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Nicola

Age at interview: 46
Age at diagnosis: 44
Brief Outline:

Nicola has microscopic polyangiitis (MPA), a type of ANCA associated vasculitis that has affected her kidneys. Fast action by her GP meant that she was diagnosed and began treatment in less than a week.

Background:

Nicola, a former teacher, is chief executive of a charity that offers baby loss counselling and support to families. She lives with her husband and two sons. Their newborn son, Theo, died in 2009. Ethnic background: White British.

More about me...

Two years ago, Nicola was feeling tired and sick, and had also noticed a rash. Although there were more likely reasons for her feeling not quite a hundred per cent, she is grateful that bloods tests ordered by her “intuitive” GP led to her being diagnosed with vasculitis in less than a week. Nicola says the fast decision-making and action not only saved her life, but also saved aspects of her life.

Nicola has microscopic polyangiitis (MPA), a type of ANCA associated vasculitis that causes kidney damage. Overnight she went from never having to think about her health to what she describes as a “total car crash in your head” as she came to understand that she was seriously unwell and would need invasive investigations and unpleasant treatments.

Throughout hours of treatment in hospital, Nicola remembers the kindness of nurses who acknowledged the toll on her body. Unfortunately, in spite of a combination of steroids, plasma exchange (a procedure to replace the plasma in her blood with a substitute), and chemotherapy (cyclophosphamide), Nicola’s kidneys didn’t “bounce back” as hoped. After receiving a different type of immunosuppressive treatment (rituximab), her kidneys slowly began to recover. She is grateful that dialysis and a transplant will be available if needed but counts her blessings that she is currently well without them.

Nicola’s illness followed several traumas in her life: the loss of her baby, Theo, from a rare condition, the sudden death of her dad, and her mum’s terminal cancer diagnosis. This background, and her poor response to treatment, left her feeling concerned about her future health. She feels that, after she told staff about her fears and asked to talk to someone, they saw her as a whole person.

Looking back, Nicola is surprised by how hard she pushed herself, for example by working and supporting other patients while in hospital. She was particularly determined to come off steroids completely. Taking care of her appearance had always allowed Nicola to face the world, however broken she felt inside by life events. But, with steroids, she gained two stone in weight and a swollen face, which at times meant she avoided people and went unrecognised in the street. Coming off them was a challenging and lengthy process that brought with it migraines and joint pain.

Nicola says she has been able to make decisions such as coming off steroids because she feels well-supported and heard by her medical team, although she would always like more information. While she feels vasculitis has stolen time with her family, she notices how well they have adjusted. As one of her sons said, “your qualities are still the same, your illness can’t take that away.”

 

Nicola had a kidney biopsy in the lead-up to her vasculitis diagnosis. It was “not the most pleasant.”

Nicola had a kidney biopsy in the lead-up to her vasculitis diagnosis. It was “not the most pleasant.”

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So anyway, I came in on the Tuesday, all fully prepped for the biopsy [sighs]. For those who have never had a kidney biopsy it’s, yeah, it’s not, it’s not the most pleasant. Maybe everybody experiences it different, but you lie on your front and you’re still awake and they basically use a really large [laughs] – and stupidly, I kind of looked one time - but it’s like this humongous, big gun [laughs] that goes in your body. And I talk about a gun, because they do, they actually trigger it like a gun, and it takes a bit of your kidney. And they have to do it twice. And, yeah, I did, wasn’t, wasn’t pleasant but survived it, but just it was, horrible feeling actually. Because you have to lie really, really still as well, and you can feel them wiggling around [laughs].

