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TTC or pregnancy on prednisolone or similar part 9

(999 Posts)
sarahs999 Fri 31-Aug-12 06:24:33

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

Abney Fri 07-Sep-12 07:02:18

Hi Clabbage thank you for your wishes/prayers yesterday. After hearing about yours and Mollies losses and then seeing your kind comments I wanted to burst in to tears. Life is really unfair. I hope and pray that everything is OK for you both in the future.

cornflakes30 Fri 07-Sep-12 07:54:24

Hi all took me ages to find the new thread. Well I had my scan on Wednesday and yet again not good news lucky no 7 it's not, I'm only measuring at 5 weeks no heartbeat and it should have been 6+2 so not even close Of course they won't say it's a mc but she is ckncerned it's eptopic great!!!
They say oh it may be ok well after 6 times before I think we can say its not, no point jn dreaming!
So I'm booked into epu in two weeks to re scan hoping it all happens naturally before tho. It's just not fair anymore.
7 mc jn 3 years have tried just about everything I can think
We have decided to go to
A private clinic now to get someore tests but can't decide which one has anyone any experience? I have been looking at zita west dr gorgy and st Mary's they are all do different it's so expensive I want to go to one that covers everything not just bits. I have been to st Grorges and st helier
I have v high nk cells already and a thryroid problem. I think it's my egg quality but what do I know!!!
Thanks for listening to me waffle on

iggi777 Fri 07-Sep-12 08:18:47

Oh Cornflakes I am so sorry. How absolutely unfair. I know it is easier not to have any hope, so I won't talk about that. I only had tests with Mr S so I don't know about the other clinics - someone on here has seen Dr Gorgy I know.

mollieboo Fri 07-Sep-12 08:32:36

cornflakes i'm so very sorry to hear your news, hugs to you both x

I've been to mr s too but am sure someone on here has been to dr gorgy.

Havingkittens Fri 07-Sep-12 08:39:30

Oh cornflakes, I'm so sorry sad. x

duggs has been to the Zita West clinic. They do sound very thorough. Why don't you PM her? She's a mine of information and always very helpful in sharing her findings.

Arianrhod Fri 07-Sep-12 10:22:58

cornflakes So very sorry for your sad news sad I think it's duggs who has also been to Dr G, she's definitely the mine of information that kittens says she is!

Abney Fri 07-Sep-12 12:51:51

Hi Cornflakes really sorry to hear your news. It's just so unfair. Thinking of you at this sad time.

batteryhen Fri 07-Sep-12 14:52:54

Cornflakes sad xx I went to St Marys and found them to be really thorough x don't forget you can go on the NHS to St Marys which is what I did. I think ( not sure) that you can self refer? Give them a ring when you feel up to it xx much love to you xx

duggs1976 Fri 07-Sep-12 15:25:52

Oh sorry cornflakes really sorry. Yep unfortunately I've been to them all. St marys raj rai, dr s, dr gorgy and zita west. The main thing I've found is everyone is an expert in their own little area and they can be a bit blinkered. If treatment isn't working then we should look at other areas. PM me your history and I will try to answer with the most relevant thoughts and info i can. Big hug.

Clabbage Fri 07-Sep-12 16:11:32

cornflakes am gutted for you. I know that a glimmer of hope is not always useful but I have had a successful pregnancy that initially measured a week out.
I had a scan today (having seen no hb at 7 weeks) to find a teeny 5mm embryo with a heartbeat. I should be 8w 2 and measure 6w 4. I now have no idea what to think! Has today just delayed the inevitable or is there hope? I have had 35 day cycles which would account for a week, but 2?? I see Mr S tomorrow, so another scan and his opinion may help. Still, I am now officially pregnant until proven otherwise.
I have to say the NHS were great today (v mixed experience to date) and made the effort to find a consultant who ventured down between c sections to have a chat with me. He has provided me with Fragmin if I want to take it. Any thoughts?
arrinrhod are you now at the end of your anti B's and does that mean you are trying again? Sorry, just trying to get to grips with where we all are.

suemays Fri 07-Sep-12 17:46:21

Cornflakes sorry to hear your news.

