Immune/NK cells pred thread #32

[VenusStarr]

Hi everyone. The last thread is filling up. Have tried to tag everyone who posted on the last few pages, but feel free to join / tag anyone I missed.

@Gizmo1983
@fleur89
@Sunflower360
@MotherOfShihTzus
@lozzmax
@HopefulH
@kea1990
@Sprinkleofbabydust
@Newbeginnings22023
@star2022
@RumandSpinach
@Ems123456789
@MamaW05

Love to all ❤️

@lozzmax wow - very similar - my MMC with triplets was in November too. I had a scan at 6 weeks with the clinic and they only saw One small sac and two days later i went to Kings EPU and there was three. The Sacs continued to grow but only two had yolk sacs in them. No HB detected and had a D and C with Kings at 9 1/2 weeks. I would recommend Kings EPU for extra tests and ops - obviously it doesn't cost anything which is a plus and they are very good doctors. I got quoted £2.5K for a MVA with the clinic and went with kings. Do you think you will continue with GCSF? or just try Hydroxy / Pred and Intralipids?

Also I have read somewhere that people only actually have the intralipds after they have conceived rather than pre-ovulation. Esp if its easy for you to concieve.

That's great advice, I could have got the D&C on my private medical insurance but it all just happened so quickly and I was in a blur. I had a follow up hysteroscopy on my private med though (I had some scarring - I had to push to get that seen to by another doctor, Dr. S didn't even suggest it which I think was a bit lax tbh, as it likely contributed to the loss I had afterwards). I have 5 vials of GCSF in my fridge so I'll probably continue it tbh. On intralipids, I haven't had them for every pregnancy at ovulation and I got told to follow the protocol... I am sceptical of them but then at this point I'm ready to throw the kitchen sink at it

@lozzmax of course - it always is such a blur and you just want it to be over with. How did you discover the scarring - did you just have a feeling?

I had a follow up with Kings recurrent miscarriage clinic who do standard blood tests and scans etc - but they said it was down to luck and couldn't find anything.

Does the GCSF have side effects?

Yeh the intralipids - i followed protocol to a T with both pregnancies with the clinic and i thought wow maybe they do work but now i am even more sceptical.

I am going to try for pred like you and hope for the best for next time. Such a horrible journey - i wouldn't wish this on anyone.

@Jecca88 well it was taking me a little longer to conceive than normal, and then I went to see an IVF doctor to get a second opinion and he suggested a Hyfosy which revealed something resembling scarring.

The GCSF gives me bad backache - my brother (who is a doctor) said that it's due to the creation of white blood cells in my bone marrow.

I don't think that many miscarriages can be down to luck, it just doesn't make sense. You were right to self refer to Dr. S. I hope we both get better news soon 🙏🏻

I am glad you went with your instincts. Did they say the scarring was caused by the D&C?

Oh yes I have heard about the GCSF - do you only have two vials every cycle? unless you get pregnant?

fingers crossed for us 🙏

Hello lovely ladies and welcome @Jecca88 . How’s everyone doing.
I’ve learned something interesting if anyone is doing ivf in the future we opted to pgt a. At the last minute as an after thought I asked the dr to let me take the meds to keep going in case we do a fresh transfer as if we only got one we were considering transferring. However after talking to the embryologist who is watching our eggs there is a decent list of standards the blast has to meet to be pgt a tested so if I hadn’t took the meds a weak embryo would have to be frozen if it was even freezable rather than popped back in. Just something to think about as I didn’t know this xxx
@VenusStarr how is the cross stitch coming on xxx love to you all xxx

Hello @Gizmo1983! That is interesting, and also strange that they don’t always give people this kind of context and info up front! One of the maddening things about this whole experience is how much more you learn from other people going through it than the actual medical professionals…

I’m ok, I think. Still testing positive with slightly darker lines each day and have had post test intralipids now. Have had a bit of spotting though which is never going to not be concerning and also my trust levels that a positive test will end in a successful pregnancy are pretty damn low at this point. Think I’m a bit worried that I thought I’d found the answer in all of this and if it doesn’t work this time, then what? But just trying to take each day at a time and not stress myself out too much.

How are you feeling post collection etc?

Thanks @Gizmo1983
cant believe they withhold so much info - how would you even know to ask that! Fingers crossed for you. Are you able to do a fresh transfer with a tested embryo?

hi @elarcoiris its so difficult to trust anything and to just not have pure happiness at a positive Pregnancy test. I would test and feel so anxious before and then only be reassured for half a day. Try and take each day as you can. When is your first scan booked in?

to pass the time I have been doing puzzles like an old woman 🤣 but I really enjoy it and takes your mind off stuff for a couple of hours a day!

