Pre Eclampsia support

For Women & their families who have suffered with Pre Eclampsia, Eclampsia, HELLP syndrome, Pregnancy induced hypertension (PIH) and related conditions.
 
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 Feeling really betrayed, hormones or justified??

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chelle
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Age : 44
Location : Northern Ireland

PostSubject: Feeling really betrayed, hormones or justified??   Tue 13 Jul 2010, 5:49 pm

As some of you will know I haven't been feeling great at all. I have so much fluid I can barely move my fingers at times. I have had a plus of protein for weeks now, pain in my chest area and taking funny turns where my vision is disturbed and I get very dizzy. My kidneys really hurt and there is little output Mostly though my bp has been good with the medication although according to my home bp monitor it does peak at times. When I go to the hospital though it's always ok. I ask every time how the placenta is and being told it's nice and smooth etc.
The last time my community midwife came she sent me to hospital as she felt there were just too many signs. I went and was treated really badly. The midwife in charge of the dou kept asking what I had been sent to them for. She said that I should never have been sent with a bp as good as it was or with any less than 3 pluses of protein.
On Friday I saw a gp who said although my bp was only just over the 90 (bottom is 92/94) mark he felt I should be monitored by the hospital. He sent me up but seeing there was a 4 hour waiting time and the same midwife was in charge I ended up coming home. I was just so anxious and scared that she would be really horrible when she saw me back again with only 1 plus of protein.
Anyway the community midwife came on Sunday and really feels all isn't as it should be but again bp was ok. She asked how my placenta was and I said they always say its ok. she asked did they write anything in my notes and I said I didn't know, she opened the notes and said 'right ok' I asked what it said and she said my placenta is at grade 1. I asked what that meant and she said' well there is up to grade 4'. I asked was there a grade zero and she looked at me and said 'how did I know you would ask me that'?. She then admitted that there was a grade zero and that it meant that my placenta was showing signs of deterioration. Why did no one tell me this? I know they don't want to stress me but why lie to me? Now I don't know what is real and what isn't. Reading up on P.E last night I read that if you have a steady small amount of protein and a bp which is only moderately high with some of the other symptoms than there is a chance it is P.E. Yet the Dr's keep telling me everything is fine. I have felt for so long now that things weren't right and now I can't even trust the medic people when they tell me it's all ok. I just feel so scared and lost.
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Liz Pidgley
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PostSubject: Re: Feeling really betrayed, hormones or justified??   Tue 13 Jul 2010, 7:25 pm

Hi Chelle,

Im so sorry that you are having such a rough time.
Had you thought of printing out the PRECOG and DAU guidelines to show this MW? It very clearly explains the framework. Again it says that a diastolic BP of above 90 is clinically significant. Plus 2 or more of proteinuria is clinically significant not plus 3.

Also, did you have any PE bloods taken or know the results?

I suspect you are going to need to have a bit of a tantrum in the DAU f they dont take you seriously. Ask to see the consultant in charge and dont take no for an answer, or accept the registrar. Or perhaps consider a more formal complaint?

Do feel free to call me if you need to chat. My number is 0845 241 0989 Im usually around 11am-3pm although am not around after 2pm tomorrow.

Warmest wishes
Liz


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chelle
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Age : 44
Location : Northern Ireland

PostSubject: Re: Feeling really betrayed, hormones or justified??   Tue 13 Jul 2010, 7:57 pm

Hi Liz,

Thanks again.

I have a very good and thorough community midwife but as I am having so much care through the hospital she doesn't really see me. She actually phoned me on Sunday morning and said I had been on her mind for the last two days and could she call out. I think if I hadn't been going to the hospital on Thursday shed have sent me up again. She's not happy about the swelling and consistent plus of protein and along with the spiking of bp at times/visual disturbance she just feels something is going on.

The night she got me to go to the hospital my bp was at 138/84 so it wasn't really up iykwim. Still I think the attitude was really bad, I am now afraid to go to the d.o.u.

I see the consultant or registrar every other Thursday and my bp is taken by the practise nurse every other one.

When the community midwife sent me up on the 22/June , and I was eventually sent to a new midwife on delivery (the dou closed at 9) suite they did do bloods which all came back as normal. Things have got a lot worse since then though. I just feel in my gut that all these things mean something. I dont want to have P.E but more than that I dont want to have undiagnosed P.E. If I get nowhere on Thursday I will definately look at printing out a lot of this stuff. I am not very assertive but can't bury another baby.
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alka
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PostSubject: Re: Feeling really betrayed, hormones or justified??   Wed 14 Jul 2010, 9:08 am

Chelle, I couldn't read and run. Hunny, Liz is completely right, you need to push them and push them. I'm so sorry you're having such a hard time and I understand you aren't naturally assertive, but do you have anyone who is, ie: Mum, Mum in Law (they're usually very good at this stuff) - sometimes it helps if someone goes with you and does the shouting for you, that way you can let someone else get worked up on your behalf, goodness I know both my mum and mum in law would be raising the roof for me if I were in your position right now. I'm so sorry that you are having to fight for the very best care and treatment for your baby, in fact, very similar happened to me when I was expecting my son, I ended up changing hospitals 2 weeks before I was rushed in, best thing I ever did - not that I'm necessarily advising you to do this. You are a mummy and you're proctecting both you and your unborn baby, there's nothing more important right now than that.

Sending you positive thoughts and huge hugs.

Lots of love
Nic x
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Liz Pidgley
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PostSubject: Re: Feeling really betrayed, hormones or justified??   Wed 14 Jul 2010, 12:14 pm

Hi Chelle,

I agree with Nic.
It is difficult to be assertive sometimes especially when you are worried and not at full speed emotionally.
If there is someone who could go with you to the appointments its would be an idea to ask them. As equally as they can advocate with you, there is also another person to hear what is being said. When we are so frightened its natural to miss bits of the conversation or misinterpret what has been said.

The professionals need to remember, given your history, they need to look after the emotional you as well as the physical you. Dont let them forget that either.

Wishing the beastly PE stays away and you good health.
Liz

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chelle
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PostSubject: Updated   Wed 14 Jul 2010, 5:46 pm

Hi all,
Well last night I went to bed and within half an hour I woke up with terrible pain under my ribs and was feeling very very sick. We took my bp which was 168/ 117. I had a trace of protein but hospital were very concerned and wanted to send an ambulance.

i went to hospital (by car) and bp was very high and the protein had gone to two pluses. The pain and nausea was very bad but then in the middle of the night suddenly the bp started falling, eventually going to 98/64. The proteinuria went to a trace and pain and nausea subsided. The consultant said I am a bit of a mystery that having all these signs that change so suddenly is strange. I actually feel like I am going mad myself. They done lots of bloods which came back ok, the baby is stiill a good size, plenty of fluid etc so they have allowed e home. Have to have the midwife doing my bp twice a week and as I've had full scan etc they've cancelled tomorrows appointment and given me one for next Thursday.

The consultant did say that she doesn't think I'll ever see term but she is hoping to buy me a few more weeks. No one seems to understand why I keep developing all these symptoms very suddenly and then for them to just disappear. One way or the other this is def the last baby though or I will go mad!
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Wendles
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PostSubject: Re: Feeling really betrayed, hormones or justified??   Wed 14 Jul 2010, 10:11 pm

Hi Chelle,
At last now they believe you. I do hope this horrible condition stays away and gives you some more weeks. Stay strong and don't be afraid to keep ringing the hospital when things don't feel right.
Thinking of you and sending lots of positive vibes.
Wendy

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