I also have some bad news - just had my 20 week scan and the baby has an abnormal kidney. It is double the size it should be. I have no idea what the chances of it surviving are etc so have an agonising wait over the weekend to speak to someone. Tried calling Mr Shehata but he is home for the evening.

Arianrhod Fri 07-Sep-12 17:48:14

clabbage Where there's life there's hope - or in this case, where there's a hb there's hope! No, I finished the anti-bs a few weeks ago, then had a hysteroscopy, now on cycle 5 of superov and having cd10 follicle scan on Monday.

mercator Fri 07-Sep-12 18:00:57

Cornflakes so sorry about the scan. Duggs is the best person to advise on alternative clinics. Just so very sorry and gutted for you.

mercator Fri 07-Sep-12 18:11:52

Sarah thanks for opening a new thread. Was completely stumped why there were no more posts until I tried google.

Sue so sorry to hear about the scan and very worrying for you regarding the kidney. I presume they are sending you to see a fetal specialist. I am not sure which hospital you are under as I know you are relatively close to me. I can recommend Mr Mark Selinger at Royal Berks but not sure if that's close to you or not.

I know there has been quite a lot of positive news on the new thread so congrats to those ladies, Abney, Olives and Kittens.

Welcome Clabbage and fc next scan is positive.

Sorry if I missed anyone.

just been for my pre op appt today for elcs next Friday. Absolutely terrified of the op and recovery and hoping lo ok as measuring a bit small by tape measure but they haven't scanned for growth. However, baby has turned and is now breech! Do feel extremely nervous and until I know baby is well cannot get excited. Dh away until weds so just hoping lo stays put!

Arianrhod Fri 07-Sep-12 22:37:51

sue So sorry to hear the news about your baby's kidney. Fingers crossed there's something helpful a specialist can do to help.

iggi777 Fri 07-Sep-12 23:12:27

That's so worrying for you Sue, a shame they gave you that news and then no-one to talk to about what it means.
Although you are probably desperate for information I don't think this is a time for Dr Google, can stress you more.

iggi777 Fri 07-Sep-12 23:19:03

Clabbage seeing a hb is always reason to hope, though I know sometimes hope can be the cruelest thing. Glad you have an appointment soon to talk it over.

Just to say Mercator, my doctor told me when arranging my elcs for ds2 (who was breech at the time but turned) that a breech baby was slightly easier for the docs to get out when doing a section.

Abney Sat 08-Sep-12 06:56:56

Clabbage good luck today with your scan. A heartbeat is really good. Hopefully Dr S can shed some light on it all. Suemays sorry to hear your news. It is a shame that noone was there to talk to you. Is DR S not working today? or Louise?

Mercator good luck for next Friday.

cornflakes30 Sat 08-Sep-12 09:11:02

Thank you everyone for all your kind words I had done spotting last night do looks like its starting which is good at least I can move on and know bits a definite mc.
Cabbage you poor thing such a worrying time but a hb is great news and growth since thd last scan ax well which can only be positive. FC for you it stays strong.
Suemays bless you thinking of me when your going through so much how scary I can't believe there was no one to talk to you to pug your mind st rest hope everything is ok xxxx
Duggs thank you so much I will pm you with questions thank you xxxxxxx
Hope everyone enjoys our summer weekend xxxx

suemays Sat 08-Sep-12 11:48:31

I spoke to mr s this morning who has made me feel slightly better. He said it was very common and that so long as there is one working kidney the baby is not at risk. I am going to try and get an appointment at the fetal medical centre in Harley st on Monday to see how bad the kidneys are. If they are both abnormal I will probably have to terminate the pregnancy as the baby won't survive. I was just starting to relax as the baby has been really active and nothing was picked up on my other scans. I just hope that the other kidney is ok. I wish now I had my 20 week scan privately as I would have had the answers straight away. The next few days will be torture.

freelancegirl Sat 08-Sep-12 12:14:11

Hi all, sorry about the less than frequent posting from me. Still polishing my new skills!

So sorry to hear of your losses Clabbage but welcome to the thread. The thought of cot death strikes a cold chill to a paranoid new mother like myself so I can only being to imagine the life-changing heart ache you and (of course Mollie too) have been through.

