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Immune /natural killer cell treatment when ttc or pregnant (aka the 16th pred thread!)

992 replies

sunnyday01 · 05/06/2015 19:22

This is a thread for those diagnosed with high or very high natural killer cells and trying to concieve or are pregnant and taking steroids/intralipids etc

Newcomers very welcome

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5
Snoopysimaginaryfriend · 12/06/2015 22:50

trying isn't it surreal and amazing to think your little one could be doing its thing right now in a little dish. They should do something like embryocam so you can watch them growing.

Pregnant Until Proven Otherwise - I like that Smile

seeking and drttc it's so rubbish that the one time you just need the system to be on your side and not add to your stress it can't manage it. Makes my blood boil.

I don't really know what to do tomorrow. I just feel a bit numb tonight. I took DH out to watch a film at the little cinema we went to for our first date. We talked about puppy names.

The forget me nots now have six shoots although one is definitely growing faster than the other.

Hula2 · 12/06/2015 19:26

Seeking - sorry on top of everything you ve had a hassle sorting out your erpc. Must be very hard waiting for that. It so shit that on top of immune issues we ve also still got the random back luck of a chromosomal mc. I think freelance girl who posted a little while back and was on the thread before managed to have two pred babies and had a chromosal mc in between them.

Trying - yay for 6 embies, sending lots of positive vibes for top grade ones.

Drttc - wow your poor grandma, she must have had incredible strength to get thru all that, sounds like you and your family are made of strong stuff. Hope you get your scan soon.

Snoopy thinking of u tomorrow.

Tryingno1 · 12/06/2015 17:28

Seeking sorry it was such a mess trying to sort it out. Iike u need drama at a time like this. Hope ur holding out ok.

They only transfer one on an nhs cycle at my place. I'm happy with that as I know twins increases miscarriahe rates! I literally can't wait till 830 tmrw am to hear that hopefully they are all doing well and tuesday is on!

Drtcc glad Gp was helpful. Ur doing really well, keep focussed and postive and hopefully by end of next week u will hve some
More news xx

Drttc · 12/06/2015 17:22

Ah Snoopy I know it's so depressing! I've decided to just bunker down & keep trying, while accepting that it's going to hurt. It's sounds unhealthy but detachment has enabled me to bounce back much more quickly than I use to. Of course every day is different, and sometimes you can't help but feel complete shit!

Seeking, thank you. I don't think I'll be a source of good news this time around. But I do honestly believe we'll all get there eventually!

The who due date thing has bothered me a little bit... Mainly seeing how real the pregnancy became for people who got pregnant at the same time. Ouch ouch ouch :( You just kinda look at them and think how blessed they are... No idea how hard it can be.

Trying, I find myself saying similar to DH! If we can't remind ourselves of everything we do have, the journey becomes much harder. A warm home, good food, and 'I love you' every morning is so much more than most people in this world we ever have.

Went to the GP and she was more interested on getting me an urgent scan. She rung several people & half said no while the rest didn't answer. She was annoyed because she said she's done it before with no issues. So she's referring me to the clinic that just ran all my NHS tests as the letter said they'd see me again when pregnant. She says to hold out for whenever they give me a scan. If I've lost it by then to continue with the appointment but go my DH to request testing for both of us as a couple (as she thinks it's very reasonable for us to get some). There was also discussion about ivf if we can find an issue. So, she was very supportive, but in terms of help/treatment I've left completely empty handed. Not even a booking for anything! Standard!

Looking forward to the weekend!!

Tryingno1 · 12/06/2015 14:16

Oh snoopy I'll be thinking of u tmrw. Are u going to do anything to mark the day? I know our happiness is totally Robbed and pregnancy is no longer a happy thing! It's really shit.
Yest as I was hysterically crying about DH sperm he reminded me neither Of us were dying! And we were healthy and its not that bad and we will just have to get stronger and fight through it together.
To be fair I replied saying, "I'm sick of being strong! I can't take any more hurdles" But then I suppose u just do?! I've booked dH a urology appt I hope he has some advice re freezing/soerm retrieval /why counts r nose diving. And one day I Hope To God I can look back at this nightmare with my baby and think how on earth did I make It!

