Alport Syndrome

Alport Syndrome and kidney dialysis

Dialysis was commonly talked about by those people with Alport Syndrome who had experienced kidney failure. Dialysis is usually started when a person’s Glomerular Filtration Rate (GFR) is less than 10-15 (less than 10 is also called Chronic Kidney Disease stage 5). Patrick described dialysis as “doing the work a kidney should do for you”; cleaning the blood of toxins and removing excess fluid. Not everyone with Alport Syndrome spoke about dialysis though, and people like Jayne and Michelle only spoke about it in relation to their children (not themselves) and whether their children might need dialysis in the future. Deborah said she thought she may never need dialysis or that it will be a “very long, long time away” at least. Lucy felt that blood pressure medication could significantly delay kidney failure for her children. Patrick hoped to avoid dialysis completely by having a transplant when his kidneys failed. Diane’s partner Neil donated her a kidney so she “just missed” dialysis.
For those who had experienced kidney failure, two types of dialysis were offered: haemodialysis which is usually performed in a hospital and requires the person to be connected to a dialysis machine roughly three times a week for around 3-4 hours; and Peritoneal Dialysis (PD) which can be done at home connected to a machine (called an APD or Automated Peritoneal Dialysis) overnight or alternatively using manual bags of (dialysate) fluid four times during the day (often called CAPD or ‘bag exchanges’).
All types of dialysis require an ‘access point’ on the body. For haemodialysis this is often a fistula (a special blood vessel created in the arm) or sometimes in an emergency, a neck line (where a catheter is inserted into a vein in the neck) which allows blood to be transferred to the dialysis machine and back into the body. Some people were not keen on the idea of a fistula. Karen described how it took around eight weeks for the fistula to mature (this is when the vein grows larger and stronger). 

For Peritoneal Dialysis a catheter is usually inserted into the abdomen to allow dialysis fluid to be pumped into the peritoneal cavity. A few people spoke about having needle phobias. Karen said she applies anaesthetic cream before each dialysis session and has had Cognitive Behavioural Therapy (CBT) – a type of talking therapy commonly used for anxiety. Debra said she had an “absolute fear of needles” having seen them in the house when her dad dialysed. People using Peritoneal Dialysis talked about having a nurse visit to check everything was ok or going into the dialysis unit every few weeks and they could call the kidney nurse or on call nurse 24 hours a day.

Sometimes, people said they didn’t have a choice between haemodialysis or PD because they needed dialysis very rapidly and there was little time. People spoke about being rushed onto dialysis and things happening quickly. Alison said it was a bit of a shock when her consultant phoned to say she needed to be booked in very soon to have an operation “to have a catheter inserted into your abdomen, to start you on dialysis”.
The experience of dialysis was described in different ways. Alan said he felt the experience was very automated and at first was “petrified of the machine”. Steve described it “like your body’s running a marathon while you’re sitting still”. Richard X said he felt it was a “good stop gap” and “much better than how I felt before dialysis” although, “a kidney transplant is the ultimate thing”. For Kevin it wasn’t a big shock, rather a “part of my normality” because his older brother went on dialysis before him. Alison felt she “took to it really well”. Dee described how she got a U-drain in her bedroom wall (a permanently installed urine/dialysate waste drainage system) which meant she didn’t need to use night drainage bags anymore.
People experienced various side effects from dialysis including insomnia, cramps, feeling light headed and dizzy, tiredness, blood clots and feeling sick (see 'Side effects from medication and treatment'). Karen said she lost three days a week because she felt terrible after dialysis. Karen took a while to get used to her fistula because they “kind of grow out of your skin so they look like snakes”. Others spoke about alarms sounding on their dialysis machine which alerts to the risk of blood pressure drops and kinks in the machine tubes. People spoke about fluid and diet restrictions particularly on haemodialysis. Alison said there were fewer restrictions on Peritoneal Dialysis. Karen said she was on a one Litre fluid restriction with both CAPD and haemodialysis.
The environment in which they did their dialysis was important to some people. Some preferred to be in a hospital whilst others preferred to do dialysis in the comfort of their own home. Karen described how she liked her renal unit because of the same staff who knew her veins. She said she took earplugs, an eye-mask and tried to sleep during dialysis. Karen said that the hospital brought around food like a sandwich and there were blankets to keep warm and a TV. Paul said that when he and Christine had children, he preferred to do haemodialysis in a hospital because “I didn't want it impacting on the family at all. I wanted to go away, do it, come back”. Dee said she preferred doing dialysis at home because then she felt more in control of her treatment. She said that some people did “shared care” where you could manage aspects of your own dialysis. People spoke about having to get into a routine with home dialysis and being scrupulously clean. Alison switched from a home machine (APD) to manual bag exchanges as the machine made alarm noises and she was a light sleeper.
People spoke about travelling, holidays and hobbies and fitting dialysis around their lives. Alison said she went on holiday to Turkey and had special pouches to cover her exit site, but once when she went swimming it came off.
There were some issues around work and dialysis. Some people travelled as part of their job and continued to do so with a portable dialysis (APD) unit. Alison described being “in a bit of a flutter when our luggage went missing” at the airport on a work trip to Paris. Luckily it appeared an hour or so later. Other people like Sammy spoke about the flexibility of their employer allowing them to work around their dialysis sessions or having dialysis in the evenings after work. However, some people were unable to work when they did dialysis. Kevin and Alan were not able to work for periods of time due to tiredness and other symptoms.
People spoke about dialysis changing over the years. Debra remembers her Dad dialysing at home in the 1980s and the dialysis unit being a “monstrosity” taking up an entire room in the house. Michael X said that he and his wife Sal had one of the very earliest home kidney units where they “had to put together the cellophane sheets on a plastic sheet”. Karen said that a man in her renal unit who had been doing dialysis for thirty years described the first units as “the size of a wall”.


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