Stewart and Marilyn - Interview 29

Brief Outline: Stewart was diagnosed with Factor XI Deficiency after falling seriously ill as a result of a liver biopsy.

Background: Stewart and Marilyn are married and have two grown up children. Stewart worked as a taxi driver and Marilyn is a care worker. Ethnic background/ nationality: Jewish

More about me...

Two years ago, Stewart was in hospital being treated for leukaemia when doctors decided to do a liver biopsy to see why the antibiotics had turned his skin yellow. Stewart began bleeding internally almost immediately and ended up in intensive care, very close to dying and barely conscious. He became very bloated and his liver and kidneys started to fail. Stewart remained in intensive care for around four weeks. He was seriously ill but the doctors had no idea what the problem was. Marilyn felt that the doctors were missing something and suddenly thought about Factor XI Deficiency, a condition that her niece had. Stewart’s blood was tested and it was found that he had the clotting deficiency. 

 

Stewart was moved from intensive care and began the slow process of recovery. He went home weighing 6.5 stone and two years on, still finds it difficult to walk or drive very far. He has stopped work as a taxi driver as a result of his ill health, and the couple both describe how emotionally difficult the experience has been for them both. 

 

Stewart describes feeling vulnerable as a result of the condition. He worries about having an accident and bleeding and so carries a card alerting medics. He has regular appointments at a specialist unit in a hospital but other than be cautious, there is no cure or treatment. The couple feel strongly that people should know about the condition so they can be tested in advance and avoid the experience they have had.

Marilyn and Stewart want to raise awareness of Factor XI Deficiency so that people are tested for...

Marilyn: Well I think yes, and the whole thing has been quite harrowing really, because the knock on effect is that all the children have to be checked, any blood line, has to be checked and people must follow it through and I also think people must talk about it which I think is very important, because we had never heard of it. There are so many people out there that haven’t heard of it, that it needs, needs to be told, and that’s when I’d seen your first research. I think he’d just come out the hospital. And I sat there and I thought that’s wrong, because this has nearly killed you and no one’s talking about it.

 

Stewart: Yes, well I went through all the different conditions that you’ve mentioned in your original research and wondered why Factor XI hadn’t come up.

Marilyn: Yes, but I think it’s because it’s not spoken about, because it’s not out there. It’s not like Tay Sachs or anything like that that’s spoken about and there’s not a charity for it. You know, so it’s, I think it’s like a hidden disease. 

Factor XI Deficiency came to Marilyn's mind when the doctors were struggling to treat her husband.

Stewart: And then about a week or so later, eventually they decide that I can go back on the ward. So I go back on the ward, and the nurse is there who actually sent me down to Intensive Care. She was surprised to see me, she didn’t think I was coming back. She told me. Within a couple of days, they are wheeling me out of the ward, which was a ward of five beds into a private room. I said, “Well what’s happening now?” “You’ve caught MRSA.”

 

Marilyn: And that was to boot.

 

Stewart: So I now spend five or six days on my own in this ward.

 

Marilyn: And he’s not getting any better.

 

Stewart: And I’m still not getting any better.

 

Marilyn: And he’s losing more weight.

 

Stewart: I’m losing weight. I’m not going to the toilet as I should be going. I’m still being fed through a tube, and then I think one day, Marilyn had – something came to her.

 

Marilyn: I was standing outside and I really thought we weren’t going to bring him home. And I don’t know something just clicked in my, back of my mind. I was desperate. I’d looked everywhere. I’d spoken to people. I’m not unintelligent. There was something not right. Something had been missed.

 

Something clicked in the back of my mind about my niece. And they’re not blood relatives and I thought this has got to be a million to one chance. And I stopped one of the doctors who were phenomenal. I’ve got to say. And I said to them, “Has he been checked for Factor XI?” And she said, “Well no. We checked for haemophilia which is normal. But we don’t check for factor XI.” I said, “We are Ashkenazi Jews.” I said, “Just something that’s clicked in my mind.” So she said, “Well that test will take a couple of days to get the response from.” She said, “But okay I will do it.” She phoned me that evening. As I said, we were in [hospital]. And they were superb and really kept me in the picture, and she said, “I’ve done the blood test.” And that was on a Friday evening. She said, “I’ll get in touch with you Monday, Tuesday, when I get the results.” She phoned me the next morning to say, “Its factor XI. We know what we’re doing.”  

Marilyn decided to go back to work after Stewart's illness and that has been quite hard for both...

Yes. He’s still not working because what it has done to his body... each time we see a doctor for whatever, I don’t think they understand that he was so ill that his body, as a layman, his body has never recovered. He… if we want to go out in the evening, he will have to go to bed in the afternoon. If we go out in the evening and he’s not had of hours sleep in the afternoon, we will have to come home 9 o’clock. And he has tried to go back to work. He’s driven for a couple of hours, and… his home, or, he, he just cannot do it. You can, it is a catch 22. If …

 

I don’t want to live through that again. I’ve changed my mind about euthanasia, I feel that if you’re that ill, it would have been wrong in Stewart’s case but its left so many things open that, it’s very hard to explain how you feel. You feel that you’ve been in a boxing ring with someone and they’ve beaten the hell out of you. You, you go on overdrive. If you work like I do, I have the support of my company, which was amazing. I didn’t have to worry, eight, nine weeks I sat by his bedside. So if people support you, that’s great. 

 

But the support came from places I didn’t expect it to come from. And people for the first couple of weeks are there to support you. After that they drift off. You know, you’ve got to get on with it. And then you have to make a decision.

