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Interview 38

Age at interview: 18
Age at diagnosis: 14
Brief Outline: He uses two types of insulin' Humalog and Lantus. Humalog is a short acting one that he injects just before each meal and it peaks after about fifteen or twenty minutes. Lantus is the long-acting or background insulin that he injects once a day before bedtime. Before Lantus he used to use Humulin I and it was changed because doctors thought it would suit him better. Lantus has improved his overall control and he doesn't experience low blood sugar levels in the mornings as he did before. To him the only problem with Lantus is the disposable pens which he thinks are rubbish!
Background: He finished secondary school last year and plans to go to university to study mathematics in September. At present he is working and lives at home with his parents and an older sister.

More about me...

 

Says that at clinic he just sees whichever consultant is available and if they are too busy he...

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So you don't tend to see the same, the doctor. I mean what about, do you have a specialist nurse there you see?

When I was, when I was younger I did see a couple of the... Well there was one nurse in particular I. Just after I was diagnosed I was phoning her, well phoning her office obviously every, every fortnight or so plus as I say this is what the test results are looking like. Should I adjust my insulin and should I maybe have a snack here instead of there. And I did see her a couple of times in the clinic but she wasn't based there. It was just a case of if she was there I could see her. But not so much with the nurses anymore. It's more a case of if you have general questions and the doctors are pushed for time, if they're really busy then see a specialist nurse and they'll try and help you. 

Also well when I changed one of the insulins I use not that long ago. Well I don't know maybe about 18 months now when I think about it. The demonstrations on how to use the new types of pens etc is done by the nurses. With the doctors, only like I said before, you see who you see depending on who's busy. But I do have on my file, I do have one doctor who, well there is a doctor named as my consultant and there's been. There's a couple of other doctors I see fairly regularly but, [sigh] but yeah. It's not always the same one which, which is a little bit frustrating because yeah they've got all the notes but you quite often have to explain things to [laugh] three different doctors. When, I mean, granted one, no guarantee they'd remember every detail about every patient but there's a better chance of it if you've got to start from scratch every time.

So you feel you are starting from scratch quite a lot?

Yeah. I mean not so much any more but for a while it was getting to be there was a different doctor every visit and I suppose now my insulin regime has settled down as well because it was being changed about all over the place for a while. That as well having to go through and say, yes I'm on this insulin, this insulin taking these doses at these times sort of thing. I've told three different doctors this already. Why can't somebody write it down and get it, [sigh] and remember it. But, anyway.
 
 

Says that at his clinic he sees whichever consultant is available and if they are too busy he...

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The nurse, the nurses did do a very good job of it. I mean well, the professionals, specialist nurses are supposed to do [laugh] do a good job of it but yeah they, they were really helpful and they were. Everything was made really clear and got all the, all the little coloured leaflets saying, well just reinforcing what they'd said in case, if anything I forgot, anything I needed a recap with. They, they were always willing to stop. Whenever I had a question even if it was something, something we'd talked about 20 minutes previously and I'd been struggling with it for [laugh] that 20 minutes they were always willing to go back and go over it again. They were, they were a great help, yeah at that point. As well they weren't, they weren't patronising, they, but at the same time they didn't like assume that I had the same level of knowledge as them which, [sigh] which is another. 

It is a big problem to be honest as well in my opinion you get a lot of medical people and a lot of the literature that's produced about it as well it's assumed that everyone has a fairly intimate knowledge of what's going on in the processes involved. But like I said, there is, there were some people who won't have a clue what it even is until the doctor says, you have diabetes. [laugh] And that'll be the first they've ever heard of that word. And the illness, well not illness a condition.

Yeah well it is. I mean it's. [sigh] I don't mean, I don't mean to. I, it's nothing against them but it's doctors I find that tend to be more guilty of this than the nurses and the dieticians and the specialists that you see. But I suppose they're used to, they're used to going to conferences, attending it and being able to speak, attending conferences with everyone else who knows exactly what they're on about and being able to list off these 42 syllable medical words and everyone understanding them. And to be honest there's, there's very few doctors [laugh] I have found who, who are really good at coming down and discussing on your level. 

