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Original poster

TTC or pregnancy on prednisolone or similar part 9

998 replies

sarahs999 · 31/08/2012 06:24

Oh dear - we reached 1000 posts on thread 8 without noticing! I hope you can all find this. THis is a positive thread for all those diagnosed with High or Very High NK Cells and looking to start TTC or already pregnant on Prednisolone and/or Intralipid treatment.

Newcomers very much welcome!

Links to earlier threads:

Part 8: www.mumsnet.com/Talk/conception/a1492407-TTC-Pregnancy-on-Prednisolone-or-similar-part-8#33842381

Part 7 www.mumsnet.com/Talk/conception/1452035-TTC-Pregnancy-on-Prednisolone-or-similar-part-7

Part 6 www.mumsnet.com/Talk/conception/1419032-TTC-Pregnancy-on-Prednisolone-or-similar-part-6

Part 5 www.mumsnet.com/Talk/conception/1391787-TTC-Pregnancy-on-Prednisolone-or-similar-part-5

Part 4 www.mumsnet.com/Talk/conception/1366323-TTC-Pregnancy-on-Prednisolone-or-similar-part-4

Part 3 www.mumsnet.com/Talk/conception/1348773-TTC-pregnancy-on-Prednisolone-or-similar-part-3

Part 2 here www.mumsnet.com/Talk/conception/1323594-TTC-pregnancy-on-Prednisolone-or-similar-part-2

Part 1 here www.mumsnet.com/Talk/conception/1236324-TTC-pregnancy-on-Prednisolone-or-similar

OP posts:
mollieboo · 18/09/2012 14:45

olives I'm glad you said no bfp for you until 12dpo, I live in hope. That's interesting you had everything through the nhs, did you have intralipids or just steroids? Its such a long way from Wales to the clinic for us but Mr S has prescribed intralipids until 32 weeks when pregnant so we'll be back and fore Surrey a lot. I'm not taking any chances next time so will do whatever Mr S says, although I keep seeing jokes about all the money going towards Mr S's holiday fund!

Arianrhod · 18/09/2012 15:14

Ah yes indeed, we're all happily contributing to Mr S's holiday fund Grin

Abney · 18/09/2012 18:47

Hi all, thanks for all of your kind words and reassurance. It really does help.

Havingkittens Fantastic news well done on reaching another hurdle. We are all routing for you.

Clabbage I hope you are OK and I am thinking of you at this sad time. Hopefully you will get some answers this time.

Buster76 · 18/09/2012 20:01

Great news kittens Smile

mollie fingers crossed for a bfp - why has he prescribed you lipids till 32 weeks? I have vhkc, he said I'll have my last one at 16 weeks.

He definately has lost weight! I saw him Friday.....maybe he's lost weight for a holiday Wink

Im having another scan locally on Thursday, if thats good that will be the furthest I have got to. Mr S measured me at 8+4 on Friday, heartbeat 182bpm.
Im feeling very bloated, my jeans are soooooo tight!!
Find it so hard to positive sometimes, maybe trying to protect myself. When talking about future events or the coming months I cant help but say "if I am still pregnant then". Its been very hard keeping it from friends, dont want to jinx myself!! Have you told anyone kittens, abney?
Counting down the days.

Hello to all xxx

Abney · 18/09/2012 20:50

Hi Buster 8.4 is fantastic although I know it is still such a worry. Good luck for Thursday. I will be thinking of you. I have only told my manager at work who is more like a friend to me. This helps as I don't I have to worry hence why I took the day of sick last Thursday. Apart from that only my mother in law knows as she looks after ds on a daily basis so I couldn't hide it from her. None of my family know. I have quite a few brothers and sisters but this time I didn't want to say I was pg followed by 'I have lost it'. Also I did not want to 'jinx' it either.

Arianrhod · 19/09/2012 09:20

sue hoping you had some positive news yesterday, thinking about you hugs

Havingkittens · 19/09/2012 11:13

Buster, sounds like you're doing well. 184 is some heartbeat! Louise said to me when I had my scan at 8+4 that if by that stage growth is on track and the heartbeat is strong then it's a pretty good sign that all is going to work out fine. I have told a few people actually. I told my auntie straight away as she is pretty much my closest family now. I told my grandma about a week ago and have told my 3 oldest friends who have all been such a support to me throughout this whole 5 year rollercoaster. I ended up telling my step dad yesterday under less than ideal circumstances and am frustrated that I ended up telling him before my dad but it was sort of unavoidable. We also told OH's mum. I kind of needed a few close people around me that knew because of all the other emotional stuff that I'm going through at the moment.

I am pleased to report that I got a text from PQ this morning. She asked me to update you all and thank you for all your thoughts and kind wishes. She's not been able to post because she can't use her phone on the unit. Jonty has been taken off the ventilator and oxygen and is breathing on his own. They will be keeping him in the hospital until he is strong enough to breast feed on his own, for now he is taking expressed milk through his NG Tube. PQ says it's pretty tiring for both of them so let's hope they get to go home soon!

MistressIggi · 19/09/2012 13:54

Great to see some positive scan news from Kittens and Buster Smile
And really glad to hear about Jonty, moving in the right direction.
Hope you're ok Clabbage, and of course hoping for better news from Suemays.

