Immune/NK cells pred thread #33

[Jecca88]

Hey Guys, starting a new thread as we have run out of space - hope i have included everyone and sending lots of love x

@venusStarr
@Gizmo1983
@Carportforme
@Meg310532
@Newbeginnings22023
@recurrentmis
@hopefulH
@v60
@lozzmax
@fleur89
@motherofshihtzus
@sunflower360
@kea1990
@sprinkleofbabydust
@star2022
@rumandspinach
@ems123456789
@rainbowsunshine81
@mamaw05
@thornters
@elarcoiris

hey @Jecca88 you take as much time as you need your mind and body need a bit more time. How long is it since your d and c? If you’re still bleeding or have a positive test after 3 weeks that’s when you need to contact them, at 3 weeks my test was still super strong that’s when I went in and had a scan and they found the retained product🤦‍♀️ I have got my arms and legs crossed you haven’t and your body is just taking a while to settle.
I only found out about the blood loss as they were going to give me misoprostol but said I’d have to be admitted as I’d lost so much blood at the mva ffs.
that sounds so much better with the ivf if you can get referred after all the trying I’ve ho early found ivf a breeze, ovulation tracking and those strips gives me ptsd these days and it was nice not to time sex and all of that palava and just enjoy life a bit more. You may also find out more about egg quality if you pgt test.
I think I would be so much better with all this if I knew why not sure if you are all the same, my uterus and ovaries are fine all blood tests from CRP and nhs are clear even on the CRP protocol I lost at 10 weeks. Had ivf and pgt test and tested losses are genetically fine. So what on earth is wrong all drs have said not an implantation issue all they can say is the quality of the egg and sperm even though pgt tests came clear even then would I have got to 15 weeks due to that. The only thing left is my age and I’m a but stuffed with that
@Meg310532 i wish you all the very very best for your scan. Bless you I remember being aoooo tired with the steroids xxx

@Jecca88 the other thing u meant to say is my ivf clinic had me in steroids, blood thinners and aspirin and progesterone injections and pessaries so everything except the hydroxy and intralipids x

@Meg310532 oh that's interesting about the blood tests - what was your white blood count reading? My reading back in November at the beginning of this Pregnancy was 11 whereas before it was 5. Annoying about the tiredness from steroids, I think i also had this but put it down to the pregnancy. what dosage are you on with the steroids?

@Gizmo1983 My D & C was only last Monday the 20th - but my bleeding is fresh blood which normally tapers off after a couple of days - I have had two D and Cs before this too. Dr Edge called me yesterday to check in - and i had quite a few questions. She said we can't make a plan until the results come back from the cytogenetic testing. She said that sometimes with a CH - results come back clear and there is a difference in genetic issues and chromosomal issues. But geneticists can't test for every genetic defect as their are millions that could occur. So if the results came back clear and we did IVF with PGTA testing - there is still a risk we could have a genetic issue or defect with a testing embryo. She did say even if the results came back clear - the CRP would likely want to change the protocol despite thinking the immune stuff worked. I guess i just have to be patient.

I will still have the convo with the GP to ask for the IVF referral. I always wanted two children - so it might take the pressure off with having some embryos in the freezer and checking egg quality. Wishing i could win the lottery and just pay for all this with the winnings,

Hey @Jecca88 that was lovely of dr Silva to call you. I never thought about genetic and chromosomal being different I just kind of bucked them together. I guess I would fit into the black hole of the pgt and cytogenic test of probably there was something wrong with both but it is one that science can’t detect yet.
i will probably book an online consult now I have the result with mr shehata i know he said the treatment he would want to use on me next would mean moving close to them 🤦‍♀️🤦‍♀️🤦‍♀️ but still it’s worth seeing what he says at least then i/we can decide whether if we are lucky enough to get pregnant again go with them or try without. I am finding it so hard to deal with the money I’ve blown with no result and all the things I could have done with it, it’s silly but I may as well be honest lol.
i saw my other dr yesterday we got chatting and u mentioned donor eggs this dr had actually worked in this area for a while and she was saying that while they won’t have the woman’s dna there’s the epigenetics which is quite interesting. I know I should probably do these 2 ivf rounds esp when I’ve got one free but am still tempted to just go straight to donor im just sooooooooo sick of this process now.
hmmmm strange about the bleeding when I had my d and c it just stopped very soon after as well I really hope it settles I just knew something wasn’t right and went for a private scan as the hospital wouldn’t listen. Have u tried doing a pregnancy test to see if your levels are falling xxx

