Kate - Interview 19

Age at interview: 21

Age at diagnosis: 4

Brief Outline: Kate was diagnosed with Cystic Fibrosis (CF) when she was 4 years old by a new consultant who spotted the symptoms straight away. Previously, she had been misdiagnosed with other conditions such as asthma and a milk allergy. Kate has very few CF related symptoms and although she has had the odd chest infection, she has never required intravenous antibiotics.

Background: Kate is very busy with her final year at university and she also works part-time. Lives at home with her parents. Ethnic background/nationality' White British.

More about me...

Kate was diagnosed with Cystic Fibrosis (CF) when she was 4 years old. She says that at that time there was not much awareness about her condition and she had previously been misdiagnosed as having asthma and a milk allergy. Kate said that at hospital her mother had burst into a consultant's room after having been made to wait for hours. This consultant was new to the hospital and spotted the symptoms of CF straight away. Within days she was diagnosed, after 4 years of basically having her symptoms 'ignored'.

After the diagnosis she spent a couple of years in and out of hospital until her condition was stable and under control. Although she has had the odd chest infection, she has never required intravenous antibiotics. She takes Creon and vitamins and is generally in good health. 

Since the age of 4, Kate has been attending regular hospital appointments with her medical team including for diagnostic tests. For her this is very important because she feels that in this way her medical team is able to keep a close check on her health and detect any infection early on.

She says that the medical team at the children's hospital clinic is brilliant and she has kept seeing them until recently. Her initial experience at the adult clinic was a bit disheartening and she found the lack of privacy during diagnostic testing difficult to cope with. She remembers that there were no curtains separating the cubicles between one patient and another. Now she is able to cope with things like that but it was not so easy when she was 16 years old! On the other hand, she says that she has gained more control over the management of her condition since transferring to the adult clinic.

Kate is in her last year of taking a degree at university and also works four evenings a week in a restaurant and is busy preparing her dissertation and exams. She says that, as a result, she has little time to see her friends these days. 

Her children's consultant encouraged her to keep herself active by running, swimming, going to the gym, etc. Kate has always exercised but one thing that she doesn't do on a regular basis is her physiotherapy. She feels that her running helps to clear her chest as effectively as a physiotherapy session. 

Doctors didn't seem to believe her mother when she said her daughter was very ill. She was...

It isn't really a big story at all, its I think I was diagnosed when I was four, which was quite late. I was diagnosed with a few different conditions. I was diagnosed with a milk allergy, I was diagnosed with asthma, and there was one doctor and it took four years for my Mum to get, to get the doctors to pay attention to the fact that I was really quite ill. And one doctor basically took one look at us, and decided to take us in for the relevant tests, and he immediately found out what it was that I had, and that was when I was four, so, I had a couple of years where I was in and out of hospital sorting myself out, and then it was pretty much quite, I think I was about 5 or 6 and I think I had my last serious chest infection and then I was I pretty much really really well until, you know, I've had the odd chest infection, maybe like when I've had a bad cold, but apart from that I've been perfectly healthy ever since. So, I mean I've been kept a close eye on since I was that age, having regular appointments every six weeks to keep on top of my condition and having regular diagnostic tests and things, but apart from that I've never had to be hospitalised since, so it's pretty much in control and stable.

Okay, do you have  to have I.V?

No, I've never had I.V.

No.

No. I'm on Creon which is like an enzyme that everyone with Cystic Fibrosis has to take, and I take vitamins, fat soluble vitamins, but apart from that I haven't had to have anything else.

