Tina

Age at interview: 54

Brief Outline: Tina’s kidneys began to fail about 5 years ago after she was treated for a burst abscess in her gut caused by Crohn’s disease. Her kidney function was restored to stage 3 where it has remained ever since. Tina has several health problems requiring lots of different medicines, and she sometimes feels depressed by it all.

Background: Tina is divorced with an adult daughter. She trained and worked in nursing until age 27 when she had to stop work after being diagnosed with Crohn’s disease and classed as disabled.

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Tina was diagnosed with Crohn’s disease (inflammation of the lining of the digestive system) when aged 27. She was treated with steroids, which had little effect, but her condition improved while she was pregnant. She was later diagnosed with arthritis and told it was related to her Crohn’s disease. Five years ago she had an operation to insert a prosthesis into her neck to help manage her arthritis.

Two months later Tina became severely unwell. She lost 4 stone in weight within 2 months and felt like sleeping all the time but didn’t realise she was ill. Her mother called an ambulance. At the hospital they discovered that an abscess in Tina’s gut (caused by the Crohn’s disease) had burst, so she had an operation to fit a temporary ileostomy to rest the bowel. This involves diverting the small intestine through an opening (stoma) in the abdomen, from where the waste products that would usually pass through the large intestine and out of the body through the back passage can be collected in a special bag. Tina found it difficult to come to terms with her stoma and felt depressed; she says she was a challenging patient because a drug she was given also affected her behaviour. She was glad when her stoma was reversed as she had felt stigmatised by it and embarrassed because other people could see, hear and smell it at times and she also experienced leakage accidents. She hopes she’ll never need one again.

Four weeks after her ileostomy was fitted, just before she was due to be discharged from hospital a blood test showed that her kidneys were failing (probably as a result of the sepsis from the abscess) and she was at risk of having a heart attack. She was treated in hospital for a further 2 weeks and her kidney function was restored to stage 3 and has remained stable ever since. She was very weak after being discharged from hospital and suffered from tiredness and repeated urinary infections. In order to look after her kidney health she was advised to drink plenty of fluids, stop smoking, eat healthier, and exercise as much as possible. She cut down her smoking and tried to modify her diet but found it difficult because having Crohn’s disease limits what she can eat. Recently a new Gastroenterology consultant has offered to refer her to a dietician for help with this.

Tina’s kidney function was monitored at the renal unit for about 18 months, during which time she had blood tests and an ultrasound scan. Her care was then transferred to her GP. She has blood tests for kidney function done by a nurse at the practice, but not on a particularly regular basis – she says they catch her when she’s there for other reasons. They always say they’ll phone if there’s any problem with the test results but Tina prefers to phone the surgery herself after about a week to get them. She is usually told her kidney function is still at stage 3 and she is happy not to be given any more detail, preferring not to know unless there’s a problem. Tina’s mother and daughter also have kidney problems.

In addition to Crohn’s disease, arthritis and kidney impairment, Tina also has asthma, pernicious anaemia and has recently been diagnosed with fibromyalgia, which causes painful joints and tiredness. She takes a lot of medications for her various health problems including: a statin to control her cholesterol, GTN spray and clopidogrel for her heart, tramadol for pain, codeine to settle her gut when it is particularly inflamed, and B12 injections every 3 months for the anaemia. She finds it hard to remember to take all her medicines because the fibromyalgia gives her ‘brain fog’.

Tina knows as much as she wants to about her various health problems. She doesn’t want more information because she finds it all rather depressing. But she is reassured that everything is being monitored, although she doesn’t enjoy having blood tests because her veins usually collapse these days making it difficult to get the blood out. In her experience the smaller butterfly type needles work well but not everyone taking her blood agrees to use them on the grounds that they are more expensive.

Tina feels ill a lot of the time and often feels frustrated because other people don’t realise how she is feeling because she looks well. Of all her health problems it is the Crohn’s disease that has most impact on her life at present.

Tina was diagnosed in hospital after recovering from a life-threatening abdominal abscess caused by her Crohn’s disease. She did not feel able to take in the information at the time.

