Starting haemodialysis at home is a little daunting, but also liberating. It doesn’t take any less time than it would in the unit, and you have to be self-disciplined to do the required dialysis sessions, as well as all the necessary setting up, disposal of clinical waste, and routine maintenance needed. The beauty of this is that it can all be done to your own schedule and in the comfort of your own home, with your family around you. My diary details a typical week, if there is such a thing! Hopefully, you will see that it is possible to lead a pretty active life on HHD.
Monday
I didn’t think the week was going to start well! I put a dialysate SAK in my NxStage machine on Sunday evening, and the six-hour fill time had just one hour left as I went to bed. Just as I got into bed the machine alarmed, so I got up and started the fill again. When I was drifting off to sleep, the alarm went off again with the same pressure problem! I thought this would require a call to NxStage technical support in the USA, but previous calls had equipped me with the knowledge to sort it and I was able to sleep. A delivery of EPO was due this morning as I set my machine up for treatment. Fortunately, it arrived early, and I was able to start my treatment by 9.30. I made a few phone calls whilst on dialysis, started this blog, and took a call from the dialysis unit about doing my monthly bloods. A four-hour session on a Monday morning gives a good start to the week. My required dialysis time is 12 hours per week, but I aim to do 14 hours if I can. After lunch and a short walk, I did an hour’s work on my latest project helping to create a new educational website. My evening was spent at choir practice, a hobby I’ve started since COVID restrictions ended.
Tuesday
On Tuesdays, I work as a volunteer at Manchester’s Science and Industry Museum, where I am a member of the ‘Object Handling’ team. For 4 hours, I spend time engaging visitors looking at a collection of old mobile phones and cameras. I usually enjoy lunch with fellow volunteers. Afterwards, I went to the gym and enjoyed a swim, and a relax in the hydrotherapy pool. Three hours of dialysis this evening with the luxury of my daughter cooking dinner whilst I set up and primed my machine, which takes about an hour. During my dialysis session, I did a stock-take of my dialysis supplies and sent my order to NxStage for my next monthly delivery in two weeks’ time.
Wednesday
Today didn’t go according to plan! A dialysis-free day, I usually go to a morning pilates class. However, today my daughter and I set out to drive to Durham, for shopping, lunch, and to bring my son and his belongings home from university. Half an hour along the M62 it seemed like there was a problem with the car which was shuddering when I touched the brakes. We pulled onto the hard shoulder and called the AA; we spent the next four hours in wild, wet, and windy conditions waiting for recovery to pick us up. Cold and bedraggled when they arrived, we got home again after 4 pm, with my son still in Durham! After a hot shower and some warm food, I settled down for a lazy evening.
Thursday
Thursday is clinical waste collection day; the yellow bags put out last night were removed. The morning was spent doing some jobs around the house and setting up my machine again to fill the dialysate SAK for a dialysis session later. I did a GCSE Chemistry tutorial on Zoom which helps to keep my mind active; I do miss teaching in the classroom. A bit of “me time” at the hairdresser this afternoon. Cooked (priming my machine at the same time), ate dinner, and went onto dialysis a little later than I had hoped, meaning an 11.30 pm finish. During the session, I watched some TV, did the crossword, some lessons on Duolingo and prepared for a tutorial tomorrow.
Friday
Had an appointment at the Warfarin clinic this morning, then went to meet a friend for coffee in the local art gallery café. Did my second tutorial of the week, A-level Chemistry this time. I set my machine up once again for a session on Saturday morning, then completed some online work cross-referencing two GCSE Chemistry specifications for an educational website designer. I made it an early night in anticipation of an early start on dialysis tomorrow.
Saturday
Today is monthly bloods day, when blood sample bottles are taken before and after my treatment. One of the nurses from the unit was due to collect these, together with swabs. I wanted an early start so that they were all ready for collection at 1 pm. Bloods collected, I went with my daughter for coffee and cake at the local Italian deli. I then had to complete my weekly machine cleaning routine, including flushing the waste line with bleach and then ensuring it was adequately rinsed and ready for use again. This evening I went to a wedding reception about an hour from home. It was good to meet with friends and celebrate the occasion.
Sunday
I had thought that today would be a free day, but I was enlisted to collect my son from Durham after our failed attempt on Wednesday. It was a beautiful spring day, and my daughter and I enjoyed a stroll around the shops, coffee, and a tour of the majestic cathedral. We had lunch with my son at a riverside eatery before loading his belongings into the car and driving home. Feeling tired, I set up my machine to fill the dialysate SAK overnight in readiness for my session in the morning and the start of a new week.