Seekingmiracles · 12/06/2015 14:14

Trying that really is fabulous news! I really hope they all get to blastocyst. How many will they put in? One or two?
I've had such a bloody nightmare trying to sort out an erpc. It's like the NHS has a meltdown when you mention private care. They don't know how to function! Finally managed to sort it myself by ringing the fBulous nurse at my local epu.

Im still hopeful for you Drttc....there has to be some good news to come on this thread. X

Snoopysimaginaryfriend · 12/06/2015 13:57

trying I have all my digits crossed for you. Come on little embies!

sasha have you spoken to the doctors at the Lister about your concerns? Hopefully your appointment with Dr s will give you some options. Like drttc said it's awful enough to miscarriage but when you're paying hand over the fist for the privilege it's even more galling.

drttc my mum keeps telling me I have to be strong like my grandma. She had my mum then she had a little girl who died of leukaemia, a little boy who died of cot death, then she had my aunt and then she had a stillborn little one. This was all in rural spain. She had a breakdown after her son died but she had to keep going.

I hate that this journey has robbed us all of so much. I think back to happy I was the first time I got pregnant, my little honeymoon baby. I'm never going to have that again. I'm never going to be one of those women who have a 'happy surprise' because everything has to be planned and medicated and even if it wasn't the anxiety I feel when I'm pregnant now is awful.

It's my first due date tomorrow Sad

I'm so sorry that we are all suffering so much. I just hope we are all strong enough to move forward and keep going together.

Drttc · 12/06/2015 13:38

Local EPAU*

Drttc · 12/06/2015 13:37

Thanks Trying! I'm absolutely fascinated by the entire ivf process so feel free to keep sharing! Soon you're going to be officially PUPO (pregnant until proven otherwise). It's a thing ivf-ers say after transfer- cute! Hoping you get the 5 day transfer you're hoping for.

I've not arranged a scan so not sure what I'll do if I make it to Monday... Might try to get one at my local EPAY? Also have a GP appointment today where I want to ask for karyotyping & AMH testing. Hope they listen & agree instead of giving me the run around...

Tryingno1 · 12/06/2015 13:03

They ideally have better pregnancy rates from a day 5 transfer which is tueaday for me. But if they have less than 4 good qaulity ones tmrw they don't take the chance incase they all
Die ! So they pop them back in earlier (tmrw).
I'm really crossing everything that they all are good qaulity and we are set for Tuesday. Another nerve racking 24hrs! They ring tmrw at 8am as they can't tell the quaiity today!
Thanks for Listening. I know none of this doesn't mean anything u to guys!
The pred will be stopping ur symtpms and the fact that u have had no spottimg is def a good thing. Enjoy the sun and think happy. When is ur scan?

Drttc · 12/06/2015 12:59

Trying, omg 6 embies!! Eeeek! Did you mean you might transfer tomorrow (sorry didn't understand what you wrote) but prefer Tuesday transfer? Would you transfer 1 or 2 at a time?

I'm fine really! Don't feel pregnant, just completely normal & comfortable. I'd say I'm 80% acceptance, 20% holding out for a miracle. I'm also curious as to whether I'd make it to seeing ANYTHING on an ultrasound (as I never have). So sick of paying for every little thing though... Especially when it's bad news. 'You've miscarried- now PAY UP!'. We are way too poor to spending this amount of money :( Don't even know where we've managed to get it from!

Tryingno1 · 12/06/2015 12:19

Drtcc so glad no spottng. I have everything crossed for u! R u doing ok?

So we have 6 embies. If we have more than 4 tmrw then transfer tuesday. Ow it will tmrw. So another call tmrw am! I hope they survive the night and are good quaility as rates of sucess r much better with a 5 day transfer...thanks for ur all wishes xxx

SashaKerr · 12/06/2015 11:28

This reply has been deleted

Message withdrawn at poster's request.

