February 23rd, 2012 | 
Author: 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
Nathanael Adams on Dialysis
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.
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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.
13 Responses to “Nathanael Adams – life on dialysis waiting for a kidney transplant”
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Nathanael,
I found your story very moving. It has taught me a few things about being on dialysis that I was not aware of before. I so hope other people reading this will have a better understanding of why it is so important to sign the donor register. Most people would accept an organ willingly if it would save their life of that of a loved one. It seems only right that if we are willing to accept we should be willing to donate and sign the register.
I know I have already donated one of my kidneys, but if I had not, then reading your story I would put myself forward to see if I was a match for you. I pray that one day soon there will be a match for you.
Thank you for sharing your story with us.
All the best
Di
x
No problem Diane! Anything to help raise awareness, not just of my own situation, but that of the many other thousands waiting for a transplant!
If it encourages people to come forward, either to sign the organ donor register, or to be an altruistic donor then it will help.
Not just for that reason though. There is a lot of ignorance when it comes to organ donation and transplants. Mainly because so few of the public come into contact with somebody who’s been in our positions, as a donor, or a recipient. So any awareness raised about the shortage of organs helps. Even patients who are fairly new to dialysis in the unit I attend are still trying to get their heads around the situation they find themselves in, and so, consequently, ask a lot of questions of the nurses, but also more ‘experienced’ patients like myself. It’s great to be able to help, and put them at ease, though.
I agree. I think if you’re willing to accept an organ to save your life, or a family members life, you should then be prepared to spare your own upon death, to save someone elses. Let’s just hope the Government sort out a plan of action to turn the organ situation around, so that more people can lead normal lives!
I believe there should be far mor education on the whole subject. Busting the myths surrounding donation and educating people on why organ donation is so important. Last year I spent the day at a school in the City of Bath going around the classrooms giving a talk on organ donation, with an emphasis on living donation.I was shocked to find that most of the children (and we are talking 13 years and upwards) really knew nothing at all about organ donation or why one should sign the register. I believe it should be compulsory in schools for all school children to learn about organ donation, perhaps having someone like yourself giving a talk or even appearing on DVD so classes can watch. The children of today are the donors of tomorrow. Also I feel children can teach their parents and older relatives about organ donation better than we can or the government can.
The government can also do far more to educate everyone and to encourage organ donation. Already if you apply for driving license you have to say whether you will donate or not. This should be extended to passports etc. At doctors appointments the doctor should be able to broach the subject and hand out leaflets and form.
Lots of people give blood. I have never seen anything there about organ donation. There should be a table there with someone who can answer al the questions and sign people up. People should be asked directly if they have signed and if not would they.
I wish I could do more to encourage people to sign up,but I just don’t know what.
Di
x
That’s a very good point, Di, about blood donors. In fact, they are probably going to be the most receptive to that kind of information/publicity, given that they are already selflessly taking time out to donate blood!
Again, with the driving license application. That’s where I signed up to the organ donor register, when re-applying for my license. Like you say, they should extend that to as many application forms for official identity documents as possible to try and increase the numbers.
I agree on the educating the younger generation. Not only are they the next donors, but certain youngsters will be the future doctors/specialists who treat us! There seems to be a lot of influence and highlighting of cancer, but very little on Organ donation, and yet people can be saved if the organs are available! I agree, there should be some form of compulsory education, not just on organ donation, but why it is important to donate. Certainly, using people like you and myself would help that, as we are tangible, real people who’ve experienced it as a donor, and a recipient. Not to mention that with the ageing population, and things like diabete’s on the rise, more people will suffer with organ failure in the future.
What about the concept of maintaining a register.
a register that stipulates unless your registered to donate you are not eligable to be a recipient?
just an idea?
Hi Benjamin,
I think in principal that is a great idea. The main concern I would have is that I cannot see doctors standing by a patient and allowing them to die when they know there is an organ available that could save them. I have taken part in discussions on this very idea before and another aspect that comes up is that some people are genuinely (sp?) scared and that if they sign the donor register then doctors will not do their best to save them when the time comes, which is, of course, totally a myth. It was also raised that putting that condition on people really amounted to coercion (blackmail if you like … you do this or we will let you die).
I thnk apart from education ….. people need to somehow be made accountable for their own health. People who need a liver transplant, due to alcohol poisoning, will not get one unles they can show the doctors they have stayed alcohol free for 6 months and that they will mak a huge effort to stay free. There have been two well known cases re this …. the footballer who had a second liver and the teenager who never got a liver as he was too ill to prove he could stay off alcohol and he died.
