Systemic Vasculitis

I talked yesterday about doing the things that I do to manage my, to manage my disease, and everything and it reminded me as well that when I developed microvascular angina and had the specialist angio as part of the clinical trial and then, you know, when they gave me the results there and then and I said, “Well,” you know, “How can you relate this to my underlying autoimmune disease” and they were like, “Well we don’t know” kind of thing, so I [laughs] so I went, I went home and back to good old Doctor Google, you know, kind of Googled, looked at the research that there had been and saw that, it was a vascular rheumatologist that I knew in London had done some research in this so I emailed him. And I got a really good practical reply from him that helped me make sense of what had happened to me and what I needed to do, and whatever, it was absolutely great. So, I printed it off and at the next appointment with my consultant I took it and I gave it to my consultant. And she said, “That’s great Lynn,” she said, “That’s actually really, really helpful” and she acted on like a couple of his, a couple of his recommendations.

So, you know, not everyone knows a vascular rheumatologist down in London, not everyone would be able to kind of Google that and not everyone has a rheumatologist that would be okay with them doing that. But to me that’s teamwork. You know, that’s collaboration, that’s me being part of the team and that’s putting me at the top of the pile. What my needs are, and what I need to, because I needed to understand what was happening to me to come to terms with what had happened to me and to know what I could do to kind of help myself and what to look out for going forward. And I managed to get to the source of information to allow me, to allow me to do that.

We’ve been thinking about it a lot here. I mean, what my wife’s currently doing is a perfect example, she’s just recently written a book on vasculitis, about vasculitis, and this book is a, what you would probably call a children’s story book. It is designed for a family audience to start those early discussions or conversations about vasculitis and maybe their grandparent or someone in the family having vasculitis and beginning to slowly bring different people in the family into the fold to talk about it, but in a way that isn’t necessarily very scary and very clinical.

And part of the, so the way that the story, the story book works is it is a story about a family and someone within the family having the condition and being written from a child’s perspective, but there is lots of information within it about what different doctors are called, what different tests need to be done for vasculitis, what different feelings and symptoms and things that can happen to people with it and how it feels, and what might be their day to day, and. She then went on to forums and then asked people, “If you were to read a book, what would you find most helpful for people to do or to know to find, to be helpful for you?” and she added little bits on that about a daughter finding out about how she could help her dad and what little things she could do, and... It was a really, I mean, she’s a great writer but it was really her ideas about how to present something in that way that I think was so novel, to create it in a way in which it wasn’t intimidating, it wasn’t scary, but allowed some information to come out that gave someone that may know nothing about it to get quite a good grasp on it.

And I think the other part about it that most people don’t really want to acknowledge is that the majority of us don’t, don’t, we don’t really know that much about things in that area generally, I mean, we might have done biology at school or some other bits, but not really at the stage where we’d really understand these things. So.

There are many, many different adults and other people that don’t really understand what this diagnosis is and what’s happening, but you’re kind of quite embarrassed to say, especially when you have doctors that are very informed and very, kind of speaking with this very kind of clever language. So the other part of the book - that was kind of quite subtle but a big part of it - is allowing adults to feel like they can be informed and learn about things in, in, in more of a gradual way, but in a way that doesn’t feel like it’s belittled or that it’s embarrassing, because it’s them reading this with their child or with children and that kind of connection between the two, to basically inform a lot of different people around this.

I’d also made a complaint to the health board as well, at some point in that year, due to all the misdiagnosis. Because obviously there was a lot of evidence there and, I was, again I was quite angry, and I needed to sort of get that anger out and also understand sort of where things went wrong. So, I’d requested all of my medical notes, so, I’m sure the postman was happy to be carrying a massive like pack about that big [gestures size] you know [smiles].

So I went through everything, obviously took me a long time to read through everything and I think there’s still some things that they’ve taken out because obviously they can take things out to [gestures quotation marks around ‘protect you’] protect you, which is obviously in my opinion is a bit bull, but you know, because obviously I know I’m not a nice patient at times, I’m not an easy patient even. And obviously I do you know, I’m curious to know what was written on those inpatient admissions when I was threatening to sort of discharge? So, and because those things were omitted from there? But there were other inpatient notes that were left in there, so. It wasn’t a case of they don’t do they don’t include those notes for any reason.

