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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 APEC consultant

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Bens_mummy
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PostSubject: APEC consultant   Tue 26 Aug 2008, 3:10 pm

Hi all,

My son was born at 32 weeks due to PE, this was my first pregnany. Me and my husband are thinking about trying again for another. I went to see my GP who said she would refer me to an APEC consultant. She had no idea about APEC and said she would look into it and make sure she refers me. I was wondering if I need to obtain my medical records to take with me? If so, how do i go about that? Also, how long does it usually take for the APEC appointment to come through? I live in the West Midlands, does anyone know where my nearest consulatant would be?

Thanks for your help

Gemma
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Bell
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PostSubject: Re: APEC consultant   Tue 26 Aug 2008, 6:48 pm

Hi!

Liz will be able to send you a list of APEC consultants.

I know when I went to my appointment the consultant had already obtained my medical notes from the hospital I had my wee boy in.

Bell.
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Nicki D
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PostSubject: Re: APEC consultant   Tue 26 Aug 2008, 8:38 pm

Hi Gemma,

You can contact the hospital where you had your son and they have to send you your notes - it's best to start with the records office, they can tell you how to make the request. They can make a charge per page for this, but it is capped at something fairly reasonable from what I remember when I had my little boy. You will need to request your notes and your son's notes.

After you get your notes, you may want to go through them with a midwife, as they are pretty unintelligible! There was a lot in mine that I didn't understand.

My APEC consultant appointment came through fairly quickly, within about 6 weeks I think, I saw Sue Sellers in Bristol. I'm not sure who your nearest would be, but Liz will be able to advise when she gets back from her holiday.

You're doing the right thing, getting as much information as possible up front. It will help to make the decision.

Keep us posted on how you get on.

Take care,

Nicki
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Bens_mummy
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PostSubject: Re: APEC consultant   Wed 27 Aug 2008, 1:56 pm

Hi Nicki,

Thank you for the information I shall contact the hospital and get that sorted.

Can anyone give me some idea what to expect from seeing the APEC consultant?


Thanks again

Gemma x
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Nicki D
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PostSubject: Re: APEC consultant   Wed 27 Aug 2008, 5:44 pm

Hi Gemma,

When I saw Sue, she went through my notes with me to make sure she understood my case. I was there for about an hour discussing the whole experience. She went out to ask questions of other specialists when she didn't know the answer (particularly one question about nucleated red cells - related to the Haemolysis in HELLP), and she took about an armful of blood to do a load of tests for auto-immune and clotting disorders (often related to PE/HELLP but not in my case...).

She then made recommendations for any future pregnancy, including taking aspirin from very early on (she left the choice of exactly when up to me, but said it would need to be before 12 weeks), having a doppler scan at 22 weeks and then making a decision as to whether I would be considered high risk (seen weekly thereafter) or low risk (seen fortnightly thereafter).

She also suggested having dipsticks at home to measure my own protein levels and having more regular blood pressuree checks.

We have now decided not to have another child, but this was not to do with any of the information I got from Sue. If you are thinking about another one, I really do believe that the more you know the better - it's a cruel fact, but all of us affected by PE/HELLP have lost the blissful naivete associated with 'normal' pregnancy - we none of us will ever 'sail through' with images of the perfect pregnancy, but we can get the best information possible, and know that we are being looked after in the best possible way.

Take care,

Nicki x
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HayleyP80
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PostSubject: Re: APEC consultant   Wed 27 Aug 2008, 8:02 pm

Hi Gemma,

I saw Prof Redman in Oxford and he was wonderful. I'm not sure who is your nearest but Liz will probably be able to help with that when she comes back off holiday. I think the waiting times to see the specialists vary. We did wait quite a while but I think it depends on who you see.

With regards to the notes, I took a copy of mine as my memory is so terrible. I don't think you need to but it can't hurt. My hospital did charge a fee but it wasn't much.