@Gizmo1983 yeh it is strange - you had cytogenetic testing on your 15 week loss didn’t you. Maybe it was something genetic or a heart defect :( and the 10 week loss - could that be down to immune? It’s so hard isn’t it - I feel like I could be an expert on all this and then I go down another research rabbit hole. I’m feeling ok today - having some random productivity sorting through things in the house.

I have read this about donor eggs and sharing genetics with the mother who carries. My best friends who are in a same sex relationship - are pregnant with their 2nd IVF baby and the one who is carrying has the other one’s egg. The ‘birth’ mother feels super connected. Defo give your eggs a chance if you have a free round left but know that Donor is also a fallback!

it’s so hard not to be cross with the cost of this and how unfair it is especially if nothing has worked yet. I alway say CRP have a 80% success rate so it has to be worth it. Maybe the 20% who it doesn’t happen for stop the treatment.

I just did a pregnancy test - and it’s pretty positive straight away :( not as strong as the last one which was only 5 weeks pregnant. I need to give it another week and a half I guess.

x

@Gizmo1983 Been reading through the recent posts on this thread and wanted to say that you are very much on my mind to be truthful. So many difficult decisions seems so unfair. I so hope you get your baby because my God you deserve it.

@Jecca88 Tentative congratulations. I am crossing absolutely everything for you and again you so deserve this.

I am now 4 days into my post ovulation prednisone. Not too many side effects so far so the waiting game begins x

Oh @Objectiontime sorry I had a miscarriage and a d and C last week so the positive test is still positive from the miscarriage as still have HCG - sorry to confuse 😞

Fingers Crossed for you this month!

@Jecca88 Ohh God, so sorry. Serves me right for not reading properly and reading too late in the evening. I am so sorry to hear. Just read the rest of the thread!
Thank you for your sentiments for me. We are all so supportive of each other on here, it makes me quite emotional x

Hi @Objectiontime thank you so much for your kind words fingers crossed for your test day x
hey @Jecca88 how are you doing? has your bleeding settled a bit? I hope you are feeling a bit better in yourself although I’m still having ok and bad days and mine was in November xxx
very little update from me, we called create to start the ball rolling on donor eggs, the secretary seemed quite surprised and said oh we only really look at DEs when you are over 45, anyway we have a scan, sperm test and then a consult booked. 2 friends have had their babies born this week so it’s been a bit of a tough one for me xxx love to all xxx

Hey @Gizmo1983 wow that is so reassuring about about the age for DE! That must have felt good to hear, the receptionist needs a raise, also amazing you are getting the ball rolling for this. Bleeding has stopped which is reassuring and finally on my last day of pred today, so I am glad to be off the drugs from tomorrow. I still having the insane night sweats so hoping they will die down soon. After two weeks off work and basically hibernating with my husband and dog I felt ok to go back to work tomorrow. But then yesterday morning I got a message from my best mate who announced she was pregnant - and basically a couple of weeks behind what we would have been. This is her first pregnancy and she has moved 10 mins round the corner from me at the end of last year and honestly just felt like an absolute dagger to the heart. It knocked me so much and just makes me want to hide all over again. I know I need time to process but it really is a reminder of just how shit we have all got it here. I can’t believe we have had to endure this and how we just have to get on with life. Very complex feelings to process and I’m sorry @Gizmo1983 that you have had two births this week to process, just be kind to yourself and no pressure to do anything. Xx

