TTC or pregnancy on prednisolone or similar part 9

[sarahs999]

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

Still waiting for answers on how bad the kidney damage is a week after I had my 20 week scan. Nobody will tell us for sure what the outcome could be for our little one when it is born. We dont know whether it could face a life on dialysis and be in constant pain or if the lungs are so damaged that it can't breathe at birth or that it will have kidney problems that are non life threatening. We know one of the kidneys is completely dead and that the other one is not functioning 100% but we dont know to what extent the damage is. All we have been told is that the prognosis is poor and that the baby will have some kind of kidney damage. We dont know what that could involve for the baby.

We have been referred to a paediatrician next Tues at John Radcliffe in Oxford but they probably wont be able to tell us what damage has been done, only give us scenarios of life for people on dialysis etc.

I know that it is more likely that the baby could die at birth or face a life in pain and under constant hospital care but a tiny part of me is wondering 'what if mine is the miracle baby you hear about that beat all the odds'? My husband thinks I am clutching at straws and delaying the inevitable. Maybe I am but I feel like I am deciding whether to turn off the life support machine on my baby. I also cant face having to give birth to a baby that I should be taking home with me instead of it being killed. At the last scan we watched it moving around and it even yawned and stretched like there was nothing wrong with it, I just can't understand how it can be so ill yet look so perfect. All I want to do is protect and help it yet I am so helpless.

At the moment I feel like I am living in a bubble. I lie in bed feeling the baby living inside me and pretend that all is OK and that someone will either tell me this has all been a dream or that a medical expert will say all the others have got it wrong and that the baby will lead a normal life.

After all I have been through to get to this stage I cant believe I am having to make the hardest decision in my life. I wish that it had been different at the 20 week scan and that it had died so that at least I wouldnt have to make this decision. I never thought I would say this after all the miscarriages and I apologise to anyone who might be offended by this. This will haunt me for the rest of my life because there is no clearcut answer from the experts. My husband wants to terminate it as he says that even if they give us a 90% chance it would be OK that is still not high enough odds for him as he doesnt want to gamble his future and let if affect the rest of our family. He just wants to get this over with and try again.

I have been talking to other ladies on threads who have kids with kidney problems with varying degrees of illness to get an idea on how life could be. I know it would impact on my DD1 so much that she would never have a normal life either if the LO had to go on dialysis etc and I need to think of her with my DH working away so much. It would be awful too if the LO only lived for a few years and we then had to face saying goodbye to it. I also cant bear to bring a child into the world that could potentially face a life of pain or being fed through a tube and not lead a 'normal' life.

I know nobody can make the decision for me but I just felt like I had to talk to you all as I have no idea where to turn. I cant eat, sleep or do anything and feel like I am being tortured constantly. Its the only time I wish this had ended in miscarriage and now I can appreciate what people mean when they say its better that a pregnancy ended if there was something wrong with the baby. Again I apologise if this comment offends or upsets anyone on here who is going through another miscarriage as any loss is tragic.

Dear Sue your story is absolutely heartbreaking. I think you need to wait until Tuesday for more 'expert' opinions. The fact that you have come so far must make it so difficult for you to come to a decision. Have the doctors advised you to end the pregnancy or are they leaving it to you? Either way the fact that you are being referred still gives a bit of hope doesn't it? I am thinking of you and praying that you are given some hope on Tuesday or at least a worse case scenario so that you can make a decision based more on facts.

Dear Clabbage so sorry to hear your sad news as well. It doesn't matter if you expect it or not a loss is still a loss and I think we can all share your pain. Sometimes this thread is so damn heartbreaking. I hope you recover quickly from this. It's just such a rollercoaster of emotions. Sending you a big hug.

