Hayley

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.

More about me...

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 said she would have liked to have had a Mitrofanoff and explains why.

 If you look on line at the Mitrofanoff, which is a completely different procedure, but it makes a hole from your bladder to your tummy and you insert a catheter when you need to wee…I would love, that was my first choice. That, but it still is my first choice.

 

You’d be using a bit of the appendix or something,

 

Yeah. Or bowel if you haven’t got one.

 

And have you had people saying that’s not to be done?

 

Yeah. Oh because it’s a major surgery and I think in this country particularly it’s a reconstructive surgery, so if one’s had cancer of the bladder or, for some reason…

 

It’s not easy?

 

No, cos they can quite often form a new bladder at the same time. And I mean what interested me is that I could almost certainly always do that myself because of where it’s usually through the belly button in, although mine’s quite large so it would probably be next to it. But the access is there, that it’s very, the infection side of things are much more limited because you’re using sterile catheters each time,

 

You’re just putting a new sterile catheter in each time? So that’s what appeals to you about it?

 

Yeah, very much.

Hayley can now go out without worrying or having to drink less. She feels more normal and says...

I can go out for the day now. I mean I used to do day trips but sort of three or four hours before we were due home, I’d be wriggling and literally thinking of deserts and you know the whole kind of caboodle…… 

 

So basically, I can stay hydrated. I don’t have that constant occupied thought that I need the loo I can’t go. I don’t have the pain and the fatigue that it caused anyway was quite substantial. Getting comfortable again took hours. 

 

And I feel more normal in a really weird way, having gone through something I thought was exceptionally abnormal to do. It’s actually made me feel more in inverted commas “normal.” 

 

Oh that’s good. 

 

And, you know, I can join in, I can do stuff. And I can be left alone if I need to be for a few hours now, as opposed to frantic phone calls after half an hour, I can’t wait, I’ve got to get on the bed. 

 

Because you could go to the loo and open the valve? 

 

That’s it, I can, and I mean at the moment I can just about open the valve. I realise that might not happen one day soon actually because I’ve got a bit of weakness coming on again. But I also see ways of adapting, using adaptive equipment to do this. 

 

So again if you have MS or MMD or any dystrophy, atrophy, you know think in terms of how it can help you. Think of ways you can help it as well. You know, if it’s something you’re lumbered with and you have no choice, then don’t be scared. It’s not scary. It doesn’t hurt, the changing, having it changed

 

Hayley had been trying to get a prescription for the bladder washout solutions because she felt...

 What do you use to wash it out with?

 

There are two sorts. There’s an acidic wash out which apparently is good for breaking up bits of stone, or just a straight saline.

 

But you say the nurses aren’t too keen on that.

 

No, and trying to get the prescription filled. I actually, it took me a long time to get a prescription because I had to find somebody who would agree to writing one. And we literally went to about eight pharmacies who didn’t have it in. “Oh we can get it in tomorrow, two days,” and no, the prescription, they’d only given me one. And I just, basically I was looking on -

 

Is this the GP?

 

This was, well it was actually the district nurses, they’re not as supportive I have to be honest.

 

But who gives you the prescription?

 

The district nurse, yeah.

 

Oh they can do it?

 

Some of them are prescribing, yeah……..

 

So you say you’ve only done that a few times.

 

Yeah, I’d love somebody to be doing a trial on it so I can actually, can I, that’s my gut feeling, I could be completely wrong and you know hands up if I am.

 

But I think you become intuitive anyway with any condition that you have, any situation you’re in. And my intuition says because the bladder is, if you like, a plastic carrier bag with a hole in, that’s quite small. If you can, the only way you can wash it is to rinse it out. And if you’re only washing it by drinking, then eventually you’re going to need to wash it from the other end as well, if you see what I mean

Hayley had a silver alloy coated catheter. This type of catheter is only licensed for four weeks....

What sort of catheter have you got at the moment?

 

It’s a silver alloy BARDEX®, the catheter.

 

And how often does that one have to be changed?

 

This one’s licensed for four weeks. It starts degrading, the quality starts degrading after two weeks. So if you have a lot of stones, a lot of infections, every two weeks is recommended. 

 

They are quite expensive, and you might find some Trusts won’t give them to you unless you’ve been poorly, quite poorly. And there’s some proof but not very much to say that they work.

 

Hayley's suprapubic catheter changes were painful at first but gradually got easier. She is...

