Interview 13

Age at interview: 43

Brief Outline: Had planned surgery in 1998 to remove kidney because of ongoing problems with kidney stones and infections. ICU stay after surgery was also planned. Stayed in intensive care for 2 days. Spent about five weeks in hospital after surgery.

Background: Occupation: trainer/ researcher. Marital status: single. Number of children: no children. Ethnic background: White British.

She prepared herself psychologically but her first date for surgery was cancelled because of a...

I was in hospital because I have problems with my kidney. And it was agreed with the consultant that he would remove my kidney. And because of my impairment [spina bifida since birth], it meant that he would have to remove the kidney from a different position and would have to collapse a lung. And so he would be going to have to arrange for me to go into Intensive Care after the surgery. So I knew that was going to happen, so that was one good thing.

How long ago was this?

About 1998. And the worst thing was actually waiting for a bed to become available because you get yourself geared up to have surgery, and then it had to be cancelled because there were actually no Intensive Care beds in London. And in fact, on the day that I had the surgery, I took the last Intensive Care bed, in north London. And so that's quite traumatic to know that on the very day, you might, you know, it might all go horribly wrong and you might not have the surgery.

She had pain in her chest when she came round and, in her confusion, felt she was drowning (she...

So I had the surgery. It was six and a half hours, it was quite a long surgery and I went straight to Intensive Care. I'd say then I woke up in Intensive care and, as I say, I was in a lot a pain from the chest drain. But they dealt with that very, very quickly, I have to say. But I woke up with them actually trying to clean my teeth. I was on a ventilator. And it's hard because I know they were trying to do it because they were trying to make me feel more comfortable, you know, to make my mouth more sort of fresher and so on. But because obviously I had a breathing tube in, I couldn't swallow. So they were having to take the fluid out and I thought I was drowning. I mean, I knew, obviously, I wasn't, but because, and they were trying to explain it to me. But I'd just come round and I mean, obviously I'd come round before and not remembered. So that was actually quite, really frightening, of the whole experience was the most frightening experience. Even though the pain was horrible, I knew it was going to happen and I knew that something could be done about it. This, not being able to speak and sort of trying to say, you know, I think I'm, I feel like I'm drowning, was actually very frightening. And it was actually a nursing thing rather than a medical, a sort of doctor related thing.

The other thing is that I can actually sign, basic British sign language but nobody else could [laughs] so that was even harder.

She felt weepy having had surgery but knew these feelings would pass because she'd had them before.

One thing I would say, and it's happened to me before with surgery, but it's particularly true after Intensive Care, I think something like three days after when I still had, sort of when I'd gone back onto the ward, obviously the general ward, I was terribly, terribly weepy and not because I was in pain or I was worried or anything, I just, and it has happened before, and because it's happened before, I wasn't sort of like, 'Why am I crying?' and, 'I don't know why I'm crying,' sort of thing. I mean I wasn't, not when anybody was there, but just I'd suddenly start crying and I wouldn't know why. So I think, to be aware that you might, you know, it's generally the anaesthetic and the drugs and everything can make you do strange things [laughs] that you wouldn't normally do. And just not to, you know, this will, this too will pass, sort of thing.

She learnt more from her brother than from the doctors about the pain she might have after surgery.

I got no information about what it was going to be like at all, and that was a bit disconcerting. And unfortunately the consultant I had, who I got on very well with, didn't actually have a team of doctors under him. So there wasn't really anybody that I could, that I felt comfortable asking about it. So I was sort of a bit vague. I had visited a friend some years before in Intensive Care and that had been a very traumatic experience, to go visit a friend. But that was literally the only experience I had. I'd say, really the only good thing is that my youngest brother, who's a doctor, one piece of advice he gave before I went into surgery and into Intensive Care, he said, "Well you know what surgery feels like" because I'd had surgery in the past because of my impairment. He said, you know how it feels and that sort of thing. But he said because you've got a collapsed lung, you'll have a chest drain and they can really, really hurt.  

And particularly because of the spinal condition, it would be more likely that it would be more painful for me because the ribs are so close together. And I'm so, so glad that he told me that because actually when I woke up, it was incredibly painful. And If I'd woken up like that, I would have been so scared that, you know, somebody had chopped my arm off or something, because every time I breathed, it was incredibly painful.  

So the trouble is that you don't know what you don't know and I think quite often doctors don't realise that patients don't know and they don't know what it feels like and they don't, and things that they don't think, "Oh well, we'll put a chest drain in." That doesn't seem terribly important to them but actually can make a huge amount of difference.

Her doctors didn't seem to appreciate that she might take longer to recover and not need certain...

But I think, sort of, I was in for Christmas which was a bit sad but I think that one of the things I did discover and it's what I mentioned before about people, the medical profession in general, nurses and doctors not being aware about disability is that the Associate Consultant did come to see me about, you know, coming out of hospital and he said, "Oh well, people are up after surgery, after two or three days of having this surgery." I mean, usually it's not quite such a big operation as I'd had because, to start off, but the other thing is, they'd stand up, whereas I would, in fact the whole of my bottom half would be just dragging on the thing because I don't have any movement at all in my legs. So it would be absolutely agony, it would be just, you know, it would just be like being torn in half. And it was like he couldn't get his head round it and even the staff nurse was looking at him thinking, you know, "Why can't he see this?" that, you know, the fact that I don't normally have somebody to help me lift my legs when I transfer in and out of bed is fine but, you know, when you've had a major, major thing like that then there is no way you can have a dead weight dangling off [laughs]. So again I think that lack of knowledge, and awareness of, I mean obviously they can't know about every single sort of disability that people have, but just to be more aware, just another understanding is definitely needed.  

Because they can give, if you're going to have surgery they give you anti-clotting injections every day if you're in bed, you know, for a long time, to stop blood clots. And it's quite a painful injection, you end up with bruises and everything. And I asked my brother, I don't understand why they're doing this to me because I'd been in a wheelchair for 42 years, I'm not going to get a blood clot from being in bed [laughs] you know. There's people going to bed, you know, who normally aren't in bed, and he [brother] said, "Tell them." You know, "Say, 'I don't, stop this, it's ridiculous'" [laughs]. You know. And so I did and I saw the doctor and I said, "Why are you still giving me this?" And he said, "Well, it's to stop, you know, risks of blood clots." And I said, "Well, yeah but I've been in a wheelchair for 42 years, I'm not going to get one now." And he said, "Oh, yes, right." And crossed it off. But, you know, I needed somebody to ask somebody to sort of, but I mean I couldn't have done if I'd, you know, if I'd not had a doctor in the family, I could have but you have to not be afraid to say, "Actually, why are you giving me this injection?"