@elarcoiris ive got everything crossed for you things are definitely sounding hopeful. I know exactly those feelings you describe it’s just not fair to not be able to get 2 lines and just be happy and not worry. Thinking of you and got everything crossed xxx
@Jecca88 I do love a good puzzle and also a book you can get totally lost in.
yes I was a little disappointed we could have lost a heard earned blast as you need to take the progesterone to keep your womb pregnancy ready
my last update all 4 of our eggs have fertilized we won’t hear till Monday and then we will decide what they are doing. They said they hope to get 1or 2 blasts which from 4 eggs I’d be over the moon xxx

@Jecca88 It’s so tricky because obviously was hoping for this but now I’m here I’ve just got a whole new set of things to worry about! The nurses at CRP have been really lovely though, and I’m booked in for a scan at the clinic when I should be 6+3 so only a couple of weeks to go. Just trying to see that as the next milestone and not worry too much about the rest!

A puzzle sounds like a lovely idea - might have to take some inspiration from that!

@Gizmo1983 Thank you xxx

That's great news @Gizmo1983 ❤️ keeping everything crossed for you for some blasts 🙏

Slow progress on the cross stitch! I've definitely gone wrong, but some of the colours are so similar, so hopefully, it won't matter too much.

@elarcoiris one day at a time ❤️ lots of love.

@lozzmax gcsf makes me feel rough with the first one but it does get more manageable. It's so expensive.

Had a really full on week at work, but I coped well with it. One strange thing about being on antidepressants is I can't cry! I actually feel pretty good at the moment. I've had some really nice comments at work. One colleague said yesterday that he's really noticed a difference in me and I'm back to my old self, smiling and laughing. I pressed him and said when do you remember me last like this and he said about 5 years ago 🥹 but I'm taking that as a positive that there's been a shift. I'm also on a 53 day run of walking 8000 or more every day! Feeling much more motivated.

Lots of love everyone xxx

Ps- took your advice @Gizmo1983 got a lovely meal planned with dh tomorrow evening 🥰

Hi everyone, hope you’re all ok ❤️ sorry I’ve been MIA lately. I have been taking a mental break from this difficult journey. I’m at this point where I don’t want to do anymore transfers, can’t bear further disappointment. Having said that I know I’ll probably change my mind at different points in time. For now I’m enjoying the break.

I had a consultation with Dr S last week and I asked him about the trio tests and they cost a blooming £3k. It’s a lot when I’m already getting latent TB treatment on top of IVF and the immune protocol. Just crazy.

Sorry, rant over. I’ll read up as much as I can on the messages I missed xxx

Nice to hear from you @Newbeginnings22023 ❤️ I'm sorry you're struggling. I hope the break helps. Its definitely doing me good. I'm not sure how I got through all the tests and transfers before.

£3K?! wow. I think it was about £1800-2000 when I did it. It's such a lot. If you're anywhere near the Midlands, it might be worth looking at Cherish, I think they did the endometrio test. Alternatively you could get Doxycycline and treat both you and your partner? I know it doesn't do the whole lot but maybe an option? I've decided not to have any more tests and if we do do the final round, just transfer. But I'm not sure we're ready. Definitely won't be doing the last cycle until at least October. But the linger were away from it, the better I feel. Sending love xx

Hi @Newbeginnings22023 welcome back. Hope you're ok 😘

I just sobbed in the middle of a family walk because my SIL told me she was pregnant with their second child- another accident and their first is not even a year yet. Obviously very happy for them and she couldn't have been more lovely (kept saying sorry bless her) but with our chemical last week I just lost it completely 😭

Sending love to you all and glad I have this group, makes me feel so much less alone x

@lozzmax I’m so sorry, those kind of in person announcements are the worst, even if they come from lovely people with good intentions. I would’ve done the exact same thing in your situation. Sending lots of love xxx

@elarcoiris I know, she meant well by wanting to tell me in person but it's really the hardest way to receive the news, especially when you weren't expecting it and you've had half a bottle of rosé at lunch! Thanks for your message. I feel absolutely terrible

