Immune/NK cells pred thread #34

[Hopeandfaith1990]

Hi all, started a new thread as the old one was full. Not sure if this is the way to do it but I've c&p'd the list of people on the previous one as much as poss:

Old thread here: https://www.mumsnet.com/talk/conception/5228367-immunenk-cells-pred-thread-33?page=40

@Jecca88
@Gizmo1983
@Deerdancer34
@Objectiontime
@SWMum9
@TammyinCork
@Newbeginnings22023
@Fletchasketch
@Morgan236
@CarpeDiem75
@ALittleLight
@MC8
@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

@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

@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

Holding your hand today @Jecca88 💕💕💕 Wishing you all the luck in the world.

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

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

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 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!

@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 🌈

@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 💓

@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...

@Jecca88 the best news, this made my day 🩷🩷🩷🩷🩷 hope you have a good sleep tonight xxxx

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

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

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

Oh my lovely. That’s so awful I’m so sorry. I’m quite a tolerant person but I am livid on your behalf and I’d 100% be making a complaint about the doctor. They are supposed to be trained and well versed in what to say in the EPU and your experience is so far from acceptable. it’s an extremely sensitive area of medicine and this person sounds like an ignorant twit.

really sorry about the process being dragged out by a private scan, I have been through that before and the waits are horrid. Sending a hug xxxx

@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

@MC8 I'm also livid on your behalf, what an awful experience. I agree that you should absolutely be making a complaint about the way this was managed and how you were spoken to. In terms of the protocols, it's true that they are very strict about this and for good reason. My understanding is that if the embryo measures less than 7mm CRL, then they need to rescan as it may just be too early. Sadly I don't think there's any way round this. I am so sorry that the EPU have made a horrible experience even harder.

@MC8 The manner of some of these doctors is outrageous. They are very stuck in their protocols but the manner should be so much more considered and empathetic when working in this area and especially with your history. I am so sorry and furious... I remember one doctor with my first miscarriage asking if I had even been pregnant and then another at a Recurrent Miscarriage Clinic saying they wouldnt give steroids to their nearest and dearest...it made me feel so so livid and let down but also you just want some care and to feel looked after, not to feel you have to fight... Deep breath. Can you ask for a second opinion...could try pestering them? Sending you lots of love, we're here for you💓

@Hopeandfaith1990 thank you - yeah they seemed young and inexperienced, so I think it's ignorance and all that, but just such a stupid thing to say! More training definitely needed...

@Objectiontime @Fletchasketch You're right re: protocols, I did expect it, but just finding it frustrating. They didn't make me do a second scan back in Spring, but I was a bit further along that time... Her comments were more what upset me really. Because I'm so used to going through this I think I can come across as quite matter of fact when I know what I need on the practical side, so maybe they respond accordingly?! Not that that's an excuse. But I have found that the more this happens the less I'm looked after by everyone (nurses, friends, family etc). With my first miscarriage everyone at EPU was so lovely and sympathetic (even though looking back their expectant and then medical management plan was pretty traumatising that dragged it out for months). Now I just feel like a lost cause and everyone, including me, is bored of it! Though to be fair CRP were great last week. I think I will try and complain when I'm next in the EPU, because they need to be aware this isn't ok.

@Deerdancer34 aghh I'm so sorry to hear your stories too - absolutely maddening! Asking if you'd even been pregnant - WTF!?! Very bizarre stance on steroids from a Recurrent Miscarriage clinic too... what did they suggest instead? Don't tell me 'keep trying!' It's just so unnecessary. Reminds me of one time I had to fight for my GP to prescribe progesterone as I was having difficulty getting hold of the recurrent miscarriage clinic - they said it was a waste of time and didn't do anything anyway...

xxx

@MC8 I am sorry and I don't think there is any excusing the NHS for your experience, anyone working for the the EPU would have had full training. I would have liked to say you've been unlucky, but from the sounds of it it can be quite hit and miss. I'm sorry you're feeling like a lost cause, and really hope that the CRP can provide some reassurance in that regard.

Now this may be a silly suggestion, but depending on where you are in the country, could you try another hospital? Perhaps it's not worth it now you're in the system, but I had a positive and caring experience at Kingston which is all any of us deserve, so some hospitals are clearly better than others. I am sending you a hand hold and hope you get some proper support soon.

On a completely unrelated topic, does anyone have any experience with gestational rhinitis? I've been sneezing frequently over the past few days and now have woken up with a sore throat. I guess it's not that surprising with all the drugs, but very rarely ill so it has thrown me a bit. I have emailed the nurses too so will see what they come back with.

@MC8 Tbh the RMC were f*ing useless, told me just to keep trying... I went back a year later to see if I could get steroids and progesterone because the senior consultant had told my GP they do give it but I need an appointment. Unfortunately the consultant I saw was just not having any of it even though I kept saying the senior consultant said you do give steroids etc. By that point I was with CRP and I just felt so broken and lost because the RMC wouldnt help, so I just decided to stick with CRP, at least there I had a plan and some actual care. I sort of wonder what their job is at the RMC...but I think it really depends who you see...its such a blooming lottery which is unfair and unnecessary too. These drugs are so cheap too, it wasnt like I was asking for an expensive procedure. I always have felt I pay my taxes, this is the first time I've needed help and I have been denied it. Anyway , sorry you got me on a rant!
Please do complain when you have the strength. So when are you next in? Just giving you the biggest hug, this is so so crap 💓

You are so right about the fact that they absolutely need telling! I complained strongly to the hospital when I had my second early loss and the midwife on the phone said "Well, if you will test so early......". I was absolutely furious. I told her that I needed to know early because of the steroids and really had a damn good go at her.

@MC8 im so sorry this is your experience. I totally get what you mean about the more miscarriages you have the less empathy we get. I can imagine your so exasperated by it all. How can they not read your notes and know to be super sensitive to you. When are you going back? Are you hoping for a D&C? how are you feeling? Is your husband back yet?

Sending lots of love to everyone 😘

I have been feeling super rough since my scan on Friday and had more of the brown discharge - pretty much every time i wipe. No cramps, but i have had so many missed miscarriages, i am just super conscious of this and that it can happen at any time.

I have actually booked in a scan with EPU tomorrow - to see if they can date me and see if there is still a heartbeat. That way i might cancel my follow up next week with CRP as don't want to have to pay for unncessary scans and then if all goes well - just go in for my 8 week scan and intralipids with CRP. I am just so anxious and just feel like i am existing/surviving. Work has been super busy and stressful and had some full on days where i am having to put on a brave face without feeling like i want to collapse. I think i should maybe just tell my boss after tomorrow with either outcome.

@Jecca88 So sorry you are having a horrible time hun. Will be thinking about you tomorrow hun x

@Jecca88 Good luck today, crossing everything for you 😘 Deep breaths 💓