Well it was getting. It was a different colour. It was quite red and it was hard. It was swelling up at quite an alarming rate, and it was getting very, very painful. It started in my calf and it moved up the leg. So the clot was in the back of the thigh, all the way up the back, but it started lower down. So by the end of the day, that day, it was, absolute agony. And I remember saying at that time during those few days, I would have given birth two times over to not have that. So that’s how painful it was. It was excruciating. And I’ve got quite a high pain threshold I think as well. It was awful. And I could barely walk for a couple of weeks. It was very heavy as well and the problem is we don’t have a downstairs toilet. So I tried to minimise any movement, but doing the stairs was horrendous. Standing for any length of time was awful. It was, it’s a very hard pain to describe. It was like an intense sort of throbbing pain, ache. But much more than your average sprain or anything like that. I had no idea DVT could be like that.

So, yes, it was really awful. And there was no real change or improvement in it for a long time. I thought, okay, I’ve got DVT, that’s awful. But I had no idea of the recovery time really.

Sophie’ And I wasn’t ready to go home either because I just couldn’t really sort of function properly. And I remember lying in my bed and it was sort of in the morning time at about perhaps 3 days later after the birth

Tom’ Hm. Hm.

Sophie’ And I complained that I had a really sharp pain in my chest. It was, it was kind of around my shoulder and my breast. It was very close to my arm pit actually. And I just, and it just took my breath away. It was just like electricity going through, you know, it was really sharp and it just drawed me, I had to draw in my breath to sort of cope with the pain. And as it happened there was a midwife in there and she said, Did you have chest pain? And I said, Yes, you know, it’s probably, it’s probably just you know, from where I was lying or something. I didn’t really think it was something really serious. And she said, Oh I’ll go and tell the doctor. And the doctors came back and said, We need to send you for a scan. And then they tried to send me for a Q9

Tom’ CT.

Sophie’ No before that, they tried, a Q9 or

Tom’ Right.

Sophie’ That was a particular scan. I can’t remember the name of it.

Tom’ You inhaled some kind of marker gas didn’t you?

Sophie’ Yes. And they, they took me down to this, scanning area [laughs] and they wanted to put it over my face, it was a big like a gas mask and I felt so ill. I said, There’s just no way you can do that to me, because I’m slightly claustrophobic. So putting a mask on and then putting me in a small tunnel when I was feeling so ill. Because I couldn’t breathe. I kept complaining that I couldn’t breathe very well, and they said And I said, Look I just can’t go through with this. So I went back to the ward. The doctors came in, and said, Right we think going to have to scan you. We don’t want you to leave without being scanned because we think you’ve got a blood clot somewhere, then we need know.

Tom’ Hm.

Sophie’ So we agreed that I’d have a CT scan

Tom’ And I talked

Sophie’ Which has its risks in itself because its radiation. And they don’t usually like to do that to young people. But it was the only way they were going [laughs] to get me to go for a scan, and, and so it wasn’t too unpleasant, but it wasn’t, it wasn’t great, and And I sort of thought all this time, I thought I don’t really think it’s that [laughs].

Tom’ Hm.

Sophie’ But anyway, I know I was feeling really ill, and I knew that before I went in, I was in a wheelchair waiting to go in for the scan. I couldn’t even sit up straight and there was no one else with me. I just, I was sort of lopped over, like, feeling so incredibly ill

Tom’ Hm.

Sophie’ and I thought oh I just, I feel I could just fall down on the, on the ground. I felt so ill. So they did that, and the moment the doctor came in and he said, I could see his face was ashen, [laughs] and he said, Sorry but you’ve got a PE, which is a pulmonary embolism, which is a blood clot on the lung, and he said, It’s a small one, so you know, we stand a good chance of tackling this. But it means that you know, you wi

So then on Friday morning when I woke up, my husband goes to work quite early, so my Mother in law came in, and I said, Could you call the doctor? I said, There’s no way I can get to the doctor’s but it really, really hurts. And the doctor couldn’t come out so they spoke to me on the phone. And they said the same thing. They said, Well it could be, either that I had a clot or a chest infection. But I was outside of the prime ten days after the caesarean operation, so to leave it 24 hours and if it hurt that much, I still had the drugs that they’d given me when I was discharged from hospital for the caesarean, just to take the drugs. Because I said it felt like I’d badly pulled a muscle at first, but it had got worse. So he said, take the diclofenac and the co-codamol if I needed to, to relieve the pain and to call them if it hadn’t got better in 24 hours. And it hadn’t. I could barely move on the Friday at all.

