Peter

Age at interview: 67

Age at diagnosis: 50

Brief Outline:

Peter has microscopic granulomatosis with polyangiitis (MPA), a type of ANCA associated vasculitis. It was diagnosed after Peter collapsed with a brain bleed. He feels an important part of his ongoing recovery is having support to manage his depression.

Background:

Peter is a retired marketing consultant. He and his wife have two grown-up children and three grandchildren. Ethnic background: White British.

More about me...

Peter describes 2011 as his “annus horribilis” (year of misfortune). After two operations – the first scheduled, the second following a motorcycle accident – he had over six months of feeling increasingly unwell. He recalls having numerous tests and scans, but none seemed to help doctors pinpoint what was wrong. In the October he collapsed with a brain bleed and was rushed to hospital. Investigations while he was in intensive care revealed that vasculitis was the underlying problem.

The symptoms of Peter’s microscopic polyangiitis (MPA), a type of ANCA associated vasculitis, included chest infections and a cough, tiredness, swelling, painful legs, bloodshot eyes, sweats, scalp sensitivity, nose bleeds and lost appetite. Peter had always felt believed by doctors but, when there were no answers, he began to wonder what they were really thinking.

Peter says that remembering nothing of the seven weeks he spent in hospital is the hardest thing to come to terms with. Although he chatted to people and appeared to take things in, he has no memory of visits from family, work colleagues or doctors, and “that hurts.” Of all the losses brought about by vasculitis – motorcycling, physical activities, energy, travel – this blank period has contributed most to his depression. Peter says this took him to a dark place, so he is grateful for the medication and ongoing specialist support that has made him feel life is worth living.

While disappointed that his vasculitis could not be identified before it became a medical emergency, Peter is hugely appreciative of his care. He particularly values the relationship he has with his specialist vasculitis doctor, who always consults him about everything. Peter is also comforted that staff understand that living with vasculitis affects the body and the mind. This means no question is too silly; they know why he is asking and how he might feel about the answer.

Since 2017 Peter has been in remission on treatment with low dose immunosuppression and a maintenance antibiotic to help prevent infections. He sees his vasculitis consultant every quarter but also gets in touch by email if he has any medication or other queries following appointments with his chest consultant or GP.

Peter still wonders how he managed to “soldier on” at work, even with reduced hours, while he was so ill. In retirement he continues to look for opportunities to use his creative mind. As well as a greater appreciation for family, he enjoys nature and photography and feels fortunate to be alive.

Peter no longer blames vasculitis for everything but says there is no doubt it has changed him.

Yes, and I think it’s very individual in that me, if. I am a different person. Without a doubt than I was before my vasculitis came along. I am different in many ways – physically, mentally. And that’s because I have vasculitis and the effects of vasculitis in me. So yes. I am, I am Peter Vasculitis and, you know, that could be Fred Vasculitis or Avril Vasculitis. I think it’s fashioned me as a person and shaped my body and my mind for the future, yeah. It’s always there.

The, the thing that I have come to terms with now, which I didn’t initially, again, which may have, certainly did contribute a little to my depression, was the fact that because I lost it, you know, when I, when I came out of hospital and I started to realise where the hell I was and what was going on, I started to lose things, you know? We were talking about my motorcycle, and I couldn’t do that anymore. And there were other things.

And I blamed vasculitis for all my woes, all my, I could have a cough, a cold, sore throat, blocked nose, could be anything at all. I could have an itch on my leg and vasculitis would be responsible for it, I blamed vasculitis for everything. Because it was easy to do that [laughs] and I didn’t know any different anyway.

I don’t do that now, of course, because I understand it more, I understand what it has done to me, I understand. I don’t, I don’t think even the people that treated me understand exactly where it came from. They know how it arrived, and - because they themselves the vasculitis community, the medical community, would probably have more questions than answers - [mm] I felt almost comfortable in that, eventually thinking, “Well, if they don’t know, then, you know how can, how can I suddenly start putting the blame on vasculitis for everything that’s happened in my life,” you know, for ‘There is no paper at the corner shop, it’s vasculitis’ fault.’ I mean almost literally that.

