What patients say

...about being diagnosed with kidney failure

I found it very hard, at first, to accept the fact that I had kidney failure and to adjust from having an extremely busy job that I loved, to doing so much less. However, I soon realised that I could never "go back" and decided to look ahead. Balancing the medication, hospital visits and blood tests has become a way of life. I am nearing dialysis and feel, for me, it's the next step to a normal life. Think positive - it's the only way. - J.S.
Having been diagnosed as having kidney failure, I was in a state of mental limbo! Not knowing what to expect... then I was introduced to the Haemodialysis Clinic. The staff are so professional and caring - you are put at your ease straight away. In the end, it's just like going to a club. The friends you make at the Unit are all in the same boat as you. It can be tough at times but it can also be fun. - J.M.
I have found that the most-needed quality for success is having the right attitude to your illness - not letting it get the better of you. Never give up, do what you can, keep busy. - G.

...about diet

It was over 19 years ago that I was confronted with the very strict and boring renal diet sheet. At first it all seemed very difficult trying to abide by the restrictions. Over the years, you learn to introduce a few treats to the diet, but this has to be done in a sensible manner. Sometimes, if I fancy something not included in the diet, I eat it an hour before the start of dialysis. Or, after getting my blood results, I check to see if my potassium levels will allow me a little extra food. There are ways of cheering our diet up. It's not so bad after all. - G.E.P.
The process of monitoring my fluid intake has become second nature to me. - A.B.
The various renal cookbooks are well worth buying as they stretch the possibilities of the diet. - M.J.P.
It is fashionable to serve boiled sweets after a dinner party... 'After Eights' are really OUT. - R.B.
I'm of the opinion that rather than cutting something out completely, whatever it is, just have a tiny little bit of it now and then, then you don't crave after it. We don't have to eat separate meals; once you get into it it's not too difficult to keep away from the stuff you shouldn't have. - P.M.

...about having dialysis

Make sure people explain the treatment and alternatives carefully to you and ask plenty of questions. - P.M.
For first timers my advice would be to find out all you can about dialysis. Don't be afraid of it; while you can't look forward to it, it is better if you can try to work around it and take control. You dialyse to live, you don't live to dialyse. - P.
The greatest advantage is that you feel so much better after two or three weeks of dialysis. The technology and jargon of dialysis soon becomes familiar. - M.J.P.
Dialysis for me is no longer something to dread every week, but which has to be done. It has just become a way of life. - E.C.
Do talk to other patients to gain day-to-day tips on everyday problems - it's reassuring to know you're not alone. - M.J.P.
I think it would be useful to have a 'drop-in' place where you could come and talk now and again to other patients and families, and can pick up different bits and pieces. - P.M.
The Unit goes out of its way to help me continue to work full time and commute to London. - M.J.P
On dialysis you can't always work like you used to be able to: you get out of breath quicker and you get tired a lot quicker too, so it does restrict you. You just have to slow down a bit, take things more steadily , and plan ahead a bit more. - P.M.

...about haemodialysis

I accept haemodialysis with a very positive outlook. It enables me to lead, as near as possible, a normal life. - E.G.
Within reason, life isn't that different, when you come to terms with the regime. - G.
I was offered a choice between haemodialysis and CAPD but, with bad arthritis and living alone, I thought I would be safer and better off on haemodialysis and have been on it now for two and a half years. I came in with no idea what was going to happen but it was not too bad at all and I have been coming here ever since. And anyway, I would have been dead by now otherwise, so the alternative of not having dialysis doesn't appeal to me! - P.
On the early morning shift, we were shouting and carrying on for example about what we watched on television the night before... It was lovely, everybody including the nurses laughing and joking, and that suited me. It is not a medical unit it is more like a family unit. - P.

...about home dialysis

My own feeling about home haemodialysis is one of freedom. I can have the day to do what I want and then go on dialysis in the comfort of my own room. No disrespect to the Unit staff, who are lovely, but you do have to fit in with their times. At home, as long as you have your dialysis, you can please yourself. Nurses and technicians are always at the end of the phone if you need them. - M.J.L.
After a little while, the whole procedure becomes second nature to both patient and partner - we find home haemodialysis a far more relaxed procedure than in hospital. We have dialysed at home for more than 20 years now - we can say with honesty "it's not that bad." We share the worries - he dialyses, I look after him, and together we cope. We don't ever cut corners and always ask for help if we need it. - C. and S.
Any problems which arise with me or the machine will be solved with just one phone call to a nurse or service engineer - you are never on your own, which is a comfort and gives you confidence. - N.W.
When diagnosed I felt we would never cope with the complicated (so it looked) machine, but the renal nurses teaching soon got us feeling more confident at every session. When it was time for us to go it alone, panic struck - at the beginning we were constantly (or so it seemed) phoning the girls with our queries, and they told us what to do and it always worked. Now dialysis for me is no longer something to dread every week, but which has to be done. It has just become a way of life. - E.C.

