Systemic Vasculitis

And it’s been good for me, I’m glad we moved.

I was worried about my doctors, [laughs] but I was able to keep the rheumatologist, so that’s been, I wouldn’t have wanted to, I couldn’t, I said to my husband when we moved, “If I can’t keep this rheumatologist, I’ll have to find one, even if I have to go privately. I can’t go back to square one, I can’t start again with one that doesn’t listen.” [Laughs]. I wasn’t bothered about the liver doctor, I thought “Well that’s fairly clear-cut, they know what that is, that’s straightforward.” But rheumatologists, I think it’s so much more complicated. And you get differences of opinions between them. So.

But I was able to keep the one I have. So now I travel, and I stay overnight in a hotel. Takes me four hours to get there, to stay overnight in a hotel, four hours to come back. And I’d travel further to keep this particular rheumatologist [laughs] because once you’ve found one you trust, it just makes so much difference to your life. Once you’ve found the right one.

So, there’s a whole load of things sort of going on there. I’m sorry to say that my experience wasn’t the best. I’d love to say it was, I really would, but I always felt as if I was climbing uphill and up against it, so to speak, and sort of being treated like a naughty child [laughs]. The very first, the very first rheumatologist I went to see – and I can’t remember his name - but I went to see him, and the parking is so horrific at [district general hospital], and eventually I had to park on the pavement, blocking the footway. I’d been there half an hour early, still couldn’t get parked, and I was, I think I was a couple of minutes late. And I came in and he gave me into trouble like I was a naughty child and I, it was not helpful, it really kind of set the tone of, “I’m the master and you’re the silly wee girl.” I felt like a silly wee girl.

And the other thing that happened was, I’d already started to have symptoms from steroids, like hacks on my hands, I couldn’t fasten my bra and I found it hard to fasten my trousers and zip things up because the hacks were so sore, and apparently that’s a side effect. And I said to him, “I’ve got all of these hacks,” and he just brushed me off and he said to me, “You’re far too early in the game to have, to have hacks.” He wouldn’t even look at them.

They were evident, I had plasters over them, they were evident, but they were impacting on my ability to do things. Even to write, I couldn’t write, I couldn’t, you know? And I just felt as if, “I’m not that happy about that.” And of course, I went outside and the nurses who were there said, “He’s had a bad day,” and I said, “Well, that shouldn’t really be impacting upon me,” and I said, “I really didn’t like the way he…” he wasn’t listening to me, he was telling me, he had a very arrogant manner about him.

But he is, he’s a bit like an angel, and he deals with, renal I think it is, he works in, that’s where he’s based. But for whatever reason, and I’ve never actually asked him if he sort of specialises in vasculitis or what he does, I don’t know. I’ve never actually asked him. But he just knows, he really knows his stuff, he’s one of these people that the minute you meet him? You just feel so secure with him. You know?

And I think coming from months and years of meeting people and just feeling nothing, you know, they just, they know nothing, they, they don’t care about what’s happening, they’re not listening to you. To then have this person who you just feel so safe with, that was huge. But he was amazing and that was the main thing was him, yeah, definitely, he is.

But a lot of the time, I think there’s, you wouldn’t think so, with such a rare condition and the effects that it might have on you, but they have, those consultants that are there and, and are specialising in it, have a great deal of understanding of how people will feel, because I think they listen. Because vasculitis is, can affect you in so many different ways that they have to have a broad picture of you as, as a patient, and when you do express concern or whatever, I think they demonstrate – no, they don’t demonstrate. Well, demonstrate because they have, I feel, a real understanding of, of what’s happening in your head, why you’re asking the questions and when they give you the answers, how you will feel about it.

Because if I get it, [sighs] I don’t know, it’s one of those things where you, you, you don’t, you don’t question what your, your clinicians and consultants are saying to you, because they are the experts. But they are more than happy for you to, for you to press them where outcomes might be, might be the important thing. Or feelings.

They [sighs], they struck me as – well, they still do to this day, [laughs] people who, they have an understanding of what’s, the kind of effect that vasculitis has had, not just on the body, but in your head as well. And I get that. It may just be me, but I’m sure others do. I get that feeling from them that you put a, you put your, your idea or your thoughts or your fears or worries across, and they will respond not just in a general fashion, “Oh, well, most people would do such and such.” They’ve, they’ve gone out of their way to develop a relationship with you, because you are different. My vasculitis, even though I’ve got MPA, is completely different to somebody else’s MPA because mine presented itself in a different way, and so did theirs, so did theirs. So, they can’t even categorise it. All the MPA people have all got this kind of thing and they all sort of don’t.

So, I think they are, the distinct difference is that they take the opportunity to fully understand what’s going on in your head, and how that affects your body. And that, I think, is quite unique.

But it’s comforting, I find it very comforting. And it means, that being the case, it means that you can, you can feel comfortable with them, you can open up, you, no question is too silly. In fact, you know, they make a big point of that, no question is too silly because if a question is getting asked more often than not, maybe that’s something we should be taking a particular attention of.