So anyway. So that was on the Tuesday – and then you have to lie still for six hours which is nigh impossible for me to lie still for that long. But my husband was there, so I eventually, I think after about four hours, they could even let your head up a little bit. [laughs] And I was aware that I was quite tender, so on the, I think that was all that happened that day. And then on the Wednesday they - they would come and check on me, and my stats were still going down, so my stats were, were not looking good at all, they continued to deteriorate. And everybody had different ideas, but there was a really lovely consultant who said, “We think it might be something or vasculitis,” and I was like, “What on earth is that?” and she’s like, “Look, I’m not even going to tell you much more about it because there is an expert in the hospital, he is, like, the expert on vasculitis so he will tell you everything.”

 

A doctor told Nicola she had vasculitis. Although that conversation was the first time they had met, she would have preferred him to get straight to the point.

A doctor told Nicola she had vasculitis. Although that conversation was the first time they had met, she would have preferred him to get straight to the point.

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And actually, do you know what sticks in my head was, he’s, he’s amazing, you know, I’ve got a really good relationship with him now, but I didn’t know him at all. And he started with, “So tell me a little bit about you, you know, you’re obviously married, and you’ve got children? How old are your children?” and [sighs] because of my previous experiences of, I lost a baby and my dad died suddenly and then my mum obviously not long after got diagnosed with cancer, in my life, I’m used to those conversations where people are about to tell you really, really bad news.

And the, I, it was being triggered, I’m a highly sensitive person, I really pick up on things. I was, I was feeling that’s what they were doing, and I remember finding that unbearable, I just was like, just, I wish I’d just been like, “Can you just tell me?” because it felt like this drawing out and then it’s like waiting, and I think in my head I was waiting for, I don’t know. I don’t know what, I don’t think it was cancer because he’d obviously said vasculitis, I just wasn’t sure what was coming but it felt bleak.

And actually, so by the time he got to, “So you have something called vasculitis,” [laughs] and described it, weirdly, I was like, “Oh, that felt actually, okay, okay, I get what that is,” he, he wasn’t making it that this was, it wasn’t a rosy picture, he did say all the things that I kind of look back on now he said, “It will be three months of you feeling quite poorly and having a lot of medication, it will be six months of really quite a lot of rest and, you know, a different life, but it will be up to a year before you feel like yourself again.” And that felt quite difficult, but it’s been absolutely accurate, looking back.

 

Nicola is grateful to her GP who, by acting fast, “saved so many aspects of my life” with vasculitis.

Nicola is grateful to her GP who, by acting fast, “saved so many aspects of my life” with vasculitis.

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So right now, in life, I feel fortunate, feel fortunate to have had such really great care. I know it’s still there so that gives me lots of reassurance, I’ve been so lucky to be diagnosed really early. So I didn’t touch on that but I was, you know, well, I did, I suppose, I was diagnosed exactly in less than a week from being admitted on the Friday to being diagnosed on the Wednesday, I think is just unbelievable.

I would challenge anyone to have had from doctor’s appointment to diagnosis so quickly, and I honestly, honestly count my blessings all the time that I had such an incredibly intuitive GP who did the bloods that day, and such an amazing team at the [acute teaching hospital], to be able to quickly read those results and to quickly fast-track that treatment for me. Because I do know that they saved my kidneys.

Had they not acted so quickly, and I mean, like, it could have been just a couple of weeks from my GP saying, “Well see how you feel in a couple of weeks,” I could be on dialysis or be needing a transplant, and like, my goodness, what a different life I would have been living in terms of, you know, even just would I have been able to look after my mum? Those important things. So, I think that’s what illness does, isn’t it, it’s, you know, it can be life-altering for so many different reasons, but there was fast decision-making and there were skilled doctors and what they do, it, I means it’s lifesaving. I don’t like to think that they saved my life because it’s not as dramatic as that, but they saved so many aspects of my life. And I feel – yeah, I do, I feel really, I feel really blessed to be where I am just now, and so well.

 

Nicola’s kidneys weren’t recovering from vasculitis as expected. The day she started plasma exchange was “just an onslaught” among a “manic three days.”

Nicola’s kidneys weren’t recovering from vasculitis as expected. The day she started plasma exchange was “just an onslaught” among a “manic three days.”

