# To go ahead or to not go ahead.....??



## greatgazza (May 27, 2010)

Hi girls

I'm not really sure where to post this and if i don't get much joy i might also post it on the pre-tx board but i feel more at home here.

i posted recently that i found out last week that i have 'balanced translocated chromosomes'.  This has no ill effects for me on my mental or physical health (and i may never have known) and it only comes into play when in comes to wanting to have children.  Great. 

I told the  consultant i was planning on having minimal stimm OEIVF in Cz in a couple of weeks and he very coolly said to go ahead as long as the sperm donor didn't have the same thing.  They don't screen for this at reprofit with their sperms donors.  However, since reading up on this after being hurried out of my nhs appt i have discovered that even if the sperm donor doesn't have it i still have a 1 in 3 chance of either a miscarriage or abnormalities such as down's, patau (i'm not sure yet which chromosomes have translocated so not sure which syndrome i would be more in danger of reproducing).

This is a huge shock and tbh i'm terrified, really pretty scared and very sad about what to do.   

I went to my GP today to see about seeing a genetics counsellor but was told it's all private and there is nothing for this on the nhs, so I will have to look into that and decide if that's viable/worthwhile.

My options are:

OEIVF (mild or full on)
OEIVF with PGD or CGH although I don't know if PGD would pick it up (have to be full on to have enough embryos for PGD)
DEIVF
DFET

I hadn't quite got my head round donor eggs yet as i was still hoping to have a couple of goes at IVF with my own eggs.

I'm still swaying towards continuing with my mild OEIVF in a couple of weeks, partly because i had been gearing up to it and partly because i don't know if i can bear not to try and squeeze in another tx before xmas as December won't really be a possibility due to holiday closures etc.  I know this can only be my decision ultimately but do you think this is reckless/rash because of the risks involved?  My consultant didn't really go into any detail or give any decent explanations so i'm not entirely sure what i'm dealing with and have been researching stuff myself.  He was so blase about it i came away from the appt thinking it wasn't that big a deal.....he didn't mention any abnormalities i could have with any babies, at all.  I'm so upset and angry he could deliver such devastating news without much thought at all. 

Part of me thinks and it has also been said to me since finding this out that there are ALWAYS risks, there are no guarantees and no one knows what might happen.  Even having tx with my own eggs at my age is a risk.  Thousands of couples wouldn't know there were any issues and wouldn't be getting tested and screened for everything they'd just be 'trying for a baby' in blissful ignorance.  But am I being ignorant (and setting myself up for heartache) continuing when I know the risks?  Obviously if i were to get pg (and sustain it) i would have to consider having CVS or amnio and decide how i would deal with a less than ideal result.  But what if i were to get pregnant and there were no issues?  We just never know do we?

If i had been doing full on IVF i might have asked if i could switch to do PGD with this cycle (as more eggs are needed) but there isn't time now to organise that.  I read on here earlier someone else was doing mild ivf or DFET (at Reprofit) depending on how she responded to the drugs.  But she must have arranged that sometime in advance i think, not sure.  I asked Stepan to put me on the waiting list for DFET but he wants me to hold my horses and have my next tx as I can't be on all the waiting lists so that is still a few months off.

Part of me thinks if i could switch to DFET now i possibly would, without as much trouble as i thought so i don't know if i'm thiking of going ahead with mini OEIVF because it's the only thing i can fit in and need to be doing something/having some form of treatment.

Basically I'm really thrown, really panicking and really low  .  I thought having tx was stressful enough but now this.

It doesn't seem there are many on here that know about this or have this so i'm really scrabbling around for any support on this one.

As I said, I know i have to make the decision but I really don't know what to do and would just welcome any thoughts or support that might help me come to that point.  I think it's just often useful to get this stuff 'out there' and often you guys will mention something that hadn't actually occurred to me which can also help.

Sorry it's a long one but it's quite complicated.

GGx


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## Bethany915 (Aug 1, 2010)

Hi GG

Poor you   .  Such a lot to take on board, along with everything else.  If you are not ready for DE yet, how would you feel about amnio / CVS if you did get pregnant?  And would those techniques be able to pick up any abnormality (I presume they would)?  If you are happy to have either of those procedures (and you know what you would do in the event of the "wrong" result), then it would seem reasonable to go ahead with the min stim OEIVF.