Yeah, it affected my Mum quite badly because she, my Dad worked away when I was younger and he was home, I think it was every other weekend, or every weekend, and then the times when he wasn't there my Mum was the one who was up with us, and I would have constant chest infections, this was before I was diagnosed, so I'd have constant chest infections, I wouldn't be able to run around when I was younger because I would just be absolutely shattered after five minutes and absolutely drenched in sweat and it would be really quite severe, and she used to get the doctors out, like my local GP, she used to call out every, more or less every day. She was getting no sleep. I was having no sleep, and, when he came I would be fine for like the ten minutes that he was there, you know the symptoms would be eased compared to what they were, and, for a lot of the time they were blaming my Mum for being neurotic and saying that there was nothing wrong with us, I was a healthy child and it was frustrating for my Mum and you know she used, she didn't used to get a lot of sleep because obviously my brother was young as well at the time, so she had to look after him and look after me, and she had to rely on family and neighbours to come and take care when she had the chance to sleep, but she was very anxious and worried and she went through a really really bad time until my diagnosis when everybody sort of stood up and sort of says, 'Ah, well there is actually a problem.' And it was like late eighties so, there wasn't as much known about CF back then, than what it was, people really didn't tend to reach past their teens, it was rare, so my Mum was faced with this massive, sort of diagnosis, and, she was told that you know, the future was looking bleak for us, and I wouldn't get any better, and it was obviously really more difficult for her than anybody else, but, you know, once people started opening their eyes and seeing that there was something wrong, she was able to get the support that she needed and things like that so that it was probably most hard for her.
 

When she was a teenager a doctor blurted out bad news about her life expectancy. Did not want to...

Have you talked to the doctor about any concerns regarding life expectancy and things like that or have they told you about it?

That was probably one of the biggest things that I've had to get my head around because they don't really tell you anything like that, apart from there was once when my consultant was away, and I had  another, I think he was like, another Doctor came in, and he sort of blurted it out, and I'd never really been told about it. And again I was about 14 or 15, and he sort of blurted it out, and it was the first time I'd ever been told it, and it was, that was quite awful to hear, and everybody knew, everybody could tell, at the time, that you know, I wasn't expecting it, and that was quite a big thing for us to deal with you know, I wasn't very good at you know, going to my Mum, and talking about it to my Mum because I didn't want to upset her, and I didn't want to upset my family, so, it was quite a difficult time, maybe mid teens, when I was sort of like “Oh no” like, “What have I got to look forward to?” and things like that, but, it's just one of those other things that you know, it's always so been in the back of your head, but you never really hear it, so it was quite difficult to get over, but you know, like being, and the net's quite a useful thing, and you can talk to people, you don't have speak to people face to face, you can talk to them about it, and you can hear different stories from people so, that really helped us, that's probably what got us, got us through that sort of thing, people who understood what you were going through and.

People the same age as you and with the same condition.

Yeah, well if not older, so, or younger, like you'd speak to people who are young who are going through what you went through, like, oh you know 31 and am I really not going to live past 31? And you know, it's awful, because you think to yourself, “Oh, like these poor people,” and I went through that, but as long as you sort of talk about it, and get in touch with people and realise that you know, not, it's an average its not, like, its not a sentence, so, that's probably quite an important issue that a lot of people with CF would have to cope with.

And for you, I mean what helped was to be in touch, with through the net, with other people?

Yeah. I didn't really let a lot of people know, like around us, I didn't let a lot of people know that it was bothering us, but through, just the phone on the internet and forums as well were really helpful, you just post like a message, and like say your concerns, and then you go back maybe a day later, and they'll be five or six people who, who've like says you know I've been through this, and you've just got to realise that you know, take each day as it comes, and, like you used to just get like letters of support coming back and it's a lot more helpful, because if you feel like you can't talk to people around you, it's just that, a little bit more than like a resource that you didn't have.

She is very busy doing her final year at university and also working part-time in a restaurant....

And, what do you need to avoid doing in order to keep yourself well?

Well, I've been told like, I've been asked like, you know, I work in a restaurant and you know restaurants are usually smoke free, but there is, there was a policy in my restaurant where they can smoke in the bar area. And it would be like, my consultant used to come for like meals with his family and things like that, and he used to sort of banter on about, 'You can't work in here, it's too smoky,' and things like that, and I know about friends who've had it as well, so, you know, that's the only major thing he'll say you know, 'Don't go to smoky pubs, don't go, don't work where its really smoky,' and things like that, that's the only thing but, you can't avoid it, I mean, once the summer comes anyway its going to be stopped, but there's certain things you can't avoid doing, so, you just have to try and reduce it as much as you can, but apart from that, not really anything that I can't do.

So you can't really work in a smoky environment.