I would advise you take a list of the questions you have, I took one for me and one for the Prof. I knew if I didn't my mind would go blank as soon as we got in there.

My hospital don't routinely test for Factor V Leiden ans Thrombophilia but Prof Redman did these so it might be worth asking if you haven't had these checked.

Based on my notes he also made recommendations for future pregnancies which really helped to put my mind at ease. We were so nervous going to see him but it was one of the best things we did.

Do let us know how you get on.

Love
Hayley xx
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Bens_mummy
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PostSubject: Re: APEC consultant   Thu 18 Sep 2008, 11:44 am

Sorry to be a pain again, but how long did everyone wait for their appointment to come through? I went to see my doctor 7 weeks ago now and still haven't heard anything, if this normal? I understand some appointments can take ages, which is fine, but i was just wondering?
Also, does anyone know where my nearest consultant would be? I live in Shropshire.

Thank you for all your help

Gemma x
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Liz Pidgley
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PostSubject: Re: APEC consultant   Thu 18 Sep 2008, 12:53 pm

Hi Gemma,

I would ask your GP practice (reception should be able to do that!) to whom she actually referred you and then contact the Consultants secretary directly.

My geography is awful but Im guessing your nearest would be Nottingham, Liverpool, Manchester or Leeds.
I will email you the current list so you will have all the contact details if necessary!

Do keep pestering them though!
Best Wishes
Liz

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Bens_mummy
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PostSubject: Re: APEC consultant   Thu 18 Sep 2008, 2:33 pm

Thanks for the email Liz. I called my GP's surgery and the receptionist told me I've been referred to the consultant based in Oxford! That's quite a way from here, there are a few closer, I think? The receptionist said I got referred on the 26th Aug, even though I saw my GP a few weeks before that. Anyway I shall hopefully recieve the appointment soon Smile

Thanks again
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Liz Pidgley
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PostSubject: Re: APEC consultant   Thu 18 Sep 2008, 8:36 pm

Hi Gemma

It sounds like you have been referred to Prof. R.in Oxford.
He is lovely but does have approx a 3 month list at the last check. Having said that his secretary is lovely so I would give her a call anyway! Oxford is a bit of trek but I suspect the Prof will go through your last pregnancy with you in detail & look for the pivotal moments. He will probably do a whole list of blood tests too before suggesting a care plan for any future pregnancy. Your care would then be taken over by your local trust following the agreed plan & with support from him if necessary.
(The door is generally left open to go back if you need to.)

I hope this helps.
Best Wishes
Liz

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Bens_mummy
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PostSubject: Re: APEC consultant   Mon 22 Sep 2008, 5:21 pm

My appoinment has been arranged on the 21st Oct, in Oxford with Dr Lucy Mackillop, I thought it would be Professor Redman i'd be seeing? Anyways, thank you all for your information, i'm glad the appointment has finally arrived Smile
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Liz Pidgley
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PostSubject: Re: APEC consultant   Mon 22 Sep 2008, 9:59 pm

Now you are in Oxfords 'system' you can ask them to swap consultants. Its not usually a problem if its the Prof you would prefer to see.

Liz

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PostSubject: Re: APEC consultant   Fri 07 Nov 2008, 8:08 pm

Just a quick update, I went to see Dr Lucy Mackillop a few weeks back. She was great and answered all of our questions. She said I have 40% chance of getting PE again. She took 9 tubes of blood to test for all sorts of things to see if there is any underlying reason to why I got PE so severe, she said if any of the tests come back positive then obviously the risk of getting PE again will be much higher.
She advised I take asprin as soon as I find out I'm pregnant again and have a high calcuim diet. I've heard lots of people talk about taking asprin, but never heard of a high calcium diet? Has anyone else been told this?

