* Author Topic: TTC with PGD/PGS - Part 4  (Read 24167 times)

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Offline -Susan-

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TTC with PGD/PGS - Part 4
« Reply #100 on: 15/05/18, 00:38 »
Oh a few at glasgow, interesting!! I don't recall previous posters going there.

SMA1-mum, The tube going through your cervix can be a little bit uncomfirtable, as well as when they use the speculum, but it's not really much worse compared to a smear. I do feel a  bit self conscious because the room has had several members of staff each time- doctor, embryologist, nurses - and you're rather on display lol, but it's really not bad. My biggest worry beforehand is the quality of the embryos because that's what we've struggled with in the past. It's nowhere near as daunting or painful  as egg collection. :) the only exception can be if you have bad endo, I think some ladies with that find transfer more painful.

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    Offline littlebear6

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    TTC with PGD/PGS - Part 4
    « Reply #101 on: 15/05/18, 06:56 »
    Ah jodes nice to find a fellow Marf in here! I had a very straightforward pregnancy but was closely monitored by the cardiac team throughout - I think I saw the cardiologist every couple of weeks and had several echos and an MRI during pregnancy. They like you to have a very managed birth though so they induced me on my due date as didnít want to go beyond that with the extra strain it places on the heart, and they recommend an epidural and you have to be hooked up to heart monitors throughout labour and for 24 hours after. Although I think this varies from hospital to hospital as I know my sister (also Marf) was allowed to go 10 days past her due date at another hospital. I was at the Chelsea & Westminster.

    And thanks for giving me hope on the follicles front - your numbers are great! The doctor doing the scan didnít seem unduly concerned so hopefully thereíll be more at next scan.

    Offline SummerSun1

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    TTC with PGD/PGS - Part 4
    « Reply #102 on: 15/05/18, 07:19 »
    Wow, this is such a busy thread now, it's great!

    Belle - good to "meet" someone else at GRI.  They seem pretty good so far - they are clearly really busy but everyone who works there is lovely.  It's a hassle for me to get to though, and the journey and car park really stresses me out which is ridiculous compared to everything else!  I think my timescales were: geneticist appointment (different hospital) April 2017, first appointment at GRI July 2017 (which lasted all of ten minutes) - they said 8-12 months from then and we went back March 2018, so exactly 8 months.  I'd just started my period the day of the appointment so they couldn't fit me in then but I got in for the next cycle.  Starting sims next week - eek! Although - Megan - good to hear they are doable!

    It's been quite straightforward actually and apart from the blood tests and a mid-cycle catheter test, I haven't had anything else done.  Ive never even been scanned there so worried I'll go for my first scan and they'll discover some weird thing wrong with me that means I can't do it.

    Waiting is definitely part of the process - I have just tried to keep myself busy, go on holidays, do lots of exercise etc.  It just hit me yesterday though that it's 2 and a half years since my first MC which just seems like such a long time with nothing to show for it.

    I've just started acupuncture again - not sure if it does anything but it makes me feel like I'm taking some action!

    Hope everyone is doing well this week x

    Offline littlebear6

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    TTC with PGD/PGS - Part 4
    « Reply #103 on: 15/05/18, 08:47 »
    Hi me again. Quick question - are you all having PGS along with your PGD?

    Offline lexabeth

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    TTC with PGD/PGS - Part 4
    « Reply #104 on: 15/05/18, 14:50 »
    Hi All,

    With so many new posters on this board, I thought I'd chime in as well.  DH and I are in our mid to late 30's.  We have two children- the younger has a very rare form of muscular dystrophy which shares more similarities with mitochondrial disease. Prognosis unknown as he's currently one of three known cases in the world...

    We've always wanted a third child and have been waiting 8 years to complete our family. After 7 years of testing, we received DS's official genetic diagnosis in Summer 2017. It's a single gene disorder, so 25% chance of passing it on. Immediately set up appointment with GC but had to wait 8 months for the appointment. DH took annual leave for said appointment only to be told that we could have simply asked for a referral to Guy's over the phone (and saved a 10 month delay). We've had our first appointment at Guy's for PGD last month but DH not impressed with "30% chance of walking out with a baby" speech especially as we're self-funded.

    Littlebear6- do you know which insurance company is covering your care? I'm certainly interested in investigating that route if possible!

    It's so lovely of you all to share your stories and experiences. I'm still struggling to decide which is the right option for us- I'm not sure I could terminate as I feel like it would be a huge betrayal of DS and all he means to me and yet as DH says, no parent would willingly choose to bring an unhealthy child into this world if an alternative existed. Feels like a proverbial fork in the road with no clear route to follow.

    PGD seems a viable option, though rather daunting given the less than ideal success rates and financial implications. And as we're not near London, I fear it might be difficult to go through PGD without our children catching on- would hate for our journey to negatively impact them if things didn't pan out as we'd hoped.

    I have so much admiration for you all- it's a difficult journey regardless of your personal circumstances.

