Cate

Age at interview: 41

Age at diagnosis: 39

Brief Outline: Cate was pregnant with her third child. During the pregnancy she developed placenta praevia, so had a planned caesarean. Three and a half weeks after the birth of her daughter, she developed a pulmonary embolism.

Background: Cate is an IT project manager. She is married with three children. White British

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Cate was pregnant with her third child, she was 39. Her two previous pregnancies were straightforward. She had her first son in hospital, and her second was an uncomplicated home birth. However, scans revealed that she had placenta praevia during her 3rd pregnancy. Doctors monitored her through the pregnancy, and told her at 33 weeks that the placenta had shifted and she would need a planned caesarean. She appreciated the certainty after weeks of watchful waiting, and was allowed to go on holiday (in the UK) on the understanding that she kept an eye out for any key symptoms. 

 

She went in for her caesarean on a Monday morning and her daughter was born without complications. She found the calm and control of the operating theatre very strange, and felt a lot of discomfort from the operation. She stayed in until the Thursday and was then discharged home. She did not feel terribly well over the next few weeks but had lots of family support with relatives staying and helping out. 

 

After 3 ½ weeks she developed her pulmonary embolism. It was a hot summer day and she had been on an outing to a National Trust property with her family. When she developed a pain in her back in the evening she thought it was just a pulled muscle. She slept on it but by the Friday morning asked for a doctor to come out and see her, as she couldn’t move from the pain. As she was outside their watchful two week period after an operation, they did not rush to see her, but told her to take her pain medicine and see how it was in 24 hours. It was worse, so she was sent to Accident & Emergency. As it was a weekend, the scan team were not working, but doctors put her on Fragmin (dalteparin) just in case. The pain eased over the weekend, yet when she was scanned on the Monday, although the clot had started to dissolve, they were convinced that is what she had had. She was on Fragmin for a week and then on warfarin for 6 months, managed through her GP. Subsequent blood tests have revealed that she has a blood clotting disorder and so is at high risk. This knowledge, and the risk she is now at, is something that concerns her, although she is grateful for the knowledge. It was only between weeks five and six that she felt that she might be well/strong enough to drive and manage the three kids on her own. She and her husband feel that their family is complete, so other children are not a concern, but doctors told her she would be at high risk if she did want another child.

 

Cate went back into hospital with her newborn while doctors investigated her pulmonary embolism (a blood clot in the main artery of the lung). They were cooped up together, and bonded well.

And do you feel that the sort of ups and downs of those weeks affected your relationship with [daughter] and how you bonded or…?

 

I think, I remember my Mum making a joke when I came out and saying, “You’re either going to come out loving that baby or hating it after being cooped up for four days together in a tiny room.” And, I did bond really well with her. And I bonded really well and really quickly with my first son, and I had the same kind of thing again with [daughter] and I didn’t so much with my middle son which is strange when you think he was the easiest birth and at home and of all the three he was, they were all very, very similar pregnancies, but he was the one who felt different. And he was a much more squirmy child, and he’s the one who was awake at stupid times in the night, and he was a much more demanding baby, and she as a character is very easy going, and we actually kind of call her magic baby, because her natural waking up time is eight o’clock in the morning and the other two are up at sort of 6-6.30 and she’ll just lay in bed till we get her up some days, and only very recently, in fact the last fortnight she’s started getting up about 7 and I think that’s because she’s more attuned to them being around now. She’s about two and a half now. And she’s just been a very happy character and a very easy going baby, and I think actually that probably had more to do with it, but it was nice to have the time with her, and its lovely to have the boys around and they would have been out during some of the day anyway, but I don’t think it certainly didn’t have an adverse effect in any way. So, I don’t think… No I don’t think it probably did. I think even if I’d had her normally she would have been that kind of relaxed person. Yes.

 

A couple of weeks after her caesarean Cate developed pain in her shoulder. After a couple of days she went in to A&E to rule out a chest infection. She was later diagnosed with a pulmonary embolism.

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,

Cate took warfarin for 6 months after her pulmonary embolism. She had to have frequent blood tests until her GP decided on the correct dose to give her.

That went on, the GP I only saw a couple of times. They’ve got a really, lovely practice nurse and she’s from South America, and my step Dad takes warfarin, so I’d already met her, I already knew her from taking him in for some of his appointments. And we were really regular visitors at first, because they couldn’t get my levels stabilised. And I said to her at the time, “Look, you’re used to dealing with older people who lead a really sedentary lifestyle. And who do what they’re told.” And I changed all the diet things you’re supposed to do and my levels were still up and down like a yo yo, but I don’t think they ever have people who are breastfeeding and active, and she started putting me on what they called normal doses and I was having to go back twice a week at first to have my levels checked and I think probably for about the first four weeks I was in there twice a week and they just couldn’t get it stable and in the end she said, “This is a massive dose.” And I said, “Personally I know I’ve got a really high metabolism, anything I eat as soon as I move, I can burn it off, quite well. I drink loads and I’m breastfeeding and I’ve got active children and I’m on the go all the time. I think I’m just burning the drug off a lot faster, then perhaps other people might.” 

 

And I had to take warfarin for six months, so this was from the July to the January and I think it was about October, November when they got me really stable, and I could go for four or five weeks between appointments just for the last few until I came off, and then you can’t stop taking warfarin immediately, you have to scale it down bit by bit as well. So I think I might have taken the last doses into February 2011 the following year. No 2010 sorry, just because it takes so long, it takes three or four weeks to actually come off the drug completely.

 

And what were the foods that you had to avoid?

 

They give you a really long list. Lots of things like broccoli, spinach, and I’m vegetarian and eat loads of those [laughs]. Cranberry juice can interfere with it. Anything that’s high in I think its Vitamin K can have an effect on the levels, red wine, so if you have a glass of wine, you can’t have that. Cabbage. So lots of all the really leafy green veg which actually make up quite a high part of our diet, and it’s to do, you’re not supposed to have them at all, but the nurse was very good and very practical and she said in the end. “Just don’t have them the night before you come for your test.” Because warfarin is all about an average level as well. So actually managing the drug is to do, you have different doses on different days, but it’s to do with getting that average coming through your bloodstream.

 

So she said, “If you need these things in your diet then have smaller amounts at very regular intervals.” So don’t have a big plate where you have spinach and broccoli at the same meal. Have one don’t have them the next day, then have the other one, then don’t have something the next day. So it is very much a balance in trying to sort of get that fine line of how you can control it. Yes.

 

Her PE meant that Cate has discovered she has a hereditary blood clotting condition (Factor V Leiden) for which other family members have had to be tested. This discovery hangs over her now.

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

Cate was told that any more pregnancies would be very high risk, but it did not concern her as she felt her family was complete.

I think we were at quite a lucky stage where we were, because a lot of the medical staff, like when you have your six week check and things like that, they phrase things differently. Because we were on our third child, and because I think of my age, I was in my late thirties, they would say, “Is your family complete?” And when I said, “Yes.” I know there was very obvious nurse said, “Oh good. Because…” She said, “We would pretty much be telling you it would be. Even if you weren’t sure.” So because I would be such high risk again if you’ve had one placenta praevia you’re at high risk of another, and then I’d be at high risk again going through the pregnancy and the operation. And I subsequently found out that Factor V Leidens is a high risk pregnancy condition, at least you’re at high risk of miscarriage. So, all in all everything together with that medical history now, would point to the fact that to have more children would be very high risk for me. But we were lucky, because we’d already decided that that was it for us and, you know, our family was finished. We were staying with three. We are already outnumbered [laughs]. Three’s enough.