This is Nathanael’s story. Please read it and understand what life waiting for a kidney transplant is like. Hopefully it will inspire anyone who has not signed the organ donor register to sign up. You will see a link on the right of this page where you can sign up.
Nathanael Adams – My life on dialysis waiting for a kidney transplant.
I was born with dysplastic kidneys as a baby, and up until the age of 3 years old, I was fed through a tube that went into my stomach, through my nose. Thankfully I had just enough kidney function to get me through the first 3 years of life, before I received my first kidney transplant.
After I’d had that transplant my parents were amazed at the amount of food I ate! It was the first time I’d eaten proper food, having been so unwell. I was stable with my kidney, apart from the odd return journey to Guy’s Kid’s renal unit, when my kidney started to reject on a number of occasions. This was always reversed with immunosuppressant’s and I was soon sent home again. For the
majority of the time that I was in school, I had a good childhood growing up, with very little trouble from my transplanted kidney. I was able to do everything that normal children like doing, like playing football, running around, parties etc. In the later stages of my kidneys life, I had even been a water sports instructor, specifically teaching windsurfing. Windsurfing and sailing were my biggest passion back then, and I spent many a happy summer teaching others what I enjoyed doing. I did all this living with just one kidney! Many people don’t know that you can survive on just one kidney. A kidney has to lose 90% of it’s function before dialysis and a kidney transplant become the last resort!!
Unfortunately the day that I had been dreading came in August 2003, having not long turned 20 years old. After almost 17 years with my transplanted kidney I was told by doctors that I would have to start dialysis, and be placed on the transplant waiting list for another kidney, as my transplant was starting to fail. I’m not ashamed to say that I did a lot of crying back then. I had taken it for granted that it would last me a lifetime, and had tried to ignore the doctors who had said I’d probably need another kidney in my lifetime.
For 4 years I dialysed using the CAPD/APD system. This involves draining a sugar/glucose based fluid solution in, and out of, your peritoneum cavity, through a specially implanted tube, every 4 hours. This was carried out at home, so I was free of hospital for the majority of time. The only time I had to attend hospital was for monthly check-ups with my consultant, or if I contracted peritonitis, which was the biggest danger/worry with peritoneal dialysis. I then managed to get onto the overnight version of CAPD, known as APD. This involved the same glucose based solutions, but the frequency of solution changes were carried out by a machine overnight, whilst I was sleeping. This meant I was having 8 hours of dialysis a night, which in turn meant I had all my days free. The 4 years that I did APD for were the best years of my dialysis life, and pretty much the next best thing to having a kidney. I had no fluid or diet restriction, so could eat and drink what I wanted, and I had most of my time free to get on with things that needed doing.
However, after just over 4 years on APD I contracted a bad peritonitis infection that meant the removal of the dialysis line, and my peritoneum being damaged to the extent that it probably wouldn’t have worked very well a second time round. This meant I now had to start Haemodialysis, where you are attached to a machine and have your blood cleaned. This is the most aggressive form of dialysis, when compared to PD (Peritoneal Dialysis). Because you’re dialysing every day with PD, your blood levels stay quite stable, and you generally feel well most of the time. With Haemodialysis you have 3 lots of 4 hour sessions a week. This means that once your blood has been cleaned by the machine, it reaches a more normal level, as if you had a kidney. But because you’re not dialysing every day with Haemodialysis, the toxins in your blood have a chance to rise the next day, leaving you feeling ill and sometimes sick. This means your blood levels fall to a ‘trough’ after you’ve had dialysis, and then rise to a ‘peak’ again the next day, when you haven’t dialysed.
I have now been dialysing on Haemodialysis for 4 years, and dialysis altogether so far for 8 and a half years. I currently attend a local satellite dialysis unit 3 times a week. Each session as mentioned above, is 4 hours long. The dialysis machine runs for 4 hours and removes blood from me via a ‘fistula’. This is one of your own veins, connected to an artery (usually in your arm), so that the dialysis needles can be inserted into your arm. Because the dialysis needles need to remove a sufficient amount of blood to allow good dialysis, they are a lot bigger than the needles that are usually inserted into your veins in order to take blood samples. It would be impossible to put a dialysis needle into a normal vein, as the vein would simply collapse. I cannot feel anything going on whilst the machine is cleaning my blood. It’s as if you are just sitting in a chair. The dialysis machine runs your blood through a filter, whereby it uses osmosis to draw the toxins out of the blood as it passes through the filter. I often feel ‘washed out’, and exhausted by the dialysis treatment. I often don’t want to do anything after a dialysis session, except rest. I generally feel worn out most days, and can no longer manage to do things that I used to enjoy doing. I have not managed to work for the last 8 years, since being on dialysis, due to being so tired and worn out.
My diet and fluid are restricted by Haemodialysis. I am restricted to just 500mls of fluid in 24 hours. This includes fluid in foods, and also things like ice cream, yoghurts, soup etc, which all have to be counted as part of your allowance. This is usually the hardest part to adjust to, as when my transplant was working, I was used to drinking 2-3 litres a day. My diet is also restricted, and most diary and potato products have to be avoided due to the way they affect certain levels in your blood. These can be life threatening if the levels go too high. The diet is very restricted, and there seem to be more things that you are not allowed to eat, than the things that you can eat!
Unfortunately, I’ve now been on the transplant waiting list for 7 years, and there is no sign of a transplant yet. My family members either can’t, or aren’t willing to donate for one reason or another, so I am left waiting on the list, of for a very generous person to one day decide they’d like to donate their kidney to somebody, and it matches my particulars! Part of the reason I have been waiting so long though, is due to having a large number of antibodies. These are the body’s defence mechanism against foreign objects, i.e. disease and illnesses. Antibodies fight off anything potentially deadly to the body, and, unfortunately that includes donor kidneys, as they’re not our own tissue. So, I have to be matched very carefully. I can have treatment to try and remove the antibodies, but this requires a live donor, whereby the operation date can be set around the extra treatment I require. The only way I will get a kidney from a donor on the donor list, is if their antibody ‘status’ matches mine, and makes the likelihood of rejection a small one. But, this could mean a long wait on the list.
So, to get another kidney would change my life dramatically! I would no longer have to go to hospital 3 times a week for dialysis, for starters. As my blood would be constantly clean,I’d hope to feel more energetic and alert. I’d hopefully be able to find myself a job, and go back to work, and generally enjoy all that life has to offer again! But, I’ve no idea whether I’ll get that call for a transplant again. It all depends upon people being signed up to the organ donor register to donate their organs after death, or else deciding that they’d like to donate one of their kidney’s, in order to help someone else.
I am amazed by the people and families of donors who donate their organs, be it whilst they’re alive, or after death. If it weren’t for them, I would not be here today. Having received a kidney myself, it is also the reason I am signed up to donate my organs after death, knowing the difference it makes to an individual’s life.
Comment by Di Franks: I have put a paragraph in bold so it stands out. Just look at your measuring jug as to how much 500mls in liquid actually is. Even on a hot boiling day when Nathanael would be gasping with thirst, he could not have more than 500mls. Take away the fluid in food and that does not leave much for an actual drink. Then there are the food restrictions ……
Someone once said to me that people on dialysis are lucky as they have a machine to replace their kidney. The dialysis machine does NOT replace a persons kidney’s. Only another kidney can do that. Being on a dialysis machine is like being on life support. It keeps a person alive until a kidney can be found. Unfortunately dialysis for many people is not enough and people die waiting for a kidney even though they are on dialysis.
PLEASE …. sign the organ donor register if you have not already and help someone like Nathanael get his life back.