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  1. #871
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    Have been locked out of BubHub for days so had to uninstall and then reinstall app on iPhone...so if anyone else having issues try the same. So this was all posted on our immune girls Facebook page...(we have a private group open to anyone to join facing immune issues as our complex protocols, research papers etc can be hard to keep track of on one BH thread, but we make sure to update both so no one kept out of loop if searching for answers on BH alone)

    Mammoth post again😬. Reposted from my immune thread as too exhausted to rewrite so just direct copy. Some immune stuff may not be relevant here, so just skip it, and skip more if too long!! Sorry!

    One important thing I will say at the outset is if you find yourself in a similar situation (emergency in early preg, like before 10 weeks, make sure you go straight to the hospital where your fs who is aware of your potentially radical protocol can treat you, we wasted a lot of time being shunted between hospitals not wanting to touch me for fear of the drugs I was on. Could have just been bad luck/inexperienced ER docs, but just fyi (only reason we went to other hosp 1st was it was closer, but we wasted 2 hrs in process getting to right hosp)....here goes :

    Post 1 - 24/6/13 - Phone about to run out of batt, will update more when I get home. Baby still alive thank god! Rushed to hospital sat night (22/6) with worst pain ever had in life, no bleeding but thought for sure labour/losing baby. Shunted around hospitals, made it to wazza's hospital. Agony all night, even morphine would not knock me out. Appendicitis, all sorts discussed. Scans yest showed massive swollen twisted left ovary, like a tornoquay. Emergency surgery. They tried to save my ovary but wazza said he's only ever seen 4 in 40 yrs as bad as this, was all black and twisted up with my tube, could not untwist it...but they saved our little fighter bear!!! So all that cramping was not just the progesterone, this had been there all along. In hospital recovering. Talk soon xxx

    Post 2 - 25/6 - Hi girls, thanks for all the love. Just been home a couple hrs, they didn't want to release me but just cause I won't take any endone/morphine anymore and tummy incisions very painful as can't afford to vomit anymore as gotta keep IVF pills down (all that heavy stuff makes me vomit, so better to just deal with pain for a few days - just panadeine/panadol combo for me). My god sat/sun were the worst days of pain I have ever lived through. Literally arrived at 1st emergency near mums at Gold Coast and was on all fours in waiting room biting a chair the pain was so extreme, could not walk. They were reluctant to treat me, it was bizarre. After wasting an hour I said to my friend (would you believe parents were in Byron bay for 1 night, hubby at wallabies match for his bday, so best friend baby sitting me!), just take me to wazza's hosp! Was not at all confident at that hosp, so we hopped in car and drove 45mins to Brisbane (drive felt like slow motion urgghhh). Hubby met us at bris hosp. Much better treatment/emergency docs who understood wazza's protocol. But as it was 2am by now had to wait til 8/9am for scan on sunday! Morphine all night which kept making me groggy in head, but no matter dose would not knock me out. Took pain from a 12 out of 10 to maybe a 9 at best. Zero sleep, just vomiting and vomiting every drip of water that went into my body. Never hurled so much in life. Wazza was up Sunshine Coast so all done by phone. After scan showed baby ok, but pain not subsiding/no bleeding other ideas got thrown around. Wazza sent us for urgent appendicitis & ovary scans at 11am Sunday, then when specialist radiographer finally identified my torqued ovary emergency surgery was booked for 2pm. Wazza got the best young specialist surgeon to perform with him (said he hadn't done one in awhile so didn't want to stuff it up!). They tried hard to save my ovary and kept trying to twist it back, but it was so black and twisted round my tube it was gone. Very lucky it didn't turn septic and prove disastrous for me and bub as it was almost a dead organ inside me, and by then the pain stops and the poisoning of your body starts. So eventhough I guess I'm supposed to feel sad to lose my ovary, I don't really feel sad at all as our little bear is still alive and strong! Also I have another ovary, so strangely I feel ok. I think my hubby felt very sad, but I feel like we still have a chance for more kids in the future, 1 ovary can do a lot and if we need other options so be it. I'm alive, our bub is alive, I couldn't ask for more! Maybe I will feel sad one day and I am still in shock, or maybe the gravity of the situation just took away any sadness as my main concern was bub. When I came out of surgery a nurse told me she was sorry they couldn't save my ovary and could I remember my conversation with wazza, which I couldn't. All I wanted to know was bub ok and she couldn't tell me. Said you will have to discuss with doc and no one would give me eye contact, I lost it! I was saying - are you being honest with me?!! You know I've lost my ovary and yet can't tell me if my baby is alive?!! She said she was telling the truth, that wazza would have told my husband/family (parents there too) so when I see hub he will tell me, and I am under anesthetic and need to calm down!! So I had to lie there for 30mins in recovery until they wheeled bed back to my room, where all my families faces were sad/happy and I'm screaming is the baby still alive!!! Yes he was they said!!! (Not sure why i keep saying he lol). They were just sad to tell me about ovary, but it meant little when I knew my baby was safe. Then I started violently hurling from the anesthetic, felt like I broke open all my wounds, big long cut down from belly button where they had to take ovary out, and a few other laparoscopic ones down further on sides. Anyway I need to be lifted to get up at moment, as every bend/cough/fart/you name it absolutely kills!! Lol...I wonder if this will be prep for the c-section i'll be likely to have after all these complications! Doubt I would want any risk factors with natural, plus all these scars not sure about the whole push thing...but long way to go and just praying that this is our last big hurdle to jump (already jumped!). Will do personals in next couple of days, just been dying to tell you all about it as our journeys I feel are so shared and no one understands our challenges like each other. Love to all xxxxxx
    Ps - found in hosp eating crushed ice constantly helps with nausea, so any UTD or poorly feeling girls that's my hot tip for the day! 9+1 today and on scan this morn/and over weekend bub really starting to look like a bub and with little paddle arms a bit of a wave given! very exciting!!

