Salma

Age at interview: 51

Age at diagnosis: 33

Brief Outline:

Salma has granulomatosis with polyangiitis (GPA), an ANCA associated vasculitis. Since being diagnosed, she has developed other health problems including steroid-induced diabetes, chronic kidney disease, fibromyalgia and high blood pressure.

Background:

Salma has been medically retired for 15 years from her job as a hospital administrator. Her primary language is English, but she uses Gujarati with her husband. Ethnic background: Anglo-Indian.

More about me...

From August 2003, Salma had felt under the weather, with constant colds. In the December her GP suggested vitamins. Salma then developed sinusitis and chest infections, which didn’t get better with antibiotics. More symptoms appeared, including a urine infection, joint and muscle pain, and bloodshot eyes. Salma also temporarily lost hearing in her left ear and coughed up blood.

Salma says that, by January, she was very poorly, and her GP was worried. Following blood tests and x-rays, she was admitted to hospital. By the next morning Salma had learnt that she had vasculitis but didn’t know what this was. She was moved to another hospital with a renal ward so she could have a kidney biopsy and begin cyclophosphamide infusions and steroid treatment to suppress her immune system.

Salma has granulomatosis with polyangiitis (GPA), a type of ANCA associated vasculitis. By the time she was in hospital it had affected her lungs and kidneys. She couldn’t imagine how this had happened to her and felt really frightened. Unfortunately, Salma’s kidneys did not recover with the initial treatment, so she spent a month in hospital having plasma exchanges to replace the plasma in her blood with a substitute. She began to feel better but was still shaky, couldn’t walk far, and struggled with breathing.

A phased return to work was complicated by an episode of shingles and Salma found that she was too tired to complete her work or do anything outside it. With support from her consultant, trades union and occupational health department, she was medically retired in October 2005. At 34, Salma found herself very lonely, although her family rallied round. Her husband at first expected her to recover fully and Salma remembers this as a frustrating time for them both, as she didn’t have the Gujarati words to describe how the body can attack blood vessels and organs, or the implications of a weakened immune system.

In the years since, Salma has developed other health problems, which she feels have been triggered by the vasculitis or its treatment. These include fibromyalgia, Cushing’s syndrome, steroid-induced diabetes, high blood pressure, abdominal pain, incontinence and headaches. She is on a range of medication and under the care of many different hospital departments and consultants. Salma feels her vasculitis consultant always includes her in decisions about how it is managed, and she currently receives annual rituximab infusions – which she describes as “happy juice” – to suppress her immune system. 

Salma says she trusts that Allah wanted her to have vasculitis and may or may not decide to make her better. She was disappointed when the “positivity” of fasting during Ramadan became too risky for her medically, and she now pays money to charity instead. She says that she has had to learn to listen to her body, pace herself, and accept that some days she feels more tired and ill than others. She tries to stay as well as she can, enjoys spending time in her garden, and welcomes opportunities to support medical students’ learning and research.

Salma tells medical students she is comforted by her faith in Allah, believing that vasculitis was “sent to me by Him for whatever reason.”

I think the second-year students were sent to me, at home, I had about four, or maybe five of them, who were learning to talk to patients as part of their medical degree.

So that, obviously we made arrangements to meet up at my house, they would come, they, they would ask me loads of questions and, you know, like how I felt and how I had been treated, all this sort of thing, and then they’d write it down and, while I was talking. There, there was one young lady who came to me and she, all the other students used to write it all down, they’d come with a big notepad and pen and whatever, but this one student didn’t bring anything with her. She just sat there and listened to me and all the while I was thinking, “Is she going to remember any of this?”

And then one time maybe about a year or so later she emailed me to say that, “I was very, very impressed with the way your attitude was, is towards your illness. You never asked why it had happened to you, you never, you just accepted it without any questions. And I was, I was in tears about it afterwards because thinking of everything that you’d done, that you’ve been through really scared me, and I don’t think I’d be able to be as strong as you and you know, think that ‘Oh, well Allah’s done this for a reason and therefore, it is what it is.’”