Yeah, but I've never really had to, I mean, I've had a few part time jobs, either in shops or in like leisure centres and where we are now, which is like a really busy restaurant, and a lot, in a lot of the chains of my restaurant you can't smoke anyway, so, it isn't a big deal because a lot of people aren't really for smoking in, in restaurants anyway now, so it isn't a massive deal now, and obviously it'll be banned completely in a couple of months time, so. That's won't really be an issue then.

What about tiredness, do you get, do you think that you get more tired than other people your age?

I don't know. I don't think I do, more than anybody else, maybe its, you know I, I go through slight phases once every couple of, every two or three months, I'll have like, you know, a week where I'm just really, really lethargic and you know, I, it's, you just, you can't be bothered, but I don't think that's anything different from what anybody else has.

Okay.

Sometimes I feel like maybe I should just take it easy for a couple of days, but, don't go out on weekends or, you know, just take it easy but, with my life at the minute, I haven't got time, like, it feels like I haven't got time, because I go, I've got lectures 15 hours a week and then, I'm doing my final project and all my coursework and then I've got to work, I work about 15 to 20 hours a week, so, there isn't a lot of time for us to sort of socialise at the minute anyway, so, its quite'

You're very very busy.

Yeah. At the minute yeah, definitely. Hopefully, once I've got the next few months out of the way it'll start to steady out a little bit and I'll have a little bit more time for myself.

Well, I work nights, four nights, well three nights a week at the minute, but usually four. So, and I'll maybe go out for, to the pictures or for a meal or something, one night a week, then I maybe go out one night a week but it's, it's not very often I go out, sometimes, it depends on birthdays and things like that, but apart from that, I don't go out you know, drinking a lot. Probably once a fortnight, once every three weeks at the minute, but usually, it might be just once a week.

Had a hard time when she found out about her life expectancy but found talking to other young...

Have you talked to the doctor about any concerns regarding life expectancy and things like that or have they told you about it?

That was probably one of the biggest things that I've had to get my head around because they don't really tell you anything like that, apart from there was once when my consultant was away, and I had another, I think he was like, another doctor came in, and he sort of blurted it out, and I'd never really been told about it. And again I was about 14 or 15, and he sort of blurted it out, and it was the first time I'd ever been told it, and it was, that was quite awful to hear, and everybody knew, everybody could tell, at the time, that you know, I wasn't expecting it, and that was quite a big thing for us to deal with you know, I wasn't very good at you know, going to my mum, and talking about it to my mum because I didn't want to upset her, and I didn't want to upset my family, so, it was quite a difficult time, maybe mid teens, when I was sort of like 'Oh no' like, 'What have I got to look forward to?' and things like that, but, it's just one of those other things that you know, it's always so been in the back of your head, but you never really hear it, so it was quite difficult to get over, but you know, like being, and the net's quite a useful thing, and you can talk to people, you don't have speak to people face to face, you can talk to them about it, and you can hear different stories from people so, that really helped us, that's probably what got us, got us through that sort of thing, people who understood what you were going through and '

People the same age as you and with the same condition?

Yeah, well if not older, so, or younger, like you'd speak to people who are young who are going through what you went through, like, oh you know 31 and am I really not going to live past 31? And you know, it's awful, because you think to yourself, 'Oh, like these poor people,' and I went through that, but as long as you sort of talk about it, and get in touch with people and realise that you know, it's an average its not, like, its not a sentence, so, that's probably quite an important issue that a lot of people with CF would have to cope with.

And for you, I mean what helped was to be in touch, with through the net, with other people?

Yeah. I didn't really let a lot of people know, like around us, I didn't let a lot of people know that it was bothering us, but through, just the phone on the internet and forums as well were really helpful, you just post like a message, and like say your concerns, and then you go back maybe a day later, and they'll be five or six people who, who've like says you know I've been through this, and you've just got to realise that you know, take each day as it comes, and, like you used to just get like letters of support coming back and it's a lot more helpful, because if you feel like you can't talk to people around you, it's just that, a little bit more than like a resource that you didn't have.

She is in her final year at university and also works so she finds it difficult to go to the gym...

