Hayley
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Age at interview: 46
Brief Outline: Hayley was born with spinal muscular atrophy. Seven years ago she decided to have a suprapubic catheter so that she could drink more, travel more easily and have a better quality of life. She is glad that she made the decision to have a catheter.
Background: Hayley was a counsellor but has retired due to ill health. She is single and lives with the support of PAs (self-managed care) and various animals. Ethnic background/nationality: White British.
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Hayley was born with spinal muscular atrophy type 3. From about the age of 11 she found it exhausting going to the toilet because it took so long to undress and dress again and put everything in place. She found that she was not drinking enough fluids during the day to avoid the need to pass urine. She realised that this was unhealthy. Initially she was reluctant to have a catheter because of the stigma related to catheters and their association with incontinence.
About seven years ago, when Hayley was aged 40 she decided that she wanted to have a suprapubic catheter. At first her doctors were reluctant to insert the catheter. Hayley thinks that this was partly because it is an invasive procedure and partly due to lack of resources. Then Hayley moved to a different area in the country and found an urologist who was prepared to operate. He discussed the operation with Hayley and let her choose exactly where the catheter would be placed. Unfortunately another surgeon did the operation, who was not familiar with Hayley’s condition and with the problems caused by her spinal muscular atrophy, and during the operation her hip was broken when her legs were put in the stirrups.
Apart from the broken hip the operation went well. Hayley woke with a silicone suprapubic catheter in place, a urine bag and continuous drainage. After about three weeks she stopped using the bag and used a flip flow valve. She decided to have a latex catheter, which she found more comfortable. Now she has a latex catheter with a silver alloy coating.
Hayley has her catheter changed about once a month. The first catheter change was painful but now she finds the procedure is much easier. She says that the catheter change is just a little uncomfortable, a little sore, and usually there is a small amount of bleeding afterwards, but this is very light and a small dressing should be worn that day.
Hayley sometimes gets urine infections or stones in her bladder. She tries to get rid of her infections by drinking large quantities of water. She tries to avoid antibiotics if possible, but sometimes has to take them.
Hayley is glad that she has a catheter. She finds it empowering, because she can go out and drink as much as she likes without worrying about the exhausting process of emptying her bladder normally. She still passes urine via her urethra once a day when sitting on the lavatory to empty her bowels, so that she doesn’t lose the ability to pass urine normally.
Hayley regards the internet as her 'friend'. She distrusts forums which express people's personal...
Hayley regards the internet as her 'friend'. She distrusts forums which express people's personal...
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The internet is my friend. I read a lot of research papers. I don’t go to forums and things like that. I’m very distrusting of people’s personal views in the forum situation because quite often they’re quite angry and upset and quite negative. And usually it’s their own cathartic experience that they’ve performed or following through so you don’t necessarily get a balanced view.
I’m lucky because I can read research papers and roughly understand. Wikipedia is very good if you don’t understand the chemical makeup of something, it explains it quite well.