Orlando speaks below about his experience as a patient doing Shared Care and then moving onto Home Haemodialysis.
Initial impressions of haemodialysis
How did you feel when you started coming to the Nottingham unit about your haemodialysis treatment?
I felt very nervous and did not know what to expect. I found it all overwhelming, daunting, is it going to be very painful? I had this feeling of "What's happening to me?" I found the whole experience very stressful.
Was there anything you liked about coming for dialysis?
I liked the idea that it was keeping me alive. I felt very fortunate because quite frankly if I was back home in Jamaica I would not be alive now, because I would never be able to afford to pay the cost of dialysis. I feel blessed to be living in a country with free treatment.
What didn't you like?
I wish I didn't have to do it. But I have accepted I do have to and it is part of my life, so I get on with it, make the best of it and get on with living my life.
How did you feel about needling your fistula?
Very nervous and I couldn't stop my hand from shaking. I never thought I would be able to do it, because it's just not normal to stick needles into your own arm three times every week. But I was determined to do it, so when I did it I felt relieved, but also ecstatic and felt a huge sense of achievement.
Starting Shared Care
What was it that helped you to decide to do shared care?
There were many reasons why I chose to do Shared Care, but the main one at the time was I wanted to do home HD so I could get back to work. The reason I wanted to go home was the flexibility it gives you, being able to go on dialysis more times for less hours made my health feel much better. It also makes you feel a lot more comfortable being able to do it in your own home environment. I was inspired to do it by watching other patients.
Who helped you and what did they do to make you feel better?
When I started doing Shared Care the staff were very good, and if I made any mistakes while training they had lots of patience and kept reassuring me that it will get better and I will learn how to do it. Also the patients that were already doing it gave me plenty of encouragement and were very supportive.
How do you think learning about your dialysis has helped you?
It gave a better insight into my treatment and illness. That in turn gave me the power to take more control of my treatment, and the knock on effect of that gives me more confidence, and more freedom to live my life and have a better quality of life.
Was there anything in particular that helped you to learn?
Again all the staff were fantastic and my home training nurse is so patient. We worked out a system for setting up the machine that suited me and that helped me learn it a lot easier so it made my routine a lot better.
What made you feel confident/competent?
When you first start to learn Shared Care your confidence is low. So the encouragement and patience from all the staff, and knowing that if you make a mistake you were assured that you will get it right next time. Also seeing that other patients could do it made me realise that I could as well, all of this kept boosting my confidence.
Was there anything that you feel could have been done differently to help you?
I think it would have been better to have had a separate room for Shared Care training with less distractions.
Dialysing at home
What do you like about dialysis days now?
Now I am on home HD having the freedom to work my dialysis around my life, and to get a lot of my independence back. To have the confidence to take control of my treatment, understanding better how your dialysis works which enables you to know your own body better, this helps you to stay healthier. I feel more settled in my routine, my quality of life is much better. I feel more confident and again in control of my treatment. Some of the main benefits it gives you are the flexibility and the independence of being able to work it around my life.
What don't you like?
Because I am now on dialysis at home the only thing I can think of that I miss is the social part of being on the dialysis unit.
How do you think others could be encouraged to feel better about their dialysis?
It would give them more free time to do more things in their lives, and the confidence to do those things that maybe they thought they couldn't do. Take control of your treatment and that in turn will give you a better quality of life.
Orlando Douglas - March 2017
We would love to hear your story, especially if you share your care.