@Meg310532 how are you getting on? Been thinking of you xx

@Jecca88 hi hun! Urghh i just read your message above about your best friends announcement that is honestly so so shit and such a dagger to the heart I can’t even begin to feel how you are right now hearing that. Can completely appreciate how that’s going to make you feel like you are back at the start of this healing process hearing shit like that :( !! So so sorry you are having to go through all this. I’m glad that the bleeding has stopped hun. Are you still wanting to give yourself a bit of a break from everything ? Glad you don’t have to be on the pred anymore too hun! I’m okay thank you, feeling a bit anxious about Wednesday & still massively protecting myself. I just hope that everything is okay ! X xxx

Agree with what has been said here about announcements. I have really struggled with these too. Someone brought their new baby to work last week. If I ever get lucky and have one myself I wont be doing that. I'm so,so aware that there are others struggling like us and I absolutely dont want to make them feel even worse.

@Jecca88 @Objectiontime it really is like a punch in the stomach isn’t it, like a real, genuine pain. I am so sorry to each and every one of us who has to feel it.
Jecca I’m so pleased your bleeding has stopped that brilliant.
@Meg310532 got everything crossed for you x
i was pleased about the own eggs but I can’t help feeling donor egg is the way for us. I think this will be our last shot so I want it to be our best shot of a live birth iykwim. Xxx

@Gizmo1983 thank you so much ❤️ ! I will let you know Wednesday how things go.
i watched this programme with Katie price the other day about her going through IVF and I was shocked that the chances of her success rate with IVF And donor eggs went from 1% with her own egg to such a increase in percent with donor egg. I know it’s such a hard decision but you will carry that child and you will love it regardless. I know you will come to a decision that is best for you. I just have everything crossed for you. Xxxxx

ahh Ladies i knew you would understand @Meg310532 @Objectiontime @Gizmo1983 - it makes you feel like a terrible person how you can't just feel joy for someone else. ATM i don't feel like i can engage with it at all. WE are supposed to be going on a trip with them in march and her pregnancy is just going to be so triggering for me as she will be at similar milestones to what we would be with our baby 'Olive' (that's what we have called them).

@Meg310532 i think i do want a break, i would try again straight away if i knew the next pregnancy would work - but i just can't go through another loss so close to this one. I still feel broken. I am holding out so much hope for this one for you!

@Gizmo1983 - have you had PGTA testing before on your own? i am sure the doctors will give you all the info you need to make your decision. We are here to support you xx

@Jecca88 it’s the most triggering thing in the world! I have a friend that announced her pregnancy the same time as me on my last pregnancy which was my last missed miscarriage . And I have a watched him growing up and it’s been so hard as he would be the same age as my last ! Unfortunately as selfish as it seems I have really struggled to continue my friendship with her the same way. He was an accident for her too which just made it even worse! Even if he was an accident why tell someone you know is struggling so much to have a family that they were an accident !???
thanks so much hun, I am holding out as much hope as I can whilst remaining guarded to protect myself. I am wondering when is it he starts weaning people off pred do you know? I am really struggling with the side effects, it kmows me out every day after a hour of taking it, I can’t even drive I’m so out of it xx

Oh @Meg310532 i am so sorry and that is a big fear of mine. She has moved round the corner and we are best mates - but she is also super avoidant and i can't be honest withher about my feelins, so really i will just have to distance myself. It is a fea that we will lose our friendship - just need to know how to overcome this. The comment from your friend about it being an 'accident' is incredibly insensitive I don't think you have been selfish - just protecting yourself.

I had to wean off pred at 14 weeks - a little bit later as i had a later loss intially. But i think usually its 12 weeks. what is your dosage?