So on Saturday we called them, and the duty doctor did come out and he said, that again he couldn’t tell what was going on, so he wanted to send me into hospital just to rule out a chest infection and so I was actually in by the doctor to A & E on the Saturday. So, and I had to take the drugs to get to the hospital because I found it really hard to actually get into the car and make the journey, and then when I got to hospital I felt a lot better, and I was in A & E for quite a long time and I could hear the conversations behind the curtain [laughs] and it was because they didn’t know what to do with me.

The scan team aren’t in on a weekend and they’ll only come in for a real emergency. So I was given Fragmin just in case and they took some different things to try and rule out the chest infection as well, but they didn’t know where to put me, because the main ward had, there was something going on at the time, and I’m not sure if it was MRSA or something else. It was a nasty hospital bug. So, they didn’t want, because I was feeding my baby she had to come in with me and they didn’t want to put the baby on the main ward. It was a Saturday night so they didn’t want to leave me in the A & E side wards, because one of the nurses was very honest and said you don’t want all the Saturday night drunks coming in. [laughs]. And they didn’t want to put me back on maternity in case I did have a chest infection. And in the end they found a side private room on maternity, so we were put back on the maternity ward, but in a side room to ourselves.

And we just kind of sat there for the next four days [laughs] and the maternity staff came in and weren’t quite sure what to do, because the baby wasn’t a new born. So they had their standard list of things they check, and they kept checking her, and so they kept checking that she was going to the toilet, that she was being fed, and they did all the normal newborn checks on her each time. So they could fill in there things, and then I had the normal checks for blood pressure and these sorts of things and somebody did come back and see me on the Sunday and I was being given Fragmin just in case.

And I think by Sunday evening they’d ruled out that it wasn’t a chest infection, so then the next most likely candidate was the pulmonary embolism. And then they said, I’d be scanned Monday to say whether that was yes or no, when the scan team came back on duty as normal.

But on Monday there’d been a bit of backlog from the weekend, so I wasn’t scanned until the Tuesday, by which stage the clot busting stuff had really done its work, so they said, they couldn’t say, because there wasn’t a clot there anymore,

The, apart from being told to drink plenty and antibiotics, but I think that was more for the pneumonia, there is no treatment other than I was on anticoagulant the Fragmin injections, because you can’t have warfarin when you’re pregnant, so it was the Fragmin injections twice a day. Which keeps your blood thin, and then the clots absorb themselves back into the body. That’s how I understand it.

Okay, so how long were you on the labour ward for that time?

For two weeks.

Okay.

And then transferred to a different ward when I was feeling better, and the pneumonia had gone and then sent home to recuperate.

Right. So you must have been about six weeks off your due date by the time you came home?

Yes, yes.

All right and how did you feel when you got home?

Exhausted, weak, emotional, [laughs] realising the seriousness of the PE’s. Didn’t like taking the Fragmin injections, they became painful. Had to go and have regular blood tests at the hospital to check INR and things like that, and to make sure my blood was right. So all very, very scary.

And who was doing those Fragmin injections?

Myself. They taught me, in hospital, how to do them myself. So twice a day morning and night.

And what happened? Did the pregnancy continue?

I was monitored very, very closely because of the PE’s. I was at the hospital once if not twice a week and if not at the hospital, at the GP’s. My consultant was very keen to, to set up a delivery plan, because he wasn’t keen for me to go into labour naturally, in case I needed a Caesarean, because that, they didn’t want to do a Caesarean because of my blood being so thin, there was more complications. So they wanted me in hospital to monitor my blood and change from Fragmin to Heparin which is more easily reversible if you go into labour.

So I went into hospital then I think it was about five weeks before baby was due, because I had high blood pressure, and I’d been having some pains, so they decided to keep me in, just in case, because they want they said they wanted to monitor it all the time, because they did want me to go into labour naturally, until I was on Heparin and then you know, they can monitor me.

Oh sorry. Going back to something I’ve just remembered. Before labour I was, I had to have a Cava filter fitted. It goes into your jugular and then down into your stomach and the idea of that is to catch any clots, and that was in preparation for, for labour, because my consultant was hoping I would have a normal delivery and not the Caesarean so the filter was just another added protection, if there were any further blood clots. So that wasn’t a very nice thing to have.

And it was only meant to be in for a month and they tried to remove it after a month, but the hook had bent on it, so it’s stuck there forever now.

So you’ve still got it there?

