Women’s future health after pre-eclampsia

Some women we talked to had longer-term health issues and concerns related to their experience of having had pre-eclampsia or HELLP syndrome during their pregnancies.
After they had recovered, several women were left with questions about whether their history of pre-eclampsia or HELLP syndrome in pregnancy put them at risk of developing other health conditions in the future. Emma’s doctor told her she could be at risk of high blood pressure and strokes later in life, although cause and effect was unclear: ‘she was saying she didn’t know whether that was because of the pre-eclampsia or a pre-disposing factor that caused pre-eclampsia and stroke, increased stroke risk’. Because of the increased risk of blood pressure and heart problems in the future, women who have had pre-eclampsia or HELLP syndrome are advised to see their GP on a yearly basis for health checks. A few women had been given advice by their doctors about ways to reduce these risks, such as keeping their weight in the ‘healthy’ range, stopping smoking and exercising regularly.

Olivia wasn’st sure whether having had pre-eclampsia in her first pregnancy means she is at risk of other blood pressure or heart conditions in the future.

Age at interview 32

Gender Female

Age at diagnosis 28

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And have you got any unanswered questions about your future health or your son’s health in relation to pre-eclampsia?

I’m worried about whether or not I’m at a higher disposition to have blood pressure problems through life, because my paternal grandad died at fifty seven from a heart attack, and it was kind of said, “Oh he was under a high pressure job,” and all this but actually heart problems seem to run in my family because my dad is now under investigations and he’s just been given beta-blockers. I mean I try my best to try and stay healthy. I go to the gym; I look after myself as best I can; I don’st smoke, I don’st drink you know. But what risk am I at because my blood pressure escalated so badly during pregnancy what are my trigger factors I don’st know.

Because I’ve always stayed away from hormonal contraception because of the heart risk related to some of those brands. And now they’re coming out with that there is a blood pressure risk and all this associated with one of the pills, and I’ve just stayed well away. I was on Depo when I was younger. I was on Depo when I was 16; I was on it for about three years and I gained loads of weight. I don’st know what my blood pressure was like; I think it stayed normal but you know it’s like, yeah, what risk am I at as a result of this?

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Whilst many symptoms or signs of high blood pressure problems had settled down in the days, weeks or months after giving birth, some women found there continued to be health problems.

On-going blood pressure problems

Some women found they continued to have high blood pressure for a long time after giving birth. While for some it settled back down eventually, others found that their blood pressure lingered as slightly higher than before the pregnancy or remained quite high. For some women, this meant adjusting to the realisation that they might always have high blood pressure. Betty doesn’t feel there has necessarily been an ‘endpoint’ as her blood pressure is still a bit high and instead she’s aiming for a time when she’s ‘made peace with it’. Some women we spoke to had pre-existing high blood pressure (hypertension) before they became pregnant; Vicki and Aileen returned to taking the blood pressure medicines they were on before becoming pregnant.

Angela knew that she might continue to have high blood pressure. She didn’st want this and was very reluctant about needing to take medicine long-term.

Age at interview 36

Gender Female

Age at diagnosis 34

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I just really didn’st want to take tablets.

I don’st know if it’s because I was in the profession, I don’st know, something was just in me that didn’st want to I don’st know, it was really strange why I didn’st. And then at that point then I was on tablets which then I didn’st mind, but then it crept in again, you know eventually I was like when people did say, you know there might be a chance that actually you might end up, you know there’s a varied school of thought, you might end up with high blood pressure kind of forever, or this might just pass and, you know we don’st know again we don’st really know why but some end up on blood pressure tablets for the rest of their life, and I was just like, ‘I really hope it’s not I’m going to do my upmost I don’st know why because what I think I can do you know apart from, you know normal diet and all that, but I’m not going to be on blood pressure tablets.