So yeah, I’ve grown out of that. Gone past that. I accept it. I even accept it when it comes back and gives me a slap, for some of these reasons that it has over the years. But I still accept it, and it has changed me, there’s no doubt about that.

Peter doesn’t remember being told he had vasculitis. It took time for him to “catch up with my own head.”

And then I was in hospital for seven weeks in total. I, the one thing that has always caused me a problem, because latterly, which I’ll mention as we go through this, I developed depression, was that the seven weeks I had in hospital, I do not remember a single second. Absolutely nothing.

And of course, an awful lot of people said, “Your, that’s your age, you don’t remember any of it,” but my answer to that is that I was ill for six or seven months, nobody knew what was wrong with me. I collapsed, went into hospital, came out with a rare disease that I’m going to have for the rest of my life. Now that was hard to swallow, [laughs] and I would have liked to have known what was happening. I don’t remember a single thing: no conversation, no visit, no nothing. Absolutely nothing at all.

And it took me probably four or five weeks at home – because I didn’t go to work, of course – to just catch up with my own head, I think [laughs] more than anything else. And over those, virtually every day of those weeks, I was going back up to the hospital with my son who was taking me, for blood tests, because they had to keep a very close eye on that. And of course, I was then taking a lot of immunosuppressants, which I still take now. So, they needed to monitor it very, very closely.

And it took a while for me to just realise where I was, and what had happened to me. Because when I left hospital, I had no idea I had vasculitis. Somebody had to tell me because I had been told in hospital by the doctors and the consultants, but of course I don’t remember it. So, I had no idea, I went [laughs], I went into hospital and came out worse than when I went in, which was a bit of a blow to my head.

Peter’s vasculitis has been “pretty well stable” for two years now.

Since 2017, all has been well [laughs]. My vasculitis has stabilised, there’s been no other problems really come along to concern me or, or the consultants. Nothing else has reared its ugly head. Nothing else has reared its ugly head, and I’ve been pretty well stable ever since, my consultants are very happy with me. That’s two years now, over two years since I’ve been like that. I only go and see the consultant every quarter now, and there’s very little we do, we spend more time talking about the weather and our holidays than we do about vasculitis [laughs]. Sorry, maybe I shouldn’t have said that.

At times vasculitis has been a “daily fight” for Peter, and he needs to “soldier on.”

You spoke, a few times you used the word I ‘soldiered’ on.

Yes. [Laughs] yes. Yeah, probably in the early days when vasculitis keeps, seemed to keep coming back to me and biting me, you know, with the osteoporosis and the shingles and the this and that and the eyesight and everything else, it was almost like it was a daily fight. Get up in the morning and put your gloves on [laughs]. Right, so, how’s it going to get at me today and how am I going to fight it off? So ‘soldiering on’ I think really comes from that.

You know, when I was like that, you know, consult the clinicians and the medical people, they’d say, “Right, do this, that and the rest of it,” so I’d go, “Right, okay.” You know, so if they told me to do it, I’ll do it, and I’ll do it to the best of my ability. So yeah, they were, there were a lot of times, even now, but certainly more so maybe back then, that I would soldier on, you know, I’m going to fight this. I’m not going to let it beat me. And I think that’s where that sort of expression comes from.

Peter remembers nothing of his time in hospital after collapsing from vasculitis. This “hurt me more than anything else.”

If there’s going to be one lasting effect that I don’t think I’m ever going to be able to diminish completely, it’s my depression, because I can’t, there are certain things I can’t let go of. I can put them to the back of my mind, I can, and they are, without vasculitis, they wouldn’t be there. And I won’t say they’re caused entirely by vasculitis, what I’m saying is if I hadn’t contracted vasculitis, I, my mind wouldn’t be at that point. It would be no. So, it is a difficult one. I don’t, it’s not something I’ve discussed, I mean, my consultant knows I get treated for it, but it’s not something, I would be very surprised that if he even raised it, to be honest, because of, because he knows how it affects me and it may affect his own treatment [laughs]. So, I think it, it goes unsaid. And that’s probably the way it should be.

