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

[sunnyday01]

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

[Tryingno1]

What time is ur scan seeking? Best of luck, I'm hope all will be well, but it's sooo terrifying!!! Do come and Give us the the good news. :)

[Seekingmiracles]

Scan isn't until Thursday evening Trying.... I just find I question my positivity in the few days before hand! Stupid I know!!

[Tryingno1]

Not stupid at all! Totally normal! U sound mega calm and together. I wish I was less anxious at the moment! Hope today flies by for us all, and u sunny!

[sunnyday01]

Morning! sorry not been around much - I am trying not to think about my scan much although easier said than done I'm struggling to concentrate at work too. Just got to get through today!

Hopefully i'll catch up properly tomorrow!

[Drttc]

Thanks ladies- I'm fine! No symptoms, no nothing. Feel exactly how I do on regular cycle days (not AF days). Clear blue finally ticked over to 2-3 weeks when I was at 4 weeks 6 days (am now 5 wks 1 day). That means I'm over 200 hcg- which is very crap for 5 weeks! Just waiting now I suppose, though it is easy to ignore when pain free! I'm wondering if it's a blighted ovum...

Good luck on your scan Seeking! It's gone so well & you're nearly at that safe zone... Yay!

Hope you're feeling better Snoopy... I know work can be rubbish!

Trying, fingers crossed that your lining is nice & thick when you have your next scan!

Hope everyone is doing well (Hi Rosa & Sunny!) and has a lovely Tuesday x

[Tryingno1]

That's great drttc! That's totally a normal response on a clear blue? I would be being hopeful? Are u going to book a scan for next week?

No more scans for me, just collection on Thursday! He's going to give me owstrogen tablets post collection to help thicken it up. I have a slightly tilted womb so people have struggled to get a accurate reading to the honest...I just wish I didn't have this to think or worry about! Let's hope she scanned me wrong and it grows another 1/2 mm next few days.
Agh!

Determined are u out there? Thinking of u!

[Tryingno1]

Drtcc I had a quick look into he clear blue fda pdf file. It clearly says that it should pop up saying 2-3 weeks when you are 4-5 weeks preg. So u r totally right on track. Think postive!

[Tryingno1]

www.accessdata.fda.gov/cdrh_docs/reviews/K112870.pdf

[Hula2]

Hi guys,

I m back from the wedding in italy, we all had an amazing time and was a great break from thinking about ttc etc (altho was ov time and managing that while sharing a room with ds was a bit tricky ! )

Also had a few gluten/diary lapses as some pasta was only option but back on the wagon now !

Looks like tomorrow is a big day for scans and stuff so good luck sunny, seeking and trying.

Trying 12 follies sounds good. A colleague had ivf at 35 but had 3 eggs 1st attempt and 5 on second. All went to blasts and she got her baby from 2nd go so it does just take one and hopefully the oestrogen will do the trick for your lining. Good luck with the egg retrieval, hope it all goes ok.

Drttc i m still keeping my fingers crossed for you.

Snoopy don t let work decisions affect your recovery, they ll just have to manage without you. The puppy sounds like a great idea !

Hi to anyone else i ve missed.

[Rosa27]

Hi all. Drttc- I'd also be hopeful... Though cautiously optimistic I think is the right phrase!
Thinking of everyone - Trying fingers crossed for you with your collection this week..exciting. Hope goes well.
I've had an NHS appointment with a consultant today and feeling a bit angry / upset. Again I was reminded they don't support the immune treatment we get. Was even told the intralipid infusions are not helpful and risky after I told her my next was tomorrow. She said there was a recent report out to confirm she could send me - then decided emotionally that probably wouldn't be helpful. Um .. Too late!
She said there's no scientific evidence for our treatment. I explained how many years Mr S has successfully treated people like us but she dismissed this by just saying 'she knew of him well'. It's just really thoughtless to pass remarks when I'm committed to treatment and already experiencing so much anxiety. If anyone knows of any compelling evidence please let me know. I totally believe in Mr S and admire his approach. The NHS didn't dip prof cyclogest until very recently. I'm sure it's just a matter of time before pred etc is added to their list. Thank goodness some doctors work with science not just following insight from the past. If would be too late for me. She didn't even seem to support the fact I had had a Harmony test. I asked did she think was a waste of money and she threw a counter question to me - well would you have terminated if there was a high risk? Ultimately they decision would be much more confidently made with Harmony than normal scans. And personally I wouldn't want to risk a miscarriage with a diagnostic scan. Some higher risks in normal scans are more accurately presented as very low risk with Harmony and it was just the other day the BBC said NHS are looking into providing it!
I feel a bit better getting that all off my chest- sorry!! X

[Tryingno1]

Rosa I'm outraged for u!!! So unhelpful. Instead she should be congratulating you for getting this far and be happy for u. This attitude really really pisses me Off! Yes there is not that much sound data...but that's how medical innovations start. And the risks are minimal-im not aware of any with intralipids at all? To be fair, maybe you would have been ok with no tx this time around but are you going to take the risk after all the heartbreak?? It's ok for her to sit there and judge. She's just worried you for no reason. I'm very cross for u!!!