But yeah, I was, she was very impressed, and she had, I said to her when she, I think she either emailed or telephoned, she said to me that, I said, no, I said to her, I said, “All the other students that came to me were writing everything down and you didn’t write anything down.” So, she said, “No, I remembered every single word you said, so I didn’t need to write it down, I wanted to concentrate on you instead of, sort of being sit there and writing while you’re talking. But yes, I’m, I hope you get a lot better soon and, you know, I will be praying for you.” So, she was a really nice young lady, and it just makes you feel a lot better.

And yes, I do have a lot, a lot of faith in my, you know, religion and in Allah Himself. So, you know, the way I see it, it’s sent to me by Him for whatever reason and it will get, you know, [sighs] I’ll stay as well as I possibly can in the meantime, so, yeah.

Salma’s vasculitis symptoms included infections, pain and other worrying changes throughout her body.

Yes. So back in 2003 yes, excuse me, back in 2003, I, for about four months, from about I’d say July/August, from that time I was feeling always under the weather and also, I had oh, every, this cold that I had, it just keep, kept coming back, it would feel like it was, it was going, obviously I was taking, at the time I was taking Nurofen because that was the only tablet that I could swallow at that time [laughs]. But, yeah, so I just keep getting, kept getting this cold that wouldn’t go away.

After that it progressed and I developed sinusitis, chest infection, urine infection and then another chest infection. So obviously by December, middle of December, I started going to see my GP and she was very good, she said, “Okay, let’s see how you’re doing, come back”, she gave me something to get my energy levels up and she told me I should take different, you know, sort of vitamin C, that sort of thing, so that, you know, I can boost my energy.

But after that the sinusitis started, and then I was having a lot of problems. Apparently my, the whole sinus area was very bunged up, but that, the antibiotic they gave me for that didn’t work, the antibiotic they gave me for the chest infection twice and the urine infection didn’t work, I was still getting very, very ill.

By December I was having awful joint pains, muscle pains. If I sat down, it would take me a very long time to get up because of the pain I was getting in my legs and that. At one time I lost the hearing in my left ear, luckily my aunt came to see us for whatever reason, and she said, “No, put some, warm some oil up with a bit of garlic inside, in the oil and then once it’s cool put it in your ear.” and miracle of miracles it did, my hearing did come back in that left ear, so, yes.

And then probably the last week of December, I started coughing up blood. And I wasn’t really very happy about that, I was quite scared actually. So, and also in the mean-, before the cough, the blood, coughing, I had, I, my ears, sorry, my eyes, one morning I woke up and they were absolutely sort of like racetracks. I had, they were bloodshot completely. So, at which time I got even more worried.

Vasculitis and its medication “triggered” Salma’s fibromyalgia, blood pressure problems and steroid-induced diabetes.

So, and I also have fibromyalgia, which developed in, over the years, but was diagnosed in 2007. Fibromyalgia, at that time the doctor asked me do I want any more medication for it and I said “No,” but then a year later I was re-referred to them and they then said to me, “It would be better for you if you take medication for the fibromyalgia,” because, I was in, at this, by this time I was in a lot of pain again all around the, well, all my joints and muscles would hurt and I was finding it very difficult again. And obviously with blood tests my creatinine levels and the vasculitis itself, were not too bad, they were, they might’ve been elevated a bit but not so much.

So, then my GP, I went to see my GP and she also did the same blood test, sorry, blood pressures, heart rate, oh, that’s why I’m seeing cardiology because of my heart rate was getting quite high as well at that time. Every time, my blood pressure was high, that would be high as well.

Everything that I have now has been triggered by the vasculitis in one way or the other because I, the first seven years of my working life - and I started working when I was 17 - I was, I never, ever had a sick day off work, ever. So I, obviously after that I might have had the odd few days in a year but nothing compared to what, you know, what’s happened now with the vasculitis, and I think most of it is related or started after the vasculitis, because even like the blood pressure, I didn’t used to have that problem, and because of the medication I was taking for the vasculitis that then gave me different side effects like the blood pressure and as I said, the steroid induced diabetes, and even the [fibromyalgia], all these I think comes down to, the vasculitis.