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And then the next days were [laughs] were just tired, I mean all I do remember is having to get blood transfusions. There was a day, it was the Friday, it was just an onslaught, they put in, so I woke up to the, on the Friday morning, they said they would put an internal line - he didn’t explain that, so out of all the bad news, he kind of threw in, he was like, “I could give you a line that comes out your neck for the plasma,” he said, “But I think you’ll probably need it for dialysis.” So that’s how serious they were about my dialysis, he said, “So I’m going to put in an internal line, and you’ll go to theatre for that and it’s fine, it’s nothing major.”

So I still hadn’t thought anything of this and then the Friday morning, then couldn’t eat, had to, you know, fast, obviously. And then was down in this theatre, the next thing, and they’re like talking about – and that again, when I think back, that was, that was horrible because you’re awake, [laughs] so you’re actually lying and aware that somebody is like cutting you. I mean, they slightly numb it, but, actually, they did ask, “Do you want to be slightly sedated?” I was like, [smiles] “Yeah, would you, would anybody not want?” and they were like, “Well, you know,” and I’m saying, no, I said, “I’m quite happy with the maximum sedation, thank you.” [laughs].

And thank goodness, because it just, it felt like people moving you around, you’re kind of in this theatre environment that’s like, you know, just again, it’s all these stressful-inducing moments [laughs].

And then, it was just everything was happening. Came up and there was a woman wanting to do research with me. I’m still trying to have something to eat by this point, and they were taking me down to do a plasma there and then, like, I mean, I remember, I think I had 20 minutes from back to theatre, still groggy, woman asking me about some research and me still not having a clue what had happened. My neck was stiff but I just didn’t know what had happened to me. So found myself then being wheeled down, it was just everywhere, that was a, it was a manic three days, really.

But the Friday, this day that I’m talking about, was the day of everything, so then, turned up in this unit with the big machine, and all the wires and all these bags and them explaining that, you know, I think I got 68 bags of plasma all together, so, it was going to go on for, I think about five days? So, five days for four hours every day, I was attached to a machine.

I feel like I’m talking about somebody else, do you know? That’s funny. I feel like that it’s someone else’s story, almost, because it’s always like that when you look in on it, isn’t it? You’re in it so you just do it, but when you’re looking in on it, it feels totally different.

 

Nicola felt “absolutely lousy” when reducing steroids but also “driven” to keep going.

Nicola felt “absolutely lousy” when reducing steroids but also “driven” to keep going.

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I was, you know I was working, I think I was working full-time by then, about probably by Easter. Which again, I think was quite quick, but I was, I was quick trying to get off the steroids. I do remember every time I’d come off it, it was horrific. Like, migraines, really sore really sore joints and just generally feeling absolutely lousy. And to be honest, I think the easiest thing would have just been to stay on them. But I was so driven, it was like, in some ways that was good, it was like a fire in my belly going, “You have to get off these because I think that will be the thing that will make you feel better.” And I kind of did believe when they did say like, you know, it is like, it’s like your body is just having to process itself, like go back to the, its own cortisol. And adrenals. So, I knew that when I was even really, really poorly, I knew it was for a reason and wanted to give it as, a best shot.

 

Vasculitis “knocked” Nicola’s identity, as it meant she was no longer “a healthy person.”

Vasculitis “knocked” Nicola’s identity, as it meant she was no longer “a healthy person.”

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So, that was hard, it’s the thing about [sighs] it’s like, the thing about diseases that often we don’t talk about, is the other silly stuff. It’s not silly, it’s big, but it almost feels like, you know, you’re concentrating on getting these kidneys working and you’re really poorly, but actually my face and me changing was one of the most challenging parts of the experience.

