Gail

Age at interview: 52

Age at diagnosis: 50

Brief Outline:

Gail has eosinophilic granulomatosis with polyangiitis (EGPA), an ANCA associated vasculitis previously known as Churg-Strauss syndrome. She’d like services to take a team approach when people with unexplained symptoms aren’t responding to treatment.  

Background:

Gail is medically retired from her work as a health visitor. She has just started a part-time job in social support. Gail is divorced with two grown-up daughters and is looking forward to the arrival of a grandchild. Ethnic background: White British.

More about me...

Gail worked in the NHS for 35 years, most recently as a health visitor. She feels devastated that, when she became ill herself, the system appeared to let her down.

Gail was healthy until 2013 when she began to feel lethargic and unwell, with aches and pains. This continued with sinus and breathing problems along with rashes. Gail had many visits to her GP and was also referred to respiratory and ear, nose and throat specialties. She had polyps in her nose removed twice and was treated with repeated courses of antibiotics and inhalers. By 2017, Gail often had no voice. She was getting dirty, blood-streaked discharges from her nose and ears as well as stomach cramps.

Gail’s colleagues and friends grew increasingly worried, as did a nurse in her general practice. Gail took photographs and samples to her appointments as evidence of what was happening but felt “poo-poohed” by her GP and consultants. She recalls wondering why they seemed not to be talking to each other or asking why her symptoms were increasing and getting worse, even with treatment. Gail says that by this time she felt very scared and on her own.

Early in 2018, Gail developed numb toes and feet, and was passing blood from her bottom. She was unable to walk or drive or feel things normally, and her balance was affected. Her eyelid drooped and she was in “horrific” pain. Doctors suspected a condition called Guillain-Barré syndrome and she had a lumbar puncture. However, the very high eosinophil count in her blood was then put together with other markers; this indicated she may have eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA associated vasculitis previously known as Churg-Strauss syndrome.

Once Gail’s vasculitis had been identified, she came under the care of a vasculitis specialist whom she can contact by text at any time and with whom she feels very secure. She has responded well to immunosuppressive treatment, in particular rituximab, but wonders if she will ever be able to lose the 5 stones she gained in weight through high dose steroids.

Gail was previously fit and loved her work. She says she tries not to dwell on how life might have been different had she been listened to earlier. She still struggles with walking but has mobility scooters, a stairlift and an adapted car. She uses her treadmill every day, volunteers with a victim support charity, and recently started a part-time job offering social support to vulnerable people. Gail is also looking forward to the arrival of her first grandchild and is feeling optimistic.

What Gail most wants is for other people to be spared the pain, fear and life-altering consequences of unrecognised vasculitis. Having seen as a health visitor the positive impacts of a programme that gets a team around every child where there is a concern, she believes this approach would also be helpful in adult services.

Gail’s vasculitis symptoms started subtly. She felt scared as they grew in number, intensity and speed.

I had had symptoms of my vasculitis for a long time, but nobody had actually diagnosed anything at that point so, I found that I was becoming more lethargic, I found that, you know, I was getting some aches and pains and just started to really feel unwell, didn’t know what it was but, and that lasted for a number of years and very gradually, and it was very subtle, over the years I just started to get worse and worse .

And the last year, so from about, 2017 over to eighteen, I sort of, maybe even just before that actually, I started to really have significant symptoms. I was having lots of sinus problems, in fact that was a few years before that as well, sorry, sinus problems, asthma, occasional rashes that would disappear.

And then the, at the very end, the last year before 2018, the year of 2017, I was severely ill through that year. My colleagues were worried about me, my family obviously was worried about me, my voice would go, I couldn’t talk, I would have severe sinus problems, I was coughing up a terrible, terrible mucus discharge, really dirty, and blood streaked, I had pus pouring out of my ears, I would wake up in the morning and my whole sides of my head would be covered and the bed.