...about CAPD

We like to go out for long days, and the problem is where to dialyse (you have to be careful about cleanliness of course). On several occasions we used the car, shutting all the windows to make sure there was no dust coming in and connecting up very carefully. I sat in the back and S. held the bag out of the window for the half hour it took to dialyse. You can imagine the funny looks we got! Still, it gave us our freedom. - M.W.

...about APD

APD gives you a lot more freedom. It basically means that I dialyse myself at home overnight. The machine fills and drains me during the night four to five times with different amounts, depending on how much fluid I need. It's very simple to do really as long as you have the right pipe going to the right colour-coded bag. - P.M.
It affects my appetite a bit - especially having fluid in your stomach with the APD. The effect is that I feel hungry and start eating, but my stomach feels full very quickly. It takes quite a bit longer to finish a meal as a result (and the food is getting a bit lukewarm by the end of it). - P.M.
It is much better since we moved - the hospital sent a letter to the Housing Association saying that we needed to have a spare room for all the paraphernalia that I needed so we are fine now. - P.M.

...about being on the waiting list

Do not be afraid of joining the transplant list - the benefits far exceed any risk. I have been free of dialysis and diet for eight and a half years - and I was already at pensionable age when I had the transplant! - E.M.
I'm now on the transplant list which means I'm given a pager so they can get hold of me anytime should a transplant become available.. I tend to try and forget about it and carry on as normally as I can. - P.M.
Resign yourself to a long wait on the transplant list - five years in my case. - E.M.

...about having a transplant

Having a kidney transplant after years of chronic kidney failure was the most wonderful thing to happen to me - as of course to my family and friends. To think no more dialysis and being able to eat and drink as before, and not to feel ill most of the time. I had my transplant nearly six years ago and I will be forever so very grateful for this Medical Miracle. - M.P.C.
Within a year I had a kidney transplant off my mum. While it worked it was great; I had no problems whatsoever and was able to lead a normal life. Unfortunately, though, after about six years, the transplant failed and I had to start dialysis again. - M.W
(M.W had another transplant just over two years later). "I did not feel as I did when I had my mum's kidney - a get well card came through the post and all I could think of was that somebody somewhere was having sympathy cards. I just did not feel right about it and that carried on right the way through the time I had the transplant. After about six months the transplant started to reject and I had to be put on steroids. Every time I had an infection or a bout of rejection I was given more steroids and getting larger all the time. Although I was told it might last another couple of years, I decided I was having such a poor quality of life I would be better off on dialysis again. - M.W.
When I was diagnosed with kidney failure when I was 21, I thought my whole life was over. I was shown a booklet about transplantation, and I admit I was terrified of the thought of it, but three years on I am now very well. I have been married a year, and have a normal life. - L.A.M.
I was so excited when I received the call - and so despondent when my kidney did not start working immediately (although I had been warned it might not) - and so jubilant when it did! I've enjoyed nearly five years of holidaying, cycling, going to the gym, eating, drinking and socializing and having a career. - G.P.N.
Don't panic if things don't immediately seem to be working properly. In one case I know of the new kidney finally took off after six weeks and is still in fine shape 14 years later! - E.M.
The joy of hearing the unbelievable good news, swiftly followed by the desire, almost panic, to reach the hospital in time... Although I had prepared myself for the operation, there was a feeling of excitement and anticipation. I knew the risks, but I genuinely felt that my life was about to change dramatically as I was transported to the theatre. The few days delay between transplant and the return of renal function is the longest period of my life! The joy at regaining a functioning kidney is overwhelming.
No more dialysis. No restricted diet. No fluid restrictions.
To be able to walk into a restaurant, order and enjoy any meal is a wonderful feeling. The possibility of a few days away - even a full holiday - becomes a reality. The quality of my life has changed beyond all belief. Before I encountered End Stage kidney failure, I did not appreciate the difference a few pounds of healthy kidney could make. - L.H.
I was out of hospital in ten days and eating a normal diet the day after the operation. After a running-in period, I was free to take a holiday anywhere - but no sunbathing! I had been on dialysis for six years, mainly at home. But I have enjoyed this for ten years. - J.H.
I often think of my donor and thank him for his gift of a full life. - L.H.
I'm eternally grateful to my donor and their family for the gift, enabling me to live and appreciate life to the full - G.P.N.
I wouldn't want a transplant kidney from any member of my family. I wouldn't want them to get a bad infection that could affect their existing kidney and end them up in the same position as I was. I don't feel I could impose that kind of restriction on another person. - P.M.
On Feb 13th this year I had a little baby girl. She weighed 6lb 9oz and is perfect in every way (she is my little miracle). Without my new kidney, I would not have been able to achieve any of these wonderful things. - T.A.S.