Anyway, my husband and I are very positive about trying for another baby, fingers crossed the vile condition won't strike again! Smile

Thanks for reading

Gemma x
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PostSubject: Re: APEC consultant   Tue 11 Nov 2008, 3:01 pm

Hi Gemma,

Calcium has been linked to women with previous experience of PE. For some, usually those who have a low calcium diet are prescribed supplements. However, for most of us, simply increasing our dietary intake is good enough.

I have found this link which shows the latest thinking about Calcium & PE.

Calcium supplementation for the prevention of pre-eclampsia.Kumar A, Devi SG, Batra S, Singh C, Shukla DK.
Department of Obstetrics and Gynecology, Maulana Azad Medical College and Lok Nayak Hospital, New Delhi, India.

OBJECTIVE: To study the effect of calcium supplementation during pregnancy on blood pressure and maternal and neonatal outcomes. METHOD: A total of 524 healthy primigravidas with a blood pressure less than 140/90 mm Hg were randomly assigned between the 12th and 25th weeks to receive 2 g of elemental calcium or placebo and were followed-up until delivery. RESULTS: The incidence of pre-eclampsia was significantly less in the calcium than in the placebo group (4.0% vs 12.0%; odds ratio [OR], 0.31; 95% confidence interval [CI], 0.15-0.63); the mean systolic and diastolic blood pressures at study completion were different in the calcium and placebo group (P=0.007 and P=0.02). The risk for preterm delivery was less in the calcium (7.0%) than in the placebo (12.7%) group (OR, 0.51; 95% CI, 0.28-0.93). The mean baseline calcium intake was 313.83+/-203.25 mg/day (range, 85.71-910.71 mg/day), which is lower than the recommended dietary intake of 1000 mg, and the 24-hour urinary calcium excretion was 130.82+/-67.44 mg/dL (range, 40.5-387 mg/dL). CONCLUSION: Calcium supplementation appears to reduce the occurrence of pre-eclampsia and preterm delivery in primigravidas who have a daily dietary calcium intake less than the recommended dietary allowances.

PMID: 18851852 [PubMed - as supplied by publisher]

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alka
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PostSubject: Re: APEC consultant   Wed 12 Nov 2008, 9:47 am

Hi Gemma, everyone!

I have to say I found this really interesting regarding the calcium, as I am the first to admit I have a terrible calcium intake. I can't stand milk, or yoghurt or anything that tastes remotely "milky", I do have cheese but not on a daily basis. I recall my husband trying to get me to drink milk throughout my pregnancy but I just couldn't stomach it.

It does make you wonder does'nt it.

Nic
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Nicki D
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PostSubject: Re: APEC consultant   Wed 12 Nov 2008, 3:57 pm

Nic,

Me too! I *hate* milk with a vengeance - I did try really hard to eat yoghurt every day when I was pregnant, but I didn't eat nearly enough as I don't really like that either! I can't stand cheese either...

I did start taking calcium supplements when I was about 24-26 weeks (when my midwife found out how poor my intake was!) but I'm guessing that any damage would already have been done by then as my first signs of PE were at 28 weeks when my BP rocketed!

Interesting...

Nicki x
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Bens_mummy
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PostSubject: Re: APEC consultant   Wed 12 Nov 2008, 9:54 pm

Hi Ladies,

Yep, i'm exactly the same, not a big fan of dairy! It is all very interesting. I think i'll ask my GP for calcium tablets as I know i'll really struggle trying to get enough calcium in my diet. Nicki, did you take the tablets up until the end of your pregnancy?

Gemma x
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Nicki D
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PostSubject: Re: APEC consultant   Wed 12 Nov 2008, 9:58 pm

Hi Gemma,

I did take them to the end, but the end was 33 weeks for me. I think I started taking them too late probably.

Good luck with trying for the next one! Very Happy

Nicki x
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PostSubject: Re: APEC consultant   Thu 13 Nov 2008, 9:26 am

Morning!

Very interesting...

I would definitely also strongly consider taking a calcium supplement as well now, this has really got me thinking.

XX
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