So I’m still on warfarin as well. Because the treatment for PE’s you’re on anti coags for six months and have to wear the stockings, but I still have to wear those every day. And I’m on warfarin every day for the rest of my life. Because the filter is still in there and they can’t take it out.

But it turned out that I was given wrong information about breastfeeding. Which, and that’s the one thing that I’m really quite cross about. Everything else, I think, well I couldn’t have done anything about it. It was just really bad luck. But it’s the one thing I feel quite cross about.

Because what happened was we had to stop on the way home. I gave [son] one last breastfeed thinking I don’t know when I’ll ever breastfeed him again. And we had to stop at the supermarket and get formula. I had to ring [husband] and say, Can you sterilise bottles Luckily being second time parents. I’m glad it didn’t happen to be first time, being second time parents we had bottles. And I had back up formula, just in case breastfeeding didn’t work out. So luckily they were out the loft and they were kind of ready I suppose.

So I told him to sterilise some or bring some formula and we had to start him on formula when I got home and it was reallyIt was heartbreaking actually. Sorry.

Take your time there’s no rush. There’s no rush.

I think the thing was, that was really awful having to come home and I had all these drugs to take and inject myself with, and suddenly I had to introduce a bottle to him, and he didn’t take it very well. He was very good in that he took the bottle, but obviously it’s a different feeding mechanism to breastfeeding. And he really struggled and he was clearly taking a lot of air in. So he was sort of very unsettled. He was screaming and uncomfortable and in pain all night. I was in agony because of my leg. Andbasically for two days we had to bottlefeed him, until we could sort of sort out whether I could carry on breastfeeding. But I kept expressing milk to keep my milk supply up. And I’ve never been good at expressing. it’s never really worked very well for me, so, but I wanted to do it.

I had a brilliant GP who I saw a couple of days later. I talked to her about it. And I phoned the health visitors as well because they run a breastfeeding clinic round here. So I had my GP and the health visitors on the case looking into if I could breastfeed on warfarin. Sonbsp;

Yes, so, it turned out I could breastfeed on both the Clexane and the warfarin and I needn’t have gone through this. Because we had two days of, it was awful enough anyway, but two days of me trying to express and him not really, struggling with the formula etc. Soand I think that could have been all avoided. That made it all much worse. And thenwhen we found that I could breastfeed it was great, but he went a bit frantic, so when I went back to breastfeeding it was all he wanted to do. Which was very tiring for me, and I got very sore.

To cut a very long story short I ended up getting thrush in my nipples and in my left breast. It took quite a few weeks to sort it all out. So in the end on the advice of one of the health visitors who came to see me at home quite regularly for a while, considering what had happened I used nipple shields, because it just got so painful and every time I tried to stop using them, I got blisters and I don’t know whether it was because of the warfarin which made my skin more sensitive. I think you’re much more prone to bruising and things with warfarin. So I don’t know if that was it, but I’ve had to use nipple shields ever since basically. I’ve never been able to go back to breastfeeding him without.

So [husband] took that week off. I think he got it as compassionate leave actually because he was meant to be back at work that day. He took that week off. He had to do everything. I could do nothing. I was bed ridden and I’m not a good patient. Having worked on the other side of things for so long I’ve always known I’m a bad patient, but it was, I found it very hard. Because yes, he had to do everything and I just had to sit there.

Luckily once I was back breastfeeding, at least I felt I could feed the baby. That was one thing I could do, because when he wasn’t, when I wasn’t breastfeeding for those few days, I couldn’t even go and make him a bottle. So I felt totally useless. At least when I was breastfeeding, I thought that’s the one thing I can sit here and do. So I felt like I was doing something positive really.

But I think after [husband] went back to work at the end of that week my Mum was back from holiday and thank goodness she was, because it was about two weeks we went there, pretty much every day to their house, and they just had to look after me, and [son] and when [daughter] wasn’t at nursery, look after her. So [husband] could go back to work. Yes, because I couldn’t do anything really. It was very disabling.

But as I said, two years on the go, now, I don’t tend to something that’s in the past you tend move on, because I have young children. I can’t dwell on it. My leg, you know, there were issues in the beginning that I couldn’t it has changed my life. I stopped driving for starters. And I was a woman who would get in a car and drive myself everywhere and my children to all their clubs and, and you know, it became a really complicated life for my husband who then had to do that. We did get a car that was adapted, so that I could drive it, but I think, I built up such a fear of having to drive with my, with my other leg and worrying that I wouldn’t be, I did, I went for assessments and I took driving lessons and I just got a phobia about it and I think had somebody spoken to me about things, you know, a counsellor after I come out of hospital, it might have helped me get some of my anxieties out, you know, in that sense. And you know, so my whole life is walking everywhere. I walk an awful lot.