But, I used to do a lot of exercise, like over the summer when I'm not, when I'm not at university, but if I am at university I find maybe once or twice a week to be able to go to the gym, which is, it is hard, but you know there is so much else going on that you can't really find the time to go. So.

And exercise is an important part?

Very, and if not more important than, well in my situation, doing physiotherapy, it's probably better for me to go out and do exercise, because it sort of keeps you, keeps you in better condition that doing just physiotherapy.

How often do you do your Physio?

Well me personally, I'm supposed to do it twice a day for 30 minutes, but, me personally I don't do it as often as that, I might do it once every couple of days if I'm feeling sort of, if I get in from work and I'm really tired and I can feel a sort of like tightening on my chest, I'll do my Physio then, but it is a boring process so you don't really tend to sit for 30 minutes, you know, I can do a few cycles and I'll feel better so I'll maybe will stick to that, but then I'll try and find time to go to the gym, so...

What has your doctor say about it?

Well my consultant he, he's quite, like thinks strongly about me doing a lot of physiotherapy so he tries to get us to do exercise more often so you know he tells us to go to the gym and he tells us to go out running and he thinks that is, he probably agrees with me, he thinks it's a lot more important than sitting and doing Physio as long as its, you know obviously it'll stimulate you more and you'll be more interested in doing it. So he's a lot, he's probably, he says you should be trying to get us to do 30 minutes every day, so, you know, that's not possible for us at the moment, but sometimes I would try to do that if I had the chance.

Her children's and adult medical teams are very good, but she established a strong relationship...

I mean the children's clinic, it's, when you move up to the adult clinic, you kind of gain a lot more control, when you're at the children's clinic, you're just given an appointment that you know you're expected to turn up to, and they do, they give you a lot more pressure and a lot more commitment to you, so that you go, so that you go and get regular check-ups and they give sort of a really big emphasis on, on like looking after you and working as a team, they are a brilliant brilliant team, then when you go to the adult clinic, they sort of let go of all that pressure, and they just say, 'Look you can come if you want, you don't have to, it's up to you, if you want to come and get checked out every four to six months you can, or even more so if that's what you need to do," but, it's a lot more laid back, it's not as controlled, its just sort of, its just a lot easier. So.

Did you or do you trust your children's consultant to tell him about your concerns and how you were feeling and things like that?

Yeah, probably 90% of stuff, sometimes you know, like they'll be things that you, you know, he would ask at every single time you went like, you know, are you exercising, yeah, you've lost weight, why have you lost weight. Are you eating properly, you need to look after yourself, de da, de da, de da and it was sort of like yeah ahah, and you were just going in there just to sort of nod your head and, but like, on a more serious note he was a really good consultant you know, he was, he gave you, [deleted by respondent] his e-mail address, you had everything you needed in case you know, you needed him, so you know if you, if you had a concern you could phone his receptionist and he'll phoned you up ten minutes later and say just pop in to the clinic and I'll see you.

He was brilliant like that, he gave a lot of commitment and that was probably quite hard to lose because you know, you sort of lose that, it's more of a friendship as well, so, you know, I've stayed in contact with him, quite a lot because obviously he's in contact with my Dad with the fundraising, so, you know, he'll e-mail us, and see if everything's alright, and, see how my family are and because you do, you go in and you tell them, you tell them you know what's going on, and how you're doing at school and things that are happening with the family, and they do ask you and they make notes about things like concerns or troubles, and then check up on them, like maybe a couple of months down the line, they'll say, 'Are you still worried about this? Is it still a problem?' And they were brilliant like that, so.

And what about the nurse?

The nurses were the same. They sort of gave you support, like it would be things like school trips or things like that maybe I couldn't afford to go to, they would arrange for us to be assessed for funding for things, and I think there was only one time that I did that, it was for like a school trip that was quite pricey and my mum wouldn't have been able to afford it, and the nurses just says, 'Oh there's a fund that you can go to for things like this, and they'll supply you with the funds that you, you've got to go on these trips' and so I did that once, and they helped us through that. And as well they are really helpful, they give you, you know their offices numbers and you can tell them things, and in confidence, and you know you sort of build up a relationship with them as well. So it was it was a really, live overall the team worked closely, but still you could go and talk to each one for something different if you wanted to.