Because [sighs] so I’d you know as I touched on, I lost a baby 11 years ago, and I always would still wash my hair and put my make-up on. It’s just part of me, it’s not for anybody else, it’s for me. And it’s, I guess it’s part of my identity, it’s something that I enjoy, it’s almost like in the morning I enjoy doing it. For some people it’s a total chore, but I am really passionate about, you know, my make-up and getting new things. And so even, I remember in the darkest of times, like my friends would know me really well, they might like drop me or send me a parcel of like a lip gloss or something, knowing that these things – and weirdly they became things because you could kind of go, “I am just going to,” it’s like that warrior paint, you’d be like, “Okay, I’m all right, you know, I feel broken inside but here I am and I can present to the world how I want to present to the world, so for this day I, I’m feeling okay actually, and I’m going to go out there.”

And you know, I had a son at the time and so, he was just a baby, I’d go out with a toddler, and go out places. But this felt different, so what had happened was not only had my identity been knocked as in I was no longer a, like a healthy person, and I mean at the time, I was 44 so I mean it’s, you know, I like to think that’s not very old to be ill, and I’d never obviously experienced it, neither had, you know, my parents had always lived a really healthy life and they were, had a healthy lifestyle. So, I think I just put myself into that bracket that nothing happens to me because I’m invincible, like you know I eat well, I exercise, I’m not overweight [laughs]. I’m a bit more overweight now than I was, but I was, I was really slim. And so yeah, I didn’t ever think about my health?

And so overnight, I mean really, I kind of became somebody that was ill and needed treatment and knew that my life wouldn’t go back to what it was. So that was a huge adjustment in my head, but actually I couldn’t even look at myself and see me anymore, so I’d then look at myself and I would be reminded of how ill I was because I didn’t actually look like me.

 

Nicola’s changed appearance meant “every time I leave the house, I have to tell you about my illness.” It felt “like I wasn’t Nicola anymore.”

Nicola’s changed appearance meant “every time I leave the house, I have to tell you about my illness.” It felt “like I wasn’t Nicola anymore.”

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I mean, people didn’t even recognise me. I could walk down the street and genuinely, somebody would walk past me, and I’d have to say, “Oh, it’s Nicola?” And then the other thing would be their faces. So, some people would just be, like, in shock, you could see them, which sounds extreme, but it was like that. You could see people thinking, “What on earth has happened to you?”

So, then I’d need to explain. So, my illness became me, it became, I was carrying it, it was an obvious thing. It was like, you know, I mean, obviously nowhere near as extreme as something like losing a limb or something, but I mean it felt like, “Here I am, and I am no longer who I was, and now every time I, I leave the house I have to tell you about my illness.”

And that felt awful actually, because it just then brings, like, “Oh, no,” like “oh,” and on top of everybody knowing everything else about my life - and they knew my mum was dying – I [sighs], I hate that “poor me” thing, like I just, I can’t tolerate it somehow because I just, it’s not in my personality. So, I don’t mean in others, I mean in me, I don’t like it for me. I give lots of compassion and empathy through my job, I run a charity for bereaved parents so it’s not that I can’t feel for people, I feel deeply, deeply for people, but I, for me it didn’t feel right that every time I was speaking, people were like, “Oh, and how are you?” and “I’m so sorry to hear,” because it just felt like I wasn’t Nicola anymore. And I think it, the steroids really took that away for a long time, so even if I felt a bit better, it was the steroids ruled that sort of communication, almost. It was such a barrier.

 

Nicola chooses to “live in the day” with vasculitis and count her blessings. She is comforted knowing that, when she dies, she will meet her baby Theo again.

Nicola chooses to “live in the day” with vasculitis and count her blessings. She is comforted knowing that, when she dies, she will meet her baby Theo again.

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I think I touched on it with my husband when I came out the hospital, I do remember saying to him, “I could die now early, I might not have a full life.”