Sue I am so pleased you still feel you can come here and talk to us but so sad for everything you are going through. I really hope you get some more positive answers on Tuesday, but like you said they might not be able to tell you exactly how much damage there is to the second kidney. Is that something they wouldn't be able to find out unless a baby was born? It's so bloody heartbreaking hearing how you can see it moving. I can't imagine what you must be going through and yes I agree with you about the miscarriages - this is really far far worse, despite miscarriages being so heartbreaking too.

So sad to hear about your news too Clabbage. It must have been a dreadful dreadful scan today.

You're right - it's Friday and that means that merc must have had the baby. I can't wait to here from her. I also think about Charlie, Coconut, Stogan, Comedy and others and wonder how they are getting on. As busy as me I imagine! We do get rare drop ins from Digi and Battery.

I too am wondering how Snoopy is and how the treatment is going. Snoopy if you are ever lurking please do let us know.

In the meantime so so sorry again for both Sue and Clabbage. If we can help in anyway do let us know. Sue - hope you get some news that will help you in one way or another on Tuesday although I realise it's a rock and hard place situation.

Sorry Clabbage. It's a shame that all we can wish you is that it is over quickly, but I do hope that. Then it's possible to start healing.

Sue I think all you can do is what you have done re the miscarriage/nkc situation - get all the information you can. I assume you can take whatever time you need to decide. Are there charities that work with kidney disorders you could contact? It does sound like there is still some hope, I would find it so hard to give up on a baby you have struggled so much for already. But that is talking with my heart, not my head, as you say you have others to think of too. There must be a lot of experience amongst mumsnetters about life with a (potentially) disabled child, as well as information about choosing to end the pregnancy. I hope you get all the information you need quickly and the support to see the way forward.

clabbage so sorry to hear your scan news. I hope you get through the weekend ok.

Sue it sounds like you need to explore all options available to you and understand what the prognosis is for your baby. Sounds like you're doing all the right things. Sending you lots of love and hope youi can work your way through this painful time!

Our beautiful daughter arrived safely yesterday at 12:10pm, at 7llb 2 which is a fair bit small than our first little girl born a wk earlier. The elcs was tougher emotionally because I'd built it up but think I'll recover better this time as feel miuch better physically. She is adorable and teeny tiny. Still deciding on names, but will update when we have one, another miracle baby for mr S and Louise!

Just catching up on the last few days, I don't know you all very well yet but felt that I couldn't just read and not say anything.
sue I have tears in my eyes reading your posts I cannot imagine how difficult things are for you at this time especially after, I assume, it was not an easy ride to get there in the first place. Life can be so unfair.
And for clabbage too I'm sorry to read things haven't worked out for you eith.er

mercator lovely to see some happy news there. Congratulations!

Congratulations merc some lovely news. Well done honey. Do let us know her name when she has one won't you?!

sue the curse of all this information that we have access to these days. Sometimes I sit and think about how life would be if we knew less about what could be or happen to us and it just happened and as humans we would deal with whatever it was as best we knew how. It is the weak position such strong ladies like us are put in because we've been battling for so long getting to this stage you must have nothing left inside you to fight back with ?? Obviously we are all unique people, but the empathy that runs through this thread at times can send a shiver down any one as we read of an unbelievable heart wrenching stories. It doesn't seem real because I guess, the parental deaths, cancer, miscarriages, infertility and stories like yours - although part of life - are not usually witnessed so close up. The thoughts and feelings we share on here make this a unique place to be able to share and empathise but does all feel magnified and intensified and pretty bewildered at times. It is like you briefly jump into the place of the person at the time in your head and quickly jump back because it is too horrific to be there? All that we do know is the human mind and soul seems to have some innate capacity to keep going, some survival mechanism. Like a marathon runner. You will keep going and at some point the place you get to will be a little less dark a place than you are now. Kind of like doing time. We all have our versions of it. . . So we are sending you encouragement to just push on and what ever path you end up down you will have made the best decision you could at the time. Huge hug to you sue you will get through -this we are designed to somehow. X

Mercator Congratulations on the birth of your daughter. Enjoy every second.

