* Author Topic: TTC with PGD/PGS - Part 4  (Read 24175 times)

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Offline SummerSun1

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TTC with PGD/PGS - Part 4
« Reply #90 on: 13/05/18, 09:07 »
Thanks for the welcome Susan!  Yep, 80% :(  Theoretically, it should be 50% but it doesn't work like that with translocations unfortunately.  I spent so many hours researching chromosomes and really hoped my understanding was wrong but we got the PGD testing report a few weeks ago and that confirmed it.  It all depends on the chromosomes affected, the size of the translocation and how they divide.  I try to remind myself that the numbers are meaningless really, it will  either be ok or it won't, but I really struggle sometimes.

Can I ask if you did your treatment in Edinburgh?  I'm in Scotland too but at the GRI - already looking ahead to this cycle not working so wondered how you found things in Edinburgh if you went there?

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    Offline Belle86

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    TTC with PGD/PGS - Part 4
    « Reply #91 on: 13/05/18, 18:08 »
    Hi everyone,

    Hoping to join in with everyone as spotted a lot of newbies.

    I donít have much to report about so far but I think you all are amazingly strong for getting through all of this.

    Iíve always known PGD was going to be my fertility route so Iíve had no previous pregnancies. My dad was a carrier for the genetic version of MND and passed away 7 years ago. I have a 50% chance of passing on the abnormal chromosome but I have never been tested myself as it has no known cure.
    I was referred for a genetic app Nov 16 and ref for PGD was May 17, they had said 6-8 months from Sept I could expect to hear from them.

    My question is how do you all cope with the waiting? My anxiety is increasing daily not knowing what is going to happen and when. 18 months in and Iím no further forward.

    Summersun I am waiting for GRI at the moment, just wondered how long you have been waiting and how you are getting on with them?

    Thanks for listening and I hope everyone has a good week xx

    Offline MeganBanting

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    TTC with PGD/PGS - Part 4
    « Reply #92 on: 13/05/18, 21:28 »
    Hello, lots of us newbies - it's nice to not feel like the new girl and have a few of us all together!

    Day 4 of stims today. Starting to feel a bit uncomfortable, and poor DH doesn't seem to know what's hit him with my emotions today - but it all still feels 'doable', which is good. Scan on 18th to check follicle growth, I'm just hoping it'll all be worth it!

    Belle86 - I know exactly how hard it is to wait and wait with no end in sight. Our first appointment was way back in Jan 2017, and it had taken about 3 months to get to that point in the first place. It is so hard to stay calm and not worry. I threw myself into everyday life completely for those months of waiting and found that helped. Which clinic have you been referred to? And have you been assigned a genetic counsellor at all? I found my counsellor a great help as I could email all my worries to her. I didn't necessarily get a response straight away, and it was normally a 'still waiting' email, but it really helped. If you haven't got that far yet, then I guess you can use somewhere like this to vent your frustrations! So many of us have had to wait, or are still waiting, that we'll understand how you're feeling.
    Also, try to remember that while it may feel like nothing is happening, they'll be doing all sorts behind the scenes. If it's anything like me, it was lots of waiting around, then 6 weeks from appointment with the Dr's to starting stims! Keep calm - it'll happen when it's meant to be.

    Hope everyone has a lovely week - sending positive thoughts everyone's way!

    X

    Offline Hopeful_10

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    TTC with PGD/PGS - Part 4
    « Reply #93 on: 13/05/18, 21:54 »
    Welcome everyone. It's lovely to see lots of new people joining! It had got really quiet on here before.

    Summersun1 - We've also told very few people about the PGD. Even with the few people who know, I'm not sure how much we'll share as we start treatment as I'm not sure how well I can cope with other people's disappointment if things aren't going to plan. I think our own emotions are enough to cope with. Good to hear that you are finally getting round to starting treatment. The waiting is just so difficult when you feel ready to start. Hopefully they can help build your lining with the medication.

    Susan - Hope you've had a nice weekend

    littlebear6 - It's amazing that your husbands insurance will cover your treatment! Fingers crossed that one treatment cycle is all you need.

    Belle86 - Nice to have another newbie right at the beginning of the PGD journey on board. I'm right at the start of my journey too, currently waiting for our test to be developed. I'm sorry to hear about your Dad and completely understand your at risk status but not wanting to test yourself in the position you are in. It's amazing that they can do exclusion testing to make sure any unaffected gene would not be passed on to your offspring. We've also always known that we would go for PGD and have never tried to get pregnant before. I want to know how to cope with the waiting too. I don't think our wait has been as long as others but it has still been very difficult. Some people have benefited from meditation and mindfulness and have found some of the apps helpful. I also think that talking about things helps with anxiety. Have you got people around you that you can talk to? I've also found contact with other people who are having PGD helpful, including through this message board. It's great to have an influx of new people joining. Could you also contact your clinic for an idea of the likely wait until your first appointment (and just to check you are still on their waiting list!)?

    MeganBanting - Welldone on managing your stims. Your scan is coming soon. Hoping your discomfort means there are lots of follicles growing. Hopefully your hubby is hanging in there too! 

    Hi to everyone else out there.
     