But mhm. I think the other key reason for my, well, one of the key reasons for my vasculitis – for my depression here you go – was the fact that I I didn’t remember anything when I was in hospital. And as much as people tell me I should let it go, almost be happy about it, [laughs] it’s something that will live with me for the rest of my days.

Because that is, and I think that’s really, really personal in that I think an awful lot of people would not be of that mind. I think they would, they would be glad that they didn’t, because there wouldn’t be a great deal of good to be remembering.

But I’m, you probably, you can probably tell already that I am a person that likes to paint a full picture of me and my life, and I can, I do that because I need to do it for other people as well. And if I’m lacking in any knowledge, I feel that I am then not able to either help myself or others. And, as I said to you right upfront in this conversation, if there, if there was one thing that hurt me more than anything else that I cannot let go of, is the fact that I don’t remember anything. I feel that was unfair on everybody else [laughs]. That’s my depression talking.

Vasculitis meant Peter had to give up motorcycling and long-distance travel. This is “painful.”

Physical things like motorcycling, bowling, swimming, I was quite a, an active person, physically active, and it’s pretty much, it’s pretty much put a stop to all of those things. I did try, two years ago, in fact, to maybe see if I could do some of these things again, and I even went to the point of buying another motorcycle. And, because I wanted to prove a point to myself after 40-odd years of riding, and I think I was right to do it because I took it out one day and I brought it back, and I didn’t ride it again. Because I knew that when I put it in the garage, I was doing the wrong thing.

So that kind of thing is painful, the one thing that is now restricted which is very painful, is the fact that I can’t travel as much as I like to. My wife and I, for many years, have enjoyed travel.

As I was saying, we were in China for three weeks the year that I got vasculitis. And we’ve been to quite a few other places and we like to travel and see the rest of the world. Now, that, in a lot of cases, means long-distance, and I’m advised now that that’s maybe not such a good idea. For various reasons. Where the vasculitis is concerned, if I lose my medications or whatever, they’re going to be difficult to get hold of in maybe foreign countries. And if I had chest problems, it might be difficult to get that treated if I’m in far-off countries. So, there’s some places that I would have liked to have gone to that I can’t now, so.

With vasculitis, Peter had five years of working reduced hours before retiring early due to the fatigue.

The tiredness and fatigue, yeah, which is both physical and mental. Yes, that’s what made it, when I went back to work in 2012, I was going to say, forget, these other things came along, came and went, and, you know, the, the eyesight and with the vertebrae and blah-blah-blah. But the one thing, and I was working from then until I retired in 2017, so, five, five and a bit years. The one thing that affected me greatly and I understand having spoken to a lot of other people with vasculitis, it affects them, it seems to be a common – if there’s one common thread that seems to run through all the types of vasculitis, and people that have it, however they’ve got it, is tiredness and fatigue, and, both mental and physical. And that was very, very difficult to cope with in that I started to work a 10am until 4pm day, because even by two o’clock in the afternoon, you know, I’d have a lunch break, even by two o’clock in the afternoon on most days, I would physically feel puffed out. I didn’t really want to get up from my desk, and blah-blah-blah. And mentally, because being a creative person, I was constantly taxing my brain for a number of reasons, that made me very tired very quickly anyway, and add vasculitis to the equation [clicking sound], no. So, I found, I didn’t found, I didn’t, when I got very tired with it, I didn’t find I lost my creativity, I just found I couldn’t find it for a while, [laughs] if that sounds, if that doesn’t sound stupid.

So yeah, It’s very strange [laughs]. I’m sorry, I just. It’s. It doesn’t go away, this, this tiredness. It, it maybe manifests itself in slightly different ways, but it’s always there. And it’s very, it is very, very wearing, even though it’s almost unrecognisable sometimes, it’s happening to you, almost without you knowing it, if you know [laughs], if that doesn’t sound stupid. It’s, it can be very, very wearing, and it was for that reason that I eventually decided to retire. If I hadn’t had vasculitis and I wasn’t suffering from this kind of thing, I wouldn’t have retired. Not for a little while, anyway, I probably would have stayed working for a, hopefully another couple of years. But it, it was hard, I mean for nearly five years, suffering that. That was damned hard work. Really, really hard work. And I thought, “No, no, no. I’ve, I’ve done my bit.” [Laughs] I’ve, you know. I think I’ve helped an awful lot of clients over an awful lot of years, now it’s time to help me.