When Salma gained weight on steroids, her husband – a tailor – adjusted or made her clothes to fit.

Well I don’t know if this counts or not, but when I first started the steroid, steroids, then I found, obviously some people, lots of people have different side effects from steroids and I found that I was having my, I don’t know if you know, but there’s a side effect called moon, moon face, so unfortunately my face just swelled up like a moon or a balloon, and it made me feel very conscious of how I looked to somebody who didn’t know me and who didn’t know that I was taking medication because I wasn’t well. And at that time also I lost all my hair, because of the steroids.

So, I mean [sighs] the steroids were good for me in, obviously in terms of helping me get better, but unfortunately they have such bad side effects for some people. I have to say my dad, he never ever had that problem with steroids, and - because he had a kidney condition and he had had a transplant, but he was on a maintenance dose of steroids, you know, after the transplant - and he didn’t get any sort of swelling of the face or body or anything like that. I mean my shoe size went up from five to six right at the beginning, and clothing as well. I, luckily my husband is a tailor so he used to make, you know, adjust my clothes if I, if they could be adjusted or he’d make me something that would, you know, that would look okay on me rather than everything being too tight.

On top of that I also have, I forgot to tell you earlier, steroid induced diabetes, so, because of the steroids that they gave me right at the beginning, I developed diabetes. I’ve been on insulin twice when they’ve, my sugar levels were getting too high, and I’ve also been just on tablets as well, which I am at the moment.

With vasculitis, Salma can do more some days than others, and is taking longer to cook a meal.

I do my housework and I cook meals. Obviously, we, being Gujarati we also eat chapattis with our curries and, I, at one time I was finding that very, very difficult to do them because it would just cause my, obviously you’re rolling the dough, so it would just cause my arms and my shoulders and everything to ache so much. So, you know, even though I’m taking the nortriptyline for the fibromyalgia, which is I think a painkiller, and on top of that I, when I need it, I take paracetamol.

But yeah, I, some days I can do nothing more than cook a meal. Other day I can do some hoovering, cook, partially cook a meal or some, you know, something easy. If I’m feeling a bit tired and that I will make something easy instead of, you know, sort of doing something that’s going to take a long time to do basically.

But I have also found recently in the last, probably last year that I’m getting quite slow at doing, it takes me twice as long to now cook a full meal like chapattis, curry, sometimes rice. I find that it, it takes me a lot longer. I mean before we used to have our lunch at lunchtime, now we have a late lunch at 3.30/4 o’clock, so, which is cutting out a whole meal, and also, it’s the only, that’s how long it takes me to get my meal cooked, especially if there’s chapattis to do then it takes me even longer.

I’m, and I find that even in the mornings I’m a lot slower than I used to be. By, by the time I get up, I’ve had breakfast and sometimes I’ll have a shower in the morning before I come down, but if I have a shower then that means if I, if I went in the shower at 8 o’clock, and by the time I’ve, I’m ready to come down it’s probably nearly 10 o’clock, it’d be about quarter to ten, 10 o’clock. Obviously before it didn’t, it was not like that.

I find that no matter how much I try to get a meal cooked by 1 o’clock it just doesn’t happen.

Salma couldn’t find the Gujarati words to explain to her husband what vasculitis meant for the future.

But my husband, unfortunately he’s - well unfortunately or fortunately - he’s from India, and we’d by this, by 2004 we’d been married - from ’97, ’98, ’99 - about seven years, so we’d been married about seven years but he didn’t want to learn our language. So, it was very difficult for me to make him understand what my illness was and how it’s affecting me. I mean he, obviously he could see, but he didn’t want to accept it at that time. So, it put for me it was quite, quite, quite difficult he was thinking that, “Oh, she’s back at home now and she’s doing really well” – well, he thought I was doing well, and he thought life would go back to normal, previous, to my illness being diagnosed and everything, when I was well basically.