@Jecca88 it’s so unfair that we are faced with these horrible situations where we not only lose our babies but also friendships but the fertility world is the most lonely place sometimes no one that isn’t directly going through it has any idea what we have to go through! Not even I fully understand your heartbreak of what you have been through recently everyone has their own journey and I just honestly do not understand humans sometimes and how insensitive they can be. You have to do what’s right for you hun and not feel guilty if you need to distance yourself. Maybe you will be able to re build the friendship again once you get your baby! Do you still feel hopeful with CRP that they can get you there ?? I’m on 25mg a day (5 tablets) I really hope I can wean off soon!! Xxx

I actually prefer avoiding people and keeping my sanity (to an extent). I guess I'm just not prepared to put myself through the emotion. I take the view that if I do get lucky I can make some friends with children then but at tge moment, I'm best steering clear. My other half doesnt get this though. We are fortunate that we dont yet have rpclose relatives with babies or who are pregnant but I do dread this happening and him wanting to visit and me wanting to stay away.
I do find though that if someone tells me they are pregnant and follows it with some comment like "we'd been trying for ages" or similar I cope just fine and feel really happy for them. If no comment us made I just assume no issues and just feel miserable and jealous to be honest.

@Meg310532 i think i still have hope with CRP - just have to wait to see what the results say after we get the genetic results. They did mention to me another drugs that would need close monitoring - and i am sure would be very expensive - so just have to weigh this up when we get there. I was only on 20mg, not sure if you can ask to be on that dosage and see if it makes a difference. You won't believe it but my other best friend is also pregnant - i think only 6 weeks - she hasn't told me directly but my other best mate told me and had to warn me as she wants to tell me face to face - honestly what is wrong with people - has she not listened to anything i have ever said. I just want to hide - or just move away and almost never have to deal with friendships.

I also totally know what you mean @Objectiontime - it shouldn't be the case but if someone has struggled or had fertility issues - it doesn't feel like such a blow - more hopeful and that they have overcome their struggle.

@Jecca88 face to face ….. is she okay??????? What is wrong with people! I do not want to be forced into a situation where I can’t hide my emotion and feelings ! People don’t have a bloody clue do they! Ridiculous. It’s crazy isn’t it. Just makes you want to hibernate and feel angry at them for being pregnant. I have hope for you still too with CRP! How much longer till you get your results ?? … I feel sick to my stomach about tomorrow morning today. Feel really apprehensive with what to expect xxx

Yeh @Meg310532 it makes me feel like why are you compelled to tell me so early. My Therapist sometimes think people are telling me as a way of comeptitiveness - in an unconscious way like they have won - which feels too sadistic and i couldn't get my head round it. In my group of friends - my marriage is one of the strongest and sometimes that does feel a bit like jealousy, but surely not. I also just hate the pity people feel - there is no right way to recieve the news - its always gonna feel like a stab to the heart.

Oh Babe I really feel the anxiety about tomorrow, remember you can't control anything that is happening but you are doing everything you can to make this pregnancy successful and doing all the right things. I know that they understand the anxiety - so they will scan you almost right away and tell you within the first min of scanning. My heart rate is always about 140 ahead of a scan, just try and breathe through it. How you getting there? how far is the journey?

@Jecca88 blows my mind !! I do feel the same , it almost makes they feel better about their life like they have one up on you, jealousy perhaps due to your strong relationship like they want to show to that they have something that you want when you clearly have something they want with your partner. God it’s so messed up isn’t it !! What will you even say to them when they tell you. Bloody hell!

ahh okay that’s good to know that they will tell me almost immediately, I’m so pleased it’s at 9:30am too so nice and early, I couldn’t be waiting around all day !!! It’s going to take me about 2 hours 15 mins from my husbands mums. So not toooo bad !! It’s so weird they they want you back the week after for another scan it seems so quick to have to come back ! X x

@Meg310532 I am just not going to see them if they try to arrange. I am staying in my bubble for as long as possible. I have also told my other mate to make sure she advises her to not to do it f2f or over a phone call.

Maybe its my way of being angry at something.

Bless you that is an early start - i am glad its early. Is your husband going with you? So you will be 6 and 1/2 weeks tomorrow? Yeh my scans were two weeks apart, but depending on what day they fell.