Clare

Age at interview: 34

Age at diagnosis: 34

Brief Outline: Clare gave birth to her second child without any complications but developed pains in her legs a couple of weeks after the birth. She had developed a clot in her leg, and was given injections and put on warfarin for several months to remove the clot from her legs.

Background: Clare is an occupational therapist. She is married with two children. White British.

More about me...

Clare had a good pregnancy with her second child, and the birth went fine. Everything went fine until two and a half weeks after her son was born. She had osteopath appointment and began to feel some pain in her leg. Over the next four days the pain gradually got worse, although she thought at first it was the aftermath of her osteopathy. On a Sunday night the pain became unbearable and she called out of hours doctor who suggested she go in to hospital. By this time her leg was swelling, a funny colour and hard. 

 

At the hospital they scanned her and told her she had a clot the length of her thigh. She was given Clexane (enoxaparin) injections and then put on warfarin to start to break down the clot. She was upset by the lack of information about breastfeeding on the drugs. She had established feeding well and was devastated to have to stop. She and her husband had to panic buy formula on the way home and start feeding baby with a bottle, which was very stressful. 

 

She asked her GP and health visitor to find out about the drugs and breastfeeding and was told two days later it was safe to breastfeed. But her baby was so hungry he fed constantly and she landed up with thrush, blistered nipples and had to use a nipple shield. She was house bound, in a lot of pain for several weeks. She was able to feed her new baby, but do little else and needed help and support from her husband and parents. The pain lasted many weeks, and during the interview (eight months on) her leg still did not feel right. She stayed on warfarin for four and a half months. 

 

Clare described the symptoms of the DVT she developed in her leg two weeks after birth. Her calf was red, hard, swollen and very painful.

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.  

 

Clare was taken off the warfarin after 4 1/2 months but would have liked a scan to reassure her that the clot in her leg had gone. Warfarin made her feel dizzy and lightheaded.

I guess, for me, it would have been peace of mind, having another scan. I guess if I really pushed for it, I could have may be got the GP’s to have referred me. But, it was, I was told it wasn’t standard practice. So even the GP seemed very much like, well we assume it’s gone. You know, so even, I don’t think … Or I remember seeing one GP, she was like oh don’t they scan anymore? So I think for me having another scan at some point would have been quite helpful, may be, before I came off the warfarin, to say yes, the clots gone, yes you can come off warfarin. It all felt a bit guesswork to me. You know. Which… well I guess I found it a bit of gamble coming off it. Sort of like let’s stop it and fingers crossed and hope everything’s okay kind of thing. So yes, I guess another scan would have been helpful.

 

No, it was four and a half months. Yes, it was sort of, I think it was somewhere around the 20th, 22nd January, that sort of date sticks in my mind. So it was about that. So it was about four and a half months I must have been on it for.

 

Were there any side effects of the warfarin that you were aware of?

 

Yes. I mean I’ve always got quite a low blood pressure anyway, which I know is quite good, but warfarin made me feel, well, I had very really quite low blood pressure when I was on it. Dizziness. I could be sitting there doing nothing and suddenly the whole room would spin. So yes, very lightheaded and dizzy which was horrible. It really was horrible. When you’re shattered anyway [small laugh]. You know, sleepless nights and all the rest of it. It made me, that feel, exacerbated that, yes, it didn’t feel good. You can, yes, and you bleed more easily and you bleed for longer. So I had to be very careful about any cuts and bruises and things. But I think that was probably the main, the main side effect was this sort of lightheaded dizziness really. Which wasn’t very nice. And I just had to endure it. There was nothing that could be done for it. It was just a case of.