Sue what a stressful situation for you - after everything that has happened to get you to this stage too. Glad Mr S was able to help you feel more positive about it. When are you likely to get the results back? Is it worth you going for a private test at somewhere like the FMC too? Am sure the NHS are pretty thorough as well, just agonising waiting for the results.

And Cornflakes am so damn sorry for you too. We all know what that pain is like and I hope the girls here can offer you some comfort. It's so a painful, sad slog. I hope Duggs can help with her encyclopaedic knowledge of testing. Sorry you've been a bit despondent too Duggs. It's only natural. Am hoping that Kittens BFP helps those who have been trying for a while without one keep going. Like Battery I went to St Mary's after my 4th mc but by the time I had got the appointment I was pregnant again with this successful pregnancy. But they did give me regular scans which was nice.

Good to hear some good news too with pregnancies progressing and good scans! Merc - wow to the CS next friday!! How are you feeling? Do you know what flavour the baby is yet or is it going to be a surprise. Can't remember now whether it is your first or not <glares pointedly at you all for not keeping up the list for quick referral!--

Am out and about a lot now - getting the pram up the steep stairs of the flat is a challenge I have finally mastered - but very little time to sit on the computer at home being that once we are here he likes my full attention! He's not a great sleeper either and does not go down in his moses basket in the daytime. Sleeps wonderfully when out and about in the pram - but that kinda makes it difficult to follow the 'sleep when the baby sleeps' advice. He will be 8 weeks on Tuesday! Still can't quite believe it.

Got to run as we are getting ready to go to the Olympics later and need to try to master the sling. Love to all - keep going everyone, you will get there xx

Havingkittens Sat 08-Sep-12 16:39:48

Oh sue, you poor thing. You must be feeling so anxious. I don't know if they are open at the weekend but you could try giving ARC a call for a chat. They are really nice and will be able to talk things through with you, hopefully help rationalise things and put your mind at ease. Their helpline number is on this page www.arc-uk.org/contact-us

I have made my appointment for my Nuchal at FMC, it's on 3 October when I will be 12+4. Only thing is I have also got my date through for my NHS 12 week scan/Nuchal which is 28 September (11+6) so I'm at a bit of a loss what to do. I wanted to have the private one first but don't know if they will do it at 11+3, which would be 26th. I want to go on a Wednesday because that's when the professor is there, who is the top guy in the country. I'm starting to get anxious about it too as, where before I was just tackling one 'bridge' at a time and thinking that I may not make it that far so no point stressing about it yet, but now it's looking more real. Gulp.

suemays Sat 08-Sep-12 18:54:40

free I am going to try and get an appointment at FMC on Monday to get some answers. Mr s suggested I see them as they are the best in their field. I just don't know how I will cope if the outcome is bad.

kittens i would try and change your nhs nuchal scan to after the FMC one. Mr s said that the team at FMC are all really good and that if there is a problem they would get you back in on a wed when the top guy is there so don't worry too much about the day of your scan.

Clabbage Sat 08-Sep-12 19:30:39

Sue I want to stamp my feet for you and shout it's not fair. I fervently hope that you can get confirmation that all will be ok asap, I just feel sad for you that yet another barrier has been put in your path.

Thanks for all the kind words and understanding from you all. Today wasn't great news. Slow heartbeat, slightly enlarged yolk sac and behind in dates is likely to end in mc according to Mr S. I guess it's what I expected. I now just have to wait for my body to decide what it's going to do. It's been a long day as I live in Devon so I drove up and back to NLC today, Just feel a bit numb right now. It will no doubt hit me soon.
havingkittens I hope you can get your nuchal scans sorted. It is great to see you looking ahead. I know every glance ahead is tempered with 'if I get there' but my goodness, you deserve to believe.
Abney hope you are getting on ok? Sorry to have caused you a few tears...but hope they mean those pregnancy hormones are on the rise!

Clabbage Sat 08-Sep-12 19:38:59

Iggi Really glad the counselling went well. I think if you get someone you click with, it can be fantastic. I have to confess to having had a fair amount and find it really useful. I used to be very cynical about it but have very much changed my view x

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