    Post 3 - 25/6 - Ps - Hope (had asked me if bleeding maybe related to ovary issue), not the bleeding, separate issue but have not really bled since last bleed a week ago (a little spotting, so reduced to 40 clexane, and now due to surgery 40 one more week - back up to 60 in a few days). Also talked to dr m Saturday before drama unfolded and he said he has some patients on 80mg so not to be alarmed for 60 being so high. I think the biggest indication was my extreme cramping - back and front, and in retrospect was always over left side. I remember in early early preg being in so much pain doing food shopping at Coles one day that I loaded the food onto conveyor, and needing to crouch on floor while lady put it through until I had to pay. This happened all the time, doubling over in pain and having to crouch down all the time in strange places! But thought 1200 to 1600 progesterone pessaries were to blame! And after multiple IVF procedures I think your pain threshold just goes up and you tolerate much more than the average person, so if anyone has similar symptoms get it checked. In saying that wazza says this could have been months or even years in the making. Always thought I must have severe endo, but docs never found much in there. Apparently the ovary can twist intermittently and twist back, I always thought my back and side aches were cause I was lazy and not doing enough yoga!! Lol...so yeah us IVF girls are pretty tough, but watch out for extremes and don't be afraid to demand checks (an ovary & blood flow around ovary check is far more detailed than a normal ultrasound, that's why no other fs or wazza picked it up, or maybe just on the day they looked it just wasn't twisted?) - I pushed for the scan all through sat night and just knew it was something extremely serious by that stage with the pain level, unfortunately by that stage it was too late to save, but as I said very happy with our outcome.🙏

    Post 4 - 25/6 - **just re-reading above...to clarify hubby felt sad for me about lost ovary, just overwhelmed I think. But now with time we are on same page and just very grateful for bub & i to be well. Emergency surgery on your partner would be so scary (esp while preg) while in the waiting room, almost easier being the one on the table I think! Also when 30 min op turns into a 2 hr op due to complications & removal of ovary all sorts of things would have been going through his poor mind. But we are doing well now, happy to be home, and will get through anything together as a team. xx

    Post 5 - 25/6 - pps - apparently this can be way more prevalent in those who have gone through multiple stims, fertility drugs etc. It's nothing to be alarmed about as it's still very rare, and could be more so from a pre-existing tendency for someone like me anyway and the IVF just aggravated it. But wazza was very sorry he couldn't save the ovary as he wished we had caught it earlier and could have saved it. So just wanting to share the info to not feel like you are being paranoid for asking questions when you are feeling lots of pain or strange things, I actually thought it was terrible wind during day and was kind of embarrassed to call anyone until the pain skyrocketed later in the night!

    Post 5 - 29/6 - One more bizarre thing I didn't mention about that 1st hospital I went to...the young emergency doc on that evening told me as he was scared of my radical protocol that he didn't know what my tolerance of morphine would be (as wazza had me on valium to keep uterus calm after massive bleed earlier in week) and that if I stopped breathing he was the only doc in the hospital that could put a tube down my throat to save me!!! Like I could just die on the table that night! Can you imagine saying that to someone in agony, terrified of miscarrying, clearly needing pain relief that you are not that confident to be able to save their life??!! And they wouldn't even give me an ambulance to transport me to brisbane as he said I only needed pain relief which was not high priority enough, even though I was willing to pay anything to go by ambulance. It was so insane, so we hightailed it out of there by car. He gave me an anti-cramping injection in the leg to try to help, which helped a little for the 1hr drive to Brisbane. He actually suspected my ovary was twisted or something similar so I don't want to totally diss him, but said once he administered morphine he had to keep me overnight, so we just took off in the car. Talk about insane. So although a part of me wants to write a letter of complaint I couldn't care less now as it was all for best (and he was right about ovary, and it was best I got to wazza), and glad he was honest with me about his confidence levels, but holy shiz...what type of hospital leaves one doc in charge with that type of experience/confidence?? When I got to wazza's hosp they said it was the most ridiculous thing they had ever heard. If they gave too much morphine there are drugs to reverse it and you are monitored constantly, you're in a hospital for god's sake!! All's well that ends well I guess...that's all that matters now👍

    So that's my dramatic installment...today we are 9+5 - here's hoping that is our last big crazy thing! next scan wed 3rd july will be 10+2 (other cancelled as got one in hosp). And I have now well and truly joined you in the ms/nausea Kate!!! Zofran, maxalon, pumped me full of everything and couldn't stop hurling in hosp though it was def the morphine in there, now it's just plain old all day ms😣. Now home I try to only take zofran every 2nd day if possible as terrible constipation...lemonade icy poles, cheezels, vegemite toast, and big glasses of crushed ice are about all I can handle!!
    I ordered my Doppler yesterday - got a chuckles angel beats one, expensive but drop in ocean during IVF and it's TGA approved. Anything to help ease anxiety between appts is good I think!!

