Hello I am Shane and I am a dialysis patient. I was found to have kidney failure in 1993 and I was started on dialysis in 1995. I first went onto CAPD which I was happy being on. At first you may think doing the bag changes 4 times a day daunting but for me I got on with my life going fishing hanging my bag up on the tree, going to the beach hanging the bag up on a beach umbrella carrying a baby’s holdall bag with all the things I needed for a bag change, the bag itself wrapped with a hot water bottle in a towel (People must have thought well where is the baby); perhaps they thought I was going to make history and have a baby myself because I am only small and it did look at times with the fluid in me that I could be the one having a baby Ha Ha - even my mates in the pub would take the mick out of “my beer belly” (if only).
But I didn’t care, I was not going to let it get to me, when on a good day nothing was going to stop me doing the things I wanted to do. All right when I was feeling a bit under the weather I stayed in and rested but overall I found this system very good. I was very sad when 12 months later I had a few problems with the tubing, but it was because of problems I had before dialysis not what the dialysis had caused. I would go back on it again now if they said I could - I am a great ambassador for this system.
Anyway, I had to go onto Haemodialysis which, after being on CAPD, I did not really want to do but, as you know, we have no choice. I must admit I did feel a little scared the first few weeks. But I got used to it and now I do four hours three times a week, sometimes I am in Exeter, sometimes Taunton, sometimes Barnstaple (now moved to South Molton). I am a little loud at times and try to keep laughing (after all it is no good crying) so I think the nurses and Doctors etc send me away when they want a rest (Ha Ha); I think they love me really.
I have got to know some lovely people and we really are like one big happy family. After seeing them all so often you do get to know them personally and if one patient that you know is not doing very well you really do feel for them. The nurses are all brilliant, kind and caring. The Doctors all speak to you and even all the cleaners, tea ladies, electricians etc are like part of this very large family. Sometimes you feel if you are feeling as well as can be expected that you are not just going for treatment but for a few social hours out.
Anyway, two and a half years ago my Mum said she wanted to give me one of her kidneys. I did not want her to as she is my carer and I have had a lot of medical problems all my life I am now 34 and I was afraid something would happen to her. But being Mum she kept on until in the end she gave a blood test to see if she was able to. Well it was found that she could and over the following 12 months she went through every test needed and even she had a few scares with different things. But on 3rd December 1997 she gave me what she said would be the best Xmas present she could ever give me, the gift of a better life.
There was a lot of mixed feelings and I am not going to deny that I was afraid for Mum. Mum was afraid for me and poor old Dad he was in a worse state than any of us. We are a close family, there is only the three of us, and for him to see the two people he loves more than anything going for major surgery must have been nearly unbearable (me and Mum can only imagine what it must have been like for him, after all we were going to have a few hours nap).
When we woke up we were both sore but so very happy everything had gone allright. Mum’s bed looked like a florist with flowers, cards galore and balloons everywhere and mine looked like a card shop. We were all so happy and thinking about the new future. We were having cards saying Merry Xmas and Hope you ‘get well soon’ written on them, between us we had so many things from well wishers we could not thank people enough for their caring and Dad was’ just so relieved everything was over and okay.
But SAD to say our happiness was to be short lived. I had the transplant on the Wednesday and by Friday afternoon there was a problem with the kidney Mum gave me. I had scans etc and by Friday night I was taken to theatre again, they could not save the kidney.
I had a renal thrombosis and they had to remove it. Mum sat by my bedside all night with Dad even though she was in a lot of pain I dread to think what they must have being going through. We just did not know what to say to one another: no words could help heal the pain we were going through at this time. When we got home it was nearly Xmas and now the Xmas cards from people were saying ‘Merry Xmas and we are so sorry that things did not work out’. Flowers were coming from everywhere, our sitting room was full of decorations, presents, flowers, cards wishing us a Merry Xmas, cards wishing us both a speedy recovery and cards saying how sorry they were. Every one brought tears to our eyes. People were so caring but it did not take away the pain we were going through that the best Xmas present I could have ever had was taken away from me. The Xmas itself was quite stressful although we did try to make the most of it after all we had come through. We were both all right; that was the main thing.
Well, since then, I have been back on dialysis and still waiting. I have some antibodies following what happened and although I have been up to Bristol twice after being called for a transplant they think I would have rejected them so it was no go. Mum is having a few problems but nothing she cannot cope with and sometimes things do get a bit stressed out but we have a few tears or a moan and then get on with things. Life is too short not to try and make the most of things, even if on dialysis.
Anyway the whole point of this is that we feel sometimes it is good just to talk about one’s problems (not that anybody can help you) but just being able to talk and have someone to listen to you helps. And we do think that people that have been through the same sort of problems are better listeners than people who have not. When we have wanted someone to talk to and spoken to neighbours or friends etc they do not always understand what you are feeling as sometimes I believe you have to have been there yourself to understand.
We have been there when people say ‘there is worse off than you, try to forget it’ or the like but we don’t want people to feel sorry for us; all we want is to be able to have a little moan and have a pair of ears to listen. Then we feel better and on we go again.
So, if anyone of you reading this gets a day when they are feeling down in the dumps and want to just get it of their chest, please don’t be afraid to contact us either for a chat, a little moan, a cup of tea, anything; you can give us an earbashing if it will help you get back on top of things. We have been there CAPD, Haemodialysis, Living Donor transplant and we found we did not have anyone to talk to who really understood.
I think you have had to have been there to know how to listen and be able to help others. So, if you are down, get ringing, typing, whatever. As long as after you have been in touch with myself and/or Mum you are feeling a little bit like laughing and feeling a little less stressed then we will feel that this article has done us a lot of good that by helping you, we are helping ourselves.
We hope you feel you are able to contact us whenever, for whatever - we are always ready to listen.
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Please Note: The NKF is pleased to display Shane’s “offer to talk” but would like to make it clear that this is not an offer of professional counselling. Shane is only offering a “patient to patient” chat.