Immune /natural killer cell treatment when ttc or pregnant (aka the 18th pred thread!)

[Hula2]

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

Trying you're both still way too young to think this is the end. You could end up having your IVF baby then who knows- a few years down the line the right egg may meet the right sperm, when your NK cells are in check (because you're more relaxed) and there's a baby! I'm not saying this in the horrible 'oh just relax and it'll be fine way', because that's BS. I mean this situation is almost nonsensical and crazy- and you've got years left for life to throw a 'good' curveball at you.

I'm good, ta! Baby is measuring ahead. The smallest measurement had them at 7 wks 5 and the biggest measurement had them at 8 wks 1! Haven't spotted since Tuesday and the technician said she she's 'echoes' in the bleed which may indicate clotting. So tightly crossing our fingers!

drttc that's great! How are you feeling?

Hey Snoopy! I feel pants. So nauseous all the time. Due to the bleeding I took this week off work and now I can't imagine what it'll be like to be back at work next week feeling like this. Even had to cancel acupuncture today as I can't stomach the journey.

How about you? Are there symptoms at this stage or is it that famed 2nd trimester honeymoon?

Well hopefully you'll have a trouble free second trimester drttc.

I think my first trimester symptoms were all steroid side effects- spotty face, neck and chest, everything tasted horrible or of cardboard (except grapefruit) but I couldn't stop stuffing my face with carbs and terrible insomnia.

Since I've come off steroids my skin is pretty much clear but I am soooo tired! I'm falling asleep on the train to and from work. Sleeping on my side is giving me horrible hip pain and these crappy office chairs make my coccyx hurt so I now waddle like duck intermittently. But it is so worth it.

I didn't remember anyone mentioning so much nausea on this thread - so I assumed us pred girls didn't really get it! Emmmm wrong! My skin is horrible and yes I'm eating all the time... Mainly because the second my stomach slightly empties I feel like throwing up. I put crackers by the bed so when I wake up feeling sick I have them to munch on. Surprisingly I've not really had insomnia... Just woken up from needing to pee a couple of times each night.

Aww poor thing! Yes it is 100% worth it! So so happy but still very nervous of course... I keep saying to hubby that I wish I could just hibernate until we feel 'safe'. This is a brutal in between time with so many thoughts running through my mind :(

Seeking- are you testing soon?

Just saw Dr S. The bleed is now enormous and completely wrapped around the pregnancy. Two days ago it was tiny and clotting up. Apparently I shouldn't have been on the fragmin and it's been dangerous. Next two weeks are critical. Pretty devastated.

drttc your little bean has made it this far, it's strong, I'm sure it's going to be ok. Rest and take care of yourself x

Oh bless you Drttc, I bet that news has knocked you for six after your scan the other day. But try to stay positive. It's not the end of the road, your little one is still staying strong and hanging on and that exactly what you need to do too. Did he say how it can change so much so quickly?

I'm testing next week sometime ... Wednesday onwards. Not sure I'll test at 10dpo. I might even just wait and see

I'm so depressed. It's gone from best case to worst case so quickly. Dr S said perhaps they didn't measure/scan it correctly or implied it's because I've been on fragmin when I shouldn't be. I didn't even bother mentioning that his office told me to stay on fragmin (and even scolded me when I questioned them) because I'm the one who pushed to be put on 'everything' in the first place :( I'm so upset and I just don't know what to do. Loads of stuff online says bedrest is crucial but Dr S activity is fine as long as it's not strenuous. I just don't know and I'm so anxious/sad/pessimistic/guilty... The whole bag of negative emotions.

Drttc - i m so sorry that the bleed is bigger, must be really hard for you and your dh and i can understand the devastation after the positive scan the other day. All you can do is focus on the here and now and that is your little bean is in there and is still strong and you can be too. I think dildoos had loads of bleeding with her DD the whole pregnancy and was fine so it can happen. Sending the biggest cyber hug and keeping everything crossed that things settle down.

Is Wednesday 10dpo Seeking? I'm sure you'll be dying to test. I use to want to get off the Pred ASAP and used it as an excuse to test early... Lol

Thanks Hula :)

Oh also I've been put on niphedipine 1x daily to keep my uterus from contracting...

Drttc I'm so sorry to hear that you're going through this stress! This journey is such a crazy roller-coaster! Like the others say it isn't unusual for women to have these bleeds with pregnancies, but of course we all understand how alarming any bleed can be. It's good that you saw Dr S so he could adjust your treatment and keep a close eye on things. When do you see him next? Like the others say your little bean has done so well already and now your treatment is adjusted I'm sure things will settle down.

Try and follow your instincts with regards to bed-rest (if you can). Maybe do some meditation to calm your mind (this site is pretty good, lots of different ones like - Guided Trust Meditation - might be good for you www.meditationoasis.com/podcast/listen-to-podcast/
Or maybe read a good book/watch some films/do some baking something that's grounding and focuses your mind on something else for a while - completely easier said than done I know!!!!

And please try not to feel guilty. You decided to throw everything at this pregnancy and look how far you've got, so you obviously did the right thing. It sounds like your treatment just needed a bit of adjusting but you've done so well!! Try and focus on how far you've come and how strong you've been. You've just wanted to do the best thing, and you have.

I think I'd take time off next week if you can? Maybe just a day or two so you have a short week.

Also sending you a huge cyber hug! xxxx

Billy thank you so much for your kind words. I'm seeing him 2 weeks from today (23rd). I'm so scared as I've no idea what the next 2 weeks will bring. I'm debating whether to have a scan next Sunday as it'll be the half way point and may ease my mind... But don't know if I should just let things be. I think I'm leaning towards resting as its the majority of people associate it with reduced bleeding...

