Immune/NK cells pred thread #34

Oh that’s really useful to know @Fletchasketch , I’m in Redhill and so Kingstons definitely close enough to self-refer to next time, if I’m lucky enough to get another positive. Thank you so much for that insight. I’m really sorry to anyone else who has had, or is having, a rough time. This is all such a lot. And congrats to all of the pregnant thread members 🩷 pregnancy after loss is also a lot xx

@Gems2811 unfortunately it seems like your experience is not uncommon based on what I've seen on this thread and it absolutely should not be the case.

I hope you find a hospital with a good EPU. I had two positive experiences (well as positive as it can be) at Kingston if you're anywhere near there, they seemed to be very efficient and all of the staff were kind. Best of luck.

Thank you for responding @Fletchasketch and I’m really sorry to hear that you’ve experienced the same. I’ll try ringing around other hospitals nearby. I really wasn’t treated very emphatically at EPU and so I’m dreading having to go back there 😔

@Gems2811 I'm so sorry you're going through this. A missed miscarriage is a horrible shock. I think a week's wait is quite standard, unfortunately. My last MMC was also discovered at 10 weeks, and the heart had stopped at 8 weeks. The midwife seemed to think that because I wasn't bleeding that it could still take weeks. Of course it might not. My hospital was able to carry out the D&C the following morning and so you might find another hospital has availability. I do hope you can get this resolved quickly, sending much love.

@MC8 sorry darling….there are no words…the whole process with the NHS can get soooo frustrating and hurt u even more…
how are u holding up?❤️🫂

@Jecca88 great news that u have seen again the wonderful heartbeat…trust CRP…NHS can be catastrophic sometimes…hope this time passes quickly so u can take a breath once u reach the 12 weeks ❤️🫂

Hi Ladies can I ask a question as I’m feeling a bit in shock and I don’t know where to turn, I was with Dr Shehata last year for about 6 months with no pregnancy but I had finally had a positive result after 3 years TTC and took my hydroxy, aspirin and progesterone on positive test and I have just found out at my 10 week scan with EPU that there is no heartbeat and the baby stopped developing at 8 weeks. It’s a missed miscarriage. I would like the surgical management option but the hospital can’t fit me in until next Friday, is a weeks wait usual? I feel a bit panicked that things will start before then as I have some trauma from a previous miscarriage. Does anyone know if we can ask to be seen earlier at another NHS hospital or is there anything I can do to get seen earlier? Thank you for any help xx

@Jecca88 very glad to hear your baby is still doing well.At least you have some explanation for the discharge. Just hoping it will be gone by the time you have your next scan, I think as a pp said they do often resolve on their own. I'll be in on Tuesday afternoon too for my NIPT so may well see you there :).

@MC8 I really hope today goes as well as it can for you. Will be thinking of you.

I spoke to the nurses at CRP and they said my results were completely normal side effect of all the pred, and the GP was happy with this so can avoid antibiotics for now. Starting to feel a bit more human today, suppose it's not surprising with the suppressed immune system.

Lots of love to all.

@Jecca88 Really pleased that your baby is still safely attached with their heartbeat, Thar is excellent news. I totally understand your worries but I know these bumps can disappear of their own accord so I am really hoping this happens for you and everything continues to go well.

@MC8 Will be thinking of you tomorrow hun xxx

@MC8 Sending you so much love for tomorrow 💗

@Jecca88 Ahhh bless you, its so exhausting. What did EPU suggest? Will they monitor you too? Buuuut, there is a heartbeat, just focus on that when its all getting a bit too much & try not let your mind spiral to all the possibilities, otherwise you'll feel utterly swamped. I know there's that fear after all our histories & its easy for me to say this but...you are pregnant 💓 Focus on the now for now & take each appointment as it comes...we are all willing you on 💪 Much love 💞

@MC8 hope the appointment goes well tomorrow. So sorry your hubby isn't there, these things are hard enough without having someone physcially there and having to take care of yourself. Have you made work aware? are you having time off?

Hey ladies, thanks again for the well wishes. Had the Scan this morning at EPU, good news is the baby has grown and still have a good heartbeat now measuring 6.4 days. However they found a subchorionic bump - which is very uncommon - just typical and can be link to an increase risk of miscarriage. This explains why i have had the brown discharge. I can't believe this is another thing to contend with. Nothing is straight forward. Spoke to CRP and have they have asked if i can still come in on Tuesday to review, nurses said not to worry and these things can resolve, but i can't help but spiral.

I go through the motions of manifesting but then also protecting myself and imagining the worst outcome. Sending love to everyone.

@Jecca88 so sorry things have been so rough for you, sending you so much luck for today. I also agree it's a good idea to tell your boss, it's such a heavy weight on you, trying to put on a front and hold things together, on top of everything else - so hopefully being open will lift that a little.

Yes I'm hoping for a d&c/erpc - the one with general anaesthetic! Going back tomorrow. I'm feeling ok - tired as I wean of the pred. I know it will only really hit me properly on the day of surgery. My husband is back this time next week.

@Objectiontime wow that is outrageous!! I am so angry on your behalf too - all these stories are enraging and depressing.

@Deerdancer34 I am always here for a rant! It's so unfair it's such a lottery - I'm so sorry your RMC was so useless, the main consultant at mine was good, seeing anyone else was a waste of time, but he was limited in what he could do within NHS parameters. I'm glad you found CRP. I wish I'd found them earlier. I'll see who I can speak to when I'm back tomorrow.

@Fletchasketch thank you - I could switch to another hospital, but I'm not sure if my history would be transferred as it's another part of the county, and i've read that they only take GP referrals, whereas where I go now I can self refer... in a way i feel comfortable sticking with where I am as despite all the issues I know it, and would have to learn the system in a new place if that makes sense!

So sorry to hear you're ill, I would think it's unfortunate side effect of the drugs lowering your immune system... did the nurses get back to you with anything helpful?

Sending love to all xx

@Jecca88 with you in spirit today, I would be feeling exactly the same. Agree with others on telling your boss. I told mine at 7 weeks and he was so lovely (having had 6 miscarriages with his wife himself might have had something to do with it) that it made me feel so much better and now I can be completely honest about all the appointments. Wishing you so much luck for today xx

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

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

@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.

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 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 💓

@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.

@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 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💓

@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.