She didn't feel prepared for what would happen at the adult clinic, and was especially shocked at...

When you go to the doctor, the hospital, which, what tests do you need done?

Well, I used to go to [hospital], and they used to take me, to go every six weeks, and , they would just do like my SATS, my blood pressure, lung function, I'd go and see a dietician, and then I would see my consultant who would just do a general physical examination, and it is pretty similar at the [hospital] where I go now, they do the same sort of things, you know height, weight, I get a physical exam again, my lung function they make you do, but it's a lot less frequent, and it's a lot, it's freer because you're not sort of made to go, it's sort of there for you if you need it. It's sort of an open clinic a lot of the time, so it is quite an easy going process.

So you went from the children's to the adult clinic?

Yeah.

Okay. How long ago?

Quite recently actually, like I went when I was 16, I went up to the adult clinic, but it was quite a lot out of the way, it was a bit of a, it was a little bit of a shock for us, you know, compared to seeing young children who you know you talk to and you get to know, and you get to know the team, the nurses, the doctors, and then its like a bit of a, a shock when you go into a different environment and there's adults and people with like pulmonary disease and it is a bit of a shock when you're 16 and you've never really had to deal with it. So, I made an arrangement where it would be easier for us to go somewhere, you know, ten minutes down the road, straight across the road from my school, and, you know, I knew everybody, I was comfortable, and then just as time progressed I slowly, I slowly sort of progressed up to the [hospital], now I just stay at the [hospital] full time now.

So to begin with the adult one was a scary place?

Yeah it was a little bit sort of, it was, they didn't really type of brief, they didn't brief us to tell us like what would happen, like, a lot, where I used to go in [hospital] they used to like the lung function tests and the height and weight and everything was done in a separate room, and then when I went to this, the first time I went to the clinic I had to do my lung function in sort of a communal room and there was five or six, and there was a young woman next to me who had like a white string vest on and like her lungs were all swollen out of her back and she was all ribs and bones, and it was just sort of a shock to the system, and you know I came out and I was, I was really shocked and my mum was shocked as well, so, it just was something that I thought, 'You know I don't need to see that right now.' I would prefer it to be a private clinic and me do it in, in private quarters, there wasn't even curtains dividing each person, so it was quite, you know, a bit of a shock, and then.

So my old consultant contacted the RVI and told them of my, like explained my concerns and says that you know, she's not happy about going back, she wants, you know, she'd rather do it in like private and, but he basically sort of said, well they can't change the process, so when I eventually had to go to the [hospital], I didn't really have a choice, when I went to the [hospital], the second time, it was a little bit different, you know it was really quiet and there was sort of curtains, there was two women at the time and there was curtains separating them, and although you know I am a lot older now, so, you know I have, I've been on forums, you know and I've contacted people with CF so I know a lot more about it now, than I did when I was 16 so, it was less of a shock for us, and it was a lot easier, it was, you know everybo

When she was about 18 she was warned that she needed to be careful with contraception. She was...

What have the doctors say regarding if you want to start a family? 

Not really a lot, like when I was sort of 18 they did tell us that you know, that people with Cystic Fibrosis tend to have a lower fertility in men, its usually non existent, but for women they just said that, you know, there is every chance that you'll fall pregnant and you need to still take proper precautions, if necessary, and they said that you know there does tend to be a lower fertility rate in people with Cystic Fibrosis, but he says there's no reason why, if and when you choose, that you can have a child or things like that, but he says as well that, you know, the partner that you choose is, is able to have tests as well to see if they have the CF gene which obviously increases the chance of your child having Cystic Fibrosis. So they do sort of tell you, you know, that you may not be able to, or you may have a lower fertility, but obviously still to take the proper precautions cause if and when you do want to have a baby you've got to be of a certain health and have a, you know, have a certain level of lung function and be of a good overall health before you even think about starting to have a kid, because pregnancy can obviously take a lot out of somebody with Cystic Fibrosis. So, because obviously you can't be as active and you know there is a pressure on your heart and your lungs and just everything, so, they are quite good like that, they says that obviously as well fertility dies as you get older, your fertility lowers so you need to think about maybe when, and where and you know, so. 
 