I know a couple who are both carriers of a disease (I forget the name) which would mean their baby, if he/she had it, would not live past a toddler.  They didn't even go down the IVF route, they just tried naturally and each time she got pregnant, they had the CVS / amnio in the knowledge that there was (in their case) a 1 in 4 chance of the embryo having the disease.  Maybe not the route everyone would take (and of course it carries the risk of being very traumatic), but it is a perfectly acceptable route.

Good luck, whatever you decide.

B xx


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## greatgazza (May 27, 2010)

Thanks bethany

It's just so nice to get some outside thoughts, as my head is a bit mashed.

Did your couple friend have any good outcomes/happy endings?

GG x


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## caramac (Mar 21, 2010)

GG - I don't have any knowledge of your chromosome issue thingy (sorry!) but I can tell you what I'd do if I were in your shoes. And that would be to carry on with treatment. As you have said yourself there is always a risk when getting pregnant - risk of early miscarriage or risk of anomalies being picked up either at 12 week or 20 week check-ups. And those risks increase as you get older. It wouldn't have put me off but I would (and did) have all the checks offered to me and had made my mind up about what I would do if certain situations arose.

As you also said - if you were in a standard relationship right now and looking to try for a baby you wouldn't be having these tests or stressing over these issues in so much the same way. I get the feeling that you are over analysing too much - trying to pre-empt all possible issues? That's just not ever going to happen...sometimes you've just got to go with it and see what happens.

And personally I'd want to give one to three goes (financing depending) with my own eggs first before moving to donor eggs/embryos just so I knew I'd tried that.

Someone said to me the other day people don't generally look back on their life and regret the things they did...they only regret the things they DIDN'T do. So I say just get on and do it!


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## suitcase of dreams (Oct 7, 2007)

GG

Firstly    - this is a lot to take on board and deal with

I forget how old you are but assuming you are 40ish, then the risks of no implanation and/or chromosomal abnormalities are pretty high anyway - I think I read somewhere 80% of your eggs are 'dud' at that age. So in a sense you are not taking much more of a risk than if you did not have the translocation. I think if you have thought that through and are aware of the consequences then by all means go ahead with your mild IVF so you can get a cycle in before Christmas. 

Having said that, it's impossible to mentally 'prepare' for the distress of a miscarriage/missed miscarriage and/or finding out at a scan that there is a problem which leads to you needing a termination. I don't want to be doom and gloom but do think about what this might do to you emotionally and weigh up whether you want to take that risk right now or whether you want to give yourself some time to find out more about this translocation and what your options are first
I say this only because I have had a missed miscarriage - told at 7 wk scan pregnancy not viable, had to wait a week for confirmation, and then have an ERPC. Had to be signed off work for several weeks as could not stop crying and all in all was a terrible terrible time. I wouldn't wish it on anyone and whilst it could happen to anyone, I guess your risk factor is higher because of the translocation

One thing I would do is either insist on seeing the consultant again for a proper discussion about this, or if he won't do that, then make a complaint about how this has been handled so that you can get a follow up elsewhere. It's simply not acceptable to give you this news and then leave you hanging with no idea what your chances are of conceiving a healthy baby and what the best course of action is
Could you also find out perhaps where the experts are (there must be some) in this area and whether you can pay for a single consultation with someone just to get a better idea of where you stand 
I know all this feels like more time is passing and more money being spent, but at least then you would know what you were dealing with rather than relying on the internet (a wonderful source of information but sometimes quite misleading I find...)

Not quite the same situation but my sister and her husband are both carriers of a gene for Pendreds Syndrome which causes progressive deafness. My niece was diagnosed with hearing problems and then my nephew 2 yrs later, at which point they had all the genetic testing done at Gt Ormond St and had some counselling there to understand what it meant. They were told a 1 in 4 chance with each child that they would have the syndrome. Knowing this, they went ahead with a 3rd pregnancy and sadly my youngest niece also has it. So despite the 1 in 4 odds each time, they have ended up with 3 out of 3 having the syndrome. Which I guess just goes to show that sometimes you can't beat the odds. It's not quite the same as your situation but my point was more that at least they knew exactly what they were dealing with and what those odds were so they could make a reasoned decison. Whereas I sense that you are still in the dark a bit about what this really means and I think it would really help to understand the implications properly - even if this means paying privately to see a specialist

Anyway, that's just my thoughts. Hope I haven't been too negative, that was not my intention, but having suffered the pain of miscarriage/ERPC myself, I just wouldn't want you to have to go through that if it could be avoided...

