A-Z

Sharon

Age at interview: 49
Age at diagnosis: 43
Brief Outline:

Sharon has microscopic polyangiitis (MPA) PR3, a type of ANCA associated vasculitis. This affected her kidneys badly, and she has had a kidney transplant. She says she can do the things she enjoys by planning carefully and always being ready to adapt.

Background:

Sharon worked full-time in early years education. She hoped to return but ill-health has made this impossible, and she resigned three months ago. Sharon is married with three grown-up children. Ethnic background: White Scottish.

More about me...

In 2011, Sharon increasingly felt off-colour and had lost her zest for life. She had symptoms which she describes as vague and difficult to pinpoint – a crusty nose, ear irritation like a hot poker, aches, tiredness, and taking longer to cycle to work. In 2013, blood test results led to a renal (kidney) referral. Initially doctors thought she might have lupus, but a kidney biopsy identified the problem as microscopic polyangiitis (MPA) PR3, a type of ANCA associated vasculitis.

The diagnosis came with a treatment plan, and the renal team were optimistic that chemotherapy and steroids would bring the vasculitis into remission. Unfortunately, Sharon’s kidneys did not recover well, and she got pneumonia and E. coli infections. Simple tasks, even making a cup of tea, left her exhausted. Sharon remembers resting all day and setting an alarm so she could “put the face on” just before her family came home.

At first, Sharon had haemodialysis in hospital three times a week then, when she was well enough, moved on to peritoneal dialysis, which she could do at home. Although better for her, Sharon feels home dialysis was hard on her family, as the problem was now staring them in the face. She talks about the guilt she feels for what her family – mum, dad, husband, daughters – have been through, as well as her gratitude for all they have been willing to do to support her.

A kidney transplant became an option once Sharon’s vasculitis remained in remission. On three occasions, problems were identified with donor kidneys at the last minute. Finally, a pooled match was found. This meant that she received a kidney from a living donor and, in return, her husband donated a kidney to someone else on the list.

Sharon is full of praise for her renal team. In addition to treating her as a whole person, she says they attend to detail, respond quickly to queries, always have a plan, and “make the best toast in the world.” Sharon feels that the consultant, nurses, auxiliaries, receptionist and domestics all have a real desire to care for patients and their families. She has also found physiotherapy excellent and does her home practice daily.

Sharon recognises that it is challenging for GPs to identify vasculitis when it is so rare. However, she now knows that a rash six months before she was referred to the renal team was a classic sign of vasculitis, so is keen to raise awareness and help earlier diagnosis.

Although she looks well, Sharon says her limitations are obvious when people spend time with her. She manages the uncertainty of two life-limiting conditions by always having plans A, B, C and D and being prepared to adapt, and finds her patient support group helpful for exchanging ideas. As she doesn’t want to be defined by her medical condition, she and her husband have taken a decision to manage with less money coming in, treasure their time together, and have fun.

 

The initially “vague” symptoms of vasculitis made Sharon wonder if it was just her age.

The initially “vague” symptoms of vasculitis made Sharon wonder if it was just her age.

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So that was – I’ll say that was the start of it. But the symptoms were so vague that it was, it’s difficult to pinpoint. You were tired, which was fair enough. The joints were very achy, very sore. But I thought, “Well, maybe, you know, I’ve turned 40, maybe, maybe what happens when you get older.” [Laughs]. You get a bit slower; you get a bit achy, and things weren’t, you know, coming as naturally as before you would think, I used to cycle to work and I noticed that my time was getting slower and slower. You were thinking, “Hmm, that’s not quite,” you know, but you did a day’s work, and you came home. And you were so tired, you just thought, [shakes head] och, dinner and bed, I’ll be better by the weekend.

And because of Early Years and school terms, it’s never too long to the next holiday? So, you thought, “Get to the end of the term, have a break and I’ll go back, and I’ll feel more like myself,” but it didn’t, it just kept on accumulating.

Crustiness around the nose, that was one of the signs which I now know, and that went on for ages, it was just like, you just had this constant nasal drip and redness and soreness. I have an ear irritation, which I can only describe as a hot poker goes in and out your ear. It’s most annoying. And then a sensation down your jaw into your gums and your teeth.

But at that stage, that’s probably all the tiny little bits and pieces that, that I was trying to explain to the GPs.

 

Sharon’s GP thought her rash was an allergy. She will “never know” if her kidneys could have been saved if they had recognised it as vasculitis.

Sharon’s GP thought her rash was an allergy. She will “never know” if her kidneys could have been saved if they had recognised it as vasculitis.