Drttc · 12/06/2015 11:25

So true, seeking. Such a scary situation when even most women without any issues will have a chromosomal loss if they have a few pregnancies. My mom had 5 children, 1 miscarriage (around 9 weeks). My mother in law had 3 children, 1 miscarriage (around 12 weeks). Absolutely soul destroying 'bad luck'. And how on earth are we supposed to know what's going on without being able to check? I wonder if in the future they'll be a chromosomal test before the 12 week mark. Sounds extreme but it would save a bit of pain.

I know that finding out my rubbish hcg levels early on has helped me accept the situation better & not get my hopes up. Still no pain or bleeding, which really would have excited me as I'm almost the furthest I've ever been.

Trying, fingers crossed for your eggies & can't wait to hear how they did! Such a cool process! Surely DH is still quite young as well, just because there's been a dip it shouldn't be permanent. I think you've both done really well to investigate this at this age & that has got to make success more likely. I always think, well even if it takes me years, I'll bloody get there!

Tryingno1 · 12/06/2015 10:44

Yes seeking.. As u said u got further this time...and hopefully that's testement that the meds r working.

I'm waiting my call to check some eggs fertilised-no call yet Confused

Sasha welcome, I think determined on this thread had NK cells which didn't drop with intralipids and pred and she's working out what to do. Maybe she will be on to let u know her thoughts but if u scroll back she has commented on it. Not sure on Mr s thoughts on it sorry.

Seekingmiracles · 12/06/2015 10:38

It's just crap that even with all the treatment for immune issues, chromosomes can still fuck things up. But I suppose that's just the risk we have to take, it is really really bad luck. I still have faith in DrS and his treatment plan so hopefully next time we'll have more luck.

SashaKerr · 12/06/2015 10:27

This reply has been deleted

Message withdrawn at poster's request.

Tryingno1 · 12/06/2015 09:23

Oh seeking. I'm so sorry. :( so so sad.
I hope Mr s manages to send it off for analysis so if it is chromosomal at least u have faith in the tx working next time.
the next few weeks will feel unbearable but u will slowly rise out of it...
We are all here for u and I hope we can help even if it's in a tiny tiny way xxx

Seekingmiracles · 12/06/2015 09:19

Thank you ladies.
DrS was very shocked that it has ended like this. He seems to think it's likely to be chromosomal over anything treatment related. I just (weirdly) hope it is. We made way beyond where we've been before.
I feel so numb, the tears won't stop. I'm in shock. I have to keep taking my meds until I have the procedure to remove it, which I'm hopefully going to get done by DrS on Tuesday.
Everything seems pointless. I can't see an end to all this crap. I've now got to go back to the drawing board and start the whole shitty process of ttc again. When I thought that this was finally going to be my time, my miracle. Life is so unfair at times.
Thank you all for your kind words x

sunnyday01 · 12/06/2015 09:14

Just to let you know I'm off on holiday for the next week so will catch up once I'm home again. Really worried about going on holiday and seeking' news has really thrown me so going to try and have a break from all social media whilst there!

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Tryingno1 · 12/06/2015 08:18

Thanks drttc. To be honest I don't know wot to think anymore. I'm sad terrified and wondering what my future holds. I just have to hope this works out before DH sperm dissapears...dunno...booking a urology appt for him today..yet another hosp appt!

Seeking - Been thinking of u. Wish I could say something to make it better. It's so sad and utterly shit. Snoopy is right though re the tx timings maybe.....Xxxxx

Hula2 · 12/06/2015 08:04

Seeking thinking of you and hope you re ok xx

Drttc · 11/06/2015 21:45

Trying, that is really crappy news today. That said, it doesn't seem like it is going to change your ivf chances. I actually had a thought as you were explaining your history... Couldn't you still be hyper fertile? As in, sometimes DH has low count, but when he doesn't, you conceive because your hyper fertile? If so, then ivf should work really well for you...

Drttc · 11/06/2015 21:41

Seeking, there are no words. I'm so f sorry because this is nothing short of a nightmare. I wish we could do something. At the very least give you a massive hug. Please know that we all truly & deeply feel your pain.

sunnyday01 · 11/06/2015 21:06

Oh seeking, I'm so sorry - nothing I can say but I'm thinking of you x

Trying, sorry to hear your news too but it only takes 10 or 1 - keep thinking positive thoughts and it sounds like your cobsultant is on it.

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