Oh, and one final point which might complicate things further in your mind. When I had my last OE cycle at Reprofit I did PGD, all embryos were abnormal (age rather than any other reason) and when I went in for transfer and was told there was nothing to transfer, I was offered donor embryos instead. I found it super stressful to have to make up my mind on the spot - having expected to transfer my own, and hence said no, I wasn't ready. Then had to wait months for DE as of course it was clear after that that I needed it
So 2 things from that - firstly that although Stepan says he won't put you on the DFET list now, he may well still offer embies at the time if he has any which would be a match and secondly, in as much as you can, prob an idea to prepare yourself for having to make that decision just in case he does

Right, I'll shut up now. Best of luck in deciding what to do, not an easy decision by any means and my thoughts are with you
Suitcase
x


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## bingbong (Dec 9, 2008)

I have to agree with Suity about giving the emotional turmoil some serious thought before you go ahead. I know  that it's so hard to wait when ttc but I do think that being better educated, and having had time to digest your diagnosis, might be helpful.

If you have OEIVF now and it works then I can only begin to imagine the stress of the next couple of months as you wait, firstly wondering if you are going to have a mc which as Suity says is a huge emotional distress. And if (hopefully) that doesn't happen you then have the stress of testing. At my 12 week scan one of my babies came back very high risk and I was advised to have further testing, I cannot begin to tell you the shock and distress that caused as well as some very hard decision making. People often say that they'd thought about what they'd do in that situation and I had too, but I have to say that a lot of what I'd thought went totally out the window and I thought about a lot of new things that I'd never considered when hypothetically thinking about it. 

For me it was complicated by twins as that makes everything more risky but I decided to go for the CVS which was one of the most difficult decisions I've ever had to make, I then had a few days of knowing that I was at risk of loosing one or both babies and an agonising three day wait for the first lot of results. Thankfully they came back clear but in that time I had to think about what I'd do if they weren't and that was so distressing and difficult. The whole experience totally knocked me for six and took me weeks (if not months) to begin to feel more emotionally stable. 

It was something that I wouldn't wish on anyone and although I think that it's great that we can do these tests I really wouldn't want you to go into it without having given some thought to the emotional aspect. Obviously you can get through it, but you've already been through a lot recently and is now the best time to put yourself through the potential stress of those first few months. I am sorry if I'm sounding all doom and gloom, I just want you to have thought about how it will be. I know that having tx helps, for me the way I got over my BFNs was to go straight into another cycle so I understand the drive to have another cycle before xmas. As Caramac says there is a risk of mc and problems with every pregnancy, but your awareness and fear of it happening will probably be a lot higher than most people's, especially given the diagnosis that you have only just had.

Anyway, I'm rambling now. I really hope that you make the right decision for you, whatever that may be   

bingbong x


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## wizard (Nov 6, 2008)

GG, firstly I am so very sorry that you have had this news, that it has been delivered so badly and that you are left without any real guidance or information from health professionals. That's just appalling. 

Secondly, this is your decision. Others' perspectives are often very valuable, but is still about what feels right for you at this time.

I don't post often these days but the possibility of conceiving and having a child that is diagnosed with a fatal condition is close to my heart and I thought I'd offer the 'when it happens' experience, rather than 'if it happens'.

My son was diagnosed with a bladder problem at 12 weeks. As the weeks went on the prognosis worsened. I had an intervention at 16 weeks where a shunt was passed through my stomach, then through his back and into his bladder to try and bypass what appeared to be a blockage. Sadly this didn't work. By 20 weeks it was clear he had no kidney function and other problems were being seen. I shan't bore you with the details but I made the soul-destroying decision to terminate the pregnancy. I gave birth to him in January at 21+2.

Louis was chromosomally 'normal' and it's not known what caused his problems. Apparently it's a 1 in 10,000 occurrence. I never got an official diagnosis of a condition but since losing him I have heard Potter's Syndorme mentioned by my consultant and it seems that this is what he had (there are a number of 'causes' to this condition but with the same effects). Anyway, knowing at 12 weeks what I did (and did not as his prognosis was developmental), the pregnancy was torturous. I stressed hideously for the whole time, I could not plan, I could not tell anyone I was pregnant (save for here), and perhaps worst of all by not doing those things I thought that the worst case scenario would be better to take. I had scans every week and sometimes twice a week during that time, I was being seen by 3 hospitals and it got to the stage that seeing my baby with the cumulating probelms on a screen just distressed me horribly.