    TK - very excited for your countdown!!

    Jen - so happy to hear Isabelle's great prognosis!! What a good girl and turning already!!

    Lovedup - good luck with transfer!! I'm a big advocate for hcg injections too. Had 3 x 1500 units spaced out for a week from day of transfer. Never heard of the squirting though?!😜

    Hi Goldie!! Hope you and Sofia are doing well and bonding like crazy

    Anyone who made it to the end of this post you deserve a medal!!! Haha 😘😘
    Last edited by lissyloulou; 29-06-2013 at 14:54.

  2. #872
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    These NT and downs scans you are talking of, I don't want to do anything of risk to baby and to be honest it wouldn't effect our decision to keep baby so we always thought we wouldn't bother. Do people do it more for just peace of mind? Like I think the downs one has no risks...but the one where they need to put a needle in you (the NT or nuchal one I think? Sorry I am a bit clueless about it all) which carries a slight risk, is there really any point? Just interested in others thoughts, no offense intended for anyone deciding to do them or not.

  3. #873
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    Lissy all I can say is WOW. You are one incredibly brave women & I am humbled by what you have gotten through. You have certainly dealt with so much more than anyone deserves. I really do hope & pray that your journey is a lot smoother from now on.

    It sucks that you have ms now too. I have to take Zofron twice a day otherwise I'm sick. Took maxalon for a day & ended up vomiting. Still only handling my cheeseburgers & twisties really. I had ice in hospital but at home it just tastes gross! My Dr told me to get dupholac for the constipation. It's different to coloxyl? Movical etc as its still effective while you are dehydrated & on bed rest. I've only been twice in 2 weeks & need to take the dupholac to go. Causes a few tummy pains but not has bad as others laxatives or being severely constipated.

    With the downs assessment there are various tests you go through depending on what the first rest comes back with. To start off with the mumma has a blood test & you get a ultrasound if baby's neck. There is no risk to baby with this procedure. If your risk comes back at 1/300 or under then that is when you decide on further testing & would include the needle into baby. This is the procedure that has risk if miscarriage. My husband said he didn't want to do this one & would love our baby no matter what (I really wasnt sure how he would feel with worst case scenario) so we're only doing the first one for piece of mind plus the scan is really high tech so you see a lot more & you can get a DVD.

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  5. #874
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    Thanks Kate...it's been hell but we are still here! 😘
    Yes I'm taking the movicol 2 x day as well inbetween meds (think you need to take 2 hrs away from meds so it doesn't grab onto them - but you aren't on oral meds anyway hey?). Not heard of the dupholac, hopefully won't need to as I went this morn! Woohoo!
    Are you on 4mg or 8mg zofran? I'm trying to stick to the 4 for now.
    Thanks for the downs assessment info...yeah we are same, love our baby no matter what so wouldn't go to the risky procedure I reckon. Hopefully it's a choice a lot of us don't have to be faced with.
    Oh and yeah ice tastes like crap at home I agree! But thankfully at my mums she has a fridge with built in ice crusher. I'm so paranoid it tastes like there's a bloody chemical in it, but it hasn't killed me yet lol...thinking when I get home to get ice trays and just put ice in a tea towel and hammer them into crushed ice? Who knows, I just think crushed is easier to eat than the big bits
    Last edited by lissyloulou; 29-06-2013 at 15:42.

  6. #875
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    I've got the generic zofron it's cheaper but does same thing. The tablets are 4mg & I have 2 a day. Dupholac is just from chemist. I'd never heard of it either! Make sure u don't take anything with senna in it. I can't stomach the Movical anymore!! No not on oral meds apart from my Elevit - I have to crush that up to take it!!!

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    What is generic zofran called and cost? Mine costs about $55 for 10 x 4mg tablets!!

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    I mix the movicol with really cold water, you need to stir and stir for about 5 mins to dissolve but goes down way easier super cold...not sure if that will help

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    The generic brand starts with O. My chemist didn't haven't the name brand one. I checked with Dr & it's fine. It costs $35 for the 10 pack. It's the smell if the Movical that gets me - plus it didn't actually work!!

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    Oh my god Lissy! You poor thing, you've been through so much. I too am sorry about your ovary but glad that you still have one and that you and bub are okay. Please please please take good care of yourself. Let us know if there is ANYTHING we can do.

    Xoxo

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  12. #880
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    Lissy generic brand is called Onsetron ODT 4.

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