A-Z

Jane

Age at interview: 58
Age at diagnosis: 57
Brief Outline:

Jane has ANCA associated vasculitis with stage 4 kidney disease and may need a kidney transplant. Her vasculitis was discovered after she had two cardiac arrests and was resuscitated by a stranger. It was very important to her to meet and thank him.

Background:

Jane lives with her partner. She is hoping to return to her work as a medical secretary in a few months’ time. Ethnic background: White English.

More about me...

Although she had aches, pains and tiredness, Jane had no idea she was seriously ill until she suddenly collapsed. A passer-by and paramedics saved her life. ANCA associated vasculitis had been silently damaging Jane’s kidneys, leading to two cardiac arrests and an injury to her brain due to lack of oxygen. Jane spent the next 23 weeks in hospital, returning home a few weeks before the COVID-19 lockdown in 2020.

The most important thing to Jane was finding out what had happened and who had saved her life so she could thank them. Meeting the passer-by and the paramedics and returning to the hospital with presents was emotional. Although she wouldn’t have described herself as a religious person, she feels that a guardian angel was looking over her.

Jane is very surprised by how the brain injury has changed her personality. She is less inhibited and anxious than before. She now looks forward to getting up, and everyone says she is more fun. While she is prone to losing and forgetting things, Jane finds her concentration is improving every day.

Jane says that she did well with rehabilitation and has found all healthcare professionals “absolutely wonderful.” However, she is cross that neither she nor her partner were expecting the telephone call about starting preparations for a kidney transplant. She is also surprised that she hasn’t seen a dietitian and disappointed that her doctors have said she doesn’t need to bother about diet, as she has read that it can help recovery.

To take care of herself, Jane has changed to a healthy diet, uses an exercise bike and goes for walks, and reads and does puzzles. She is looking forward to getting back to work part-time with the support of her employer. She says it is important for GPs to be aware of vasculitis and to listen to their patients. Jane says her future looks “very bright,” and she would like her story to give people hope.

 

Jane thinks there may be a number of reasons for her getting vasculitis, but she no longer blames herself.

Jane thinks there may be a number of reasons for her getting vasculitis, but she no longer blames herself.

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I did feel bad at first. I blamed myself. For not realising I was ill. But I went to work. And it must, the walk must have been just too much. I collapsed right, clutching my chest, just outside the GP surgery. It’s amazing, isn’t it? Everybody was just so shocked.

That is something that quite a few people have told me, is that they didn’t realise how ill they were.

No, it’s the silent killer, isn’t it? It is. And anyway, my auntie and my great-niece have both got rheumatoid arthritis, I think there may be a link to it, is there? Yes. So that, I think that probably what was the cause. And some unknown trigger. Like I did work too hard, they said “Jane does the work of two people.” I did push myself because, well, at school I wasn’t very clever. I know, I’m quite IT literate, but growing up I had to work hard to prove myself.

 

Jane remembers only “a couple of weeks” of what she now knows were vasculitis symptoms before she collapsed with a cardiac arrest.

Jane remembers only “a couple of weeks” of what she now knows were vasculitis symptoms before she collapsed with a cardiac arrest.

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Before you became ill, it was obviously very sudden, the heart-

Yeah, a couple of weeks or so, I remember I couldn’t get my dress off because my shoulder was stiff. And I put frozen peas on my ankles. And the girls at work said I didn’t look well. I had a stomach ache, a stomach upset, I was sick. And they said my eyes looked really weird, and they urged me to go to the doctor. I just remember, I don’t remember anything about that at all so there was nothing I could do about any of the [inaudible]. I took one day off because, because of my pains. And aches. And then went back to work the next day. But I don’t remember anything from [inaudible] until October. It’s all been wiped out.

 

Since having a cardiac arrest due to vasculitis, Jane feels she has “a guardian angel over me.”

Since having a cardiac arrest due to vasculitis, Jane feels she has “a guardian angel over me.”

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So, yes, that’s, I thanked everyone and sent them a present. Because I feel it is important to know. Who saved my life. It really is emotional.

Yeah. And you have met him now, haven’t you?

I have, yes. I met him for coffee. He’s lovely. Yeah. Yeah [emotional].

I imagine it’s emotional for him too.

Yes it was, yes. He said, because of the paramedic said he looked in deep shock. By the time they’d put the lines in the ambulance, he’d gone, obviously gone to catch his train. Yes, she said he looked very shocked indeed. I’m not surprised. In fact, he said, he told her that he’d seen me walking to the station - the funny thing is, I’ve never seen him. I don’t recognise him. Either walking to the station or at the station [laughs]. Which is very odd indeed, isn’t it? It is, yeah.

So, both of you – he had seen you before this incident

Yes, he’d seen me stumble on the bridge. The other strange thing is, I was very anti-religious, because my sister, my twin, took her own life five years ago. And I sort of had a bit of a, it may seem a bit convenient somehow, I had a bit of a religious experience. And I felt this warmth coming over me. And I believe God sent [name of bystander who gave CPR]. To save me. And I’ve bought a cross, which I wear, and am thinking about going to church. That’s a bit convenient, but I’ve just got this feeling that I’ve got a guardian angel over me, watching me all the time. I expect that’s quite normal, don’t you?

 

Jane’s vasculitis caused kidney damage. She’s had conflicting information about whether diet can help.

Jane’s vasculitis caused kidney damage. She’s had conflicting information about whether diet can help.

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Yes, of course my kidneys are badly damaged, and I’m probably going to need a transplant. I’ve started the [inaudible], so I’ve started the work-up towards the heart scans. I’ve got one more next Friday. And I’ve got a chest x-ray and the blood work and [inaudible] in November when that’s the renal clinic.

But I’m eating healthy, fruit and vegetables, water. And it’s gone up two points. And I joined the forum on Facebook for vasculitis patients, and some have had fantastic results. You know even like twelve per cent and they’re like thirty-three. One was even sixty. So, I’m not, you know, I don’t mean to, you know, my renal team have been very negative about things. About, they said you don’t need to bother about diet or exercise. Which I think anybody should do, shouldn’t they?

 

Jane has a brain injury from when she collapsed due to undiagnosed vasculitis. She had rehabilitation in the hospital gym and therapy kitchen.

Jane has a brain injury from when she collapsed due to undiagnosed vasculitis. She had rehabilitation in the hospital gym and therapy kitchen.

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Yes, I can now get out of the bath. I have to get on my knees first, and then I can get, I can pull, pull my legs over. So that was a big thing to do because I couldn’t do it. Yeah. That’s [inaudible] thing to do.

And have you got stairs and things at your flat?

Yes. Four flights of stairs [laughs]. They’re fine, fine, absolutely fine.

So, when you said you had ‘rehab’, you might not remember, I don’t know, but do you remember what the rehab involved, did it, was it physiotherapy or-

Yes. At the gym like swinging my legs and stuff and standing on tiptoes and that and I used to go to the therapy kitchen and cook breakfast and some [inaudible]. So, I could cook a meal when I came home. They were very good.

Sorry, did you say that somebody came with you when, to do a home visit?

No. But apparently they don’t come that far. So [my partner] had to take some photographs. And they gave me a wheelchair which I didn’t need. At all.

Some people have said that actually getting a wheelchair changed their lives because they were able to do things that they couldn’t do before.

Yes.

But you haven’t needed…

No. I sent it back after a few weeks. I think they were amazed at the progress I made because I didn’t walk on my own until the 21st of December when I went to the bathroom with nurses holding both my hands. By the 7th of January, I managed to walk to the meeting to decide when I was coming home.

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