I was wrong in thinking that the not planning and not telling would help me. When I held him in my arms I fell so so in love with him. Despite his condition he was perfect. Losing him has almost destroyed me. There have been many times when I thought I would not, and did not want, to see another day. I will never be the same person I was. 10 months on and the grief is as painful and raw as it was in January. The gaping hole in my heart knows no healing.

Of course no-one can ever plan or prepare for this situation and neither should you live your life as if this will happen. And I don't want to frighten you, there is a greater chance of you having a healthy baby than not. Plus you are you and in the event of any problems may cope much better than I have. But I did want to express what it is like when it is a worst case scenario, because I would hate anyone to go through this. I am unable to have another IVF or ICSI cycle because I am (irrationally I know) terrified of the same thing happening again.

As others have said I don't want to be negative. And I wouldn't change my son, only what happened to him. After I gave birth to him I could hear many other newborns crying but I wouldn't have swapped him for any of them or for the world.

The most important thing is that whatever decision you make, feels right for you. And hindsight is a wonderful thing, so you can only make your decision on what you *know* and *feel* now, and not what you don't know.

Wizard x


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## some1 (May 13, 2006)

GG -    I am with Suitcase, it is simply not acceptable for your consultant to have given you such scant information and left you feeling so worried and upset.  I would really urge you to ring his secretary, explain the situation to her and ask if she can arrange a phone consult or an appointment urgently - usually medical secretaries are pretty good in these kind of situations.  You need to have the full information in order to be able to make an informed decision. 

Some1

xx


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## Betty-Boo (Oct 14, 2007)

Didn't want to read and run ...  Honey know a little of how you feel - I've never managed to cycle with own eggs and was hit right in the face with DE's after my body failed me .... it knocked me for 6.  However after counselling I did work my way through my feelings and what was right for me.  
I saw a counsellor who doesn't specialise in fertility related problems - which was the best thing for me, as I found that everyone had their opinion of what I should do, but it didn't necessarily suit me.  
I couldn't see that at the time so by standing back and looking at other aspects really helped.  
It's a hard decision honey x x x 
Have you thought about counselling?  I also agree that your cons ahsn't given you enough information.  Is it worth booking in a private appt with another clinic?  I did that in Glasgow after mine didn't give me much info.  It was £150 well spent.
All the best honey x x


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## greatgazza (May 27, 2010)

Girls

thank you so much for your thoughtful and considered responses    

Wizard I'm so sorry to read of what you went through, that must have been truly awful and so distressing.  

You haven't frightened me and none of you have been doom and gloom, it's all stuff I'm thinking about anyway and it is stuff I need to consider if I'm to go into this with my eyes open knowing what the potential outcomes may be.

I don't think i'll go back to that consultant, although I may change my mind.  I have spoken to his secretary before and she was a bit of a cold harsh cow so not sure i want that particular battle just now.  

My GP is looking into genetics counselling for me and said that my mc consultant wouldn't know anything about it really and only a geneticist can really advise on this.  So I think i will pay privately to have that type of appt as soon as i can.

I need to do some more thinking and think I may still go ahead with my tx shortly but I may email Stepan and ask if i can have DFET if my eggs don't respond.  In some ways i think i would prefer that to happen.

Mini I am currently seeing a counsellor, which is good.  I sometimes thought maybe a fertility counsellor would be better, but maybe someone without that expert knowledge isn't such a bad thing.  I'll see her tomorrow and try and formulate some decisions over the next few days.

It's so hard as i just keep lurching from one to the other (as i'm sure is totally normal and what happens) so one minute i'm thinking, right, go for it, i could have a perfectly healthy baby, and as has been said regret what you do not what you don't do or then i could have horrendously distressing months ahead, which as Wizard has shown are tremendously difficult to get over and none of us would wish it on anyone.

Wizard could you consider PGD or CGH if you were to have another tx or have you closed a door on anymore treatment now?  

I know they say knowledge is power but i think i'd rather be blissfully ignorant as i feel kinda powerless not powerful...... 

Thanks again girls, I knew I would find some support here.  

GGx


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## wizard (Nov 6, 2008)

GG, I am really sorry that the secretary is unhelpful; I understand you not wanting to fight that battle.  I hope your GP can come up with some options to see a geneticist.  You can get referrals on the NHS but I appreciate that you don't have time to hang around and therefore may need to pay for it.  A couple of other ideas are to contact genetics departments directly and ask if you can see someone privately, or maybe try the fertility clinics that do PGD.  There are quite a few now.