But you know, our lives changed a lot from, from you know, from what a simple, you know, from what we thought was a simple birth. I mean my husband now has to drive the children to all their activities, which he’s always complaining about [laughs] that’s his main hang up.

But yes, we try to move on. As I said, I now walk everywhere and with a brace life is, you know, life does carry, you know, carries on as normal. You know, we weren’t entitled to any help or anything with [son] benefits or anything. They said that at the time when we applied which was just after I could walk with aids so that didn’t entitle me to any help whatsoever. I couldn’t even get a blue badge for parking the thing, and you know, I, at the time, I really did struggle with walking. You know, I was walking with crutches and you know, I couldn’t push the pram. I couldn’t, if I walked around the block you know, I would have to turn round half way with my Mother, and come back, because I couldn’t physically doing it was in, I was having such bladder problems and things.

But you know, two years down the line, you do, I have, I’ve just got on with it. You know, my leg is there. I have a brace. I now go to [place] every, once a year and they assess my leg. Not as to what’s wrong with it, but the I see somebody to get a brace. I have a simple brace, but he sees if I’m eligible to get new one every, because it is a simple one, so they need replacing. So I go and see him once a year and he assesses if I’m able to have a brace. They don’t assess you know, the improvement in my leg or whatever. It’s just whether I’m eligible for those things.

But you do you just get on with it, and you know, I’m very lucky that [second daughter] is okay. She, you know, she was, it was very difficult taking care of her after. She suffered from colic and she couldn’t poo or anything. She would go for a week without it. She didn’t sleep. We couldn’t take her. You know, she wouldn’t lie in her pram. She wouldn’t sit in her car seat without screaming perpetually and I couldn’t do anything. Me and my Mum would come, came and stayed with us to help me out and you know, she would have to take [second daughter] out into the garden for hours to try and calm her down. Because I couldn’t physically do those type of things.

And there are some things that we would have to consider. We’ve been on holiday to New Zealand and Canada in the past, we automatically assumed that we would go back as a family and that at some stage we would do kind of safari thing probably when the children were teenagers and could appreciate it.

And they might be things now that we’d have to rethink about because I’m not so high risk that I’m on medication all the time, but I am a high risk and it comes down to the fact that that kind of thing is a choice in life and you have to just decide is that choice worth it, or do you just say, Look you can go when you’re adults?

And the clotting factor is a genetic factor. So I had to warn my brother that he had to bet tested. He has two children so they’ll have to be tested when they reach adulthood. Our children will have to be tested when they reach adulthood.

Hm.

But in a way, they’ll have a head start because they’ll know whether they’re predisposed to it or not. So apparently it’s very unlikely that that would affect them until they hit puberty so they don’t have to be tested until they’re sort of late teenagers. My daughter would have to know because you can’t take the pill. So that is a life style choice. So she’ll have to know before she gets to puberty really whether she’s got to have the test. She might have it earlier than the boys will.

But I don’t think we’ve changed much about how we do things or how we live just day to day. So on a very practical perspective, we already had wills in place to make sure that the children were covered if anything happened to either or both of us. So we just make sure they’re properly up to date. There isn’t anything on the medical side that I have to do on a day to day angle. So

I think other things in life have made me appreciate me things more, so I think other people’s near misses are things that happen to other people, sometimes hit home more than they do to yourself. So a very close friend lost her son very young, and I think actually that’s probably made me appreciate my children more than the fact that I had a near miss. So I think other things in life come into play and you can’t pick out certain things in isolation, yes.

I do sometimes think and I’ve not done it yet, and I would like to, that I should write letters to the children.

That’s sounds really nice idea. Yes. Do you want to take a moment are you all right.

[Starts to cry]. Don’t like to say it out loud. I don’t know if I’ve avoided doing it because it would make it seem more real that something might happen.

Anyway we don’t talk about things much, so you kind of think all these things in your mind, but you don’t actually say them out loud and I think sometimes that makes it actually seem more real and that you should. Oh

So in lots of ways your near miss, the knowledge that you’ve acquired as a result of your near miss has, is weighing on you and is affecting?

It probably is because it is just something that’s there now. Yes. And I think it’s not necessarily the near miss, it’s the fact that, it’s combined with the fact that it wasn’t an isolated thing. It is to do with the fact I have a genetic predisposition. Yes. So it, I think having the Factor V was probably more. It, it was always there and