And then in the December of, 2017 I, this, I had just got to the stage where I was so ill and, I remember I had, well in fact before, just before that, I had gone to the doctor again and I had told her my symptoms, again going from head to toe, I had lots of different things going on, stomach ache you know, even going to the toilet was difficult, and I just said, “This seems to be a multi-system thing that’s happening to me because it’s not just my sinuses, it’s not just my respiratory, there seems to be much more,” and, she was writing things down. And I just remember saying, “And I have horrific cramps in my legs, my lower calves, absolutely horrific cramps,” and she banged her pen down on the table, looked at me and said, “Is there anything right with you?” And I couldn’t believe it. I just, I remember looking at her and I didn’t say a word and at that point I, I felt so scared because I felt as though, “Well I’m on my own, nobody really gets this, nobody’s listening to me,” you know?

And at that point I ended up, I had passed blood as well and I just felt really scared. I remember thinking - and this sounds really dramatic - but I remember thinking to myself, “You know, I’m dying. I know I am; I know I’m dying,” not just saying that, it was scary saying it, “And nobody believes me, nobody gets it.”

And so after Christmas, I woke up on the fifth of January, to go to work, and I had three numb toes on my right foot, and I thought it was odd, but I just thought I’d been lying the wrong way or, you know, there was a bit of pins and needles type thing, but there were just these three numb toes, and I remember saying to my colleague, “You know I’ve got three numb toes,” and she made a joke about, “Oh, no, something else,” because it was a standing joke, I was joking about it as well as it being serious, you know?

And then, the following day I woke up and half my right foot was numb and the toes on my left foot were starting to go numb and I, I thought, “This is, something’s wrong here, this can’t be right,” and I went into work and I said to one of my colleagues, “Do you know, you’re not going to believe this, I’m going to have to go back to the doctor because I’ve got this,” and they’re say, they were all sort of saying, “Numb toes? Numb feet?” and I’m saying, “I have, I’ve got numb feet, it’s really strange.”

And I think it was the following day when I woke up and it had, it had moved, and I knew this thing was moving, because by this point it was this foot I think [points to right foot] and then half way up my left foot and I was walking with a limp and, you know, really, I could, I could still feel it in, in my right foot but not the way it was.

As soon as Gail’s vasculitis (“Churg”) was diagnosed, she noticed “there was no kind of hanging about” in getting the treatment organised.

Well, I think that what, as soon as I was diagnosed, people took everything seriously and, so therefore it was, the treatment was, it was all done on a very tight, it was all done very fast and there was no kind of hanging about and things, it was all [snaps fingers] straightway.

So, I felt the minute I was diagnosed that the treatment was there and excellent and the, the, I saw more consultants and registrars and SHOs than I think I even saw in my career, you know. At times there would be seven, eight, nine in the room and they would be asking me different questions and, “Do you mind if he does an examination on you?” and all this kind of thing just purely because they probably will never see Churg again. And I was, “Yeah, that’s fine.”

So immediately you kind of knew that they had diagnosed this as something really serious, and really rare, but that there was treatment for, and I really just feel as though the treatment was great.

Gail went to talk to the consultant that she felt had missed opportunities to diagnose her vasculitis (“Churg-Strauss”).

So, I then, I received, it was months later I received an appointment, probably my yearly appointment to go back to see my consultant, my ENT consultant, that’s what I’m trying to say, my ENT consultant, and I wasn’t going to go because at this point I was under [my vasculitis consultant] and there was no reason for me to go but I thought, “I’m going,” you know. I went in to see him, it wasn’t to get any treatment, but I just wanted to say to him you know, “You missed this.”

So I went in and, he didn’t look at me, he had his head down, he was actually very shrunken shoulders, almost like a wee boy, really, he really was, and he, he kind of looked up and said, “Hi Gail, how, how can we, you know, how have you been?” and I said, “I haven’t come here for any treatment or to discuss anything,” I says, “I just want you to know that you missed this.” I said, “Obviously you know I’ve got Churg-Strauss,” he said, “Yeah, I heard you had,” and I said, “And I’ve been told that you missed this, because one of the symptoms is severe sinus, problems, polyps et cetera,” I says, “And I had, I’ve seen you for two years and never, it’s never been any different, you just kept giving me antibiotics or ‘Oh, well we need another surgery’, even although the second surgery,” I said to him, “You said to me ‘I can’t believe these polyps are back and worse than ever’ then,” because I was so blocked, I just, the congestion was horrific.