And I think that’s still around for me, I think I still, whether it’s accurate or not, and I don’t suppose anybody could give you a definite anyway, could they? Well, nobody can. They couldn’t give you a definite that you’re going to live for like, nobody can say, you know, even if you were well, like I couldn’t give a friend who’s got nothing a definite that she’s going to live for life so, I kind of just choose to live like that, it’s sort of around the - would this take a toll on other organs? Would this mean that when I am a certain age, I might need a transplant? Would that work? [sighs] Would I get poorly again? I don’t like thinking about that, but I choose just to think about now and I choose to live now because I’ve only got today and that’s it. I mean, I’m only, as much as anyone’s ever got is today. So, if it’s a good day today, that’s where I live in the day, and I very much live like that anyway. And I’m really good at perspective-taking over what’s important, what’s not important, and I live completely a life of abundance of gratitude and really acknowledge my blessings because I’ve had difficult times? So.

I think I can park things quite quickly and see through foggy bits to get to clarity of, “This is okay.” And, and yeah, I mean, if that should come then it will come, I just, it’s then that always leads back to my children, that’s the bit that, that’s the biggest worry, isn’t it? It’s always about your children. Although my mum felt like that when she was dying, and I was 45. And she didn’t want to leave me because I was 45, [laughs] I mean she was still; you know I was still her child, her baby, and that was the bit. She wasn’t afraid of dying because she wanted to meet my dad again, and they both always talked about being with Theo, so that gives everybody, it’s almost like he gives the comfort of dying to everybody, but yeah, she didn’t want to leave us. It’s, I think that’s just in us all as in, as parents. Mm.

 

Nicola says she would tell other people to go to support groups but “it’s not for me.”

Nicola says she would tell other people to go to support groups but “it’s not for me.”

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And I didn’t want to go to support groups because I run support groups, [laughs] and I was like, “Not a chance.” Honestly, it was like I, I couldn’t think of anything worse than speaking to everybody else who is ill at the same time and who has their stories. So, it’s a really odd thing that I totally believe in it [laughs] and I totally would be, like, telling people to do it, but it’s not for me.

But yeah, interesting, the groups for me aren’t somewhere I’d go because, again, I don’t want to be defined by it. That’s really how I feel about it. I don’t, I don’t need to speak to others to gain anything for me. If I was going, I’d probably want to be giving others hope, to be honest. It wouldn’t be, for me, I don’t need to speak to people that have got the same thing as me for me to feel better. That’s not to say if I was to get a transplant or something, I might want to, I could imagine me really wanting to do that and speak to people who have been through that experience. But yeah, that’s, I think that’s how I feel about the groups.

 

Nicola praises her GP for picking up on “smaller nuances” and acting on a “gut feeling” to do the blood test that led to her vasculitis diagnosis.

Nicola praises her GP for picking up on “smaller nuances” and acting on a “gut feeling” to do the blood test that led to her vasculitis diagnosis.

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I think it’s about really tuning in, so what, and so I’ve spoken to my GP about this since, so what he’s said struck him was that I felt a bit sick and there was, [sighs] it was like his gut feeling was telling him to take the bloods because he actually said, “I wouldn’t take bloods for what you came in with normally, for what you described. But there was something.” And then I think he also highlighted too that I was never at the doctor’s? So, you know, I guess he was suggestive of, “For you to come to the doctor’s was telling me that you really must have been feeling quite poorly and you must be feeling some, you know, extreme enough symptoms to come.”

Now, that wouldn’t be what would decide somebody to, you know, that wouldn’t be fair to be like, “Well, you’re here all the time so I’m not going to take you seriously,” I don’t mean that. But I think for him, I wasn’t using maybe strong language, I, because I was quite dismissive of what I was feeling, I was kind of like, “I’m just feeling a bit,” I mean that’s how I went in. Just like, “No, just not a hundred per cent.” But I think it’s about taking the whole picture into account, so looking at that whole holistic approach to it and really picking up on those smaller nuances that I suppose makes you think, “Hmm, maybe there’s something more here.”

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