 

I mentioned it when I would go for my appointments to have my INR check, I’d mention it and they’d say well, you know, everything interacts with warfarin, so anything you want to take could potentially affect it. And, anything could possibly be a side effect it seems, so the, I remember bumping into someone in town, who ran a, sort of like a playgroup that I used to take my daughter to, and she, she hadn’t seen [son] and she was saying, “Oh how are you? How are you feeling after the birth?” And I said, “Well, actually, I had DVT etc.” And she said that she’d had it after each of her children and she said that she felt very dizzy on warfarin etc. And that was the only, that’s how I presumed it must be the warfarin really, because she’d experienced it. So it was more by chance, and I found that very, reassuring because I was thinking, you know, they did some bloods to check I wasn’t anaemic etc.  So that was quite reassuring really when I just by chance talked to somebody who had experienced something similar.

 

Clare was wrongly told to stop breastfeeding for a few days when taking warfarin after a deep vein thrombosis. Her GP advised her that she could start again, but she felt the upset caused could have been avoided.

So it was quite an ordeal really. Because I obviously had [son] who was three weeks old and I was just sort of getting into the swing of things I suppose. I was enjoying being a lot more active because I’d found pregnancy quite hard work. This time I was much bigger and it was over the summer when it was hot, and I couldn’t be as active as I wanted to be with [daughter], so I was just got into the swing of it, and it was the day that [husband] was due to go back to work. So I was all psyched up for him to go back to work and everything and then this happened. So… I was quite emotional I think. And so by the time I saw the doctor who explained that I had DVT and that I needed to go on Warfarin, which I knew a bit about Warfarin because my brother was on it at the time, and, and I have worked with patients who’d been on Warfarin as well. It was quite hard to take it all in, and my main concern really was breastfeeding. I’d breast fed [daughter] and I was breast feeding [son] and it was going really well, and my main concern was breast feeding him on medication.

 

And I think this is the worst thing about the whole experience for me was the doctor I saw, she, she was quite nice, and I was in tears actually because she said I had to start of something called Clexane which is a fast acting anticoagulant that I had to inject. So I wasn’t too thrilled at the prospect of injecting myself. But also going onto the warfarin a few days later, she said that I couldn’t breastfeed on the Clexane. She said I’d have to speak to my GP about whether I could breastfeed on warfarin. So that for me was the worst thing about the whole experience was that suddenly I had this baby who I’d got to breastfeeding really well and I was suddenly out of the blue going to have to stop that. So I was really upset and, and she gave me literature to go with it, but I did find it very hard to take everything in. 

 

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 really… It was heartbreaking actually. Sorry.

 

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. And basically 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 wan

Clare was treated by her GP surgery and found it very difficult to get the balance right between...

Well after the day in the hospital I was basically treated from my GP’s surgery. I had no more contact with the hospital after that. Which at the time I was so relieved because my fear was being admitted and I thought I can’t be admitted because I can’t be apart from my baby. But having said that in some ways physically it would have been a hell of a lot easier in hospital. It was so difficult being at home with stairs and everything. And being an OT all I could see was all the adaptive equipment that I really needed, you know, I wish I could have prescribed myself all sorts of things. But… so I would then go… I was treated from the GP’s surgery and I would go in every few days initially so they could check my INR because they were trying to get the level of warfarin right. And I’d mainly see one of the practice nurses. So it was really me guiding my own treatment a lot of the time, as I felt able to do things. But what I found very difficult was getting the balance right between doing enough activity to try and get my circulation and things going. Because that’s what has to happen to clear the blood clot ultimately, but not doing too much to set myself back or to cause an embolism I guess. So it was very hard knowing if I’d done too much, too much, you know, if something was enough or… you know, it was very difficult, and it was really me guiding myself about how much I felt able to do. 

 

And there were probably days when I did too much, but then once you’ve got two children at home there’s no opportunity or very little opportunity to rest. And it was very hard for me to rely on other people a lot. Because I wasn’t used to doing that. So yes, there was no one really telling me what I should or shouldn’t be doing. It was just as the pain allowed really.

 

Clare found having to suddenly give her son a bottle very upsetting. Her GP did some research and discovered it was safe to breastfeed her son on the medication she was taking for her DVT.