So, he couldn’t, I couldn’t explain to him in Gujarati, which is our language that we speak, I couldn’t explain to him exactly what my illness was because I had no words to explain to him, what the immune system is or even what they call it in another, in Gujarati, because I have, you know, growing up in this country, you don’t think about things like that because it’s never going to happen to you.

So we found that very, very difficult, and for a while we were struggling, you know, to keep our, relationship on a good footing because there was a lot of tension, because I can’t, I couldn’t understand why he didn’t want to understand, and I couldn’t explain it to him in Gujarati, which is, you know, he might have been able to grasp at that time, or he may not have been. So, it was all sort of swings and roundabouts unfortunately.

After being medically retired due to vasculitis, Salma felt “very, very lonely” without work colleagues.

So, between us then we decided, you know, it’s not worth, and for me I thought, “No, I can’t go back, go to work at the moment.” And then they, they terminated my contract in October 2005, my work contract.

So at first it was very, very, lonely because, you know, you take for granted that I’m going to be, I’ll be going to work, I’ll meet, meet up with friends I made at work, with colleagues and things like that and, you know, suddenly you’re not going to work and you’re never going back to work and you think, I think, thought to myself, “Well oh, my word, what am I going to, how am I going to keep in touch with all these people that I know?” Luckily, I have still got a few ex-colleagues who, who are friends who keep in touch, but it was, the social aspect of going to work had gone and, because, you know, when you go to work sometimes you have a chat with your colleagues and, about personal things and, you know, you don’t even have that anymore.

Salma can’t fast during Ramadan because of her medication. She gives money to charity but misses out on the “positiveness.”

Since Ramadan started in August, July, August time I’ve had to not fast because I just couldn’t manage doing, having like my night-time tablets and having my daytime tablets like only an hour or two between them, because I don’t think that would be very good. So then, you know, I, and also, I asked my renal consultant, “What do you think I should do, do you, what do you recommend that I do?” and he said, “Well I, just to risk getting your kidneys getting dehydrated, it’s not worth it that you fast.” So, for the last, probably five, six years I haven’t been fasting in Ramadan.

Has that had any implications for you?

[Sighs] Well it’s one of the, fasting is one of the Pillars of Islam, so it was, at the beginning I felt really bad because, you know, I just couldn’t take my tablets. At the beginning I was taking, I was trying, do, I did a few then I stopped for a few fasts and then I started again. So, I was stopping and starting, throughout the month.

But now, it, I can’t do that because at that time I was on different medication and it didn’t really matter if there wasn’t a long enough period between them, because I would have to take my breakfast medication, at half one, in the early hours of the night basically. So, it, and then I’d taken if, my night-time tablets previous to that say about 12 o’clock, so I was taking them before I go to bed, so say about 12 o’clock. So, with only an hour and a half between them I was thinking that maybe I’m taking a risk I shouldn’t, I wouldn’t, shouldn’t take basically.

So yeah, I did feel like, I did feel bad at the beginning, because obviously if you can fast in Ramadan it’s so much better, you know, there’s a lot of positiveness coming from that as well. So yeah, I did find that at the beginning it was quite difficult but now I’ve sort of settled into it, and also, if you’re, if for whatever reason, medical reason you’re not able to fast, we need to pay a small amount for each fast, to charity. So, I, for the whole month I would just send some money to charity and that would be covering the fact that I wasn’t able to fast this year sort of thing.

Salma leaves her future with vasculitis “to God, to Allah.”

You’ve mentioned a few times about occasions that were really scary. How do you deal with that in terms of looking towards the future, how, is that something that you think about?

To be quite honest I sort of leave that to God, to Allah because I have very strong faith, I certainly have a lot of faith in my religion, and I just think to myself, “Well, Allah wanted me to have this disease, to be ill, whatever, and, so, you know, if he wants to take it, make me better he can do, but if he doesn’t then, you know, I’ll just muddle on the way I am doing for, until, you know, things either get worse or I die.”

Salma says doctors need more information about vasculitis treatment side effects so they can inform their patients.

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.

Salma’s vasculitis care is coordinated by a multidisciplinary team, but she needs to see other doctors too.