And he said, and I said that to him, I said, “At that point, okay, the first time, and okay, you know, antibiotics et cetera because you know I’ve got asthma and you know I’ve got respiratory,” but I said, “At that point where you said to me, ‘I can’t understand, I don’t know why’,” and he says, “Polyps can grow back, but so quickly,”, and he said, “You’re going to have to have another surgery,” and I said, “That’s the point I think where you should’ve went, ‘Hang on a minute, what’s going on? Is there anything else going on?’” and I told him that. And he said to me, “I’ve never heard of this.” And I said to him, “Well I understand that and it’s extremely rare and, you know, maybe you haven’t heard of it but there’s got to come a point where you’re seeing a service user or a patient where you think, you’re looking at the bigger picture thinking, ‘What’s going on here? Why is she coming back? Why is he coming back with these symptoms?’”

After reducing her mycophenolate dose as agreed, Gail’s vasculitis (“Churg”) has flared. She wasn’t able to discuss this with her usual consultant and is now unsure what to do.

So maybe again that’s why, because when I was at the clinic, I said to the consultant that I spoke to, I said, “Look, obviously my, I’m wheezing a bit more and I’m still getting the redness at night,” that’s actually new since coming off the mycophenolate a bit as well, my feet go, my legs and my feet go scarlet, which is obviously the vasculitis rash. Respiratory, slight popping, slight, just slight changes to the, to my ears and sinuses.

So I said to him…

“So all I’m really needing to know at the minute is if, because I’m having these symptoms, it’s not showing, my blood results have gone up a bit but not, nothing to worry about,” so I said, “So if my blood results are not showing any great change but I’m having these,” and actually since seeing him [laughs] it’s got a bit worse, my wheezing at times, but it’s no bad today, which is good. But I say, “I’m trying to figure out if that means that Churg is active or if it’s just going to be symptoms that I’m going to have,” and he said, “No, it’s active,” he said, “It is active,” so.

And that, when I came away from that I thought, “Right, it’s active,” so it’s a bit, again, it’s a bit, scary's maybe too big a word, but it’s a bit of a concern because you think to yourself, “It’s there again,” you know, and should I allow it to, to be a bit active or should I say to [my usual vasculitis consultant], “Look, I’m actually a bit concerned about this,” and for him to then say, because I know he would say, “Let’s go back up the mycophenolate again,” and I would feel great again, I know I would because I did before, well I’m saying I know I would, I hope I would [laughs].

Gail felt a turning point in living with vasculitis, so decided to persevere with her treadmill. Although disappointed she isn’t losing weight, she feels “more like me again.”

And so, at the turn of the year I just felt, I felt more able to kind of do things. I’ve had the treadmill for a long time, my sister gave me it after this happened, and I have tried to do it on the really low setting and I just couldn’t do it, really sore and tight and pounding and just, just a difficult thing to describe I suppose.

But at the turn of the year I thought, “Right, I’m going to really try and persevere, even although I know it’s uncomfortable, if I could just get through that,” and it, it took a long time to build up to this half hour, and I have got the rails that I can lean on or hold on, in fact I was bruised because [laughs] I was trying to do a bit of this [mimes moving arms on treadmill], you know, and I was really wobbling so I was kind of trying to keep a centre position, but with wobbling I was battering off the sides so I had these bruises right up my arms so I thought maybe that’s not going to work, so I do try and just gently rest on, I hold on to one and I get this arm [laughs] going and I hold on to the other.

But I do 30 minutes now and I’m just so happy, I feel great when I come off it, you know, and I have noticed a real difference in my calves, and I think, I just think, lockdown probably did help with it as well though because I was in all the time, you know, there was lots of different things I was trying to do, I didn’t want to sit about, I did lots to the house as we, I’m sure we all did, clear out things and kept myself busy with, with lots of different things. But I did persevere with the treadmill a bit more than, I just love it now, I really do, I feel so much healthier coming off it.

I am a bit disappointed that the weight’s not coming off, that’s something that I really thought would happen, I just thought well it’s, if you’re doing more exercise, burning more calories, surely the weight would come off and it just isn’t. It hasn’t moved at all, it hasn’t budged, so, that’s the only really downside.

But I just feel much better in myself, feel, I feel back, well more, it’s funny because I do feel more like me again. It’s taken a long time to get back to that, you know, but, and I do feel more like me. Yeah. Yeah. I feel more, it’s funny, I can’t really explain it but, you know, just back to me again.

