Kidney Life - A Day in the Life of Carol Aitken
Carol Aitken - APD and SAPD patient, and husband Ken.
Carol (48), a tenancy welfare coordinator for a large housing association in Havant, has been a kidney patient, suffering from IGA Nephritis, for over 10 years, the last two of which have seen her kidney function deteriorate to a stage where she required dialysis. Carol and Ken (51), a serving Naval Officer, have been married for 30 years and live in Southsea in a three storey house. They store Carol’s boxes of dialysate in the integral garage on the ground floor. Her host unit is the Queen Alexandra Unit in Cosham, Portsmouth.
Why did you decide to investigate APD?
C: I started off on CAPD but just found that dialysing 4 times through the day interfered with my working day too much. My employers were, and still are, fantastically supportive but I wanted to claim back some independence and so I asked at the unit if I could be put on the waiting list for an APD machine and after three months was allocated one and trained on how to use it. Also CAPD meant that I could never enjoy a whole day out without having to worry about my dialysis, so now I just dialyse overnight and do an extra top-up CAPD exchange when I get home from work. But at least I have most of my freedom and my independence back. We both received guidance about the various dialysis options – although I am not sure, even after this that I was well enough armed to ask detailed questions and make a fully informed choice. Maybe I was just too tired to absorb it all.
Do you find it easy to set-up and how does the process work during the night?
C: It took a bit of getting used to at first but I was trained at the unit and the girls there could not be more helpful – they are really supportive and easy to talk to. The APD machine does make some weird noises – a sort of swishing and gurgling noise, and so my sleep is disturbed sometimes. But you do soon get used to it The routine I follow means that I do a CAPD exchange when I get home from work because I need that extra top up session. Then before I get into bed I connect to the APD machine and then overnight it takes over and will drain my last ‘day time’ bag out and then perform 3 exchanges through the night, each one lasts 2 hours and 7 minutes and after each exchange the machine ‘dwells’ for a while before draining it out and starting the process over again, to achieve maximum quality dialysis. The last ‘exchange’ stays inside me then until I get home from work and do my solo CAPD exchange. This routine means I do pee through the day – usually about a pint of urine a day - which I know is quite good.
To what extent does the ’line’ connecting you to the APD machine restrict movement?
C: It really doesn’t restrict me at all because the line is long enough for me to walk around the room whilst I am connected. I can almost walk out of the bedroom door, so while I am asleep I am not restricted at all. The line for APD is much, much longer than a CAPD bag line.
How do you feel physically on this regime?
C: I am still very tired but I can manage that tiredness most days; I still work full time. I have put on a lot of weight since I started APD and I suppose this is down to the glucose in the solution and the fact that I am not exercising because I have no energy – I know it can’t be down to my diet!
Do you have a named nurse to call if you have a problem?
C: Well I tend to speak to one nurse because we have developed a very good relationship and I could talk to any of them about anything... I just can’t praise them enough; they are fantastic. They are never too busy for me and they answer all the questions I ask about my general state of health.
Do you feel you made the right choice?
C: For me and knowing how ‘in control’ I like to be, PD is definitely the right choice. I will give myself my own treatment, say when and where I have it and I’ll say if I don’t want it. I am way too needle shy to consider haemodialysis; either in the home or at the unit. I do not like the EPO injections and I am afraid Ken has to do the injection... and catch me first!
How do you manage to carry all these boxes up and down the stairs?
K: Every day when I get home from work I know I have a routine to get through before I can do anything else. I have to get a day’s supply of boxes up the stairs – that could be several trips up and down all three flights – take down all the rubbish that APD/CAPD dialysis generates (that’s plastic coverings, empty cylinder draining sets and 6 prong cassettes) for collection by the council, get the washing downstairs and sorted out. Then on a Monday it’s a chase around the house because it’s (EPO) injection night!
C: I work and I food shop and I cook, but I have to say Ken does absolutely everything else around the house.