 

And my decision was to be quite hard on you, wasn’t I? I went back to work. He had to get on with things at home. We’d lost an income. We’ve still got a mortgage. The insurance on that kicked us in the teeth. They didn’t pay out properly. We thought the mortgage would be paid for. But it isn’t. Because we had some savings we couldn’t get the benefit for people that are out of wait debt for Stewart. So, what’s happened now is the pressure has now come on me. I’ve taken the role as the provider but there are women out there and men that wouldn’t be able to do that. 

 

Stewart and Marilyn stress that Factor XI Deficiency isn't a death sentence

Is there any message you’d give to somebody who’d just found out that they’d go it?

 

Marilyn: I think we would have two different types of messages.

 

Stewart: What? A message to somebody who’s found out they’ve got the factor 11 deficiency? I would assume that, the hospital and your GP know about it. And allow the doctors to look after you as best as they can and take whatever advice they want to give you. Like simple things as not having aspirin because you mustn’t thin your blood because it’s thin enough without being helped by medication. If you have to take cold or flu treatments, make sure you take the advice and keep to the advice that the doctors give you. Because at the end of it all it cannot be cured, it can only be controlled.

 

Marilyn: I think my messages for this, from the person looking on, is to cheer, actually to say, “Well you know, this isn’t going to kill me outright, it can be controlled”. I have just got to be careful, everybody’s got to be aware if they, if I’m in accident we act on it promptly, but I think you cheer; It’s not a death sentence as such. You know, and I think you have to remember that because if it comes along with another illness as it has done in this instance, that could have been a death sentence. But I would say go out get your family checked. Spread the word. It’s important. We need to spread the word about factor XI because it’s not discussed. That’s why we are doing this today. 

The antibiotics Stewart took during chemotherapy turned his skin yellow.

Did they explain why you went yellow from the … was that because of the liver biopsy?

 

Yes. Yes. What happened was on, when you have chemo, you get your chemo pills and all the pills to go with it and then you get your antibiotic pills, because what happens is the chemotherapy kills all the antibodies. So, you leave yourself susceptible for various diseases. Well, after the first lot of antibiotics I went blotchy red, which meant those antibiotics didn’t agree with me. Then for the second session of chemo they changed the antibiotics and I was still going blotchy red. Eventually they found an antibiotic which as opposed to being in a pill form, was in a liquid form, which is what they only give to children, which is also extremely expensive which is really the end, the last antibiotic that they give an adult. Well it seemed to be working, but instead of sending me red and blotchy I went yellow. And that’s why.

 

So that’s what led to the liver biopsy?

 

Yes. It’s actually called atovaquone, the antibiotic 

Stewart and Marilyn no longer plan ahead for longer periods, but instead set themselves small...

Stewart' And this is how we look at life these days. Anything further than the end of the year, we don’t, we just have take it as it comes.

 

Marilyn' I was always a great future planner and I could tell you what we were doing all next year, because I work like that. I plan my years. But now, we really, can’t plan. Basically because of the tired… the tiredness that it’s left. And you just can’t plan anything. We actually went out last Sunday for two and a half hours didn’t we?

 

Stewart' Hm.

 

Marilyn' Out the blue. Because the weather was good, and when you came home you had to go to bed didn’t you?

 

Stewart' Hm.

 

Marilyn' And we’d only gone, what thirteen miles.

 

Stewart' Well we was out, I drove, what 25 miles I suppose. But it took it out of me, but it’s better than sitting at home, watching TV all the time.

 

Marilyn' Yes. We still have to think about what are we going to do? You know, and that comes up in now as second nature. If we know we’re going somewhere he’ll think well yes, okay, I can do that, but if I do that walk am I going to get back? Am I going to be really tired? So you have to think more. You really do. And, it is you take, you can’t plan. You cannot plan because we went to a wedding didn’t we, and you really had difficulty in staying there.

 

Stewart' oh yes.

 

Marilyn' And it was a day in bed the next day. You know, he’d had a rest in the afternoon, but we got to the wedding. We left at 1 o’clock. We got home about midnight. And he wouldn’t, he was totally wiped out. He was green. And people don’t understand, because they look at him and they say well he looks all right, why isn’t he going out to work? And you get to the point, you can’t say any more, but how many times can you tell people what you see isn’t what you’re getting? And I think that’s the important thing.

 

Stewart' Well I think it’s all taken so much out of me, I think what the doctor tried to explain is that because of my age, I haven’t got the years in front of me, to build up what I’ve had of the years behind me in strength and stamina which you build up over years. And because it virtually wiped me out I can’t get it back because I’m probably too old to do what I was doing 25 years ago.

 

Marilyn' It’s changed my life completely. I should have retired a year ago. I can’t see me being in a position ever to retire. I’ll get too old for my job and they’re going to ask me to retire, and that’s when I’ll retire, when I can’t do the job any longer. But it’s changed our lives hasn’t it? Completely.

 

Stewart' Oh yes.

 

Marilyn' And I think for a man that’s very hard deep down to accept. You know, he was always the provider. I was the provider for the holidays, and the cruises and the, you know, let’s go out to dinner three times a week or you know, that’s what I provided, the kids wanted something. We’re going to be grandparents for the first time in seven weeks time. That would have been, yes, we’ll go and do that. We’ll buy this, we’ll buy that. Things have changed. And it is knock on effect and people need to be aware that to me this is a hidden illness.