Unwittingly thrust into the renal world with CKD back in the 1950’s, I never really had any control in the treatment options until I was informed that my kidney function had reached a point where dialysis had to be considered for my future treatment.
Fortunately with the proactive support of my CKD team I was able to make an informed choice and finally take control of my treatment options. Up until the time that I was being considered for transplant my world was constantly upside down with changes in medication adjusted in accordance with repeated blood tests.
The community team were very helpful in visiting me and my family at home to discuss the different dialysis options. These days patients and their partners and families are asked to attend pre-dialysis education class’s which I can highly recommend as it gives you access to the entire team and the renal support group.
Having been on a lifelong journey feeling totally helpless; now was my chance to make a decision that would not only affect my life but impact on the rest of my family and work life.
Whether it be CAPD, APD or HD, all of which can be carried out at home I had to take into consideration the practicalities of each option. Coming from an engineering background, I was able to take a practical approach to my decision making.
First and foremost I am a primary carer for my wife, so when I wasn’t working I was shopping cooking, washing and ironing. I had a son of school age to take care of whilst managing my own health and diet as best as I could; so whilst I wasn’t afraid of needles I chose not to go down the Haemodialysis route owing to it’s time consuming limitations affecting my time at work and at home. The work attitude of the day was that if I couldn’t be at work when I was needed then I shouldn’t be there at all.
That left me with the choices of either CAPD or APD. I found this to be very appealing as whichever of these I chose, it gave me the freedom to travel and work and have a reasonable home life. Both of these required that I have a lot of room to store the boxes of fluid. I also considered the time taken to perform the dialysis and whether both options would allow me to work. Another consideration was the risks of peritonitis, and as the CAPD required a clean environment to perform the fluid exchanges up to four times a day and I couldn’t guarantee where I was going to be during the normal working day. I was working quite a heavy duty amount of on-call hours which left me with a no brainer APD or Automated Peritoneal Dialysis. While it did place a restriction upon my on-call coverage it left me a full day to go about my normal daily activities.
Having used the APD system over several years I have enjoyed a good family life with many holidays around the UK as well a two week cruise around the Mediterranean. Alas I had to give the work life a miss as I was offered voluntary redundancy after an extended leave due to sickness and just one month prior to starting dialysis. As stated earlier, if I couldn’t be there when needed then I was no use at all.
APD was an excellent choice for me as I was able to dialyse whilst I slept. At last my life was back in my control.
If offered to you I can highly recommend that you attend the pre-dialysis class’s as they are an excellent opportunity to help you in making your decision.
Stuart Powell
Hi Stuart, I have such admiration for you. You were juggling all the balls to try and keep everyone and everything in your life afloat. So difficult to do, but it seemed you managed for a time and enjoyed time with your family as we’ll (which I am assuming was the most important aspect of what you were trying to achieve).
Sadly your work let you down, they had no foresight, it happens, their loss.
I was lucky when I started dialysis I was on he twilight zone (7-11pm) so I came home had a cup of tea (a mug really!) and straight to bed, no feeling drained, no headaches just sleep. To me it is the best time to get dialysis.
Just one thing to mention is that I never saw the dialysis unit, I had no idea what was on store for me and no pre-dialysis classes were offered. my first dialysis session I had several needles blow, my arm was so pumped with lidnocaine that it was numb from my hand to above my elbow and I ended up with one needle doing the job of two. I thought is this what to expect every time?? Fortunately not. I endorse what you say it is important given the chance to take the pre-dialysis classes and find out as much as possible about dialysis and not be in the dark as I was.
Take care