Thanks for your kind words about my loss.  The consultant I see said that it is unlikely that PGD would have helped me in Louis's case.  It seems that at some point between the embryo being 4-6 weeks old some of the cells didn't divide properly.  This wasn't chromosomal and is therefore unlikely to have been detected through PGD.  My clinic have been doing PGD for some time now (I think that they were one of the first to do it in the UK) so I'm inclined to believe them on this.  I have been through dozens (52 to be exact) of my own eggs over 14 cycles with no living, healthy child so I think I need to heed the message in that!   

When we embark on this journey we have no idea where it will take us.  What happened to Louis, and in fact most serious fetal problems, are rare.  And let's face it if we seriously though that something like this would happen to us we'd probably never even try!  I understand your desire to try with your own eggs and continue with treatment now.  You know your situation too, and also that you are at a higher risk than others.  Bad things happen - simply because of bad luck or perhaps because of a condition one might have.  I really don't want you to think that I think you shouldn't go ahead - because that's not the case.  I just wanted to convey that when things don't go right, it's harder than you might ever imagine.  

I do so hope you get some decent information though to help you in your decision.

Wizard x


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## greatgazza (May 27, 2010)

Thanks Wizard.

Sorry you've been through so much, this really is a hard road, especially for us single girls who have to have this stressful treatment even if there aren't any issues to contend with.

I have left a message for the consultant's secretary as at the very least I want a bit more information or at least to know that the letter containing more information following the appt is going out as soon as possible.  There's no point in me trying to get to see a geneticist if i don't have all the information at hand and time is of the essence, so I hope the very least they will do is get that letter to me/my GP quickly.  I'm not going to argue for another appointment, I don't know if he'd give me anymore than he already has and tbh I'd just rather not see him again.  It's hard to have much fight left when you feel so worn down by this.

Have you ruled out the possibility of donor eggs?  And decided not to put yourself through anymore?

GG x


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## greatgazza (May 27, 2010)

Oh, i've also emailed Stepan and asked if i could have DFET as a back up if my mini IVF isn't looking good.  In some ways i'd rather have that but i'm sure i'd have to go on the waiting list so i'm not sure he'll let me even do this.

Suity having had experience of DFET (and the fact that someone else on here has it arranged as a back up if her mini ivf doesn't look good) I'm guessing it wouldn't matter what drugs i had been on?  As in my body would still be under the right conditions to go ahead with DFET?  Just curious what does one usually have to do body/drugs wise before DFET?  I'd be interested to know if that's my next option.  And i'm trying to find out what happens to our own eggs when we're having frozen ones put in?  I was reading on another thread about someone being worried as they had 4 follies at one particular scan but then ended up with only one follie so it was ok.  Why would it matter if/how many of our own follies we had as we're not actually using them are we?

GG x


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## suitcase of dreams (Oct 7, 2007)

GG - for a (medicated) FET you usually just have progynova to thicken the lining, and then cyclogest/gestone from about 5 days before transfer
In your case this time round, you would be building lining anyway as you are doing natural IVF - they would remove your egg(s) and then fertilise them, if they do not develop and there is nothing to put back, then you would anyway be ready to have something put back, so it would kind of make no difference whether your embies or donated ones if you see what I mean

I can't help with the natural/unmedicated FET as I've never done that so I don't know what happens to your own eggs in that case 

Suitcase
x


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## RichmondLass (Apr 26, 2009)

Hi GG

I'm sorry you've had such a shock with this information and that the professionals aren't being as helpful as they should.  You ought to have all the info at hand in this situaton.

However I just wanted to quickly pick up on something Caramac said about not regretting.  I know what she means in principle (you want to give everything your best shot so you can say your tried) but can I just say, as mum to a nearly 8 month old beautiful double donor baby, you would NEVER regret going straight to DE.  It is just not possible once you are pregnant to possibly have any sort of regret about using donor eggs - I hope Suity will back me up on this.  

Donor eggs are NOT second best.  Donor eggs are a wonderful opportunity to have a family you would not be able to have otherwise.  They are a fantastic route to becoming a mum and having YOUR baby.  