Awww @lozzmax im just so sorry I can just imagine how rubbish you feel probably the last thing in the world you needed. Have a good cry and have some more wine. Do whatever you need I’m so sorry sweet.
@Newbeginnings22023 i don’t blame you the month we were not trying before ivf was bloody fantastic I loved life and felt like a new person. I’d take a break a bit longer if I could but I’m 41 in July so need to press ahead.
@VenusStarr oh my honestly just the biggest smile broke out on my face when I read your post it must be so lovely when people are saying they see a difference just keep doing what you are doing and the cross stitch is looking fab.
afm we will get the phone call tomorrow to see if anything has survived over the weekend and if we are putting one in tomorrow ( if we have one or more to pgta test). I didn’t mind the other ivf drugs but I hate the way ovitrelle makes me feel and I don’t like progesterone much easier. One of the drugs has upset my tummy a lot 🤦‍♀️🤦‍♀️🤦‍♀️. I think the stance we are taking anymore than one we pgta test if just one we put it in. It’s £2500 to test them so trying to weigh up what to do we have found really stressful xxx
love to all xxx

Thank you @Gizmo1983 I've had people say that I'm looking really well, think it's my homemade highlights! 😅 it does feel nice though. Just been for my morning walk, I'm trying to do 20 minutes before work each day.
Thinking of you this morning ❤️ I hope you do get some positive news today xxx

@lozzmax sending you lots of love. Its really difficult. I hope you're OK. Bug hugs.

Hope everyone has had a good weekend. Xx

Good luck today @Gizmo1983 i really hope you get the news you need :)

@lozzmax i am so sorry about yesterday - i really don't know how to communicate with people to not tell me in person their news - it always feels so much worse as you're managing your reaction.

@VenusStarr so glad you're getting back to yourself and its always great to hear it from someone else too when you least expect it. The walking before work is great and i want to motivate myself to do this.

@elarcoiris the nurses at CRP are great and I find DR Silva Edge so much warmer than Dr S. I have only had scans with her - can't imagine Dr S performing one tbh. Is this your first pregnancy with CRP?

@elarcoiris Dr. S is good at the scans, he always wishes you luck and tells you immediately what he sees. I've had positive and negative scans with him and I think he's very good. I'd say generally not the warmest but in that scenario you just need straight to the point. When is it?

Thanks all for your kind words. @Jecca88 I wish people knew not to deliver in person or even over the phone news. I've even started finding the long rambling text 'don't know how to tell you this' ones really hard - I feel like just saying 'just tell me, don't write an entire paragraph about how bad you feel'. But I know I'm probably being really over sensitive and they're really just doing their best and they just care about my feelings and want to protect them as much as possible. It's just bloody unfair isn't it?!

@VenusStarr I'm glad you're starting to feel more like yourself ❤️ I started thinking about surrogacy last night - is this something you've explored before? I think I'm trying to tell myself that could be a last resort but I don't know much about it at all

Thinking of you today @Gizmo1983

@VenusStarr that’s so lovely that you’re more like yourself these days. This makes me happy :)
I think that’s such great advice about the doxycycline, thank you. I’ll ask my ivf doctor when I feel I’m ready for the next steps. I’m in Greater London so the Midlands options wouldn’t work unfortunately.

Funnily enough, I’m following the same timeline as you, no earlier than October if we do go ahead with another transfer. But you’re right, I’m enjoying this fertility-worry-free period too much. It’s a good thing in my books. P.S. I’m loving your creations xx

I’m so sorry @lozzmax it’s so difficult. Not the same thing, but I was with a friend yesterday who has 3 kids and she’s always asking me about my plans. It’s really hard. I’m so sorry about your chemical xx

@lozzmax i totally relate, the long texts almost feel like too much pitty, with all the best intentions. The best way to find out is via someone else and - someone who is good at delivering news and then you know its coming. I had this girl who works for me call me up on a teams call in tears to explain she was pregnant and it was accidental and how bad she felt and i was like oh p* off. I am expecting my SIL to announce she is pregnant anytime soon too and i just want to avoid seeing her. She was pregnant the same time we were with our first miscarriage back in 2022 and i have never known someone be so insensitive as her pregnancy continued to be successful - its not a safe space at all.

@Newbeginnings22023 I love the fertility worry period - it doesn't last long for me but its really good to get back to yourself and appreciate the life I have. have you got any nice summer plans before oct?

@Newbeginnings22023 sorry the fertility non-worry period :(

Hi lovely ladies I’m so glad I have you guys as I think you will be the only ones who get it. Had lovely news that out of the 4 eggs that fertilised 3 have gone to blast, a 5aa, 4ab and the last one is struggling so they are going to see what it does tomorrow if it is freezable or not. I was so tempted to out this one back in me now however hubby was very reluctant to put this one in if we have 2 good ones in the freezer ( I’ve told him they may both fail the pgta). On one hand feel so lucky to have 2 good ones to pgta but on the same hand feeling empty like it’s going to take forever to actually get a blast transferred ( they said prob august ). Just feeling but crappy and hope we’ve made the right decision xxx