...about relating to the renal team

Never be afraid to ask for help or for explanations about things you don't understand. - I.R.S.
After many years of dialysis we can say with certainty that there will always be help and support from renal staff if you ask for it. - C. and S.
From my very first visit to the hospital I have received the most wonderful support from staff in the Renal Unit. Their kindness, care and friendship has been a tremendous help. - J.S.

...about the emotional effects of kidney failure

We have found it extremely important to have contact with other patients - worries are always less if shared with people who understand. - C. and S.
It can be easier to talk to close friends than to family about some things. - A.B.
Remember there are support groups throughout the country (connected to the Kidney Patients Association) where you can talk through your experiences. - I.R.S
I think when you have a common denominator that links you with other people you tend to relax more because you know that they are going through - or have gone through - the same sort of things that you are. You can have a chat and say what you do about this or that, you can have a laugh and a joke about it but also get some quite serious things sorted out. - P.M.
Try to continue to have a holiday break using dialysis facilities around the country and abroad. - I.R.S
I do miss the flexibility of alternative treatments and feel less in control than I was before. One of my strategies for coping is to treat dialysis as a job - as if I was going to work. - M.W.
I can be a bit of a misery guts on my own. I have a "feel sorry for myself" day now and again when everything seems against me. - P.
As regards my personal feelings about dialysis, I am grateful of course that it enables me to continue, but at the same time a bit resentful that I have to be hitched up to a machine. It can be difficult to accept the loss of freedom. Ultimately, though, what you cannot cure you have to endure; it's as simple as that. - P.
I know you have to take a chance with a transplant and its consequences but I was a bit resentful about what had happened and started saying to my husband that it was his fault for talking me into having the transplant. I know it's silly, but you just need someone to blame. - M.W.
I was really fed up for a few months because it felt like I'd come right back to square one and I was arguing with the nurses and I'd come home moaning about it. In the end, though, it's no good - you can't go on like that. You have to accept it and get on with it and not let it take over your life completely. I think I have accepted it now and am getting on alright. I like to think that with new patients I can perhaps be a bit helpful. For example, somebody might ask to speak to me to find out what it's like to be on dialysis and I'm happy to chat with them. - M.W.

...about taking a holiday...

In mid-September, I used the holiday dialysis facility at the Plymouth Renal Unit in South Devon. This allowed me to go walking and camping on Dartmoor with two friends. The planning couldn't have been more straightforward. - R.D.
Being able to take a holiday on dialysis was like being set free. It's a chance to leave all your problems at home and just enjoy yourself. Having to stick to your fluid restriction is still difficult, but most places will let you have some ice cubes. - G.
For a few years after going on dialysis I did not have a holiday. Maybe it's the feeling of being secure and you wonder what dialysis in another hospital will be like. never fear - no worries! I have been to Australia, Cambridge and Wales, and it's like 'home from home.' I have only been met with kindness and understanding. They have all been lovely. - M.J.L.
The fluid bags arrive a couple of days before we get there and, if we are going to a caravan park, we just pick them up at reception, take them to the caravan and carry on as normal. I bring the APD machine and put it on a little table by the side of the bed just the same as at home. The only difference is that we need a caravan for a disabled person which is wider so there's room for the machine. - P.M.
Not forgetting that carers need a break. - J.L.

...about carers, family and friends

I just explained it to my son simply. I find with children if you just tell them openly in a nice simple form they are fine about it. If you try and hide it from them they will know you are trying to hide something and they won't rest until they find out what it is. - P.M.
At first I didn't want to think Paul was not well - I wanted to believe that he was just the same as he was. But you get used to the changed circumstances over time. - M.M.
I don't know anybody else who is a carer. - M.M.
When we went out for a meal he was not picking what he really liked, but having the same thing that I was having. We talked about it and he said he felt guilty being able to eat what he liked in front of me. I just told him it was not his problem and he had to live normally. It was bothering him more than it was me. - M.W.

These quotes come from patients and their carers at the Wrexham Maelor Hospital Renal Unit and the Trafford Department of Renal Medicine, Brighton Health Care NHS Trust