I cannot believe my luck quite frankly.  I have an adorable, healthy, gorgeous little boy who is 100 per cent utterly and totally mine, all mine.  I couldn't love him any more if i tried.  It in no way whatsoever makes a jot of difference if he carries my genes or the, frankly obviously very attractive, 26 year old Spanish woman's. I've just fed him pureed cottage pie, spinach and two pots of fruit cocktail, enjoyed joyous tickley giggles and cuddles that make my heart soar with delight and he's flat out in his little pjs and grobag.  I can't wait to see him in the morning.  That is the reality of donor eggs.  How could anyone have any regrets about that?

(Capitals not shouting just emphasis - I feel very strongly!)

Seriously you must do what you have to do but if you do choose to go down the DE route you wont ever look back.

RLxx


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## greatgazza (May 27, 2010)

Thanks suity and richmondlass

RL, it's lovely to hear how you feel about your little boy.  That is certainly what i would hope to feel. And in some ways I just want to get pregnant as soon as possible, however i have to go about achieving that, so I'm not sure I will struggle as much as others have with the switching to DE decision.

From your signature it looks like you went straight to DE without trying any treatments with your OE, is that correct?  What was your reasoning behind that?  How did you come to that decision?  Obviously now you wouldn't change a single thing but before you were pg with the double donation did you struggle/have any issues with the switch?  If so, how did you work through them?

As I say, I would possibly even be happy if i could switch to DE this tx but I do still worry slightly that there are still no guarantees with donor eggs, especially after reading Austinsuzie's story on the reprofit thread where she had PGD on the donor eggs she was due to have and they were all abnormal.  I guess you would just never imagine there being any issues with donor eggs.  But why shouldn't there be?  There's no reason they will all be 'perfect' either.  I don't mean this to sound negative because as I have already said there are no guarantees with anything and none of us know what's round the corner but it's just quite scary that things like that can happen.  It would probably never have occurred to me to even consider PGD with donor eggs and maybe many others would think like me.  There was also Rose who found out her sperm donor had issues.


Anyhoo, i already do feel that i'm pretty sure the pregnancy and carrying the baby would be the bonding that i would need to feel that the baby was mine and love it just the same.

How big a deal do you think is the proven/unproven debate?  Proven means they have donated before and it has resulted in a live birth/births?  I assume you can find out the same information if you were to just go straight to DFET?  The donor eggs they use for that must still have been donated by someone younger and 'fitter' as it were?

GGx


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## lulumead (May 29, 2008)

hi GG,


Don't have any wise words to add but wanted to send some    . It's hard to think it all through and not feel like you are going round in circles.  Hope you formulate a plan soon that you are happy with.


xxx


PS - RL, that was a lovely post. x


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## Betty-Boo (Oct 14, 2007)

Have to concur what lulu said .. RL that was so beautifully put.. thank you x x x


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## suitcase of dreams (Oct 7, 2007)

GG -Austinsuzie's was a very rare situation and is the ONLY time I've heard anything like that in the 2yrs or more I've been on the Reprofit threads. Not to dismiss her experience in any way, it's awful that it happened, but it is very unlikely that it would happen to you or anyone else....
That said as you've said yourself there are no guarantees with DE and it took me 3 attempts to get pregnant...

The proven vs unproven donor is very tricky - plenty of people have had success with unproven donors and not with proven and vice versa. Proven donors are often older which some people don't like as they feel a younger donor is better. It can be hard to get proven and early 20s (for obvious reasons!)
I would imagine you could get this info for DFET as well, yes...the DFET embryos tend to be created from back up donors (for fresh cycles they have back ups in case of problems with the primary donor but if all OK with the primary donor then they have spare eggs which they fertilise with sperm from their sperm bank...)

Best of luck with your decision
Suitcase
x

PS also agree RL's post was most eloquent and although my babies aren't here yet, I also feel that I could not love them more...


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## Diesy (Jul 19, 2010)

Hello GG,

Wise words on this thread and I see, full of hope 

I just had a couple of things to add, not much because everyone is making SO MUCH SENSE, and I agree with what comes before.  I like Suity's idea of being prepared.  I also like Bingbong's thought that it is all a risk at our age   Evens up the playing field a wee bit and I hope takes some of the stress away.  I would hate for you to go into this stressed to the eyeballs.

So, erm...I've always wanted my own weans but when I was with my (translocated) ex he wasn't keen on using a donor.  I never said to him but I would have switched to donor eggs, ie donor everything if he hadn't been able to consider donor swimmers.

I think a proven donor for the swimmers is a good idea.

It is such a lot to get your head round!  I always think, when you are up against it like this you always make the best decisions.  If you think you can de-stress and go for what you planned prior to this ill-delivered news..well you'll know yourself.