How could life be made easier for you?
C: Well a few little things would make the process much less invasive in terms of our home. We had to go out and buy a plastic chest of drawers to keep the mountain of clips, swabs and associated dialysis equipment clean, clear of the floor and organised. We can afford to do that but what about someone who can’t. Not everyone can afford to go to purchase the extra stuff you need, for instance, go to B&Q and pay £20 for a plastic chest of drawers. Also it would be great to have a drip stand in the house for the duration of my time dialysing. It could all go back to the hospital afterwards; but these little things would make life so much easier in the home. By doing PD I know I am saving the National Health money and so I really think there should be a ’package’ for every PD patient which would include plastic drawers and a drip stand, at the very least.
Describe a bad day.
C: At work its not being able to focus; not being able to do my job properly; not being able to think straight, and so I have to look for jobs at work which will not tax me too much. I describe it like walking through treacle. I am lucky in that my employers could not do more to make my job, and my life, easier. They have been so supportive from the very start. So on a bad day I know I have not done very much at work, whereas on a good day I can accomplish a great deal and get great satisfaction from knowing that I am doing a good job. I love my job, so I hate it when it is such an effort to do it and I do get a bit tearful when I am really tired.
K: I’m sure being a man doesn’t help sometimes. I am very practical and will do whatever physically needs to be done to get Carol through the day, but I am a bit lost when it comes to the emotional support aspect. For example when our daughter was in tears when she’d found out that she could not donate one of her kidneys to her mother Carol was providing emotional support to Becky but it was probably Carol who needed emotional support from me, as another avenue for possible transplantation had just disappeared.
And a good day?
C: I had a good day yesterday. I am also a school governor, and so I got up for work at 7.30am and got home again after the school governors’ meeting at 7.30pm, cooked supper for the two of us, then dialysed. After that I was finished, but I did manage to stay the course. I tend to be much better in the mornings.
K: I see the difference in Carol when we are on holiday. We take a holiday a couple of times a year and when we are away Carol rests so much more and you can tell she feels much better. Her PD allows us to take holidays with minimal disruption. We get the (PD) boxes delivered straight to the hotel (or cruise ship on one occasion), call before we leave the UK to make sure they have all arrived and just go. Baxters have been brilliantly efficient at organising the deliveries for us. We’ve been as far afield as Mauritius and never had a problem in that respect. Our only problem with taking a holiday is the total lack of facilities at airports in this country. It took a number of enquiries to discover that Heathrow airport does have a medical room suitable; information not widely known by Heathrow staff. At Gatwick, which handles a huge amount of holiday traffic, the best they could offer was a toilet or to call an ambulance for us for the purpose of dialysing in the ambulance. This is unacceptable really, in an age of disability awareness. Medical facilities should be provided at all major airports.
How have you tackled the transplant question?
K: We both approached this a bit differently: We were told the average wait on the transplant list was around 2 years which Carol undoubtedly focused upon and has suffered as she has reached the 2 year point without any sign of a transplant. I, however, looked at slightly differently and took this 2 year average to mean ‘now’ or 5 years down the line.
C: Yes I just had my heart set on the two year point and so it has been difficult getting past that. I am also disappointed not to have been informed earlier that my antibody count means I am antibody positive to over 61% of all cadavre kidneys donated. We have just found this out very recently. So now we are looking into live donation and if this does prove to be an option then we want to make sure we get the key-hole procedure and not the open access procedure.
Finally, Carol, what advice would you offer to anyone just starting out on APD dialysis?
C: The way I have looked at having to dialyse when someone asks ‘why you?’ is to reply ‘why not me?’ I have been given an opportunity to live longer with the aid of APD dialysis and I intend to make the best use of that time. I rule my treatment and refuse to let it rule me. I look at obstacles as opportunities to do things differently. I have met lots of great people who have humbled me with their cheerfulness and resilience.