But that’s when I found out that I apparently, I had anxiety when I was sort of unwell and all this rubbish. But I did also find out that in 2011, one of the respiratory doctors, the cardiologist, he, they were sort of quite keen on sort of figuring out what was wrong, so there was like emails included between the two, sort of trying to you know, trying to figure out what was wrong, but I guess it was one of those things that, “Oh, well we don’t know what it was so we’re giving up” sort of thing.

And my GP, was you know, there was a copy of her email to the doctor from before when I was diagnosed, the one that told me I was just stressed saying that you know, “A young person shouldn’t be having all of these symptoms, there’s something wrong and I want you to find out what it is.” So, I guess that reinforced my sort of faith in, you know, in some of the GPs in the surgery you know, because before I was diagnosed I was just told things like, “Oh, you’re unfit, you’re stressed, you’re anxious,” and all of this you know, and none of that was true.

As I say, what I would, I think what I would really have appreciated was an info-, a printed information pack that basically said, “Hello newbie.” You know, “this is a whole new experience in your life, welcome, welcome to it, here’s how to get going as a kidney, as a vasculitis patient, and as a kidney patient,” you know. “Try, try this kind of diet, try eating these dishes, approach it like this” you know, and so on.

A great example of that is coffee. So, you know, coffee is a high potassium food, if you’ve got kidney problems resulting from vasculitis, one of the first things the dietitians say to you is, “No coffee,” and if you’ve been drinking coffee your whole life that’s a pain you know, your heart sinks at that. Actually, when you research it yourself, what you find out is that roasted ground coffee, like an espresso or something, is actually quite low in potassium, it’s instant coffee that’s very high. So, and if you know, like roasted ground coffee just comes in a small Nespresso size cups, like a large espresso cup. And actually, a cup of that in the morning is not going to do you any harm at all, it’s actually quite, quite low in potassium so you’re perfect, you’re perfectly okay with that.

I kind of wish I’d been given that advice rather than just “No coffee, coffee’s bad, coffee’s potassium, you can’t have it”, you know, so that makes a big difference.

I mentioned oranges you know, I was told “No citrus from now on, absolutely no citrus.” Well, I’ve researched it since and found out that there are certain forms of citrus like Satsumas and mandarins that actually are quite low in potassium. It’s oranges that, that are very, very high. I wish I knew that from the start because it does mean that every few days I can have a Satsuma, or a mandarin, and actually, the difference between a life where you never eat citrus again, and a life where you can eat something citrusy every few days, is incredible. That’s an enormous difference, emotionally that’s an enormous difference.

So that’s what I mean when I say I wish it had been presented as, you know, a series of possibilities rather than a series of rules against, which is what it was.

Aye, it’s funny, and I think it’s maybe more because I do see a respiratory specialist, you know, and I do feel that the vasculitis is my big, the big problem for me. And I do see a rheumatologist, but the appointments are usually fairly short, and you know, we don’t discuss, we don’t discuss my symptoms. It would be good to talk to somebody about my nerve problem. Should I be carrying on even though I have these, find it difficult? Should I be pushing myself or should I be resting myself more? These kinds of things, you know, I would like somebody to answer questions, but you don’t really get that.

Or is there other things that might help? I suppose that’s where maybe the OT did help, back before with that, you know, [inaudible] exercise. But the problem is still there with, with my arms. And occasionally, when I’m in bed, I have got a, you know, when my leg is still a bit tingly, I have got a – and I’ve had to, I’ve stretched my legs and kind of, you know, stretching, do a few stretches. Because my legs are a bit uncomfortable. And also, they are so cold, as well, this is the other problem I have. Especially in the winter, my legs are really cold. And my hands. If I go into the freezer, I really, I have to sometimes put some warm water in the sink and put my arms into the sink to warm them up.