Then there is the argument … what about the heavy smoker who needs a lung transplant because of his smoking. He signed the register, yet there is someone who has lived a totally clean healthy life, been affected by passive smoking (as Roy Castle was) and needs a lung transplant, but they never got around to signing the register. Who gets the lung?
If only things were clear cut ….
Even if you have signed the donor regiter, it is still up to your next of kin to agree. Organs are lost because the death of a loved one is so overwhelming th next of kin cannot agree to the organs being donated, even though the person signed the register. Doctors will respect the living in this. I forget now the number of organs lost each year due to this. So one very very important aspect is for people to make sure their next of kin are fully aware of their desire to donate.
People say that an opt out system will be great. I am split on this because I feel it will only work IF the infrastructure is in place first to support it. Spain was a classic case. Spain is top of the leaderboard for organ donation. When they first had an opt out system, it made NO difference whatsoever to the amount of organs available. It was only when they spent millions on improving the infrastructure that the number greatly increased. Take America .. they are the third highest country for organ donation (donations per million) but they have the same system as us – opt in. Wales is about to make opt out law, so will be interesting to see how that goes and perhaps we can learn from them.
Personally, and I know people will disagree, which i fine, I feel we cannot dictate to people what they can or cannot do when it comes to our organs. Organ donation, whether when we are living or dead, has to be a “gift” made freely.
I don’t know what the percentage is of people that need a kidney transplant due to an unhealthy lifestyle, or the percentage of people needing any organ transplant due to their own … bad lifestyle. More needs to be done to catch those people before it gets to the stage of them requiring a transplant.
I believe I read somewhere that people between the ages of 20 and 30 are the ones that need liver transplants more than any other age group. Mainlly due to their binge drinking etc. The government is not doing nearly enough to stop this. They talk about making it law that shops cannot sell alcohol at cost anymore. Very few places ever did!!! It will make hardly any difference at all. Alcohol should be sold so much per unit is one idea put forward. I can think of many others ….
Sorry I got off topic really and started to ramble ….
I would love it that your idea would work but I fear there would be too many obstacles to get around.
All the best
Di
x
Here is a very interesting article on organ donation and opt-in and opt-out and the effects each has had on the countries that have those systems. The results are somewhat surprising
http://www.economist.com/node/21547819
Di
I was interested to read your articulate account. I have been on haemodialysis at home for the last 2 years. I am a retired GP ( early retirement due to CRF) so I was familiar with medical procedures and keen to do it at home. My wife helps me and I do 3 hours 5 times per week. I still pee a bit so the more frequent dialysis and residual urine output means that I am not quite so restricted on fluids. I feel pretty well overall but not fit enough to work. I have only just gone on transplant list as I had colon cancer and had to go 5 years from treatment before being listed. I am short on relatives as brothers all have health problems. My wife is going to get tested and I would not allow my sons to donate a kidney for me. The thought of many years on the waiting list is utterly depressing. I would even contemplated the ‘black market’ if it were safe and fair to the donor
Best of luck to you
Sorry to hear about your situation, Gavin. I was going to do haemo at home too, but my bedroom was too small as it is, and I wasn’t prepared to make compromises to fit it in. Glad to hear it’s working well for you though. Part of the problem with the wait when you’re going to and from hospital 3 times a week, is it makes it seem much longer. Nobody wants to be in hospital at the best of times, so doing it at home means you can have a bit more of a life, and hopefully, the wait won’t seem so long or stressful! Yes, the fluid can be difficult to manage, and it’s good that you don’t have to worry about it so much.
I know where you’re coming from on the ‘black market’ side. I think if it were safe, and followed strict guidelines set out here, I might be tempted to raise the funds. But there are far too many risks involved, and I wouldn’t do it, despite being fed up with dialysis after 9 years. You could end up in a far worse situation than you were on dialysis.
Hope things work out for you too, and let’s hope more awareness is raised in the coming years, that encourage more people to donate altruistically!
Thank you Nathanael
Nathanael – good luck with your search.
What blood type are you?
Hi Sam.
Thankyou.
My blood type is O+.
[…] his chances of finding a matching donor. Description You can read Nathanael’s story here: http://livingkidneydonation.co.uk/nathanael-adams-life-on-dialysis-waiting-for-a-kidney-transplant.h… What Can You Do? Consider being tested to see if you are a match. More info here: … […]