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Yeah. I think [sighs] the one, the one GP visit that sticks in my head was when I developed a vasculitis rash, which was really quite extreme. That was in the October, I wasn’t diagnosed until the April. And this rash was like nothing I’ve never, ever experienced, from the tips of my toes up to about my midriff, and so fiery, so hot, so raised. And try as you might, you couldn’t not scratch it, so I had, you know, the scratch marks everywhere. And the GP that I saw that day thought, possibly, allergic to the washing machine powder, you know? “And if it doesn’t settle, come, come back and see me.” Which, which I obviously accepted, because I came away and waited a week to see if it, if it did settle. It took longer than the week but I mean, it did settle eventually, but I just wonder with that flare-up was the first extreme flare, that there was anything, everything else was so vague, whereas the rash I thought, “Hmm,” again, with hindsight, now I know exactly what it looks like and if only the GP knew exactly what it looked like, would that six months have made a huge difference? Would that have been a point where my kidneys were saveable? It’s something that we’ll never know, so in that respect, there’s no point in dwelling on it because it’s been, and it’s gone. But again, that’s why raising the awareness is so important.

 

Sharon is “doing just grand” with a kidney transplant, but it was an emotional process for all the family.

Sharon is “doing just grand” with a kidney transplant, but it was an emotional process for all the family.

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We got to talking about transplants and things because the vasculitis stayed in remission, which was fabulous. So that meant that I was then a candidate for a transplant, and they do this paired pooling for donations, that’s couples can go forward. You don’t have to be a couple; could be brother, sister - friends, whatever, but you go into a database and if a couple are looking for a match with somebody else, so the way ours worked was, David volunteered to donate a kidney to somebody, and there would be somebody somewhere else in the UK that would donate to me. So, we signed up for that. Every three months they would run the database to see if you got a match. Nothing was happening. So, we did that for over a year, but we never got a match, so. But we stayed on the database.

But by that point, my mum decided that she would donate a kidney to me. She’d previously ruled herself out, she thought she was too old, but she was fit and healthy, passed all the tests, all the screening, because there’s, it’s very intrusive to make sure that you’re fit enough to donate a kidney. So, we went through, did all that, she was a perfect match, which is not always the case with your parents, but she was, so that was fab. So, we got the go-ahead for a transplant. Yeah.

It was just, like, the excitement levels, you know, this is going to be good. Obviously, there were risks, but, okay, we’ll go for it. So we went to the hospital, mum and I, they took her down for surgery and when they tried to remove the kidney, they found a tumour, a gland? On her adrenal, adrenal gland, so it was too risky to remove her kidney, so she had to come back up to ward and the transplant was, was cancelled. We were all devastated, obviously, and the focus was then on mum. Did she have a health issue? What, what had they discovered? So that all went under investigation, but she’s grand, [smiles] she’s good. But it took a wee while to suss all that out.

The consultants then spoke to me about possibly a deceased donor would be a good option, considering where we’d got to, so one night we got a phone call at three or four in the morning to say that there was a kidney. We went through, we waited, they decided after looking at the kidney a bit closer that they thought there possibly could be a cancer contamination, so they didn’t want to, to give me that one. Again, we’re devastated and come home.

A month later, we get another phone call, we go back to hospital, this one’s looking fabulous. Yeah, there’s been two kidneys, the surgeon’s already removed one to a patient in another room, it’s working perfectly, “You’ll be next, go down in two hours.” So, I go down to surgery, go in to get your, you know, put to sleep with the anaesthetic, and they decide that there is actually a problem with that kidney, so. It was cancelled at the very last second. We’re back up to the ward, home again, more devastation. The emotions are just everywhere for everyone.

We then get back to – well, a month later, they do the paired pooling match, David comes home from work, and we’re all sitting around the dinner table, and he announces that he’s had a phone call from the transplant coordinator to say that they have found us a match. At which point I am furious. I just do not have the energy to go through that again, which is not the reaction that [laughs], that I thought I would have. But. But we went. We did it. David donated his kidney. It went off in an ambulance down the M6 somewhere, mine was on route to me, and that was the 22nd, 21st of February 2017. And I’m doing just grand. [smiles and nods]

 

With vasculitis, Sharon finds a conflict between the things she wants to do and the effort it will take.

With vasculitis, Sharon finds a conflict between the things she wants to do and the effort it will take.