You’ve said quite early on that you’re a bad patient…

Yep [laughs].

… and you’ve said that you’re not nice as a patient, you’re not easy as a patient. I mean what, with this condition what would a good patient look like?

I have no idea, but I just think it’s because I won’t just let things happen just because that’s what doctors should do. So, I think in terms of how doctors and nurses probably feel, they probably see me as a bad patient because I don’t, I go against the norm and what they want because I’m the expert in the disease and they’re not.

When I, like not long after I’d been diagnosed I was in A&E again and I think I coughed up a little bit of blood, I can’t remember, something had happened, and they kept me in, and I said to them, I said, “I want you to contact the doctor that I’m under in this hospital,” “We can’t do that, you’re under the medics now” they just absolutely refused to speak to the doctors that knew what was going on with me. I said, “Why should I have to go through to medics when I’m already under lots of different doctors?” and it got infuriating.

So it got to the point where I’d ask them, “Can you contact this doctor?” the times I’ve asked, “Can you contact [the major teaching hospital in England]?” and I remember one nurse going, “We can’t contact [them], it’s a hospital in London,” as if like you’re trying to get in touch with the Queen, and I’m just like, so I’d just send off an email the consultant and he’d reply and then I would basically be telling them what to do, and I’d have to show them the email to prove that they’re doing everything wrong, and it’s tiring, you know, and I just don’t see why they can’t listen to what people have got to say when they don’t know, you know.

Not all of them in A&E are that, are bad but a lot of egos need to be popped a little bit, and those, with some of the doctors have been quite interested about the illness because I remember one point one of the consultants coming in and going, with like a load of doctors asking if they could just have a chat and stuff and I was like, “Yeah, that’s fine”, because I’m happy to let, you know, for people to learn because they need to learn. But it’s when they just start ignoring everything that you’ve got to say and then not even willing to speak to someone that knows what’s going on, they need to acknowledge that they don’t know everything.

I don’t want someone coming along pretending to know everything when they really don’t. I have a lot more respect for the doctors and staff who will say, “Do you know what, I don’t know enough.” And I think that’s what helped with the first doctor I was with, the registrar, because he was open, he was like, “I don’t know enough,” but it was like a journey together, so he’s like, “I’m learning as well.” You know, so he wasn’t trying to say, “I know everything,” and I think that really helped.

And yeah, most of the doctors, like, well I think most of consultants I’ve got now we’re sort of on this good understanding, but it’s when there’s new people in the mix that makes it difficult because their egos get too much for them. And they have this bit of a complex about it.

Yeah. My illness is what probably covered like a page in a book, or barely that, so, I’m not expecting them to know everything. I’m expecting them to listen to me and speak to people who do know things if they don’t.

I know the doctors probably, for them, it’s a job. You know? You’re a statistic, a number. You’re fascinating because you’re atypical, or you, you know? But for you as the patient, it’s life changing. You know, so? I don’t know. That’s why it’s… As a doctor, I think they should find a way to actually give people what they need?

And sometimes, sometimes they do, I remember going to the vasculitis clinic one day and I was really, you know, really sad and I think my consultant felt that, and he hugged me. You know? So, some, sometimes they sense that, sometimes they do. And also, it’s very, very hard, you know, as a patient, you need to come prepared, you need to make notes, what I want to ask, what I want to do, what I want to… Because when you get there and you’re in the waiting room and you look at the people around you and you’re like, “Oh, I’m here again.” And everything turns blank, you don’t know what you want to do, what you can’t get yourself together to, you know. 

So, I literally make notes of how I feel of symptoms, and I go there with a booklet. This happened on this day, this happened on this day, this, “What do you think?” So maybe it’s silly, but I think it’s the only way to do it because… And it’s the only way to record, you know, your symptoms and what you’re feeling and what you... That’s, again, that is not easy to do but you have to, and if you do that, you kind of work together with the doctor, and at the end of the day it helps you. So, I think it’s important.

I can’t, you know, if he’d been vague and not been able to, you know, explain what this disease was and how it worked and what the limitations were in their knowledge or ability to treat it, if he’d not come across lucidly, clearly, in plain man’s language, the fact that he drew a little sketch of the kidneys to show, you know, to illustrate what would work, if he had not handled that without the skill that he did, then I might have been very worried.

I suppose the other – and I would add to that again from what he said, the main worry when he spoke about kidney damage and how, the fact that within, you know, the space of a very few weeks, the blood tests had shown a sharp decline, my main worry was, well, two worries, really. Firstly, would I have to go on dialysis? So, I asked him about that, I said, you know, “What’s the likelihood of me having dialysis?” and the answer he gave was very, very reassuring. Because it was quite simple, he said, “It’s not on the horizon.”

