Gogs

Brief Outline: Gogs was diagnosed with rheumatoid arthritis (RA) and then a related lung condition. Becoming ill in retirement came as a shock as she had previously been healthy and had little contact with health services. Her RA is poorly controlled and she worries about an uncertain prognosis.

Background: Gogs is a former advanced nurse practitioner who lives with her husband and has 2 grown up children. Ethnic background: White British.

More about me...

Gogs’s account reads primarily as one of somebody with rheumatoid arthritis (RA). However, she also suffers from “rheumatoid lung” as part of the disease and has had numerous problems with medication. Mostly, medicines have been ineffectual and have sometimes brought serious side effects. For these reasons, her GP has her characterised her as a ‘complex’ patient with high medical needs.

Gogs was “perfectly fit” until being diagnosed with RA 3 years before this interview. Her good health meant that she rarely consulted with doctors. Partly because she worked as a health professional, she used to monitor her own blood pressure. When she became ill she initially paid for a private consultation with a rheumatologist as an NHS referral was taking too long. 

Gogs thinks very highly of her GP but has not had good experiences with hospital consultants, some of whom were not good communicators or else appeared defensive when she pointed out that some of the drugs she has been prescribed made her ill. Her problems with treatment led her to change hospital. She would use private medicine exclusively if she could afford it.

Gogs is concerned that the drugs she has been prescribed are not working. She is sometimes confused about whether symptoms are caused by RA or by the drugs themselves. Becoming ill unexpectedly was a big shock to Gogs after a life of good health. She is a full-time carer for her husband and the fluctuating flares that accompany her condition mean that she is sometimes unable to cope without emergency assistance from friends.

Gogs had always been well. When she fell ill in her 70s she was angry that she could not do not do the things she used to. After 2 years, she has not come to terms with her illness.

So I’m, kind of, interested in your, kind of, self-identity, if you like, because you were someone who was very fit into your seventies and then all of a sudden you find yourself in this, kind of, protracted business with the Health Service.

Yes.

And I, kind of, wonder how that…how that…how that affected you?

Well I think I was angry, I was angry that my… for a start, that my health had let me down and that everything I did and thought I would be going to continue doing I can’t do and I was… and I was angry with my husband for having a stroke, there’s no…it’s not rational, but I was, you know, how dare you? How dare you have something that demands more help from me than I’m able to give? So we, you know, because I couldn’t look after him, I… we got carers in for a bit and that’s a minefield that I don’t want to go into, you know, you pay out for these people and they’re just… it’s horrible. I would say that even today, two years later, I haven’t come to terms with the rheumatoid, it has stopped everything that I did, absolutely everything. I used to sculpt and, paint, do lots of things like that, but with my hands, they’re just, you know, just… they’re just too painful, I can’t lift for any length of time now because of the pain in my wrists. I used to walk, real, you know, proper hiking stuff and loved, absolutely adored it, I can’t do that now, you know, because my lungs make me very breathless after I’ve been walking for, you know. 

Well I actually had some lung tests done just the other day, and it’s a six minute walk, among other things, that you do there and I was… I was pretty jiggered at the end of the six minutes, you know.

When Gogs developed lung problems related to her rheumatoid arthritis it was decided that the chest doctors should lead her care. She tried a variety of medicines, several of which she couldn’t tolerate due to side including weight loss.

So did the hospital try you on a different DMARD or they didn’t…?

Well, no, what happened was that they decided that, you know, yes, I’d got this rheumatoid lung, so rheumatology said, well, we won’t have anything to do with you, err, we’ll be guided by what the chest physician says. 

So this rheumatoid lung, is that a separate condition or is it part of…

No, it’s part of it, yeah.

It’s part of it.

So if I have, my understanding is, if I have flares and it becomes quite active, then the inflammatory process takes place in the lungs as well.

Okay. 

Which means that they become more and more fibrosed.

Right.

Yeah.

So is your treatment sorted out, such that you don’t have side effects now?

There…there was, yeah, I went through a few processes there, I had another drug which was equally unpleasant and that had to be stopped and then I spent possibly a year, err, just being covered by steroids. So, you know, you can go back to the days when you…you knew about it. And the steroids caused havoc, but the other drugs also caused havoc with my digestive system and I lost a tremendous amount of weight, in fact, I haven’t put any weight on, I’ve only lost weight since I was on steroids and lots of weight, you know, I was, oh, sixty-six kilos when I started, and I’m about fifty, fifty-one now, kilos. Err, it’s fairly stable at the moment, but what I’m on is not affecting me either now.