How are you? Where are you in your cycle?

I'd definitely rest and take some time off work if you can. If another scan will ease your mind do it. It won't change the outcome of things. Have your scans been internal? I'd be inclined to wait if it will be another internal, I wouldn't want anything up there.

Wesnesday is 10dpo. But I feel it's still too early .... I hate it!

drttc if it were me I'd rest this week. Please don't blame yourself for any of this, you tried something and your bean has made it this far. Now you're on the right meds and you're doing all you can.

Drttc I'm so so sorry. It must be so worrying, like u needed anything else!!!
Don't go to work I know Argc tell their bleeding ladies to bed rest it - it's old fashioned but they must say it for a reason. However I've always been told to get on with stuff and always have when I've had bleeds
I know a lady who had the hugest bleed, like haemorrhaged everywhere on the street-was convinced al was lost. She had a huge bleed surrounding her twins. They are now born! Keep strong, u have done everything in ur power to get this far and done nothing wrong

Clexane gets reversed v v quickly or stopping it, they do operations within stopping it in 12 hours or so...so it's going to start clotting now and hopefully piss of!

Thinking of u X

also drttc, I don't know why but all Ivf patients with rm and all of them at Argc go on clexane. Also quenby puts all of hers on clexane too. Despite no "reason". So is he was implying it coz u pushed it, well to be fair loads of consultants "push" it, so he can shut up!

My friend just saw DrS today for her results of initial tests.... Her NK cells were quote 'one of the highest levels I've seen in a long time'! At 43%. And neither IL's or pred made much difference. She's understandably devastated. She's having to take pred for a fortnight and have IL's next week and then get re-tested.

Thanks Seeking. I think I'm going to take the week off as I don't think I can handle the stress of a 1 hr train+walking commute each way. I'm the worst at waiting to test so don't listen to me haha... You know I start at 8dpo like a nutter! Do what feels right for you.

That's so upsetting about your friend. What's her history and age? I'd be hesitant about jumping to conclusions tbh although hearing that must have been so tough...

Thanks so much Trying. I'm not sure if fragmin works differently than clexane? Online there's mention of people using blood thinners to 'bleed a hematoma out'! It's so confusing. Maybe I've actually just natural developed this hideous & rare bleed?! WTF WHY ME!!! Just can't bloody win on this journey :( I'm trying to take comfort in that this pregnancy has proved I can create a baby that looks great and am not damned to chemicals. But God please let this pregnancy work out!!! Praying hard.

She saw him after 3 failed ivf cycles. The clinic she went to doesn't test immunes and after we told her about many issues she thought that maybe that might be why she's never fallen. I really hope DrS can figure something out.

Will keep everything crossed for you Drttc, it seems you have a tough little cookie in there so far, hang tough little one!
I'm the complete opposite of you test wise - I hate it!!

Drttc how are you today?
How bout booking a scan in for Sunday - but with the intention that you'll try not to go - then try to spend the week relaxing/meditating/grounding yourself as much as possible - and staying home from work. Then see how you feel by Saturday - if you feel the week has been bearable then wait another week. If you've really struggled through that week then go for a scan. It might be a good idea to try and wait two weeks as you might not get a definitive answer after a week anyway. But saying that it's whatever works for you!
It def sounds like a good idea to stay off work if you've a long commute!

I'm on day 28 of my cycle but I've had no temperature rises this cycle - which hasn't happened before. Plus I had no mature follis and a thin lining on my SO tracking scan, so it doesn't look like I've ovulated! My acupuncturist says its normal for women to not ovulated occasionally but Im really worried about it, and my depression around this all just keeps getting worse - which I know isn't gona help - which makes me feel even less hopeful! My age plus me and my partner keep arguing (prob because Im feeling so depressed and he's understandably getting tired of it all!). Feel like Im loosing him too. This RPL is such a lonely journey! We've got an app with the NHS clinic on 28th where we'll get the results from bf second s analysis then I guess we will decide what our options are.

seeking Im sorry to hear about your friend! She must be feeling devastated. It's good she's had the tests done and hopefully Dr S can help her.

Trying Im sorry you're having a difficult time! I really know that feeling that the universe is saying to give up! Im guessing we've all felt like that on here! Like the others say you've got time on your side, it will happen for you but I completely understand your frustrations! It sounds like with the right meds and monitoring you've every chance of being successful, and you know you can get pregnant so I'm guessing that increases your success likelihood with ivf? How's your dh doing? Maybe he just needs a little break from it and will come round?

A friend of mine tried everything to get pregnant in her late 20's without any success. Stopped trying for one reason and another. Life moved on blah blah (she always thought she couldn't have children after this). She came off the pill at age 43 and was having irregular periods, but got preg after about 4 months and has just recently had a little girl!

It's a long time to wait (although she'd stopped ttc) but things/our bodies change and not always for the worst.

I hope everyone is doing well xxx

Billy - i m sorry you re having a hard time. Screwed cycles are the worst for messing with your head. I had an 18 day one last cycle with a crappy light af and crazy mood swings thats all but convinced me my 40 year ovaries are shutting up shop in protest of 6mns of superovu !

Please don t beat yourself up, this whole thing is depressing and bloody hard and i think men struggle to understand as it just doesn t affect them in the same way. Can you talk to him and let him know how you re feeling ? (I m crap at this and often end up in a worse arguments b/c of all these underlying worries and obcessing that he s not aware of). Maybe he s anxious about what his results will be and thats affecting him too but he s not showing it ? Whatever though please don t feel alone, we re all here for you and understand your pain. Thanks for the story of your friend, goes to show we never really know whats around the corner.