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Liver, kidney and lung problems

Some women found their pre-eclampsia or HELLP syndrome had affected their liver, kidneys and/or lungs, and there were sometimes ongoing health issues with these organs. Six months after giving birth, Claire was having ongoing liver problems. She was waiting for an MRI scan which she hoped would give her some answers as to whether the problems would stop or ‘are these now just side-effects that I need to live with?’ Hanna’s doctors were investigating her ongoing shortness of breath, although she’s not sure if this is related to the pre-eclampsia problems she had in pregnancy. Other times, issues did resolve. Kay had kidney problems during her pregnancy and was told in hospital that they may not recover; it took four months, but eventually her kidney function was back to normal.

Kay was told that she would be on blood pressure tablets permanently and that her kidneys would not recover. Both improved after a few months.

Age at interview 42

Gender Female

Age at diagnosis 38

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And they said to me, you know, “You’re probably going to be on blood pressure tablets for the rest of your life,” and I was like, “Well that’s quite funny because I always had quite low blood pressure before,” do you know what I mean? He was like, “No you’ll be on these for life I think.” So I was on them and then they monitored obviously my kidneys and they took a while to repair and recover from that.

That was sixteen weeks after before they said, “Look, you know you’re sort of back to normal now.” Because at that time you’re still thinking, ‘Are these ever going to work again; are they right?’ because they were talking dialysis and is that going to happen?

And then they did the monitor. They kept taking my blood pressure, it was still high.

And I said to them, “Look this is because I’m stressed because I’m coming in here because I’m worried about it being high.” And she said, “Well what we’ll do is we’ll put the 24 thing on you,” superb and over the 24 hours I went back down to 90 over 60 or something, so it had went back down to where it should be which is where it always was. I think now I sit about a 110 over 90 so nothing compared to what I was and I’m not on any medication now at all.

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Emotional upset and anxiety

Several women talked about there being a lasting emotional impact from their experiences of high blood pressure problems. Some felt traumatised by what had happened and found going back into hospital, such as for check-up appointments, very difficult. Several women said they became very anxious about their own health and often the health of their children. Angela started having panic attacks and worried about her health, suspecting at one time that she had blood clots. Often this worry was based on their past experiences of feeling that medical professionals were not listening to their concerns or acting on them. Paige said her experiences with pre-eclampsia have made her take her health much more seriously and sometimes automatically thinks ‘the worst’. You can read more about the lasting emotional impact of pre-eclampsia or HELLP syndrome here.

Fatigue

A few women thought they were much more tired than is normal after having pre-eclampsia in their pregnancies, although it was not clear whether it was linked or an unrelated health problem. Hanna continued to feel very fatigued and tired for many months after having her daughter. Kay felt similar and thought this could be to do with iron deficiency, which also affected her eligibility to be a blood donor.
There were a few other health concerns which women thought might be related to having had high blood pressure in pregnancy. Paige said her eyesight had deteriorated and she sometimes had black spots in her vision, similar to those she had as a symptom of pre-eclampsia. Although not caused by high blood pressure problems in her pregnancy, Hanna found out through her emergency caesarean section that she has a ‘bendy throat’. This was discovered when doctors tried to insert a tube down her throat to help her breathing as part of the surgery under general anaesthetic. Julie had appendicitis diagnosed a little while after giving birth; she had some pains in the same location during her pregnancy and wonders if the appendicitis and pre-eclampsia were linked or if it was ‘just really bad luck’.

Kay said blood donation was especially important to her now because her baby depended on this to survive. It was upsetting that she can’st be a donor while she has low iron levels in her blood.

Age at interview 42

Gender Female

Age at diagnosis 38

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And all of a sudden my iron levels, my ferritin, is not very good, and I’ve always been a blood donor, always since I was 17 and I’ve been rejected now.

It’s not anaemic low but it’s not enough to give blood which is quite worrying.