(Just to remind you from weekend chats, my ex's sis went onto have twins, they are all carriers of the faulty chromosome.  There are also a couple of strapping nephews and his four sibs, all carriers.)

Very disappointed the genetic counselling is private - the family planning clinic up here mentioned it like it was nhs.

Take care    
Diesy xxx


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## greatgazza (May 27, 2010)

Thanks girls

I had a look at the Kennedy-Galton genetics centre last night and at first was quite hopeful that i could see a genetics counsellor on the NHS but as you read through the small print it says that anyone having private fertility tx has to pay as a private patient.  It makes me mad really as it's not like i'm paying for private fertility tx just cos i want my own room or something!!!  It's a necessity in our situation and if we're not discriminated against cos of our age we're discriminated against cos we're single so lose out all round!!  Do they think we have endless pots of money and CHOSE not to have a man around and CHOSE to go through stressful treatment like this.....grrrrrrrr

So, basically even though I have balanced translocated chromosomes, factor V leiden in the family and Finnish type 1 congenital nephrotic syndrome in the family I don't get to speak to a doctor who can tell me anything about this and the possibility of bringing more unfortunate, ill children into this world who could have short, painful, miserable lives unless I have lots of 0000000's in my bank balance!!! 

Sorry, bit of a rant there!!

GG x


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## RichmondLass (Apr 26, 2009)

GG to answer your question my reasoning was pretty simple.  I was 44.  End of story. I started looking at conception at 42 when I was given a 2- 5 % chance of conceiving with my own eggs with IVF ( a generic age-related percentage not specific to me) and was told that's pretty much the same percentage as conceiving naturally at that age.  My FSH was good but my AMH was rubbish. My ex and I would have given it one shot with my eggs just to say we'd tried but knew my only realistic route was donor eggs.

So after splitting with my partner, once I'd decided to go it alone, there was no question I'd try my own eggs as by then i was 44 so I knew my chances wouldn't have improved in those two years.

However, my chances of conceiving using donor eggs was quoted by my clinic as 48 - 60 %.  So it was a 'no brainer' to quote a very clumsy phrase.  Which odds would you back - 2-5%  or 48 - 60%?  

I wanted a baby as quickly as possible by then so gave myself the best possible chance of achieving that. I did have some counselling,w hich is always a good idea, and that ironed out my niggles - would the baby think I'd been selfish? (all decisions to have a baby under any circumstances are selfish) what would he think of my decision to go abroad? (maybe he'll just be grateful that I brought him into the world).

I'm not attached to my genetics in the same way some other people are.  I don't feel the need to perpetuate my genes or see anything of myself reflected in my child.  My baby is fantastic in spite of me rather than because of me!  I look at him and think ' God he's gorgeous' and there's no vanity in that.

I had had the experience of falling in love with my ex's child, so I knew loving any child that came my way would be no problem. I often use the example of finding a baby in a basket on your doorstep (as per a Victorian romantic novel!).  if you opened your front door, found a little bundle in a basket, picked it up, held it in your arms -  you'd want to keep it wouldn't you?

Do people ask adopters if they love their adopted children any differently to their genetic children?  I don't think so. And yet people do feel the need to ask donor mums. Mums who have carried that baby since it was two tiny little cells.   

No I didn't have any real concerns when pg - of course you have the odd wobble but any pregnant woman has the odd wobble - will I cope? (clearly not from recent illnesses!)wht am i giving up?  What will life be like? etc.

i wish you the best of luck, it sounds as if you'r e  not getting much help fromt he NHS.

RLxx


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## greatgazza (May 27, 2010)

Thanks again RL.

As you say, when you see it there in black and white like that it is pretty much a no brainer isn't it....

hmmmmmm.  thinking to do.

GGx


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## Betty-Boo (Oct 14, 2007)

RL - thank you for your thoughts honey ... so very well put!!!  I know some have asked why don't I have another go with my eggies - but fast approaching 42 I do think its time to give those poor things a rest... I was at first quite het up about not seeing my eyes looking back at me .. blah blah blah... but I soon came round.  
GG epigenetics is something to read about too ... It's amazing as friends donor twins look so much like her!  After all remember its your body switching those genes on and off.... You body feeding baby ....  They always say that with DE there's always 3 biological parents - genetic mum and dad and the mum who carried the child...  
All the best honey - you will come to your decision but it will take time.  I still have major wobbles all the time...
Take care mini x x


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## greatgazza (May 27, 2010)

Thanks for all this girls.  It really is good to hear from voices of experience.

