Support and information after multiple miscarriages thread

Toooldforthis

Thank you xx

skintchick

Cleo, I found this blog post and wondered if it might be helpful.

www.barrengoddess.blogspot.com/2009/04/understanding-translocations.html?m=1


As for me, I've had a real fight to get my missing result from St Mary's. In case you've forgotten the saga, I went for my result son October 16, when I was told that as I'd had one positive and one negative result for anti-phospholipid syndrome (another blood clotting disorder) I needed a third one to rule it either in or out. So that same day I gave another sample of blood, but instead of making an appointment to go in three weeks later, I asked Mr Aziz if I could call up for it and he said I could email.

So, I emailed three weeks later and was told it wasn't ready. I chased it a bit later and was told that I couldn;t have it, but instead I could get my GP to write in and they 'd write back to him and then I could go and see my GP and get my result.

I said no, I won't do that, I still have an outstanding request with you from my GP for details of the anaesthetic I had from you (incidentally I have never had an answer to that) so I want it direct.

Then they said it wasn;t ready and they'd be in touch.

I left it a bit and tried again. Same answer - it's not ready.

I asked why not. If I'd had an appointment for three weeks after Oct 16 then it would have been ready for me on that day, so it should be ready now, therefore either it was lost or the sample was lost, but we needed to sort it out.

I chased this before my pre-op, before my op and now I have just last week chased it again.

Last week I was told a doctor would call me the next day (Friday). I didn;t hear so I contacted PALS at the hospital who contacted 'a manager' and escalated it for me.

By Thursday this week I was furious not to have heard anything so I phoned the clinic, but I got the answer machine. I left a message saying I wanted a call back by 3pm or I was going to email a compaint to PALS and Professor Regan (who runs the clinic).

At 3.20pm I phoned and left another message saying I was sorry but as I hadn;t got a call I had been left with no choice but to escalate it to an official complaint, as I really need my result.

I wrote and sent a long email.

At 4.20pm I got a call from the clinic asking me exactly what result I was after! I had to go through the whole thing again, with the same person I had originally emailed ALL the details to! Argh!

Anyway, she said I'd get a call from the doctor as soon as she came in that evening. Of course I didn't.

But I did get a call at 8am today. We had a ten minute chat, which I really appreciated because I'm sure she hadn;t really the time for it. It was Polly Katsafarou and I really wish I'd seen her in the first place.

Anyway, she was apologetic, and explained that it was possible that my sample had been lost, or even broken at the lab! She said she did have a result from a test but it was for lupus, which I didn;t need testing for as it had already come back negative.

We did have a big chat about the APS result, and she said she would double check that the result wasn;t lurking on the lab computer, as apparently they've been having system trouble with the lab computer and the clinic computer talking to each other.

Then she explained that what Mr Aziz had told me about the treatment for APS was wrong! HE had told me I would need 150mg of aspirin from 34 weeks if I had it. She said that's not true and had I misunderstood him, because 34 weeks is way too late!

She said actually beause I have FActor V LEiden I'd already be on the treatment they'd use for APS, because it is the same treatment. She said additionally when I get PG they will do a TEG test on me and if it's positive then I'll be on 150mg of aspirin from about 6 weeks.

They did already do a TEG test which was negative but apparently for some women it can change in pregnancy, so they check again when you are PG.

~We left the conversation as me needing to decide how I wanted to proceed. Did I want to leave it and not find out about APS, assuming my result was lost, as the treatment plan would be the same, or did I want another test and to know for sure because obviously having APS would further increase my risk of DVT and pulmonary embolism.

I was just pondering this, because of the logistics about my feet, and would it be advisable to go on Dec 28 when I'm supposed to be resting, or on JAn 2 and possibly miss ovulation and therefore a whole other cycle.

And then the phone rang and they'd found my result on the lab computer and it was negative!

Seriously, it has been such a rollercoaster. I'm so glad it's neagtive as there was no way I could get a retest without risking either my foot recovery or my TTCing!

But it is so crap that I had to chase and chase and fight and threaten and complain to get it! If they had checked with the lab in the first place I'd have had the result weeks ago.


I'm also now very wary of Mr Aziz, as either he doesn't know what he's doing or he is incapable of explaining it properly. I always repeat back and clarify what I'm told, and I wrote it down, so I'm certain I didn;t make a mistake, but if I didn't then he did, and that is worse!

I hope I don;t have to see him next time. I may even email Prof Regan and say that. I'd love to see Dr Katsafarou, she was so nice, really understanding and explained everything and was just lovely. Exactly what you want in a doctor.

Phew! Well done for reading all this! So the upshot is I have all my results, I can TTC next cycle (cos I'm well enough to DTD lol) and hopefully I will soon be pregnant.

I know nothing is guaranteed and things can still take time or go wrong, but at least I can now look forward instead of back.

How is everyone else doing? What's happeneing for all of you?

How is everyone planning to cope with Christmas?

Jox

Gosh skintchick that is so frustrating, it takes the absolute p*** waiting so long and being given the run around, like this situation isn't stressful enough!

Maybe Mr Aziz said 3 to 4 weeks and it sounded like 34.

Anyway, I would request the change of doctor if I were you, this lady sounds more on the ball and sympathetic.

