CARE Fertility Bulletin Board

catherineyoung · 28 Jun 2008

Hi

There was a letter with the bottle but it was for us to give to our GP to arrange for 'FISH' analysis. There were two tests as they want H to do it too. Very confusing. H had received a call from ALison at Guy's to say that funding application was almost finished and ready to go and to expect to hear about the funding within 3-5months? If these tests are to start the probe, then I would think that it would be best to continue with Guy's? However, again the travelling would be tricky but they did tell me that I would probably only have to go down between 4-7 times so it wouldn't be too bad (if it is only 4?)

Oh I wish I had a fairy Godmother to tell me what is best! For now, we are going to go to CARE for a consultation and see what they suggest and wait until after Thurs to get the blood tests done- I think?

Have a lovely weekend and maybe see you soon

XXX

Ros · 26 Dec 2008

Hey ladies, I hope you've all had good Valentines weekends, you lucky thing Catherine being off for a week now. I have Tuesday off work for my big appointment and I'm excited about that! If you hear some screams coming from London it will be me if they tell me I have to wait ages before I can start. I have a feeling that will be the case from everything I've seen with you.

WelshFrank, pleased to see that you're starting DR soon. I had buserelin on my last two cycles for DR but I was on Gonal F for Stimms, when do you start exactly?

Catherine, I'm rather confused about the message Alison left for you. If the funding is secured then why would it take 3-5 months before you can start? or did she mean that she is about to send off the funding application? hmmmmmm sorry if I'm being stupid. I don't have the asnwer for your query other than to call up Guy's and ask what these test are for? I wouldn't have thought they would start on the probes until they have the funding through, unless you have said that you'll pay if you don't get funding. Oh, I don't know. What date is your care consultation? x

Ros · 26 Dec 2008

I meant 'I'm sure they WOULDN'T start on your probes until the funding is through'

Is there a way I can edit my posts once they have been submitted?

Ros · 26 Dec 2008

Just read your blog WelshFrank, I have to say it could have been me writing that...
Why do lovely couples who would be brilliant parents get both infertility issues and translocation issues? I mean, one would be bad enough but to get both is just devastating. I have endo and PCO, my DH has a low count, we've had two ICSI cycles last year, lost two babies at 8 weeks and now we find out I have a reciprocal translocation which means all my unbalanced embryos will miscarry in the first tri. I may find out more this Tues at my first PGD consultation at Guy's. It just makes me so cross that we have to go through all of this (whilst other people are churning out babies willynilly) and then the PGD team make us wait months and months ... arrrgghhh
I shall be following your blog hun, I wish you all the best. Thursday is going to be a day you'll never forget and I hope it is the beginning of the happiest time of your life. If you have any ICSI queries you know where I am. Good luck x

catherineyoung · 28 Jun 2008

Hi Ros,

Had a lovely weekend- went to see 'Flashdance' at the theatre and it was great. We were confused too. Having re-read the note to our GP, the bottles are for the probes. Thinking back, we did say that we would pay for this bit if the PCT said no to speed up the process, so I'm sure that is what is happening. Alison did mean that the application was now ready to send off (3/4 months after our first appointment) hence our frustration. First thing tomorrow, we will be on the phone to discuss what and where to go next.

Good luck for Tuesday, would love to hear how you get on. Did you say that you were self funding? I'm sure things will be a lot quicker for you if that is the case. Really hope you get some good news. My CARE consultation is supposed to be Thursday but I think we are going to stick with Guy's if we are starting to make the probes now....?

You can edit your posts by clicking on the little paper symbol next to the time you submitted the post (I think)

Take care and good luck again
Cathy
XXX

louisa33 · 26 Jan 2009

hi all.. sorry for being unsociable.. don't often check this site but need to do more often!

Catherine - on the bottles - I think they're developing your PGD probe for you. You see, when we initiated things last Sept Alison told us we had a choice to get the blood test work underway in parallel with the application for funding, or to wait to see if the funding had been successful and then do the blood test. I asked her for her opinion and she said that they were happy to do the two in parrallel as apparently up to 80% of couples get funding and I guess it's therefore low risk for them to do the work and be ready to go. Depends on how they're doing your tests but I had a bottle, my husband, my mum, my sister and her son! In addition they were able to get an old blood sample from my dad (also haemophiliac) who sadly died a few years ago.