Congratulations merc and mr merc wonderful news. A little girl to balance out the boys! Hope you are both getting on well. x

Sue you are so brave. I am glad you feel you can share your anguish with us, but I wish that you didn't have to feel it at all. When you see the specialist next week I hope they can give you some insight to help you make whatever decision is best for you all. You are doing absolutely the right thing, arming yourself with as much info as you can before you decide, but it must be impossibly hard. We will be here for as much hand holding as you need. Thinking of you and your family xx

Congrats Mercator! Wonderful news. Will update the list when I'm not on my phone (or maybe some other kind soul can do it).

Sue you and your dilemma are on my mind constantly. It must be utterly impossible especially when your dh is pulling so hard in one direction. Has anyone ever talked about whether kidney transplants are an option - either early on after birth or when baby is older? I think if I knew that that was an option and might lead to a more normal, stable life for the whole family it would colour things differently. But as you haven't mentioned that I wonder if that all just wishful thinking.

Hello lovely ladies - thank you for thinking of me.
Oh my where do I begin........

Sue I am so very sorry you are having to endure this. for the first time in a couple of months I popped in to see the news last week and was so happy for you. And now this. I cannot imagine how your feeling, numb no doubt and on the floor with worry. I am thinking of you and hope with all my heart that things will be clearer on Tuesday and that you can make a decision based on what's best for you and your family.

I put a post on a BC website yesterday and this is how I feel at the moment after FINISHING CHEMO!!!!!!!!!!!!!!!!!

"Wow don't know how or if I can express what I feel tonight. My words may be inadequate but all I know is tonight I just have tears rolling down my face with relief.
Relief chemo is over. I had my last Chemo (3 fec/3tax) last Thursday and I am a week on. I thought the emotions might spill over as I've been quite together for the duration of the chemo. The first time I have spoken with BC nurse was the other day.I didnt' think I needed her, I thought I was tough. Whereas actually it was quite nice to hear her soothing tones over the phone, sympathising with my stupid worries over surgery to come and radiotherapy. Saying that it's taken a week to get hold of her.
What i'm trying to say is I feel free. Free of drugs. Free of injections (last one last night). Free of picc lines. Free of being wiped out. Free of painkillers. Free of being bound to my bed. I never want to feel vunerable again. Ever. It's felt like being imprisoned since May.
I went out on my own this afternoon, no chaperone in case I felt unwell. Just me in my car with music really loud. Do you know how normal I felt? I think only those that have been through this will. it was like a revelation, kind of rejoining the human race!

All the cliches are true:

I will slow down, live for the moment, appreciate what I've got and take time to enjoy it.
I will never take my health forgranted again.
I will be forever thankful to my Mum and Stepfather whom have done everything I have needed and been there there without question.
I will cherish my darling boy who has just taken all this in his stride.
I will hold dear my husband and friends who have just kept things normal for me.

And thanks to my gorgeous kittycat whom seems to have a sixth sense of when i'm down and has kept me amused through all this. He is now a leggy rascal who has grown up whilst I've been in bed the last few months. I never knew pets could be so comforting and perceptive!

This is starting to sound like an Oscars acceptance speech so i'll wrap it up!
I know I am not out of the woods yet. I still have to wait for the final results after surgery but I feel the debilitating bit is over and i can only feel physically better day by day from now on.
I feel so happy to have got through it and proud of myself and can't wait to restart my life (Someone warn me if this is some kinda post chemo euphoric afterglow!)
thanks for reading hope I haven't bored everyone stupid."
Cxx^

Sorry about the massive post but this describes how I am feeling now. I now have surgery on Oct 4th which I am lucky at the moment to be getting away with a Lumpectomy as the chemo has shrunk the lump by under half and surgeon said I was in the 1/3 of women who respond that well. But I am not ruling out a Mastectomy yet as it depends on the testing of products afterwards. but nothing nasty showing on the MRI I had last week so hopefully be ok. Then it's onto Radiotherapy everyday for 3-4 weeks. But this is all going to be a breeze compared to chemo. I've done the worst bit. It's been gruelling and the most frightening experience I have ever had.....but I've done it!!

anyway enough about me how are you all???