I didn’t really know the full impact of the kidney problems until I actually went, I was discharged from the hospital for that and then I was called back to the kidney unit, and that was when I actually found out, you know, the actual levels, which to be honest, I can’t remember but they were very low, and how bad it was, you know. I don’t know.

And what did the consultants or nurses explain to you about what had happened with your kidneys?

They said that they thought it was to do with the sepsis from the poisoning and all that… had caused it. I mean I’m not disbelieving the consultant, you know, but since, like I said, my mum’s got quite bad kidney function, in fact they were talking of transplant on my mum, my daughter has got it, so whether that was another thing that it is a family trait kind of thing, you know, I don’t know. I, to be honest, it was, dealing with the Crohn’s at the time was bad enough.

And it will sound terrible, but when they told me about the kidneys, I still wasn’t well enough to really take it in.

It was more like, oh, it’s just another thing. Here we go. It’s not until you start to get a little bit better and, you know, mentally your head, your head’s working a little bit better that you kind of think, ‘Wow, this is as bad as the Crohn’s’, you know, but, in lots of ways, worse, if you want the truth. This could really be another life threatening thing.
 

Tina was told her kidneys have been damaged an infection from a burst abscess, but as her mother and daughter also have kidney problems, she wonders whether there is also a hereditary vulnerability.

And has, has it been explained to you, or have you had any ideas yourself, about what might have caused your kidney function to go down?

Only them they were saying it’s, “We think it’s the sepsis…

Yeah. [mm]

…had had caused it” and, like I said, I don’t know. I often wonder whether the sepsis probably really probably put it into nose dive, but whether there was maybe a slight problem there before because my mum and my daughter have, you know, they’ve both, well, and my brother.

What kind of diagnosis do your mum and your daughter have?

My mum was actually waiting for a kidney transplant.

Well, my daughter, my daughter had a thing called HSP. I think she was about thirteen. It’s something Henoch-something...

Henoch-Schönlein, I’ve just read about it, yeah. HSP, yeah.

They didn’t.

So she had that when she was thirteen.

They didn’t expect it in… somebody [daughter’s name] age. It usually happens to about seven-year-olds. Got a virus on the Christmas. Come down the stairs one night, “Mum, look at my legs.” Very similar looking to meningitis. We done the glass test, it didn’t move the actual spots.
Took her to the doctors. She’s seen God knows how many people because, in fairness to them, they weren’t looking at somebody [daughter’s] age with this thing. They eventually diagnosed that she was taken into the children’s hospital in a lot of pain and it affected her kidneys. In fact, [daughter] got one half of her kidney that doesn’t work.

Something about the crescents in the kidneys wasn’t right or had died or something like that. But they put that down to when she got this Henoch but then [daughter] hadn’t been well for quite a while. So [daughter], again was what they say long terms observation, you know… watch all this. And then, when my mum became, when it became quite that they were talking transplants, you know, maybe one of us could give her a kidney, they wouldn’t look at me, my health, didn’t want to know. My older brother, they couldn’t because he’d been born with jaundice and he’s since had hepatitis. My sister is not in the best of health, you know, The younger brother suffers terrible with blood pressure so he, there wasn’t really an option where they looked at any of us and thought we can’t. [Daughter] wanted to and I said to her, “You cannot do it.” “Why not, mum? Why not?” And I said, “Because you’ve have kidney problems yourself, you know. The kidney people aren’t, they’re going to look at you and think, no, I can’t take the risk.”
 

Tina’s veins tend to collapse and she finds that butterfly needles are more effective at getting blood out of her than the larger size needles but she has been told these are more expensive.

I forgot to ask you at the time, but, when you were talking about the blood tests and you said you’re not particularly keen having needles in your arm. Have you found any ways to make that more manageable for yourself?

Again, because I’ve had so many blood tests, and I was a big girl before it all began, it’s never been easy to take blood from me, but when I lost all that weight, my veins, they only used to have to get a needle out and they’d collapsed. And it’s another thing, you know, don’t try your conventional way, spend a couple of p and do it with the butterfly needles because they’re very little and they’ve got, they do the job.