Getting through intensive care put life into perspective for Peter and helped him come to terms with what he had lost as a result of vasculitis.

I think in my case, maybe a little different to some others, in that when, [laughs] forgot to mention this, when I was rushed into intensive care, when I was in there for a few days, on the second – I think my wife said it was the second or the third day, they were extremely concerned about me because I had developed a really bad chest infection in intensive care. And I think they were at the point where they didn’t think I was going to make it.

And, albeit I don’t remember anything about hospital or being there at all, not even a micro, millisecond, the feeling that has been expressed by other people that I know, the feeling that I was fortunate to come out of that and come through it, I think certainly put a new, a new, [laughs] new aspect on the rest of my life. I certainly, as much as I possibly can, make the best of my life. And things that used to concern me are trivia.

And I, that has helped me come to terms with my situation, the things that I have lost or the things that I used to have, or liked to do, like my motorcycling and other things. And maybe more, a more comfortable person with myself, I think, and what I have. I mean, that’s also been helped by the fact that I’m now retired, therefore certain pressures in the past aren’t there. So yeah. It has its good sides [smiles].

Peter feels able to ask his vasculitis consultants anything because “they’ve gone out of their way to develop a relationship with you.”

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.

A combination of talking therapy and medication has helped Peter deal with “very scary” suicidal tendencies that followed his vasculitis diagnosis.

So, when you got the route to your psychiatry referral, did that come through your GP or the vasculitis clinic or something else?

That came, well, initially from my GP because I went to see her and said that I was having a bad time. And since she said that at the GP practice here, they have a lady who comes in once a week, can’t remember her name now. And she’s specifically there to talk about people’s psychological problems. And, I mean, it was very fortunate in that I, so I went to start, start to see this lady and, after a couple of sessions, I felt quite comfortable about talking to her. Because I felt a little bit nervous, originally. And I saw her on, ooh, I was only supposed to see her once a week for 12 weeks, but I think I saw her once a week for about six months.

And I, at that point in time, I was going through a very, very dark period of, well, most of my thoughts were suicidal. So, I was going through a very dark period, and she took me, she walked me through this up to a, up to a point, and then she, you know, after those meetings, she said, “Look, I think you really need to be speaking to somebody else now.” And she spoke to my doctor, my doctor referred me to [the psychiatric hospital]. And I went to see a, a psychiatrist there, discussed that with them. I was, I have to take medication for it, I take sertraline. I don’t know what it does, but [laughs] I’ll take it.

And, up to a point, my suicidal problems, or tendencies, which were very scary once upon a time, are pretty much gone, to be frank. And the talking and the consultations helped me through a few issues that I had, and I came to terms with those. And that pretty much, I wouldn’t say put a lid on it, it manoeuvred the worst out of my head, I think, and I knew how to come to terms with some of these things, and how to see them when they presented themselves to me. How to deal with them.

[Laughs] and almost to the point where, almost to the point where I was being a little more accepting of the fact that I couldn’t remember what had happened to me in hospital. But that’s [laughs], as my psychiatrist says, that’s the one big obstacle that they don’t think they can ever get out of my head. It’s there, it’s too deeply rooted, because it’s in me, personally. It’s a personality trait, if that’s the way you want to put it, rather than something that very often happens with people with this kind of problem, you know, psychiatric problems or whatever. It’s down to me as an individual, how I think about it.

So, it’s, otherwise, yeah, I’m glad I went to see somebody. Because I wouldn’t be here, sitting here talking to you Avril if I hadn’t, it’s as simple as that. And it wasn’t a good time but, yeah, again, I was helped. I was helped an awful lot. Very nice people.