Free,PQ,Merc Congratulations!! I know I've missed a couple of babies in there forgive me. You did it and I hope it gives hope to the others ladies who are still trying.
Hey until the miscarriage thing I had never posted online about anything. But one thing is for sure there are some amazingly strong, articulate and sassy women out there and that includes all of you and I feel honoured to have got to know you.
Jeez just off for another blub!!

Where do I start?!
sue Life is so very very cruel sometimes Like others have said hopefully the experts in Oxford can supply you with more information. How the hell can anyone make that decision?! Feeling and seeing him move and looking so perfect. There must be something they can do!!! Thinking of you x

clabbage sorry to hear your news keep strong x

merc congratulatioons!!! She sounds perfik!!

xx

Lovely to hear from you snoopy
What an amazing post! I think I need a blub now!
These life changing events really do put things in perspective.

xx

sue through all your heartache and pain it does sound like you are doing all the right things at the moment. Looking into life on dialysis, considering DD. But it must be incredibly difficult not knowing exactly the prognosis. How anyone can be expected to make a decision on percentages is beyond me. I wish I had the right words of advice and comfort for you. Possibly a pointless piece of info but my dad only has one kidney, seems he was born with only one and it wasn't picked up till he was in his fifties when he went for an unrelated scan.

snoopy so great to hear from you, thank you for your post! Wonderful wonderful news that you're through the worst of the treatment. You must feel like a superwoman to have endured all that. Your dh and family must be so so relieved that things are looking so positive. Enjoy your post-chemo high!!!

And finally mercator congratulations on the birth of your little dd!! Enjoy those hard earned snuggles! Xxx

mercator, congratulation on your new arrival! Ha, I was beginning to think we were only producing boys on this thread!

snoopy, your post moved me to tears! I'm so pleased you have got through this and are now free to enjoy your life again. You must feel like you're floating a couple of inches off the ground at the moment. I can well believe what comfort and light relief your lovely kitty must've brought you when you were stuck in bed feeling miserable too. His arrival was perfect timing. Thanks so much for sending the pred by the way, it arrived this morning.

sue, you continue to be in my thoughts. I've just finished work and am heading out but when I have some proper time I will PM you. x

Hello everyone

sue I?m so sorry for everything you are going through. Its so difficult not being told what to do and having to make a choice when you don?t even know exactly what you?re facing. What a terrible time for you both. I completely understand why you wish the choice had been taken away from you instead of going through this. Wishing you both much love and strength, I hope you get to know more on Tuesday.

mercator huge congratulations on the birth of your baby girl, such lovely news. Love to you all.

snoopy what wonderful news, what an amazing post. Enjoy every second of your new life.

clabbage hope you are holding up ok this weekend.

What an emotional thread this weekend, hello and love to all xx

PQ - hope you and little Jonty are doing really well. I thought of you today having heard from my firend who had the brocken waters since 22 weeks. See had a lovely little boy yesterday at 33weeks+0, just five days after you. She said the little lad is doing ok, but that she has not been able to go to see him yet, I hope they get her to him today. My oldest nephew was born at 33 weeks 22years ago, he is a fantastic young man now and very quickly it is hard to believe they are a premi baby. Any way I hope you and your young man are ok.

Question. Would u want to be pregnant and going through all this treatment on ur wedding day? Would it be a completely bad idea? Be grateful for anyone's thoughts on this

Well, I wouldn't want to be anywhere in my first trimester while getting married, treatment or not! It's bad enough with morning sickness and tiredness.

On the other hand, depends on your circumstances. If you're as old as me nothing would stop me getting on with it!