Yes, certainly with my renal consultant, we have a very good relationship, he’s, he is a fantastic doctor. His bedside manner is absolutely fantastic, I cannot complain about him at all.

[The renal consultants and the rheumatology consultants work as a multidisciplinary team for people with vasculitis. They talk to each other before they make a decision, such as whether I need another rituximab treatment. Sometimes they have joint clinics, so I can see them both on the same day. The vasculitis clinic also sometimes arranges for me to see the diabetologist as well. Once a month they have a team meeting where they discuss any vasculitis patient who needs a more rounded approach.]

Yes. Yeah, so my, going back to my renal consultant, I, because I was working at the hospital, I have his email address and he always says to me, he always talks to me and explains things to me and then says that “We can try and deal with this problem of yours with this, if we do these actions and are you happy to do that?” He always includes me in any decisions that we make together about my health.

The rheumatologist, she’s, although I haven’t seen her very much, she is very good and she will, you know, talk, ask me how I feel that things have gone, and how I feel about maybe increasing or decreasing some of the medication or whatever. So yeah, the rheumatologist, the diabetologist consultant, they are very good as well.

Actually the, one, the main consultant that I used to see in clinic, she, we would have a great, you know, chat, after my appointment’s done, she’ll spend five/ten minutes talking to me about this, that and the other. And she used to get, have students in clinic and she, we would play this little game with them, that she, “Salma’s going to tell you what her symptoms were - or are - and you have to guess what her ailment is basically.” So, you know I’d give them a little bit of information and then either they would pick it up or they wouldn’t pick it up. So, most of them did, so obviously they were doing quite well with their studies.

But, yeah, my diabetology consultant, she was very, very good and she would always spend a few minutes chatting with, not just me, with all her other patients as well because if she was in clinic that means that we had at least an hour’s wait, sometimes it’s like two hours because she was spending more time with her patients. But now I’m seen by, registrars I guess they are, who work with her, and I have to say they are okay, they are good, yeah.

So, the, oh, I also see an endocrinologist once a year. Initially, many years ago, I started seeing an endocrinologist and he then diagnosed me with Cushing’s syndrome and so since then, because of my various illnesses and all the medication I take, I was getting hirsutism, a lot of hair on my face basically. So, he has been keeping, he has been, they ask me once a year to go in and check that everything is fine because I’m taking finasteride, which, just to help with the re-growth of the facial hair. So yeah, I have one, an annual appointment just to check everything’s okay and see how I’m getting on with the tablets, whether I’m having any effects, side effects or whatever, so, yeah.

So that, and the neurologist I’ve only met once, so I wasn’t that impressed with her at the first meeting. I’m hoping things will improve from there. And I think that, that’s probably all of them, I think. Oh, the urology’s also a very new thing so I haven’t seen the consultant there at all yet, so there we go.

Salma says vasculitis is life changing, so it’s important to “listen to your body” and ask your doctors about anything you want to know.

Is there anything that you have as a message if you like to other people who may be getting diagnosed with vasculitis now?

Mhm. Yeah, I would say to people listen to your body, that is the most important thing; you have to listen to your body. If it’s telling you it can’t do this anymore then don’t do it. If, if you’re not able to go back to work it will, obviously it’s going to change your whole life in that sense, but at the end of the day your health is number one. That is the very, most important thing to remember for any new patients who develop vasculitis, and that is a very important thing, yeah, they must.

Yeah, so yeah, I think the most important thing is accept it and try and look for the positives in it and listen to your body. And talk to your doctors. They’re not, they will help you if you know, they don’t intimidate anybody as far as I know. I know some people can be quite scared of professional, doctors and that, but they’re human beings and they will help, if you need to know something they will help you. They’ll explain everything from A to Z.

And nowadays the letters that are sent out from clinics, they are sent, well from our renal unit, they write the letter to me and copy in the GP. Before they used to write to the GP and copy in the patient. So certainly, you know, things are changing for the better for the patient and you have to take advantage of whatever that is, and if you need to know more information just ask for it and they will give it you.