The first time it’s changed, it does hurt. It would be silly to say it didn’t. It’s not like a broken leg hurt, it’s not a dog bite hurt or a hamster attack hurt. It’s a bit sore and you feel a little bit like you’ve been kicked in the tummy for a couple of days because it’s a little, if you think you have on the end of the catheter there’s a little balloon that expands with saline through a needle from the other end. That balloon will only deflate so much. It will still be a little bit proud of the catheter so you will feel, and I’d say it probably took about two or three years before I stopped noticing that feeling. 

 

You know, it comes out still, but I think you, with all pain, I think one develops a selective memory. And recurrent, recurring pain you do actually manage to deal with incredibly well. The body’s amazing. So the first change is sore. There is a bit more blood. There’s a little bit of, a few clots in the urine. The urine can be quite red for a while. 

 

The second change, they usually give you a catheter that lasts three months, two to three months. So by the time you have the second change, the third, well the second change, it’s not so much blood at all. 

 

Some nurses will suggest that you have an antibiotic. I strongly suggest you don’t unless you need one. I’m Trimeth resistant so one of the antibiotics doesn’t work on me very much anymore because I had it every time. So don’t go down that route unless you need to.

 

Hayley regards the internet as her 'friend'. She distrusts forums which express people's personal...

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.

 

Hayley restricted the amount she was drinking so she wouldn't have to go to the toilet. She...

 I have Spinal Muscular Atrophy Type 3, which means currently I’m 46 and I’m unable to do probably 98% of my own care, mobility. It’s a progressive muscular, neuro-muscular condition. I could walk when I was a toddler and I came off my feet quite quickly.

 

Basically, over the years, from the age of about 11, I was going to the loo three times a day because it was such a big faff to get everything in place, and it took quite a long time. It must have been about 9 or 10 years ago I thought it would be sensible to pop a tube in and re-plumb so that it would be easier and I didn’t have to be moved around to go to the loo. I was concerned that I’d build up problems for the future with kidney problems and bladder issues, stones and things.

 

So I started trying to get a catheter placed. I actually started trying to get a Mitrofanoff which nobody wants to do apparently. It took me about three years to get somebody who was interested in, a urologist who would do the suprapubic, which eventually was set for I think it was seven years ago now.

 

Why was there reluctance?

 

Stigma really and, because it relates to being incontinent, and I definitely wasn’t incontinent, I could hold my bladder for England.

 

So who was reluctant?

 

I was reluctant to have it done initially over the years, although it would have been a very sensible thing to have done many, many years ago. Then I had trouble actually convincing the medical profession that it would be a positive empowering thing to do. Which eventually, as I say, I actually moved from the Midlands to the South Coast and that changed things, brought around some good doctors who understood that it would be a good. I can actually independently use the catheter so it actually means, if I’m really stuck, I don’t need anybody here to help me.

 

So what was the most important factor that was driving you to have the catheter?

 

Not being able to drink because I literally, I would have a coffee in the morning, then I would go to the loo, then I would get up. I’d maybe have a drink around about midday. Then I’d probably get onto the bed quite early evening, sort of seven, eight o’clock, drink myself silly with coffees and teas and water and go to the loo a couple of times.

 

It was making my life very difficult, it was impeding in every area to be quite honest. Although I did have a massive capacity to hold myself and actually I also didn’t want to lose that ability. I was quite concerned about being catheterised and I definitely didn’t want one that went urethrally because I didn’t want to damage the muscles in that area, or the sensitivity that I had. And yeah, I mean basically I wanted to be able to drink and be healthy.

Hayley's catheter was sited a bit higher than her belly button because of her condition (spinal...

I had it sited a little bit higher than my belly button and, because I’m very twisted, my belly button actually points right virtually because my scoliosis (a back condition that causes the spine to curve to the left or right side) is quite bad. And so it’s kind of almost in the middle but alongside the belly button. It’s very removed from personal areas. If somebody has to help you with a change, actually changing the catheter, they don’t see anything personal at all, they just see a bit of your tummy. 

 

Is that one of the reasons why you decided to site it there? 

 

Well it’s, yeah I just think it’s much cleaner as well. I think it’s a lot easier to wash with soap and water. That’s the preferred method in general is soap and water to keep it clean. It does occasionally get a bit sort of mucky and a little bit crusty, again it’s a wound. If you imagine it’s a permanent wound so the body’s always healing around it. 

 

Definitely at least once a day twist it round, completely all the way round twizzle. It moves in and out as your bladder fills and deflates, and as you eat and deflate as well. 

 

The main thing really is keeping it clean. I have a dressing as well on it because it’s still in contact with my other skin, well my leg and fabric and that sort of thing, so I like to keep it a bit cleaner. And just every day wash it with soap and water.