Also, I'm no longer under mr shehata, and I'm having the EXACT same tx. It's not like he's the only one in the uk doing it. And my ivf clinic has 10 clinics in the uk (CARe) every single one does all these tests and treats with pred and intralipids etc.

Hula, bet u had a great time away! I wouldn't worry about enjoying some yummy pasta now and then! Hope u r well rested-has SO started for u??
Thanks for ur story about ur friend, I'm feeling totally fine about the follicles as I do believe it only takes one. Plus sometimes there are more eggs there, sometimes less so I won't know till Thursday. It's just the lining, but hopefully it will grow!

[Tryingno1]

Also how unhelpful to ask if u would have terminated?! How the hell could to u answer that!!! U don't know how you would feel. Maybe u would maybe u wouldn't. But if it was a severe signifcant problem for the babies sake maybe u would. But it's such a stupid nonsensical question.
I want to make a complaint about her. She's really wound me up! Maybe the hormones in me?!

[Hula2]

Oh my god Rosa poor you ! That was so not what you needed. Sounds like you were dealing with a dinosaur of a consultant and her comments were very irresponsible. I would ignore it, that fact that she can t see the benefits of the harmony test, a non invasive test with 97-99% for three trisomys that is far superior to the scan plus current bloods they do for downs is ridiculous and just shows she s out of touch. And its not just doing it to decide if you would terminate it s also to know and be prepared if you choose to continue and it had picked up one of them. Re immune treatments its not just Dr S doing it, many ivf clinics are too, would she be scrutinising would they had done if someone had done it thru ivf ? I d seriously ask to see someone else next time if you can. Hugs

[Rosa27]

Thanks Tryinb and Hula.. You've made me feel like my emotions are justified. She made me feel so pathetic. She said I was 'vulnerable' - implying had been taken advantage of. Of course I'm vulnerable after recurrent loss.. But I'm not stupid and made a very informed decision. As you says Trying- nobody can judge unless you've been in our position. I personally could not get pregnant without doing something differently. It could be luck but having had heartbeats twice so close to the second trimester my money is my treatment had helped. So wish I could prove it! X

[Rosa27]

Oh my typos.. So many, so often - have they got worse since I have been pregnant, is this the 5% of my brain that's lost?!

[Tryingno1]

I agree rosa! Have u watched the documentary waiting for a heartbeat? There's a lady on it and after 8 miscarriages St Mary's put her on pred even though they don't approve/are totally anti it. Surprise surprise she had her baby! I just hope I get another BFP so I can be another pred happy story!

[Drttc]

Thanks Trying! I think if I'd not had my levels checked if be more hopeful about the CB ticking over. Of course it would be an amazing blessing for things to be okay, but statistically it would be one of those miracle success stories. I'd be lying if I didn't admit a part of me is hoping I'm wrong & that I experience that miracle though.

Collection on Thursday - such a big moment! Your future baba could very well be in that bunch... How amazing! I watch Giuliana & Bill and they even made a video for their son (didn't know the gender of course) the day they did the egg collection. Crazy!

Rosa, wow. What an idiot. Besides being misinformed, what kind of medical professional would consider that an acceptable way of dealing with someone in your situation. I really do wonder how/why some people get into these fields. Surely her priority should be keeping you calm & feeling safe? ARGH!!!! Everyone is entitled to their opinions, but if she's upset you, she's simply NOT doing her job correctly.

Thanks for the good thoughts Hula. Sounds like a very nice & well deserved holiday indeed! Sometimes we just need that time away. I've bed trying to be gluten free for about 7 weeks now & know it's hard to be completely 'clean'. I figure that a little trace here & there is still far better than large amounts... So you're still doing well! I do wonder if being GF will help me have my baby. Feel positive about that change overall.

