for these people who basically saved my life. One of the registrars called Bob who would visit me most days to give me an update on my progress told me that if I had left the stone for another six months without treatment then I would have almost certainly developed sepsis. And we all know what that illness can lead to.
Looking after your kidneys is simplicity in itself. All you need to do is make sure you drink plenty of fluids each day. That can be in the form of water, tea, or fruit juice, but definitely not alcohol. Personally, I take on board a minimum of 2 L of water every day and then top that up with cups of tea, both normal tea and caffeine free fruit teas. I also drink a couple of cups of coffee and a couple of glasses of honey and PLJ (pure lemon juice) in hot water. I've had it on good authority that it is really impossible to drink too much fluid because your body won't let you. But drinking a minimum of 2 L of fluid every day will help keep your kidneys healthy. Unfortunately, there's nothing you can do to stop kidney stones from developing. People in wheelchairs are more prone to developing kidney stones than able-bodied people. Hence the importance of yearly scans.
I only have one kidney now so I've got to look after it properly. Thankfully, the human body can cope perfectly okay with just the one kidney so as long as I keep up with my kidneys scans and carry on drinking plenty of fluids I should continue to keep my one remaining kidney nice and healthy.