I think the occupational therapists will, will – they do say, “Oh, if there’s anything,” you know, “If you want to talk to us again, get in touch,” but I think that what they will, you know, obviously say is, “This is the exercises you can do to strengthen,” but I’m, I’m thinking from the Churg-Strauss side of it, really, from the other side of it. And yes, and also [sighs] how does, how can it affect long-term, you know? You know, mentally, or, I mean, I think it can affect your brain or, and it can affect your heart or your kidneys and various parts of your body, and just a talk about these things, you know.

But even the jag [injection], even the, even the COVID jag, you know, I, my mind worked overtime with that because I thought, the way they were explaining about the vaccination works by, your, your immune system starts to fight what they’ve put in, into the jag, and I thought, “Well the steroids reduce your immune system.” And I thought, “Is it going to make me really ill?” you know, like somebody without this condition or without being immune suppressed will be strong enough to, to fight whatever the, the jag does, and I thought, “Am I going to be really ill?” But I was reassured that, you know, I’ve got to take the jag and that other people that were immune suppressed were okay, and they just, all they said was it wouldn’t, maybe wouldn’t be as, quite as effective with someone with an immune suppressed, as it would be with someone that’s not.

So, yeah, that was another little worry. I just worry about everything. And I read about everything, [rolls eyes] I Google everything now, and which maybe is, sometimes it’s a good thing, sometimes it’s a bad thing, that you shouldn’t. So, I’ve just got to put my faith in the, in the, the experts and hope that, well hopefully, hopefully this will help with whatever research they’re doing and training. So.

So, when it came to the vasculitis, then yes, trying to understand what it was all about, I found was the right thing to do. So, make myself, I think what they call an informed patient.

With the internet, that’s something you can do. Pre-internet days, this would have been impossible, quite impossible. With the internet, you can do it. You need to understand that you’ve got to be careful about what you’re looking at on the internet, you’ve got to apply judgement, “Is this sound stuff?” “Is this coming from a reputable source?” “Is it British or European or is it American?” Because things in America are different and the whole way they go about the health service affects the way they treat things, so be very careful about seeking guidance from American sources.

The, I think if you are an informed patient and you do ask questions, I think that’s helpful to the doctors because that gives them the confidence that you understand the need to follow their advice and you will do so. You won’t be one of these people who, “Oh, I forgot to take me pills yesterday and I can’t be bothered to do this exercise,” or whatever. “Oh,” you know, “There’s an appointment up for me, I can’t be bothered to go.” They could be confident you’re not going to be like that. And if people who are like that, obviously add to their own problems but they’re adding to the doctors’ and the nurses’ problems as well, which is wrong.

Obviously, everything, every medication or every illness affects different people in different ways, but, yeah, I mean I, nobody said to me that, “Your hair’s going to start falling out,” and in the end I didn’t have very much left attached to my head and therefore I just had it all taken off and then it re-grew as the steroids became less and less.

The other thing actually I forgot to tell you is that, when I was having, when I was first diagnosed and they were going to give me cyclophosphamide, which is quite a bad, as in how it can affect you drug, they, what they did tell me was that, “It might affect your fertility,” but nine times out, nine times out of ten I think, I think it would affect most ladies’ fertility, but they, that’s all they said to me, “It might affect your fertility, you may not have children,” and that was it, you know.

And then obviously you, I read up on, I read up on these things, because I think the internet had not been that popular until then, so although I read up on the net, what side effects or not can be had with this drug, and I had the leaflet from the tablets, it was, I think that they could’ve told us, told me a little bit more and explained to me a little bit more about how cyclophosphamide actually works, and why my hair was dropping out, because that, that sort of stuff, they, they don’t actually, they just come; say, “This is what we need to do but you might have this problem, you may not have children. Is that okay?” Like you know, you, it doesn’t even give you time to think about it and you have to say “Yes” or “No.” You know.

So, I think that is a definite thing that doctors and clinicians that they need to be informed of so that they can help inform their patients.

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?