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I think the only part that I’ve got which was my last thoughts that I’ve popped down there, was that you’re, you’re continually adapting to whatever the next day brings and planning and processing is, is probably the key to that, which is what makes things work. It’s one of the sorts of cogs in the wheel. The negative of that is that sometimes your brain can’t switch off because you know that you have to plan things really quite specifically, but also knowing that whatever plan you’ve made, something’s going to crash into it and that plan’s going to go haywire, so you’re going to have to go plan B and then C and then D, and then just keep working your way through? So even though you’ve planned it so well in your head to prepare for the event, you have to, also have to have flexibility to know that it might not well go to plan, you know, so.

So, you’re constantly adapting, all the time, which, depending on your levels of fatigue, can sometimes just seem more effort than it’s worth. You think, “Hmm. Do I really want to go to my niece’s birthday barbeque?” because there’s have to be this whole chain of events to get to that. But you really want to go to your niece’s barbeque, because she’s your niece and you love her to bits. But what will come along in between you starting your planning, your preparation - which could be the week before – and the actual day of the event. So, you can have that conflict in your brain sometimes. To get to that point.

 

Sharon wants to be independent in spite of vasculitis, but “nip to the shop” can be too much.

Sharon wants to be independent in spite of vasculitis, but “nip to the shop” can be too much.

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And you mentioned earlier about driving the minibus. Are you restricted for driving now, or is that okay?

No, I can, I mean, I still have my licence and so I’ve declared – well, I’ve not had to declare to DVLA because there, there’s not a box to be ticked on that, but I do limit it. I am the passenger unless everybody else has been to an event and I’m the only person – because I don’t drink, so I’m then the nominated driver, but it’s few and far between. And, and some days that could be absolutely grand, or even, I might think, “Oh, I’ll nip to the shop and get the shopping,” or whatever, to do the supermarket. And I can drive there, I can push the trolley, and I’ll be halfway around the shop, and then trying to pick up the next carton of milk and it’s just, it’s a step too far, you know? By that point, the joints have gone or the fatigue’s set in, or the whatever. And then, then it’s an issue to, to continue with the shop and drive home, so my family have now got to the point where it’s, “Just don’t bother, mum. It’s more hassle than it’s worth [laughs]. We’ll just do it.” Which is not pleasant because you want to be independent. But. It’s probably less of an intrusion in their lives to pop and get some shopping, than to say, for me to phone from the town and say, “Can somebody come and get me?”

 

Sharon has vasculitis and a kidney transplant but couldn’t get medical retirement. She now lives with “restricted finance.”

Sharon has vasculitis and a kidney transplant but couldn’t get medical retirement. She now lives with “restricted finance.”

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And I think David and I had decided by that point that careers weren’t high up on our list. If we could get by, if we could get by financially with, you know, part-time or supply or something, that would be fine. We were more concerned about living our lives rather than working the nine ‘til five previously. So, I resigned. At that point. Asking to go on supply, to give me that option for a little bit of money coming in, every month. But I did that because my personal reason, because I felt it was unfair on my colleagues, really. And I didn’t have the, I didn’t have the energy or the desire to go back and fight [my employer] anymore, because we’d already been through all that with occupational health and applying for medical retirement and all those types of things.

Because I had lots – I have, I’ve got quite a few letters from various occupational health assessment people to say that I have two life-limiting conditions that will cause uncertainty in the future and going forward, but that’s not a good enough classification for early release of your pension. So, and having sort of fought that battle, taken advice from MPs, MSPs, union representatives. Again, David and I, we just made the decision that we’ll just walk away from that one, we can concentrate our energies on keeping fit, keeping well and enjoying life. With restricted finance. It was a decision that we made.

 

Sharon dyed her hair pink to “give them something different to talk about” than the effects of her vasculitis. If asked, she just says “I’m fine.”

Sharon dyed her hair pink to “give them something different to talk about” than the effects of her vasculitis. If asked, she just says “I’m fine.”

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There’s also the part that you don’t want to be defined by your medical conditions. I remember after one failed transplant, thinking, “Oh, I can’t do that, I can’t go to the Co-op when everybody’s giving me the ‘awww’ face.” You know, “What a shame.” I thought, I went and got my hair dyed bright pink and I thought, “That’ll give them something different to talk about when I go in.” [Laughs]. I’m like, now it’ll be, “Oh, that poor lassie never got her transplant, look what she’s done to her hair.” [Laughs]. Just, it’s people’s perception of you. You are still you.

How do you explain it to other people?

I don’t. If anybody ever asks, I just say I’m fine and that is the stock answer to everybody. People - to give them their due – there’s a percentage of people who are interested and would like to know more. But mainly when people ask how you are, they, they don’t want details, you know, they’re quite happy with “I’m fine” and move it on. I’ve got close-close friends who’ll dig deeper than the “What does, what does ‘fine’ mean today?” you know? We have different acronyms for the F, the I, the N and the E, depending on [laughs] where we’re at. So yeah, but for the majority of people, I don’t, I don’t even try to. I think it would be too complex, too time-consuming, and it’s not something I really want to dwell on.

