Immune/NK cells pred thread #34

@MC8 I tend to agree with you. Bloody stupid question, in my view, asking you if you want to continue with the pregnancy! What is wrong with these people! On the scan and waiting front, the NHS have their protocols and tend to follow them to the letter. All somewhat over the top sometimes so sorry you are having to suffer the consequences if their rules. I remember a lady on a forum a while back who suffered an early MMC but had to wait seven days for a rescan to confirm. When she went back they found a second embryo but also without a heartbeat and made her wait another 7 days to confirm non viability on that.
it’s a ridiculous tick box exercise sometimes so sorry you are dealing with it hun xx

Hey ladies, hope you’re all ok and sorry this is a bit of a rant, but I’ve been stewing all weekend about my experience at the EPU on Friday.

They called me to come in last minute on Friday morning. I had the scan and as I thought they might (but hoped they wouldn’t), they said I needed to come back for another scan in 7 days before proceeding with next steps.

They said they didn’t accept private scans, this was protocol etc but I could speak to a dr/nurse afterwards to see what they say and if they might be able to do things differently considering my history.

Eventually I spoke to a doctor, who asked me to recount my interpretation of what was happening. I said it’s not viable, too small etc - ie. what I’d been told from both scans, it’s another loss, this has happened to me many, many times before and now I want the erpc as soon as possible so I can get genetic testing done and move on.

Then the dr to me - ‘so do you not want to continue the pregnancy?’ I feel like I’m going mad but is this not a completely wild thing for her to say?? I was taken aback and asked why she was so confused, of course I want to continue the pregnancy, I wouldn’t be going through all this if I didn’t want a pregnancy, but as it’s clearly not viable this time again, I want to have surgery asap so want them to consider accepting my private scan alongside the NHS scan, or not waiting a full 7 days for a re-scan because I can’t risk anything happening naturally before then. Dr S would not have told me to stop taking medications if he thought there was a chance it would continue!

Anyway, she said she’d speak to a more senior consultant and call me back to let me know if they could make an exception. She called back and said they couldn’t - scan would have to be minimum of 7 days later as the scan was inconclusive but ‘the good news is you don’t have any symptoms’ 🙄🙄🙄

Sorry this is so long and maybe I’m overthinking but I just can’t get over what she said, I think it’s so inappropriate. Xxx

So pleased @Jecca88 that is great news. The scans are so stressful at every stage.

@Jecca88 I’m so, so happy to read your update - just the best news!! Hope you can relax a little this weekend xx

@MC8: Absolutely gutted to hear your news... Sending you lots of love at this time. I really hope CRP can identify what happened, whether they need to amend the protocol or not, and whether there is something else at play.

@Jecca88: That's wonderful, and wishing you well for the rest of your pregnancy! Do have a relaxing weekend...

@MC8 There are just no words, I am sending you a huuuuge hug which doesn't help but I hope the next bit isn't drawn out for you 😘

@Jecca88 Congratulations, this is lovely news ♥️Enjoy the now, you are pregnant and take it day by day 🥰

Much love to all 💓

@Jecca88 oh darling sooooo happy for u!!! I hope u feel a bit relieved and looking forward to more great updates on your baby miracle 🌈

@Jecca88 So happy to read your update, brilliant news! I can relate so hard to the racing heart and the pre-scan anxiety, it's mentally and physically exhausting! I hope you can relax for the weekend at least and enjoy this happy news. One big milestone: done!

Hey you lovely lot. Thank you so much for all the well wishes, you’re all so incredible sweet and it helps to know I have your support.

Just had our scan - and they have a little flickering heartbeat and sac, pole and yolk sac all look in the right place. We are still early and potentially around 5-6 weeks. It provides some relief, they want to bring me back in 10 days to properly date it. I actually couldn’t speak before the scan - my heart rate was 128 the entire morning.

I am going to try and relax for the weekend. They advised me to stop the aspirin - due to my browny discharge.