Gogs is concerned about the speedy progression of her condition and she feels that nobody warned her that the treatments might not work. She wonders whether it is worth continuing to see the consultants.

And you’ve been up and down in that and you’ve tried these things out, then you have a better idea, I’m… if you can say I’m only two years old, I’m still a fairly new rheumatoid patient and in the first year, except for two lots of drugs that I persevered with as long as possible, I had numerous side effects, which necessitated me ending up going to see a third consultant which was a colorectal surgeon, because everybody was making issues about weight. 

Then I changed consultant, rheumatology consultant and she went through all the first bits and then she started me on a drug which I was really hopeful would work, because, according to h yes I was having flares, et cetera, and that was the thing that they were supposed to be bringing under control, but if twelve months later I’ve still got the flares and I’ve had some very highs and lows with them and they limit… the drug… the condition itself is limiting me more and more and more, I’m aware of that after two years, that frightens me, that actually really frightens me, because I thought it progressed, but slow except if you were one of these very unlucky people who just kept progressing and nobody has actually told me I keep progressing and that the drugs won’t work, maybe they don’t do that, maybe they wouldn’t tell you, I don’t really know, I don’t… nobody would tell a patient that, but because I’m stuck with knowledge and being a patient, I’m in a very, very difficult position.

And I want somebody to tell me that this is not going to continue to progress, it’s not going to be a fast progression, you know, that, my lungs are not a mortality of three to five years, and, yeah, there are drugs and we will give them to you and we will bring you under control, and nobody has done that.

So, you know, I…it make me feels that it’s not really worth going to consultants, the GP is wonderful, I can’t find one thing wrong with him.

Gogs’ initial treatment made her ill and was stopped. The same thing happened with another medicine. She was then put on steroids and other medicines which affected her digestive system leading to weight loss.

So that’s really where it started, yeah. Then I was… it was, again, confirmed by this hospital, they did the usual tests and I got started on some medication… oh, though the problem there was that because…no, no, sorry, there’s a mistake there… the rheumatoid lungs didn’t really… weren’t really confirmed until about two months after that, even though they were aware that there was a lot of noise going on in my chest, which I wasn’t aware of. 

So, initially, I got started on some medication which was started by this… this chap that I know but it didn’t suit me, I kept on it for about three months, but I was really quite ill with it. And so it was stopped when I went to the NHS hospital, because, simply I said, you know, I was... I’m having horrendous side effects. And it wasn’t very long after that that I was diagnosed with the rheumatoid lung and, of course, that created more problems then, because the drugs I have for the rheumatoid, I can’t have, because they conflict with the lung problem. So it has put me into the complex category from day one, which I absolutely hate.

So is your treatment sorted out, such that you don’t have side effects now?

There…there was, yeah, I went through a few processes there, I had another drug which was equally unpleasant and that had to be stopped and then I spent possibly a year, just being covered by steroids. So, you know, you can go back to the days when you…you knew about it. And the steroids caused havoc, but the other drugs also caused havoc with my digestive system and I lost a tremendous amount of weight, in fact, I haven’t put any weight on, I’ve only lost weight since I was on steroids and lots of weight, you know, I was, oh, sixty-six kilos when I started, and I’m about fifty, fifty-one now, kilos. It’s fairly stable at the moment, but what I’m on is not affecting me either now.

And what were the unpleasant experiences that you had on the drugs as well as the weight loss?

Vomiting and diarrhoea.

Gogs says people need a good GP as some consultants are more difficult to communicate with than others.

I’m just interested if there’s a couple of tips…

Right.

…coping strategies, advice around anything that we’ve talked about that you would give to other people?

Well, I…yeah, I think in relationship to the health issues, you know, it’s a minefield that, you’re…you’re not…even I who have got experience is not really getting through that very well, but you do need a really, really good GP who, you know, is your advocate really. The person that will sort things out clinically, medically for you, and if you haven’t got one, then you need to find one and if that means that you need to go to a GP up the road and say, I want to sign on, then that’s what you do, because, without a good GP you really are lost, you can’t get through to, some…you know, it’s unfair that… I have four consultants looking after me, and I have to say that they’re…that, there are two of them that are really, really easy to communicate with, you know, are not defensive in any way, but consultants, like all of us, they’re just human beings and they take into that profession their baggage unfortunately and the people that lose out are the patients, because when you are a patient you’re very vulnerable and you always have to remember that, because when you go in you’re expect…you’re expect…you’re expecting something. 

And if it’s not forth coming it just leaves you then to have to try and work out yourself and that’s why a good GP would be very useful for that. If they don’t…if the consultants don’t give you the answers, go to your GP and he will be able to help you.