SusanC_2

That sounds terrible skintchick. I had trouble getting my posnatal followup appointment after my third loss and ended up telling them that I'd bene mistakenly sent some of the results and that I was worried because of that before I got one but that's nothing compared to the runaround they've given you. It does sound like it might be worth asking to have Dr Katsafarou instead although I don't think you are entitled to specify who you have. You are however entitled to specify who you *don't* want to have so if they wouldn't give you Dr Katsafarou you could still say you don't want to see Mr Aziz.

skintchick

Jox wrote: »

Gosh skintchick that is so frustrating, it takes the absolute p*** waiting so long and being given the run around, like this situation isn't stressful enough!

Maybe Mr Aziz said 3 to 4 weeks and it sounded like 34.

Anyway, I would request the change of doctor if I were you, this lady sounds more on the ball and sympathetic.

I wondered about that but you don't find out till you are 4 weeks at least do you, so it can't have been. I'd even asked him to speak clearly and slowly because at my first appointment I couldn't understand 85 per cent of what he was saying!

Yes, Susan, I think you're right, I'll probably have top say "I don't want Mr Aziz" rather than trying to opt in to someone specifically. Usually you just see who ever is free next in the clinic, but I think I will ask not him because either he is rubbish or I don;t hear what he says properly, we are just not a good combination!

The PALS lady did ask me if I would give her a full and detailed account of what I've been through when I feel ready, so once I've had a baby I'll give her a full write up and she can take it from there.

The clinic needs to be run better, and treat people better, so I'm happy to help that happen but not by risking being treated as a troublemaker while I'm pregnant.

esb83

Hi there all
Thanks Skint chick for group info.I just wanted to pop along and say hi.
Myself and my husband have been ttc for nearly 2 years had my 3rd miscarriage in July at 14 wks baby died at 9wks.(Could of have happend a lot sooner but I didn't wanna take the drugs offered.I was in denial)

I am sorry to here of all your losses:(

Esxxx

skintchick

Hi again

You don;t need to explain why you didn;t want a medically managed miscarriage, sweetie, we've all been through it in different ways on here. I always birth my babies at home, so, like you, I declined the drugs and waited for those that had died to be ready to be born. Others of mine the first I knew was when I started bleeding.

I don'tt know how much you know, but when the baby dies and is not born for a while, it is called a missed miscarriage, that's what you have just had. I don't know if it helps to know what it is called.

Would you like to tell us about your losses? You don;t have to, but if it would help, then you can. It's a safe space here to talk, it's obviously anonymous and it's up to you how much you share.

How are you feeling right now?

I know on your other thread you asked if it is worth TTC again, but you also talk about your desire to have a baby with your partner. How is he coping? Is it the TTC or the losses that are making you question how to proceed?

Sorry to ask questions, I'm just trying to help you work through things a bit, you don;t have to answer them on here, maybe just think about them with your partner.

esb83

Hi Again Skintchick

I don't know a great deal regarding miscarriage.I have only looked in to it a little bit as I find it difficult to read tbh.Ive read mostly regarding type1 Diabetes and the complications which can be arise because of it during pregnancy.(as Diabetic)

My first two miscarriages happened at 6 weeks the first I knew was when I started to bleed.
Was feeling upset last night so had a chat with hubby about it all.He says he's coping.That we will conceive when the time is right.I m trying to adopt his positive attitude.Thou I am struggling as I suffer from depression.

I think It's particular hard at present as I was due at Christmas and as it's a time for friends and family.

We have decided to continue ttc but I now realize I have too for self preservation learn to be more patient,hopefully sooner rather than later we will have a healthy pregnancy and have the child we long for.

Good luck ladies ttc fingers crossed for you all.xx

Sagaris

esb83 wrote: »

Hi Again Skintchick

I don't know a great deal regarding miscarriage.I have only looked in to it a little bit as I find it difficult to read tbh.Ive read mostly regarding type1 Diabetes and the complications which can be arise because of it during pregnancy.(as Diabetic)

My first two miscarriages happened at 6 weeks the first I knew was when I started to bleed.
Was feeling upset last night so had a chat with hubby about it all.He says he's coping.That we will conceive when the time is right.I m trying to adopt his positive attitude.Thou I am struggling as I suffer from depression.

I think It's particular hard at present as I was due at Christmas and as it's a time for friends and family.

We have decided to continue ttc but I now realize I have too for self preservation learn to be more patient,hopefully sooner rather than later we will have a healthy pregnancy and have the child we long for.

Good luck ladies ttc fingers crossed for you all.xx

I feel for you esb - my sister was diabetic and had many miscarriages, but eventually went on to have 2 lovely girls. She had a very good team looking after her, it wasn't easy but she got there in the end - I'm hoping you will too. My nieces are now aged 17 and 14 and there have been advances in ante natal diabetic care since then - wishing you luck! x

esb83

Sagaris wrote: »

I feel for you esb - my sister was diabetic and had many miscarriages, but eventually went on to have 2 lovely girls. She had a very good team looking after her, it wasn't easy but she got there in the end - I'm hoping you will too. My nieces are now aged 17 and 14 and there have been advances in ante natal diabetic care since then - wishing you luck! x

Thanks Sagaris
I am hoping too also.
I know the team quite well at my local hospital.As been a inpatient too many times there.