Her mother got worn out trying to cope with her CF when she was young and sometimes needed help...

Yeah, it affected my mum quite badly because she, my dad worked away when I was younger and he was home, I think it was every other weekend, or every weekend, and then the times when he wasn't there my mum was the one who was up with us, and I would have constant chest infections, this was before I was diagnosed, so I'd have constant chest infections, I wouldn't be able to run around when I was younger because I would just be absolutely shattered after five minutes and absolutely drenched in sweat and it would be really quite severe, and  she used to get the doctors out, like my local GP, she used to call out every, more or less every day. She was getting no sleep. I was having no sleep, and, when he came I would be fine for like the ten minutes that he was there, you know the symptoms would be eased compared to what they were, and, for a lot of the time they were blaming my mum for being neurotic and saying that there was nothing wrong with us, I was a healthy child and it was frustrating for my mum and you know she used, she didn't used to get a lot of sleep because obviously my brother was young as well at the time, so she had to look after him and look after me, and she had to rely on family and neighbours to come and take care when she had the chance to sleep, but she was very anxious and worried and she went through a really really bad time until my diagnosis when everybody sort of stood up and sort of says, 'Ah, well there is actually a problem.' And it was like late eighties so, there wasn't as much known about CF back then, than what it was, people really didn't tend to reach past their teens, it was rare, so my mum was faced with this massive, sort of diagnosis, and, she was told that you know, the future was looking bleak for us, and I wouldn't get any better, and it was obviously really more difficult for her than anybody else, but, you know, once people started opening their eyes and seeing that there was something wrong, she was able to get the support that she needed and things like that so that it was probably most hard for her. 

She has been in a relationship for the last four years. They were introduced by a common friend...

It's always been pretty early on, I mean like, my first boyfriend was around the time, because, I was nominated to go down to London as part of the Cystic Fibrosis awards, that was in 2002, so that was all happening when I met my first boyfriend, so he sort of, he knew about it, because obviously I went to school with him, and I was, I was always like really good friends with him, so he's always known about it so it wasn't really an issue, at all, with him. Then with my current boyfriend, I was really good friends with a lot of his friends before I even met him, so when I did start going out with him, he did actually, you know he didn't, he didn't sort of talk about it at all, and then I never mentioned it just through just not, not thinking about it, and then we got talking through friends and everything like that, and one of my friends who I was really close with, who was his friend, sort of told him that I had cystic fibrosis, and he sort of got his words mixed up, and ended up thinking that I had Multiple Sclerosis, so we were sitting there and he was like waiting to see if, I was like, you know, sort of having trouble moving and everything, and he was like, 'Oh can I ask you' and he just asked us outright, like, you know 'What's, what's this thing you've got?' And I told him, and he was like laughing, and he said, 'Oh, I thought you had Multiple Sclerosis, I thought it was like muscle or nerve.' And I said, 'Ah no.' So I had like a laugh about it, and, but, he knew early on, like, like we're all in the same school, and all our friends were sort of connected so, it wasn't really a case of us not having, not having to sit down and sit and tell somebody, because its never really happened to us, I've been with him four years now so.

She thinks that young people with cystic fibrosis should make the most of the facilities and...

I think the most important thing that like people should, like should take into account is the fact that, you know, it is really easy when you're growing up to turn your back on it, and to not really pay attention to, sort of ignore what's going on around you. But the most important thing is that you keep to your appointments, and make sure that you keep on top of your condition because it could just, it could deteriorate so quickly that, you know you need to be able to keep on top of it in case anything does go wrong. It's really easy when you're young just to say, 'Well right, I'm not taking my tablets, I'm not doing my Physio, I don't need to, I can't be bothered, everybody is telling us to do what I don't want to do, I'm just not going to do it.' It's so easy to do that because everybody, you know, nobody would blame you for doing it, but you've just to remember that like your health is the only thing that you've got so you need to at least keep that in control, and all the facilities and the people around you that are there to help you, just take advantage of them, because you know, for a lot of people those things might not be available, so if they're there for you, and if they are trying to get you do to do something, it is for a reason. It's not just for like the hell of it [Laughs].