Well one of them, the guy who is, who is my doctor, whose name is on my file who I've not seen for about, well be pushing a year now since I last saw him. He's really good at that and I saw him every day when I was in the hospital as well. Even though it was over a weekend and I know he's got, [laugh] he's got family, he's got a young grandkid but he's in every single day and it was like he was just flying through the ward on his way home from somewhere else. He was actually in taking care of people. Came in to speak to me two or three times [sigh] and there it was good. 

But as, [sigh] as well I find is, there's a couple of doctors I've spoken to out with doctor/patient environment, if you see what I mean, and [sigh] it gets a lot better then as well. I think the problem is that you get a lot of doctors say, right I'm in doctor mode. I'm working here so I've to be proper and use the proper medical terms for everything. At home they can just loosen up and come down a level [laugh] and not have to worry about being proper and it, it does help a lot.

Yes.

It's actually, it's actually my ex-girlfriend's uncle [laugh]. He's a consultant, he's a diabetes consultant at [city]. And he was really good to talk to actually. Just about, well stuff in general whether it was ranting about new insulin pens that are utterly useless or anything really. It was great having somebody who knew what they were talking about but out of the professional capacity. Yeah without professional doctor/patient relationship, yes.

 

He likes his new insulin regimen but strongly dislikes the disposable pen that he needs to use...

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So the type of insulin you're using at the moment is?

I'm on. Well I've got two types. I've got Humalog and Lantus. Humalog is a short-acting one. I take it in conjunction just before every meal and it peaks after about fifteen, twenty minutes. It's effective for about an hour and it still gives some effect for up to, I think it's up to two and a half hours. Do that before every meal. 

And I've got Lantus as well because, which is a background one. It's a long-acting one take one, one much bigger injection once a day. I do it in the evening before I go to bed but it needs to be roughly every 24 hours. And that sort of acts as a top up. So if I have a snack or anything during the day it doesn't go straight off the chart, straight away. And to be honest I really quite like doing it that way because it gives, gives me a lot more flexibility than having to inject 20 minutes before I eat. I can just do it and with the Humalog as well I can do it just after I eat as well which is really useful. Like some, like on a plane or something so if you're getting - come round with in-flight meals save you having to wander past this cabin crew while they're serving it, just wait until after and then go and do it. It's yeah I do like it a lot more that way.

I used to be using, I used to use Humulin I instead of, instead of Lantus well they changed it to Lantus. Came out, it's relatively new [laugh]. They changed they changed me onto that because they thought I would be slightly better suited. I went through a, I went through a phase of having quite low blood sugar levels first thing in the morning but if I'd cut back on the Humulin I anymore it would have been a bit too high for the rest of the day. So instead they said ok we'll try you on this new type of insulin. It's what , they produced all these graphs showing how effective they are and that the lot more effective over a steady period whereas Humulin I would peak in the middle of the night and then that would leave me a bit low in blood sugar in the morning. So yeah they tried me on that and then I do like it. One thing I don't like about Lantus is the stupid disposable pens which are absolutely rubbish and the worse things ever invented [laugh] ever for diabetes care. But yes anyway.

Tell me a bit more about that?

The the pen I use for the Humalog I had two the same for the Humulin I I've got the same cartridges as Humalog. It was fine. You could dial up however many units you want in single unit increments and if you, like put in too many you can just turn it back and then just push the button down on the end and it would go in. And the cartridges, 300 unit cartridges, yeah up to 60 units at one time which I don't actually. I've never had to do more than about 14 I think was my highest [laugh] at one point. But I mean you've got the potential to go all the way up to 60. With the Lantus, they're fairly well built, the Humulin I once I mean I've been using the same one since I was diagnosed. I mean that's what four and a half years now. And there's one crack on the casing that goes around the cartridge where I dropped it on some concrete [laugh] but apart from that it's fine. 