    -Lexabeth

    Offline Hopeful_10

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    TTC with PGD/PGS - Part 4
    « Reply #105 on: 15/05/18, 22:00 »
    Littlebear6 Ė It only takes one good one but will keep my fingers crossed for you that youíll grown more follicles. We will be having PGD with PGS too. Is that what youíre doing too?
    Belle86 Ė I have heard a few people suggesting acupuncture. I hope you find it helpful for the anxiety. Itís good that you have a friend to talk to. Whilst your husband makes a good point, thatís such a man way of thinking about things and is much easier said than done. My hubby is definitely a lot more laidback than me. Iíve found the waiting really hard too. Weíre waiting for our test to be made (hopefully by the end of the month). Told weíll then receive our protocol, need injection training and receive the drugs (so depends how long that will take) then when Iím at the right part of my cycle we should be able to start. Hubby and I will need a few blood tests before we start too.
    SMAMum1 Ė Completely understand your concerns and questions. Itís good that you have friends who have done IVF. Wishing you well for your transfer.
    SummerSun1 Ė I think that having treatment quite far from home is an added stress. We have to travel quite far too. Iím not sure how that will be for egg collection and embryo transfer. I can completely relate to doing things (like acupuncture) to make you feel like youíre doing something active to help. Hoping your stimms go ok Ė that really will be the action stage! I definitely think I should aim to be more like you, keeping busy to pass the waiting time. I could definitely do with doing a lot more exercise if nothing else!
    Welcome Lexabeth Ė Itís great to have another member to our recently growing group. Thanks for sharing your story too. Your sonís diagnosis is just so rare, no wonder it took so long to identify. How annoying after such a wait to be told you could have just asked for a referral Ė that would have infuriated me! Itís good that youíve had your first appointment but it sounds like you and your hubby have a lot to think about now. Take time to weigh up and think through your options and choose what feels like the right path for you. It doesnít matter what others think or what is right for them, I think all of this is very personal and unique to you and your circumstances.
    Are people on the long or short protocol? We will be on the long protocol.

    Offline littlebear6

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    TTC with PGD/PGS - Part 4
    « Reply #106 on: 17/05/18, 07:43 »
    Follicles looking more promising at yesterdayís scan. Have 7 ďbigĒ ones and a handful of smaller ones which will hopefully get themselves up to size. Looking likely I will trigger tonight for collection on Saturday.

    Lexabeth - i asked my husband and itís not exactly an insurance thing, itís just part of his benefits package that they will cover up to a certain amount for fertility treatment. Itís provided by a service called Carrot (yep really - google it!). Itís treated as a benefit in kind so he pays income tax on it as if it were just additional salary so itís not entirely ďfreeĒ but significantly better than if we had to pay the full whack. I canít imagine many employers offer this and he only got this job last year so we are pretty lucky.

    Hopeful - Iím on the short ďflareĒ protocol. Started stims on cycle day 3 and looks like will be having collection on CD14.

    Offline SummerSun1

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    TTC with PGD/PGS - Part 4
    « Reply #107 on: 17/05/18, 18:34 »
    That sounds promising with the follicles Littlebear!  Hope the trigger shot was/is OK, will be thinking about you on Saturday.

    Welcome Lexabeth, you're right that this is a difficult journey.  Everyone has a different story and different circumstances but none of this is easy.  I can't believe you waited so long only to be told you could have asked for a referral by phone - that would have enraged me!  I have found that I've had to fight for a lot of my treatment so far and to argue for things.  The clinic phoned me last month to say the doctor wanted to speak to me before I started but wouldn't be available until end of June so everything was off till then.  I threw a right strop (they'd known about this particular issue of mine for over a year and had never mentioned it) and they somehow managed to fit me in the next day!  At which point I had a 5 minute chat with he doctor and everything was fine - so very glad I didn't wait another 2 months for that!

    I'm on long protocol too Hopeful.  I had a prostap injection last week, and have spent all week waiting for the dreaded menopause symptoms to arrive but so far I've been ok apart from some bad headaches.  My period arrived today which really cheered me up, I was worried it wouldn't come before my scan next week which would have delayed starting sims.

    Offline lexabeth

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    TTC with PGD/PGS - Part 4
    « Reply #108 on: 17/05/18, 22:05 »
    Thanks for the lovely welcome, Hopeful and SummerSun. If we move forward with it, we'd be on the short protocol as ours is a novel condition. Though by the sound of it, the timing for egg transfer would be about the same regardless of long or short protocol. I feel like everything is moving so slowly, but perhaps you're right SummerSun- it sounds as though a little assertiveness is necessary to avoid longer delays.

    Littlebear- thanks for the info on Carrot. I hadn't heard of it before. It's great that your husband's company offers such a fantastic benefit package and that you've been able to take advantage of it even if he hasn't been with the company for very long. I'm fairly sure the NHS wouldn't be interested in such a scheme for their employees. Good luck with collection over the weekend. Hope you have a great result!

    Offline MeganBanting

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    TTC with PGD/PGS - Part 4
    « Reply #109 on: 18/05/18, 19:18 »
    Well, we had our first scan today. The numbers are looking good - we've got 16 follicles, all looking like they'll be big enough to be 'useful', but the biggest ones are only around 1.4cm at the moment, so 3 more stays of stomping and back on Monday for another scan. Hopefully we'll nearly be there by then, the injections are getting a bit tiresome!

    LittleBear6 - good luck with your collection tomorrow! I'll b sending positive vibes your way  :)
    And yes, we're having both PGD and PGS done at the same time.

    Hopeful - we're on a short protocol, although it feels anything but short right now!!!

    Hope everyone else is well and looking forward to a relaxing weekend in (hopefully) the sunshine!

    X