* Author Topic: PGD Funding - Your Experiences  (Read 22837 times)

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Offline little-laura

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    Offline Janeliot

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    Re: PGD Funding - Your Experiences
    « Reply #21 on: 9/06/13, 18:55 »
    Hello,

    When I was conceived one of my genes mutated and I developed a childhood cancer which I now have a 50% chance of passing on.  Those of my offspring who carry the gene have 90% chance of developing the cancer.  They will also be more prone to developing other cancers, especially in their teens.  I was told by my genetic councilor various possibilities.  I do realise that a lot of people seeking PGD treatment have much higher risks of passing on hereditary conditions, I am more scared of second cancers than the initial one and also of the quality of life.  I have found life wonderful but because of the consequences of my treatment have found it also very hard.

    Anyway, I hadn't yet met my husband to be at this time but when I did he was a lot younger than I was.  I did discuss all this quite early on in our relationship, once we had sort of confirmed our commitment to each other.  I didn't really push it until i was about 32 (4 years into our relationship) as had I started to panic because I knew that it was quite a long process.  Although neither of us was quite ready yet we decided it was a good time to get the ball rolling.  I am so glad I didn't wait any longer.  We wrote to the genetic councilor and she put us in touch with a clinic that specialised in PGD and had dealt with my genetic condition.  We met the Senior nurse, who was wonderful.  She explained every possibility to us so that we could be quite sure that this was what we wanted.  And then I contacted my PCT to get the write information for funding.  This was such a difficult task.  It wasn't straight forward at all even though it was the clinic who wrote the letter.  It wasn't clear at all who dealt with these requests and even the PCT didn't seem sure.  We got there in the end but it did take some time to get an answer.  Maybe about 3 months from when the letter was sent. 

    We got 2 cycles so I was very happy as i was worried we would only get one.  Although I would have also been grateful for one, at the time (my first cycle has failed).  We live in London.  I don't know if it makes any difference where you live in the country.  I do also wonder if you can ask for more cycles.  I know that the limit is 3 across the country but it's only up to the local PCT.   I also wonder how easy it is to go abroad for cycles in PGD.  General IVF must be easier.

    Oh anyway, this is getting a bit long.  I better get on with it. 

    That was over a year and a half ago now.  The lab seemed to have big problems locating the strand of DNA.  It turned out that I had a deletion which is really hard to do PGD with so they needed to find another way.  This particular condition means that every carrier has individual sequances of DNA, so you can't pin point it in the same place for each patient.  Makes things a bit complicated for the lab techs.  During the time they were working it out I was calling every 2 months and by January this year was almost convinced that they wouldn't find a way to do it.  Then in late February we were called for a meeting with the Senior nurse and senior lab tech person and shown how they could do it.  It seemed fine to us but they still wanted us to go away and think about it.  I didn't really need to think about it, neither of us did. 

    During this year we had many bloods taken.  I couldn't believe how often I was asked to come in to do a blood test.  Finally they asked for my parents blood samples, my brother's and my husbands parents.  My husbands parents delayed us, still feeling quite hurt by their delay.  Anyway, husbands mother gave a saliva swab instead.  I wonder why we can't all just give saliva swabs.

    Once the work ups were done I started down regulating and then the stims.  I didn't respond very well at first and I was really worried that I wouldn't have many good follicles.  I was so relieved that they started growing well at the very last moment.

    Basically once they collected my eggs on 18th May this year, 11 initially of which 8 fertilised successfully.  They tested the polar bodies of the 8 embryos twice before doing the main biopsy.  If the polar body contained the deletion they would hope that they wouldn't find the deletion in the embryo.  However, the deletion couldn't be identified as it just wouldn't show up, they would only be able to identify the presence of it by recognising strands of DNA that were present.  I still find it so hard to understand but DNA is fascinating.  The lab were quite relieved that it worked.  They found 5 embryos which carried the cancer gene and 3 which didn't.  One was strong but I had 2 transferred. 

    It didn't work the first time but I can't wait to try it again.  This time though I will be eating so so so healthily (I was anyway), I will be meditating, doing breathing exercises, considering acupuncture, taking things easy but making sure I have blood pumping round my body healthily, trying really hard not to get stressed (I did try but maybe not hard enough as my hormones went a bit crazy on two occasions) and I will hopefully not have hay fever.  I get it really bad and I can't help thinking that my sneezing must have dislodged an embryo.

    Sorry I went into this quite thoroughly but I find it kind of cathartic and helpful to write about it.  I was very upset when it didn't work so I find this to set me straight and get me ready for going on.

    Offline cfb107

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    Re: PGD Funding - Your Experiences
    « Reply #22 on: 9/06/13, 19:12 »
    Janeliot - You should now be eligible for 3 funded rounds, PGD funding rules changed a couple of months to give all PCTs 3 cycles xxx

    Offline Janeliot

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    Re: PGD Funding - Your Experiences
    « Reply #23 on: 9/06/13, 19:14 »
    Just wanted to add in regards of funding.  My cousin in Slovenia has, apparently, been agreed for 6 cycles of IVD PGD (not the same condition as me, they have suffered many miscarriages).  So, I don't know whether it is cheaper in other countries or what.  And considering that Slovenia is possibly another country after Greece and Spain to go into bankruptcy I'm not sure how they manage this.  Just wondering why this is.

    Offline Janeliot

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    Re: PGD Funding - Your Experiences
    « Reply #24 on: 9/06/13, 19:16 »
    Hey, CFB.  I wonder if those of us who were agreed for less than 3 can put our case forward.  I'm going to make inquiries.  Doubly hopeful.  Thanks.

    Offline cfb107

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    Re: PGD Funding - Your Experiences
    « Reply #25 on: 9/06/13, 19:18 »
    You should qualify for the extra funding, I don't think it's the case that if you were initially given less you are not eligible under the new funding (if that makes sense). Good luck!!!

    Offline Janeliot

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    Re: PGD Funding - Your Experiences
    « Reply #26 on: 11/06/13, 13:42 »
    Have been confirmed for two more cycles funded.  Very happy.  Thanks for making this clear to me.  It's quite a relief to know our next cycle need not be the last if it isn't successul. 

    Offline mb2512cat

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    Re: PGD Funding - Your Experiences
    « Reply #27 on: 4/07/13, 15:29 »
    We've been told that we've been approved for two extra goes. We've had one funded, and paid for the second one. I know this is going to sound ungrateful, and perhaps I won't feel like this for ever, but I've had enough of the whole baby-making thing. I'm wiped out. Anyone feel similar? I guess I will eventually sign ourselves up again, but I'm doing it reluctantly.

    Offline Chilli Chick

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    PGD Funding - Your Experiences
    « Reply #28 on: 28/01/14, 11:56 »
    I'm currently going through my first PGD funded cycle and got told that was all I got. Got told about 1 1/2 - 2 years ago that we'd only get one round.
    So from what I've read on here should I get an extra 2 cycles funded? How do I go about getting these extra cycles? This is all new to me so is all confusing.

    Offline mb2512cat

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    PGD Funding - Your Experiences
    « Reply #29 on: 28/01/14, 12:30 »
    Which clinic are you with? They should be able to tell you what the process is. Definitely ask and be pushy!