The Lantus one was their stupid flimsy plastic. It's just, they're disposable as well so it's all sealed up. So what you do is you stick the needle on the end, take the packaging off that. Put the lid back on and away you go. It only goes up in two unit amounts. You've got to pull a thing back to get it to, before you're able to use it. And if you've doubled up the wrong amount of insulin you can't put it back in again to cleanse it, you've got to just count the clicks really carefully and you can never get the last one i
 

Says that occasionally you could get a hypo where it takes longer to bring your blood glucose to...

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So what are the signs for you?

For me?

Yes

Light-headedness definitely. That is the main thing that I tend to feel. Also start slurring words a little bit sometimes if it gets low. And I tend to go really, really pale as well although obviously I don't notice that as much as everyone else. Although like I said earlier on it is different for everyone so most of this might not, well almost certainly won't feel the same way. But it's strange as well because there'll be some times my blood sugar level is about 3.5, 3.6 maybe and I'll feel it. Other times it can go down to about 2.0 and I won't feel a thing until it goes down to about that. So it can be quite alarming at times [laugh] if you do feel a little bit hypo and do a blood test and it says 2.1 or something. But yeah. But it's usually, I'm usually I'm okay for getting them stop though. I've, I have had a couple of ones where its not gone back up at all [sigh]. And in fact more or less the first one I had, well one of the first ones I had. The actual first one I had was in school one afternoon, god that was frightening [laugh].

What happened then?

I just suddenly felt really light-headed going into chemistry one afternoon. Almost fell over the table going in and then really quite frightened my teacher. Although he did, he did have an idea of what to do and you had a fair idea of what was going on but yeah it's quite worrying when you've no idea what's happening like the very first time I had no idea what the symptoms would be like. But one of the first or what would be maybe the second or third maybe that I had. I was in here I just could not get it to stop I drank like a bottle and a half of lucozade then was chocolate biscuits, shortbread. You name it trying them and yeah it was fairly high the next morning the blood sugars as you would expect after having all that stuff but it just [sigh]. And the most frustrating I had that every other time I have it, I've had a hypo I'll try maybe half a bottle of lucozade or something else and I'll be fine in a couple of minutes. Whereas this one was about 20 minutes before I got it sorted out. It was quite worrying. I mean but that happens from time to time.

Did you tell your doctor or…?

Yeah I well, I did well show the next one, there's next week at the clinic. I did say that and they said that that can happen. I mean 9 times out of 10 in fact probably 9 and a half times out of 10 it will be, it'll sort itself out fairly quickly. But that other half of time it could go on, could go on for a while and yeah it's got the potential to but it's. I've not found it to be that common.

 

He felt he managed his diabetes at school pretty well, but said that in the beginning other...

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School was the really big thing until I got the hang of doing that. Well dealing with injecting and blood tests at school because straight after I came out of the hospital I was still on four tests a day to make sure the sugar levels and everything were ok. So having to do one at lunchtime. I was having, got into a routine as well doing it in advance of eating. So whenever I test, I inject, I eat [laugh] it was at the point where I was having to ask out of classes to do it. Like getting changed after PE maybe. Do one then. 

I suppose I wasn't having to do it so much as having to explain to everyone [laugh] what I was doing, what was happening. That was... I occasionally wish I could have just, I'm sorry. I occasionally wish I could have just taken it, taken a little briefcase full of leaflets [laugh] maybe and handed them out to people because it was [sigh] yeah it was the explanations that was a problem [sigh]. But I was really lucky as well though in that close friends and family were all really supportive and really understanding. Yeah you get 500 different questions [laugh] but they all quickly accept it and say, ok this is happening now [laugh]. And I just took it in my stride. It wasn't, I didn't feel like I was being examined or watched to see what was happening or anything like that. But it obviously there is an element of people... of curiosity I suppose from other people.

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