I am seriously considering donor embies now and Stepan has said that if my mini ivf isn't looking successful i can have DFET.  However, to be honest, i'd rather actually just switch totally to that now but i'm not sure he'll let me do that.  I'm going to ask although i'm already feeling embarrassed about asking questions and hoping he doesn't get pee'd off with me.

Suity, can you remember how much your DFET was?  I have a price list from Stepan which says 'frozen thawed embryo transfer' at 200euros, that seems very cheap so i'm assuming that would be someone's own embryos that they had left there from a previous cycle?  It also has oocyte donation cycle at 3900euros which i'm assuming is a fresh cycle.

GG x


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## suitcase of dreams (Oct 7, 2007)

No, actually I paid €1000 for my FET which came from a fresh DE cycle. Think the €200 is for FET from your own eggs...not quite sure why there would be a discrepancy in price for the 2 kinds of FET. I remember I did wonder about it at the time but by the time I'd translated the bill from CZ to £ it was all a bit too late to ask why....

GG - don't be worried about asking Stepan - if you want to change better to be clear about it now   

Suitcase
x


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## Candee (Feb 1, 2009)

Greatgazza I am mummy to a double donor baby girl and RL's gorgeous post summed up exactly how I feel - although we have not graduated to shepherd's pie yet - 'cos tbh Mirrey spits out anything lumpy and gives me a dirty look if I even casually offer her a spoon of spinach and yesterday she realised that if she doesn't want to wear her hat, then she can just jolly well take it off and chuck it! Wish she did about fifty times in town today! 

Are donor eggs second best? I can only tell you for me donor eggs feel like I have all my Christmases, the European lottery and every good thing in the world all at once... In February 2009 I was told I would never have a baby and now I am floating rubber ducks in the bath and have a baby who finds me so hilarious in my shower cap that we were both nearly in tears laughing this morning! I feel so incredibly lucky and to anyone who is reading this, and thinking about donor eggs, I can only tell you that if you are ready for them, donor eggs are an absolute blessing. 
Candee
x


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## greatgazza (May 27, 2010)

Hi all

Candee thanks for your thoughts.  I am sure if i were lucky enough to get to the stage you and RL (and suity soon to be) are at i hopefully will feel exactly the same.

I guess my only concern is that with the news i have received that i'm going to be switching to donor eggs before i've even given mine a chance.  I feel this decision is having to come about sooner than i would have liked and it feels a bit 'rushed', without me having as much time as i would have liked to prepare and get my head round it.  I feel like i need to grieve for my own eggs but worried i will always think 'what if', what if they were ok, what if i didn't fall in the risk category and had a healthy baby... but then weighing up the pros and cons i don't know if i can bear the stress and heartache of trying my own eggs and having to wait to see if things are ok....or have the financial and emotional wherewithal to have PGD with my own eggs and then find out they're all abnormal.

This is all such a juggling act, mentally, emotionally, financially and physically and in some ways i want to jump at the chance of donor eggs as the route with my own eggs seems potentially fraught with stress and heartache I just wish i could have exhausted my options with my own eggs and known that i could do no more so moving on wouldn't be so difficult but in many ways i just want to be pregnant as soon as possible with (very hopefully) a healthy baby and maybe it has to come down to practicalities for now and i have to be quite matter of fact about it.  Also at my age there are already inherent risks so as suity has mentioned to me, the stress of having a few cycles with my own eggs and no joy would also be very tough.  I'm sure this decision isn't taken lightly by anyone and tougher for some more than others but as you and RL have illustrated, hopefully once i've taken this particular path i won't look back and won't have regrets.

GG x


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## suitcase of dreams (Oct 7, 2007)

GG - re exhausting all options with your own eggs, I just wanted to say that I',m not sure you actually ever get to that point. I can see what you mean about feeling you've barely given yours a chance, but even when I moved on to DE there was still a small part of me that thought, well, one more go might be the lucky one....so to some extent you could see yourself as being in the somewhat fortunate position of essentially having the decision taken out of your hands. I remember thinking at the time if only the consultant would just tell me to give up with my own eggs it would be so much easier...and to some extent this is what you have in your situation
Never easy though    
But there are enough of us here either with DE babies or pregnant with DE who can testify that you won't look back once you've made the move
best of luck
Suitcase
x


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