In the past Gail had a broken leg. She now tells people that having nerve damage from vasculitis is like walking with your legs in two thick, hard casts.

My friend that broke her ankle, [laughs] when she got in touch with me the next day, we were talking about it, me having this and her having a broken leg, and I said to her, “Do you know,” I said, “The way I can kind of,” I said, “If you had both your feet and legs in casts, thick, you know, hard casts,” - stookies they used to be called - “And then you walked on them. That’s how I am. I can’t feel the ground, but I know it’s there.” It’s like having a stookie on, you can’t feel the ground, but you know it’s there. If you kick something you can’t feel it but you’re aware of it and then sometimes these nerves obviously fire and you get this kind of, it’s almost like an electric shock feeling.

And so, when I was talking to her about it, she says, “Do you know, it’s funny having this now because I kind of get what you’ve been on about when you mention it?” Because it’s so difficult to explain to someone that you, because I had people say, “Well how can you feel, how do you know you’re walking?” And I say, “Well because I know it’s there.” My balance isn’t, because I can’t, but it’s like with stookies, you don’t, your balance isn’t always the way it is, is it, great with them on.

But it’s probably the best way you can actually, because I’ve broke my leg before so I kind of know, but it’s probably the best way to try and give a description of it is that you do know the ground’s there, but you just can’t feel it, and of course that affects your balance and, yeah, it’s a bit odd.

Gail will soon have a granddaughter. She wants to be “a huge part” of her life in spite of vasculitis.

So, and I’ve got a wee granddaughter coming on the second of November so, [my other daughter’s] 31 weeks today. So that’s really exciting, you know, and, things like before how would I have managed, how would I have managed having her because obviously I want her to be, I mean my mum was a huge part of my daughters’ life, a massive part of my daughters’ life, and I want to be that person, you know, I want to do that as well, but how do you do that when you have got a disability? But and I think people have thought that, you know.

Who was it said, somebody said to me, “How would you get down the stairs with her?” and I said, “Well I’d carry her [laughs] on my stair lift, you know, when she gets a bit older, I’ll sit her on my knee.” And there is maybe plans for the future to get a bungalow, I’m thinking of maybe selling and buying a bungalow because that would be easier for everybody in the long run.

But things like there’s wee cribs that you can get and you can actually fold them so they, I could carry that down with the wee one, and. So, there’s lots of positives that, I can’t wait to get the pram because, I’m fine if I’m pushing something, see if I’m in a supermarket or anywhere I always get a trolley and I put my stick in the trolley, I’m fine, as long as I’m balanced, you know?

Yeah, so I can’t, and that’s I think what’s, I tried, although it was really painful, but I tried to make me concentrate more on the treadmill to try and build that muscle up in my legs, so that I can go a bit further, you know, walking wise and it’s just so exciting. But, but there’s lots of positives out there and I don’t, we don’t think of it, I don’t think the girls do and their partners don’t, you know, I think we’re all just kind of this is me now, it’s quite...

After a difficult time getting diagnosed, Gail felt “secure” the minute she met her vasculitis consultant.

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.

For Gail, moving forward with vasculitis is about starting “to like who you are” and noticing “tiny achievements” that matter.

But for me and maybe for others that, that are, in this, in a similar situation, I think it’s really positive just to, or really important just to know, to stay positive, to get back to whatever your normality is, you know. You won’t ever forget who you were but you, you kind of start to like who you are because you kind of move forward and you do get better and even if it’s not, I mean they can be, it can be tiny improvements, but they matter you know, it can be tiny achievements that you think, “God, I never did that before,” and it can be small things but they all matter because they obviously are putting you going in the right direction. And if you’re not going in the right direction then that’s when, you know, you’d have to sort of say to [my vasculitis consultant] or whoever, and they’re the ones that help you out, but.

No, I think that’s the two main things for me, is that, is for the person going through the condition to realise that it’s not the end of the world and that yes, it’s a horrible thing that we’ve, you know, a horrible hand we’ve been dealt but, there are people worse off and we just need to get on with it and that’s, you know, we’re alive and, if you can move on then move on.