@Jecca88 I pray it goes well today darling ❤️Thanks for explaining things to me! 🙏🏽

@Hopeandfaith1990 I’m so with you there. Everything crossed @Jecca88 xx

@pagey23 @Objectiontime @Hopeandfaith1990 @Fletchasketch thank you so much - I’ve found this thread so useful for sharing info and experiences and feel it’s good to keep public so it helps others in the same way, but I do find it hard to keep up and follow sometimes, though maybe that’s because I don’t use the app? I would be up for joining a WhatsApp group though if someone started one.

@Jecca88 I’m in Herts - this is my 2nd loss with CRP. I’ve had genetic testing twice before (including my first loss with CRP), both times come back normal. All natural pregnancies, although before starting with CRP we did IVF with pgta and got 5 embryos but none suitable for transfer, which I still think is a bit weird because they looked good prior to testing. The first loss at CRP was at my 8 wk scan, furthest we ever got and first time we had a heartbeat. For this one they increased pred to 25mg and added in hydroxy. Definitely, definitely need to get it tested this time too. If this is also normal I’ll be wondering and asking dr S if something else is at play along with the immune stuff. Still waiting for a call back from EPU to even go for a scan which is not boding well that things will be prompt this time and stressing me that things might start to happen naturally before I get surgery, but I just can’t bring myself to pay for an MVA at CRP. My husband is away at the moment too which is really bad timing - he had travel for work and we’d planned that if my test was negative this cycle I was going to join him and have a short holiday and break for the next cycle. If positive then stay behind, and although we obviously knew this situation could happen, we’re both feeling a bit sorry for ourselves that the worst case scenario has come to pass. Wishing you all the luck and strength in the world for tomorrow, I’ll be thinking of you. Xx

@MC8 you are in my thoughts today, I hope you were able to get a bit of sleep last night and are being well looked after.

I've had similar thoughts to you @Hopeandfaith1990 about having a WA group, but agree it's helpful to be able to dip in and out of this without constant notifications. The information and stories in this thread and the many previous ones are the reason I kept going and went for more tests when it felt hopeless, and so if it helps others to keep it public then I think that's a really positive thing.

@Jecca88 all my fingers and toes are crossed for you for tomorrow. Very best of luck x

@Jecca88 Will be thinking of you tomorrow with prayer and hope your scan goes well xx

oh @MC8 in so sorry to hear this. It’s so unbelievable really and there are no words. Hope your EPU can pull its finger out - where are you based - try and even get the pregnant tested? How many losses have you had with the CRP now? My first two with them were empty sacs and it just made no sense and then I took inofolic and added in the pred and that’s when I saw my first heartbeat - we lost that one due to trisomy 21.

sending you loads of love. I am dreading my scan tomorrow for this exact reason. we are all such resilient women - and if I have got through it before I can do again. Well that’s what I keep trying to tell myself.

Oh no, I'm so, so sorry MC8. Really sad for you. It is absolute crap and totally unfair. No words really cover it do they. Just sending you virtual hugs, Not helpful really in any way but wanted you to know I am thinking about you hun xxx

Hi all, sorry I’m new-ish to this thread and a bit rubbish at keeping up with it but I just wanted to say that I’m so sorry to hear your very sad news @MC8 - take care of yourself during this time and we are all hear to chat. I’ve had two miscarriages in three years of trying to conceive, 9 must be excruciating to deal with. Sending you lots of love at this time

@Fletchasketch thank you so much. It’s really crap, like you say I just want the next bit to be over with asap so I can start the countdown to test results and hopefully some answers... or not. My epu is a bit hit and miss so we shall see. Xx

@MC8 I’m so sad and so so sorry to read your update. Finding out at a scan is just the worst and my heart goes out to you. Useless as it is, I’m sending you a big hug and if you ever want to chat to someone who knows the experience a bit, just say. I hope the next bit is as quick and straightforward as it can be xx

Hey, so unfortunately my scan didn’t go well today. No heartbeat and the sac was misshapen. I can’t believe this is happening again. Well I can, because it’s all I’ve ever known, but just I don’t know how I’ve got to 9 losses now and how I can keep on going. Waiting to hear back from epu to go for another scan and then book in for an erpc etc. Hopefully I don’t have to wait too long, but you know how it is. I’m so, so tired of all this. Xx

very good wish for your scan tomorrow @MC8