Original poster
sarahs999 · 19/09/2012 14:09

Hi all! Mr s has def lost weight. Currently at nl waiting for intralipids. Scan was good - measuring ahead by nearly a week so no wonder I can feel movement already!

OP posts:
Arianrhod · 19/09/2012 14:21

Wonder if his doctor told him to lose weight .. :)

Excellent scan news sarah and buster for last Friday's scan, always great to see positive news, and good luck for your scan tomorrow buster.

And iggi loving the new nickname :)

GreenOlives · 19/09/2012 18:05

Great scan news Buster and sarah! Grin

Mollie I didn't need intralipids as only have high NKC as opposed to very high. So my NHS consultant just prescribed the meds and gave me lots of scans in the early days - poor Dr S would just be going to Butlins on my contribution to his holiday fund Wink Grin

Sue Hope the appt yesterday has helped with the difficult decision ahead.

Clabbage Hope you are recovering as well as can be expected.

suemays · 19/09/2012 20:08

Appointment yesterday was as I expected. The baby will need an operation to remove the larger kidney if it survives birth. The remaining kidney will fail at some point but they can't do a transplant or dialysis under a year old. I have no option apart from to terminate. I can't believe I am writing this let alone letting this happen to my little one. I am in floods of tears writing this whilst my little one is happily kicking and moving around unaware of what I am going to do to it. I feel so guilty that as its mummy I can't do anything to help it. So tomorrow I have to somehow find the strength to let a doctor inject my babies heart to stop it and then they will give me a pill to turn off the pregnancy hormones. 48 hours later I will go in to be induced if labour hasnt started before then. I have never felt this low or empty and I know I will never come to terms with ending my babies life even though I know it's the most selfless thing to do. Tonight in bed I know that it will be the last time I will put my hands on my stomach and feel my baby. I can't bear to let that connection go but I have no choice.

If anyone can take anything positive from my experience its that at least mr s's treatment plan was a success for me and I hope it will be again in the future. The only thing keeping me going is the hope of trying again.

Sorry for not reading everyone's posts but I am finding this so hard. I just pray that no one else has to go through any of this.

Arianrhod · 19/09/2012 21:25

Oh sue, I am in tears here reading your post, I am honestly devastated there wasn't something the specialists could do to help. Is there truly nothing they can do? I can only imagine the pain you're feeling right now and I know nothing I can say to ease that pain, you are facing the worst nightmare of any mummy anywhere. If we can hold your hand through this please remember we are here for you, to support you, hug you (albeit virtually) and most of all to listen to you whenever you want or need it.

I'm so truly heartbroken for you, and I so wish you weren't having to go through this. Take care of yourself, let others take care of you and know we all on here are thinking of you and grieving with you. xxx

MistressIggi · 19/09/2012 21:27

Oh Sue, what can I say? How awful for you.
I take it the expectation is the 2nd kidney will fail before a year?
I wish you strength and some form of consolation over the days ahead. No-one should have to go through this.

snoopygirl · 19/09/2012 21:53

Sue
I am so very sorry. After all you have been through to get here.
Life is just so unfair sometimes. Thinking of you and hope you find the strength from somewhere to get through this.
Love Snoopy
xxx

GreenOlives · 19/09/2012 21:55

So sorry Sue Words are all inadequate. Sad

Havingkittens · 19/09/2012 22:04

Sending you lots of love and strength to get through this Sue. Just heartbreaking. xxxx

Pebbles73 · 19/09/2012 22:06

Sue my heart is breaking for you and can't believe your are having to go through this. I just don't know what to say other than I am so sorry and my heart goes out to you and your family. Will be thinking of you.xxx

mollieboo · 19/09/2012 22:54

sue im so desperately sorry. Sending you much love and strength xxx

Abney · 20/09/2012 07:04

Sue my heart goes out to you at this difficult time. It looks like you didn't have a choice in this in the end and it was the doctors that made your mind up. Thinking of you and sending you lots of hugs.

Cheerfulcharlie · 20/09/2012 07:21

Sue I am so, so sorry for what you are going through. I am thinking of you. It must feel totally unreal and so unfair.

Original poster
sarahs999 · 20/09/2012 09:03

Sue. So desperately sorry. I hope that you and your loved ones find a way to bear the unbearable. You are immensely brave and have already been the best mother to your tiny baby - doing the best thing you can for it no matter how painful. Wishing a peaceful sleep to your beautiful baby.

OP posts:
Jemimapuddleduk · 20/09/2012 09:29

Sue, I have been thinking about you a lot and i was really hoping that there was going to be a positive outcome for you and the little one. I am so saddened to hear what you are going through and i hope you find some strength over the next few weeks to get through this truly awful and heartbreaking time. You and your family will be in my thoughts and prayers.

Buster76 · 20/09/2012 10:47

sue I am so very sorry. What a truely horrendous thing to go through but the right one -to save your little baby from pain. So very, very sad.
Life really is very shit sometimes!!
Thinking of you xxxxx

Chasinrainbows · 20/09/2012 13:02

Sue , my heart is breaking for you. I cant begin to imagine how you must be feeling. As difficult as it is you are making an impossible decision that's in the best interests of your baby. I hope you have lots of support around you at this difficult time. I am really at a loss for words , it's just all so sad. Praying for you xxx