 

Sharon is an only child. When she was ill with vasculitis, her parents were “devoted” to her recovery.

Sharon is an only child. When she was ill with vasculitis, her parents were “devoted” to her recovery.

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It was hard going for them. I mean, I’m an only child so I think, I can’t imagine, they put all their, all their love into me, and for them to come and to visit and just, to lie in my hospital bed and to see the pain in their faces, is just awful, absolutely awful. Because I couldn’t see what they were seeing, you know? They could see me hooked up to all the machines and the oxygen and things, and I would be very sleepy so I would only have fleeting moments of actually being able to focus and see them. But what I could see just saddened my soul, you know? The, the pain I was putting them through was just, yeah. And then they were just devoted to my recovery. David was still working, the girls were still doing their things, my mum and dad are both retired, so they were there for me 24-7, constant care and attention. Watching my every move, I was scrutinised [smiles]. So, yeah. And friends, you know, and extended family. But my mum and dad, they were just immense.

 

Sharon’s vasculitis team are “on the ball,” with “good leadership” and “such a desire to care for you.”

Sharon’s vasculitis team are “on the ball,” with “good leadership” and “such a desire to care for you.”

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My renal team are fabulous. I cannot praise them highly enough, and their personal support just goes beyond belief. You know, their dedication to you as a person is absolutely wonderful, just, you are, you are treated as the whole person. Their patient list must be huge. You know, when you arrive at clinic, there are 20-odd people, every day, in their clinics, but they have such a retention and such an interest in you all. They remembered the smallest details. You know. “Oh, it can only be six wee- six months until your daughter’s wedding now, how are the preparations going along?” “How was your trip to Bucharest?” They have that knowledge of you, as well as the scrutiny over your medical facts, and they are just so on the ball, they are wonderful. Absolutely wonderful. From everywhere, from your consultant, through the nurses, the auxiliaries, the receptionists, the domestics. They make the best toast in the world, they’re all great. They’re all fabulous.

Where does that come from, do you think?

For the renal team?

How is it that they manage to do that?

That’s a great question. What is that ethos that manages to do that for them all? You would say it was leadership, but then it’s down to individual personalities as well. So, I do believe that they do have good leadership. But they also have such a desire to care for you. They also must be happy in their work because you get that vibe from them. I’m not saying that they don’t have their moments, because I’ve seen them all have a little, you know, hmm at each other. But that’s never the feeling that you leave with. I always feel supported, and I always feel that they have a plan. It changes regularly, [laughs] but they always have a plan. “We’re going to do this; this is the way it’s going to be.” It’s explained to you in whatever detail you want – I like detail, other people just maybe don’t want to know quite as much. But they do that, and they take the time, they explain it again to my husband when he comes in. When my daughters appear four or five hours later, they come back, and they explain it again. They include everybody.

 

Sharon can understand why vasculitis wasn’t the “first go-to” for her GP practice but there was a “recurring theme” of “classic symptoms.”

Sharon can understand why vasculitis wasn’t the “first go-to” for her GP practice but there was a “recurring theme” of “classic symptoms.”

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[Sighs] I’m unsure about the primary healthcare, like your GP service. Because obviously, with hindsight, I can look back. And the amount of visits that I had between 2011, I don’t know the numbers, until I got referred to the nephrology department and the renal department. There was a recurring theme there, you know? Tired all the time, achy joints, slight trace of protein. Headaches, fatigue, just - but very non-descript. So, on one hand, I can understand that the GPs couldn’t pinpoint anything, but on the other hand, that’s also, I now know, classic symptoms of vasculitis.

But I think for a practice our size, we’re quite a small village, and the way that they work out the ratios, the GP would probably only see one vasculitis case every 15 years. So. I can completely understand why that wasn’t their first go-to, but that’s why it’s so important for the work that you’re doing, that it now becomes out there. In the mainstream of what they’re thinking. Because had we caught it - possibly - earlier, then the roller coaster might not have gone on for so long, with all my medical issues.

Because at that point, which was April 2013, even renal were quietly confident that this was damage that could be reversed, that they could get the ANCA under control, and that things were, were looking a lot more positive. But sadly, it wasn’t to be. But then there’s the flipside of that that I’m - the GP might never have referred me to renal, and you could, I could just have been tottered along for the full time, until something catastrophic may have happened.

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