    Offline littlebear6

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    TTC with PGD/PGS - Part 4
    « Reply #94 on: 14/05/18, 08:35 »
    So Iím now on day 7 of stims and had a scan this morning which was a little disappointing as it seems I only have 5 follicles that are growing nicely. Hoping thereís still time for the smaller ones to catch up! Going to up my protein intake. Anything else I can do?

    Offline MeganBanting

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    TTC with PGD/PGS - Part 4
    « Reply #95 on: 14/05/18, 10:32 »
     Hi Littlebear6,
    That must be so disappointing - did they tell you how many follicles you have during your early scans, before stims?
    I've been told to eat healthily, drink 2 litres of water each day, get a little, light exercise every day and get plenty of sleep. Oh, and avoid stress at all costs!
    I'll keep everything crossed for you for a better result at your next scan
    X

    Offline jodes89

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    TTC with PGD/PGS - Part 4
    « Reply #96 on: 14/05/18, 15:10 »
    little bear - same condition im dealing with! i decided to go straight for PGD route as i wasn't sure i could emotionally handle terminations, pleased to hear you have one healthy little one and i hope you have success with PGD. i started off with a few follicles during my stimulation and then suddenly a load of little ones developed. as they kept saying to me its not numbers you need but quality - i hope things pick up. Can i also be cheeky and ask if you had any problems during your previous pregnancies with the marfans?

    susan - they didnt tel me the gradings just that they were 4 healthy embryos - i decided thats good enough info for me!

    Offline -Susan-

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    TTC with PGD/PGS - Part 4
    « Reply #97 on: 14/05/18, 19:15 »
    Summer sun, I'm pretty happy with Edinburgh. I had my son with them.  They don't do many PGDs so not the most experienced though. I like the lead consultant dr thong, but Laura, another member here, isn't such a fan - I think he might be a bit like marmite lol. I think it's single genes conditions Edinburgh work with though, not convinced they do translocations.

    Little bear, thank you. Double cost of Edinburgh then!! They do have a very good reputation and like you I don't not need all the Hand holding stuff or for a sympathetic ear, I just want a hospital that I can trust really knows their stuff and does their job well! ARGC I believe will let you come choose between transferring one or two I believe which most don't. Not much you can do I'm afraid for more follicles, other than upping stims (not always the best thing to do), hopefully itll improve though x

    Offline Belle86

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    TTC with PGD/PGS - Part 4
    « Reply #98 on: 14/05/18, 20:36 »
     Meganbanting- so happy you have started and getting on ok with stims! Hopefully you will have good news on the 18th and it will all be worth it!
    I am attending Glasgow Royal. I was assigned a genetic councillor at the intital appointment on ref from the GP and the last I heard she said it would be May that I would hear from the conception service. The genetics dept is at a different hospital so Iím not sure they have much overlap. I called the conception service two weeks ago and the reply was just to keep waiting and they cannot give a time frame.

    Hopeful10 - I have tried calling over the past few months but they are still waiting on the making up of my exclusion test.
     I have made an appointment for accupuncture this week to see if that makes any difference with my anxiety. I have tried it once before but didnít like the clinic so thought I would try again somewhere different. I have confided in one friend who is currently struggling to conceive naturally so we both have a moan to each other which is nice. My DH just tells me to be patient and wait my turn which is true but hard to hear. This message board really does help and its so nice to chat to everyone in the same process. Do you have any idea when you will get started?

    Littlebear6 - Fingers crossed for more follicles at the next scan.


    Offline SMA1-Mum

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    TTC with PGD/PGS - Part 4
    « Reply #99 on: 14/05/18, 20:42 »

    Sma1mum, I am so sorry your daughter passed. I just can't imagine how painful that must be :( life is incredibly cruel. I so hope you get your rainbow baby. Do you have any specific questions about transfer? Been through 4 myself now!! It's absolutely fine in my experience - you go to theatre, legs in stirrups (nothing about this process is dignified!!) they use that weird thing that stretches you so they can access the cervix. They then insert a thin tube through your cervix and scoosh the embryo through once they've set it up so it goes to the right place. You're scanned as they do it so you can see the embryo go in - my clinic give a picture as you can see a little white bit it that's the embryo in the fluid they transfer it with. Doesn't take long, shouldn't be sore, and they will tell you a little about the embryo if you want eg quality, stage of growth.


    Thanks for the info - I am absolutely freaking out about it! I think I have had too much time to worry the last two weeks. I have somehow managed to get flu and sinusitis and I live in dread they will cancel my transfer. We have waited a little over 18 months to get to this point (Genetic appointment in December 2016; 1st IVF meeting in Guy's in March 2017, started making the test and applying for funding from May, test made in August 2017, fertility checks in October 2017, Start 1st cycle January 2018, egg collection in Feb 2018, results back end of Feb 2018, start FET end of April 2018) and in one way its taken ages and in another it seems so fast! I think I am more worried about what we will do if it works at the moment - it seems such a strange concept to have a child without a ton of medical equipment to keep them alive!


    Is transfer painful or uncomfortable and how does it compare to TV scan or egg collection?

    So glad to find other ladies going through this - we have friends who are doing or have done IVF but neither has done PGD.

    All the best to everyone else! It's a long road, especially through Guy's but they stick to their flow chart timings quite well!