[Tryingno1]

Ross don't feel bad or waste another moment on this annoying lady who clearly doesn't understand the emotions of what we go through and isn't open minded enough to understand that doctors don't know it all. All that matters is u have a healthy happy baby. She has really wound me up! I actually got told not to go to Mr s when I was at a Rmc appt too. I still went!!!

[Rosa27]

Haha you got my name wrong too- we're even now Trying;)
I'm totally wound up too. Want to write complaints but won't be helpful to me or my baby right now. I will deal with all this crap at some point though... It's just not right.
In terns of GF.. I do when I can but wasn't 100% either. I think it helped though as meant to help you absorb other good stuff better too. I'm so scientific !! X

[Tryingno1]

I agree rosa! Just rant on here Instead! After my second mc my work place were awful and broke my confidentaility etc. I was offered to take it up and complain but didn't feel like I could handle it back then! Sometimes it's better to choose ur battles. Right now all u care about is a healthy baby, so let her have her opinions and u have urs!

[Snoopysimaginaryfriend]

Afternoon all.

rosa I am outraged on your behalf. In my head I got very sweary reading about what that cow said to you, completely insensitive, completely unnecessary. I may be projecting my bitchy feelings about the nhs on to you, i just feel abandoned by them.

sunny and seeking good luck with your scans, try not to get too anxious although I know it's easier said than done.

hula I went to Italy a few years ago and ate my weight in pasta and ice cream, well done for not being a piggy like me haha

trying you must be getting really excited now. I'm hoping you get a lovely, voluminous lining!

I'm just feeling a bit hopeless to be honest. DH doesn't seem to understand how badly this has affected me. I feel like my life has stalled. Despite my best efforts I don't have a baby, and the miscarriages are now having a negative impact on what I could vaguely refer to as 'my career'.

[Hula2]

Snoopy i think your feelings are completely normal in this early post mc time esp with your work being so unsupportive. I seem to remember you ve had 3 mc in 6mns, thats an enormous amount of emotional trauma to deal with in such a short space of time, i d be a wreck and have probably long given up so don t beat yourself up, you re doing great just managing day to day.

Positives to remember is that you ve got pregnant quickly and you were nt properly on treatment for any of them so now you have a plan in place you re chances should be good. The beer book quotes 70-80% success in three cycles for women in your situation. Hopefully once you can start ttc it will be easier to be positive.

As for work this is a tiny amount of the overall amount of time you will work in your life so i d try not to focus on it. Are you in a position even to take a career break for 3-6mns ? Or request a less stressful position ? Your recovery is more important than anything. Hugs

[Snoopysimaginaryfriend]

Thanks hula. Sorry to be so down on such a positive thread.

I think I'm just getting more stressed because the first due date is coming up on Saturday and no one else remembers.

It's just Sod's law that a role that I've wanted for months comes out now, when I'm in the middle of all this.

Occupational health have said I shouldn't be in a front line role but the process of finding another role is so slow. In the meantime I'm stuck in limbo and looking forward to statutory sick pay.

I might feel better when we can start TTC again but I'm so scared.

I know a lot of you speak highly of acupuncture so I might look into that because it can't hurt

[Seekingmiracles]

Oh my god! Rosa I am so appalled by the way you were spoken to, although not completely shocked!! We all know that the treatment we're having is not backed by the NHS by I'm am shocked that the Drs fail to see that so many people have success with it! It's not just a coincidence! And yes this may have been your time, without treatment but who would risk it with the histories we all have!
I'm half expecting the same response when I have my consultant appointment although I'm prepared for it and will make respond appropriately! A complaint letter is definitely in order!! What a complete twat! I bet she was one of those people who sneezed and got pregnant without a care in the world!

Snoopy, have you considered counselling? I know it's hard to admit you need it sometimes but I truly believe that it works wonders for some people. It's horrible being stuck in that void after a miscarriage. Everyone else's lives go on, yet your whole world has collapsed. Take comfort in the fact that you're feeling the same way we all have. Try to stay strong and believe that you will get there one day, trust in The treatment it's working for so many, it'll work for you too.
Glad you had a lovely time away Hula! Sounds like my idea of heaven... Pizza, pasta and ice cream! Yum!

[Hula2]

Snoopy don t apologise for being down. We re all here on this thread to support people thru the good and bad bits.

Due dates are really hard times, only my best friend remembered ours and my family didn t (they said becaused they didn t want to upset me but it was worse thinking nobody cared). I found it helpful to do something special.

Re acu, i def recommend it. I see one in london who has been great. Where are u based ?