Home dialysis patient Michael discusses how Shared Care has helped give him a better quality of life
Hello, my name is Michael Winfrow. I used to be an inpatient having hospital dialysis on the Peter Moorhead unit but now I am a home dialysis patient. I would just like to tell you a little about my journey through dialysis then Shared Care and how Shared Care helped to give me a better quality of life.
I came into dialysis knowing very little about it, in fact I knew nothing only that it removed the toxins from you blood. So I just lay there very still letting people do everything for me thinking the whole process very technical. After a few visits to the dialysis unit I did notice that a man who came and sat with his wife while she had dialysis and he kept taking her blood pressure. I just thought he was probably an interfering visitor and staff thought he was doing no harm so just left him alone. No one else in my bay did anything, they all just lay there watching TV trying to make the 4 hours pass by the best they could.
Then one day after about seven or eight visits, one of the staff, in fact it was the lady who brought round the sandwiches, said that there was a process called Shared Care and that it may suit me. I said "What's that?" and she said "Its where you do parts of your treatment for yourself." I thought how can I help myself, the whole process looks very technical? But they brought me a book and in this book, everything was set out in very easy stages. So I started by learning hygiene, washing hands etc., then I would go to stores get my needles and syringes. Then I learned how to program my dialysis machine, line it and connect it to the saline and prepare it ready for dialysis. Everything you do is checked by the nurses before dialysis begins so you are not worried you may harm yourself.
Then came the part where I had to put my needles in. I had always wanted to be a home patient and knew one day I would have to put my needles in but whenever I talked to family and friends about it they just said "I don't know how you can" and so I wouldn't do it. My wife offered to put in my needles but keeping in her good books would have been an even bigger challenge! Then one day a nurse said "Come on, you have to do it one day, so do it now" and so I did. For a while, I had blood spurting everywhere. As I got better, it only ran down my arm! I think you are always going to be nervous about sticking a needle into your arm but it gets better as time goes by.
So, would Shared Care suit everyone, old and young? Yes, I think it would because you don't have to do everything. You only do the tasks you feel capable of doing. Secondly, some people may just want to fetch their needles and syringes and prepare their dialysis packs. I always think people feel better about themselves when they are helping others. So, you come onto the unit, you look around and the nursing staff seem so busy with four patients walking in at once. If you can do a little to help yourself and then this makes you feel better about yourself, you feel more respected and your quality of life starts to improve.
Thirdly and the most important, Shared Care gave me the confidence to start home dialysis training. After about 20 weeks, I went onto the home training programme and now I have my dialysis at home on the day I want and at the time I want giving me more freedom to do the things I want to do when I want to do them. I am now not saying "Sorry I cannot come out as I have to go to hospital for dialysis. I just put my dialysis off till later in the day or have it earlier. This leads to a better quality of life for me and my family.
So what are the bad points? I thought long and hard about this and there are no bad points really as patients only have to do what they feel confident and comfortable doing. So if you only want to fetch your needles and syringes, that's ok. There is no pressure to make you try to perform tasks that you feel uncomfortable doing.
So, back to the interfering patient. He was helping his wife with her dialysis and this must have made him feel good about himself. She must have been pleased he was making an effort to help her. So Shared Care helped them have more respect for each other leading to them having a better quality of life.