The other question that concerned me was, which is related to that, obviously, if there is an issue of kidney damage, is this something I should tell my brother about? My brother’s older than me, if I tell my brother about the kidney damage, that raises in his mind the possibility at some stage of needing a transplant, he would be the obvious person to be a donor.

For him, for me to tell him about kidney damage would put him in a position – possibly needlessly, but put him in the position of effectively being faced with a personal moral dilemma. You know, how would he react if that eventuality arose?

So, I asked [my consultant], “Is the vasculitis, is there a genetic element in this?” If there was a genetic element, then I will tell my brother because the message would have been that he ought to get himself checked out. But fortunately, [first name of consultant] said, “No, there’s no genetic connection,” so it was then an easy decision. I’ve not told my brother – I think I have now, because I can reassure him, you know, I can explain it in a way that shows there’s absolutely nothing to worry about. But that’s only recently. At the time I didn’t tell him. Deliberately. And again, the assurance that [first name of consultant] gave me on that was instrumental there.

So with those two things, no. Number one, that dialysis, as he said, wasn’t on the horizon. B, there was no genetic element. I didn’t see any reason to worry about anything. He provided me with all the reassurance that I needed. And, you know, that’s the obvious impression I got of him, that he was a man who knew his stuff.

Yeah. So little things that make a huge difference? One of the consultants, so I was lying in the bed in the hospital, this is on my most recent hospital episode and, she, this was the one who took her mask off and, she just spoke very honestly, smiled, made a connection, and on the way out she just put her hand on my knee, through the bed clothes, and just gave it a little shake. And [sighs] that, [emotional] oh god, just, just that made such a difference, just that. Of course, she washed her hands immediately afterwards and all the rest of it, which was the right thing to do but, you know, just that little bit of human contact made such an enormous difference.

Earlier before coronavirus one of the, another one of the consultants he told me about a research study that he was engaged in, and he sent me a copy of it and asked for my opinion on something and you know, I gave him some ideas and some views and he really appreciated those and fed them back to his research team, and they were about how to conduct the next stage of the project.

And you know, that made a big difference because it showed that he was prepared to, you know, engage with me on a very adult to adult basis and not a kind of, that kind of old-fashioned doctor/patient relationship, so that made a big difference.

I think when it comes to that it’s the little things, again it’s the cliché, you hear it all the time, but you know, it’s the little things that mean a lot. I think you hear that because it’s true, you know. Those are the two I can think of. I’m sure there have been others along the way.

Oh, yeah, I mean now I’m on dialysis you know, one of the nurses who you know, just occasionally, you’re lying there for four hours and the machine is just whirring away and your blood’s going up and down the tubes, blah, blah, and you know, she just like, from the nurses’ station she’d just look over and give me the thumbs up you know, and I’m give her the thumbs up back just meaning, “Yeah, everything’s okay, nothing to worry about.” You know, just that. Just little things like that.

The fact that the lady who brings the tea trolley round you know, will give you a cup of milk rather than tea because you don’t like, I don’t like tea, and then she’ll come back a moment later with some biscuits you know, just that makes a big difference. And the fact she says, “You’re very welcome,” and calls you by your name because she’s bothered to look at your name, you know, that’s all of that makes a tremendous difference. I think it’s the little human touches that really matter in the course of the treatment, and as you, as you relate to your healthcare professionals, to the team.

So, my, the consultant that I had, that I have just now, said to me at one point, he said, “You know, Lynn,” he said “I realise that this couldn’t have been easy and I realise the amount of effort that you had to put into all of this,” and, and whatever. And that was, and when I lost my job, the last meeting I had with the kind of, sort of, the head of surgical services was there, and so the top HR person and whatever, the guy that was sort of head of surgical services said to me, “You know,” he said, “This hospital hasn’t,” he said, “Your care in this hospital hasn’t been great, has it not?” and actually, just to have that acknowledgement meant so much, because I don’t think we acknowledge it. Because I think we’re afraid to acknowledge it, and I think that healthcare professionals don’t like to be seen to criticise other healthcare professionals, but actually just to be in that space, with someone, to, for them to kind of put themselves in your shoes and kind of say, “That must have been really difficult,” [emotional] just that human connection that has got nothing to do with complaints or blaming or finger-wagging or whatever. Just to realise all the baggage that, that you have as a result of that, and what hard work it was and whatever, and we just, we don’t acknowledge that, we just don’t.

And I think, sometimes with the really, really good healthcare professionals and doctors and, and whatever, I think if you’re really good at your job, it’s sometimes difficult to understand just how bad some people are, are at theirs. And how the language that we use and how we make people feel can just, yeah, can just be, can just be awful. And it, and it’s not, it’s not about kind of, “There, there,” or, it’s, like I say, it’s just that very human, just acknowledging that. And it can even just be for a couple of minutes, and then moving on just feels almost like a form of reparation. In a way. And they don’t do it. And I don’t know if that’s a protective mechanism or because their brain just doesn’t work that way, or, because they don’t...