More so because Imogen had five transfusions and I feel that it’s funny I’ve always given blood because my mum needed blood transfusions having my brother and my younger sister. And I’ve never and you pick up a leaflet and you see a new-born baby needs a teaspoon of blood, you know and I used to think, ‘Why, why would he need blood; prem baby why would a prem baby’ obviously now I know or my prem baby is what. And I just think to myself now, ‘I’ve been that mum,’ and they’sve said, “We’re going to have to give her blood transfusion.”

And I’ve sat there and thought, ‘Thank goodness there’s blood donors. You know and I am one of them. So now giving blood is more important to me than ever because I know there’s a mum sitting somewhere with a little baby waiting on that blood.

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Hanna wasn’st sure if it’s related to having had high blood pressure problems in her pregnancy, but she has had some ongoing health problems and was diagnosed with supraventricular tachycardia (SVT) a little while after giving birth.

Age at interview 39

Gender Female

Age at diagnosis 37

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After the initial weeks, for the first pregnancy, yes, I had so many different, I got really painful headaches afterwards, really painful headaches and then I developed painful feet. In fact, so much so that the doctor referred me to at the hospital and they still don’st know what’s wrong with my feet and I’m not they sent me to the rheumatology department and they said I don’st have any rheumatoid or arthritis or anything like that. In addition to that I felt very fatigued. In fact, a few, after a few months afterwards, I was very, very tired all the time and the doctor, I kept seeing the GP and I kept saying, I’sve changed my diet and I’sve changed this and I’sve changed that and yet I don’st feel much better. And he kept taking bloods, after bloods and nothing. So to actually make myself feel better, I felt I was being, perhaps maybe because I was a new mum and I was staying at home, I wasn’st really, I wasn’st exercising that much and I was in that much pain with the caesarean my daughter and I was bent over in pain so much that I didn’st feel confident enough to start any exercise immediately. It was only after a few months that I started doing some exercising. It was only then, when I actually developed a shortness of breath, really and I thought, you know, I was being unhealthy so I continued with my exercise routine thinking okay, I’sll come back to normal soon. One of the assistants in the gym, said to me, That’s not normal. You are really, really breathing really fast and it’s not normal. Maybe you should go to see the GP. So I went to see the GP, Doctor [name] and I remember I said, I feel shortness of breath and, in fact, I feel it even when I’m at rest sometimes. And he wasn’st happy with that so he requested a 24 hours ECG to so they did it at the GP, attached it to me and went home, had it for 24 hours, went back, took it, came back a week later for the results, went to see him and he said, We’sre not happy with the results that we got from the ECG. Your heart rate is just very high and so we’sre going to send you to the cardiology department for a referral. So that’s where we’sve been so I was diagnosed with what they call a SVT.

Okay.

I don’st know if it’s related to my, what I’sve had previously but.

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Many women said that their doctors hadn’t really talked to them about any lasting impact on their health as a result of having had pre-eclampsia. As Olivia explained, ‘nobody ever really told me about it’.
Discussion of the future health impacts on women who experienced high blood pressure problems in their pregnancies often linked to the question of whether they wanted another pregnancy in the future.

Betty described a meeting she had with a consultant about her own health. It was mostly focused on whether she would want more children in the future.

Age at interview 38

Gender Female

Age at diagnosis 37

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And can you tell me the advice you received about your own future health?

Yes. So, the consultant, as I mentioned, she’s a pre-eclampsia expert, and when the time came where I could ask her any questions I did ask about second pregnancy and whether I was likely to have this again. So she answered a lot of my questions; she gave me some great resources in terms of websites and said feel free to drop her a line if I wanted to have another session with my husband to talk to her about the second baby. I mean she did ask me what my age was and when I was planning to have another one, and when she heard my age she said, “Oh I think you might want to start as soon as possible, within the year.” I’m pretty sure she said within the year, but then at the same time I’m not sure whether that is what you’re supposed to do if you have had a c-section; I think you’sve got to wait at least a year. So, I don’st know, it was it could have been you know terminology or the fact that she was just focusing on my age [laughs].

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