You know, when they try with the big needles in your arm and all that kind of thing, it’s not only bloody painful but it’s not effective, you know, you end up with bruised arms, so yeah, I’d say, with people, I’m sure I’m not the only one, people with kidney problems, because of they’re always having their blood taken, they’ve got trouble with their veins. Use the butterflies, because I’m terrified of needles but if I think they’re going to use a butterfly I’m not so bad. I‘m, ‘Oh well, there you are then’, because you’ll probably hit the vein straight away.

I haven’t heard of butterfly needles before.

They’re  little ones, they’re like a dear little needle with, like, a little pipe… that you stick the syringe into to draw the blood and they’ve got two, like, wing bits here.

Oh okay.

But I don’t mind. If they’re going to use – because, like, when I was in hospital, it got so bad they were, like, taking it out of my feet.

And I thought, ‘Oh Christ almighty’, I know a lot of people have had problems like that.

Use the butterfly ones.

Is that something you ask now, when you go and see the nurse? Do you ask them to use the butterfly needles?

Yeah. I’ll actually say, “Look, you know my veins are pathetic. Can you use the butterfly ones?” Some you get, “Well, no we can’t”, because it’s down to cost. Others, “Oh right, okay then, Tina, yeah.” And straight away, they get the blood. Yeah, you.

So it’s worth asking.

Oh yes. So if you ever go along to the doctors and they’re poking and prodding you, say, “Could you use the butterfly needle please?” They, they’re good.

But they’re more expensive are they?

Yes. And I was actually told that when I was ill that time, the phlebotomist, who was in the hospital, and I got used to him taking my blood, he was brilliant because he used the butterfly straight off. And I didn’t realise this and he got my blood, and it got to the stage, where I wouldn’t let anybody else near me. I’d say, “You go and get that phlebotomist. He he’s all right.” And one day I didn’t intentionally, but I had a doctor say to me about having your bloods taken, and I went, “Well, use the butterfly then. The phlebotomist does.” She said, “Well, he’s not supposed to because they’re dear. They can be quite dear.” And I thought, ‘Well, I don’t give a damn about how much they are’, you know. I’m just the patient and I would rather that, rather you prodding me and not getting anywhere with a big needle, you just use the butterfly needle. But yeah, they’re pretty good now.
 

Tina suggests that doctors should listen to their patients more and ask them how they are feeling about their health problems or what they’ve been told.

And what messages would you give to the health professionals involved in looking after people who has a declining kidney function?

Listen to your patients. You know, they’re quick, they’re trained to be medical people and tell us the facts, but also have an ear for how your patients are, and listen, really listen to them because it makes a difference, you know, if you go into a consultant’s room and they’re just going to say, “You’ve dropped from this to that and we’re going to put you on this.” But not, “How are you?”

To deal with any condition, with a mental awareness issue, put it that way… is good. If it, if they cannot just look at what you’re experiencing but, “How’re you feeling about that?” It makes a big difference.
 

Tina was given leaflets at the hospital kidney clinic but didn’t understand all the language used; she prefers face-to-face explanations.

I believe when I went to the kidney unit I was given leaflets. I was, because I remember coming home and looking at them and not being sure I understood properly. I mean you can look at a leaflet and they can come up with all this medical jargon, but really you need somebody sat there actually saying, “Well, this is what this technically means.”

If you’re not familiar with that, and I certainly wasn’t, when I was nursing I wasn’t… you know, familiar with kidney problems. The terms and that, I think all these leaflets are all very well but what you really need is somebody telling you face-to-face. And that’s if they’re ready to hear it face-to-face. A lot of people aren’t. It it’s, you know, I don’t think I’m on my own there, you know, I know other people with health problems and they’re, “Oh Christ, here we go again.” But if you’re going to, if you’re the kind of person that wants that knowledge and maybe you’re lucky enough that you’re only suffering from one condition, well, go for it. But I think there always seems to be other problems, with not just myself, but other people, you know, with conditions, and what people, healthy people must be thinking, ‘How can’t you want to know what’s going on with your body?’ And I think, ‘Put yourself in my shoes. If you had all what we’ve got, you would want a little bit to be a little, stay out of the way a bit.’