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 really… It 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. And… basically 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. So… 

 

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. So… and I think that could have been all avoided. That made it all much worse. And then… when 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.

 

Clare found coping with her DVT in the early weeks “disabling” and needed lots of help from family.

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.

 

Clare’s GP was very reassuring and supportive in finding out if it was safe to breastfeed while...

Yes. Well the, yes, the doctor in the hospital made an appointment for me, said I needed to go and see the GP in a couple of days and probably to get my INR tested and start me on the Warfarin. I think that was the idea and find out… she said, “And speak to them about whether can breastfeed on warfarin.” 

 

We are very lucky we do have a very, very good GP practice actually. It’s a rural practice. It’s just outside [town]. And the GP I saw, she was brilliant actually. I know she’s got young children of her own. So I don’t know whether that helped in just me feeling I could relate to her a bit. But she was very sympathetic and she really… She was much less alarming than I found the doctor in the hospital. I found the doctor in the hospital scared me quite a lot. Which I knew it was a serious condition, so I didn’t really need any more scaring. And of course I said to her. She sort of said, “How are you? I’m going now. Are there any further questions?” And she, I said, “Actually can you tell me how big the clot is?” And so she went to get my notes, and had a look, and she said, “Look it is big. I don’t mince my words with my patients. This is very serious. It’s a very… I’ve seen bigger clots, but it’s a big clot.” 

 

So I found her quite alarming. I found the GP much more comforting and reassuring to be honest. And like I said it’s a very good practice. You can get appointments in a day, you know, if you need it. So we’re very, very lucky and I know a lot of people don’t have that.

 

But I didn’t see her very much. It was mainly my appointments were with the nurse. Just to go and get my bloods done and check the INR. So I didn’t see a doctor very often.

 

Initially I was going every few days. Then it was weekly. It was weekly for a long time, until it went to may be fortnightly. Because my INR levels kept changing all the time. They were, they weren’t very stable.

 

And do you feel like you saw enough of the doctors? Did you get enough medical support?

 

I suppose so. Because I had my post natal check as well around the time and I asked questions then. I saw one of the different GP’s. There’s a couple of female GP’s and I did make an appointment further down the line because I wanted to understand how warfarin worked. Not in the minute detail, but I remember being told in hospital you’ll be on it for three to six months and I thought, well how do they know if the clots cleared. You know, how can they say three months, or six months, how will they know how it’s progressing.

 

So I made an appointment to talk about it, and what I came to understand was, that it’s not about the clot you’ve had it’s about the risk of future clots. So the clot you’ve had, the fast acting anticoagulant has stopped that, and your body was clearing it. It’s really being on it so that, to reduce or minimise the risk of any further clot. So because they feel my clot was down to pregnancy I was low risk to have another clot probably, once the hormone levels had settled down. 

 

Was it the GP that ultimately found out for you?

 

She, bless her, she was very good. She spoke to a pharmacist for me, and she also spoke to a paediatrician for me as well. And the health visitors located, they had a book about… Mother’s Milk and Medicine or something it was called like that, but basically breast feeding and medication. So they located to that and looked in it for me as well. So lucky they both came up to me with the same

Clare found having to suddenly give her son a bottle very upsetting. Her GP did some research and...

Yes, so, it turned out I could breast feed 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. I think that could have been all avoided. That made it all much worse. And then when we found that I could breast feed it was great, but he went a bit frantic, so when I went back to breast feeding 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 breast feeding him without.

 

And I think if it wasn’t for the doctor misinforming me, I mean I think she should have known. I feel that could have all been avoided. And that was a very emotional time on top of what was going on and that made it an awful lot worse. So yes, I still breast feed him, which I’m really pleased I’ve been able to, because there was a long time I felt I wasn’t doing it properly because I was using nipple shields, but I still breast feed him, but I have to use nipple shields and it wouldn’t have been the way I would have wanted to go, but I still managed to do it. So that was the worst thing about the whole experience I think. Yes.