In terms of happenings.. well nothing since last chat! They said in Jan that they were starting to develop the test and it would take 8-10 weeks so I guess that takes us to the end of March. But the dilemna we had was over group hols this year.. and so have decided to go with the hols and to start the "free" cycle in August. On the drinking - good advice. Not that I'm an alcholic but it does make sense to get really really healthy in the coming months. The further complication is that I'm diabetic so that doesn't help!! However, it does help with coping with injections - a doddle!

Take care all

Louisa

catherineyoung · 28 Jun 2008

Hi Louisa and all,

Have called Alison and left a few messages but heard nothing yet but we have decided to stick with Guy's for now as it would be wrong for us to be trying to go with CARE and Guys but we are going to just keep ringing Alison and PCT to try to get things to happen as quickly as possible. If possible we would really like to cycle in the summer holidays so that I dont have to have loads of time off work and then we can make the most of being in London and stop in some nice hotels etc.

Talking of drinking, Oh my God I am struggling today. Like you, I have been trying really hard to get as healthy as possible (i.e drinking rarely and eating healthily) but I went out with the girls last night and had two glasses of wine (large ones though) and I am suffering today- sick all night and twice today. Still in my pyjamas!!!

Off to a spa tomorrow thanks to lovely hubby- can't wait! I think you are wise to have your holiday before you cycle, it will get your head in a good place and prepare your body!

Lovely to hear from you again,

Love to all
Cathy
X

Ros · 26 Dec 2008

Hey ladies,

Just a quick update on my Guy's PGC Consultation on Tuesday this week, it was rather traumatic....

They told me that my translocation was unique (as are most I think). I thought that ALL my unbalanced embryos would miscarry as I have lost two so-far but they told me that there is a 5-10% an unbalanced embryo of mine would grow into a baby, BUT that baby would have severe mental and physical problems. This is rather scary stuff. This means that if I can get pregnant naturally then I have to go through tests to see if the baby is balanced/ normal or unbalanced. Then if it is unbalanced we will have to decide whether to continue with the pregnancy or not. They cannot be specific about the severe mental and physical problems, they said the baby could also die just after birth.

What a nightmare. and then I told them my sister is 16 weeks pregnant. They said that they strongly advised that she went to see them incase she has the same translocation as me as it could mean there are problems with her baby. They said that it was urgent that they see her so my Mum managed to get her to agree to go in for the blood test on Wednesday. My Mum has had the test too. So we are now waiting for her results, and hoping she is normal so we there are no concerns for the baby. My sister says that even if she is balanced then she will not test the baby and she is having it whatever, but understandably she is beside herself with worry. I feel so guilty that I have brough this upon her when she was happy that is had passed the 12 week mark and was feeling confident about the pregnancy now.

So, back onto the PGD. The cons said we would be unlikely to get funding as we have already paid for two ICSI and we would be paying for a third now if this chromo problem hadn't come up. So, we aren't going to apply for funding, we just want to get started asap. They took our blood and said they would write in approx 8 weeks when the probes were ready, then I'd need to see my cons in the ACU and arrange when I could start. They told me that I'd need to go on the pill before I start down regging (not quite sure) and they gave me a lecture about not trying naturally whilst the probes are being made. My aim is to start in May (ish) time but we'll see. They don't like to be very specific about anything as you all will know.

Then, the cons said that she wanted me tested for an overactive thyroid before I start my tx, so I am waiting for the results for that. If I do have an overactive thyroid all the PGD will have to wait a very long time (maybe 18 months arrrgghhh) whilst I'm on drugs to calm it down. I am so hoping that the results come back clear, but knowing me it will probably come back bad Sad

So, a very stressful and emotional week for the whole family. Hope you're all ok and having a good weekend. Cathy, you sound very relaxed and happy so that is good. Louisa, I hope you hear back from Guy's soon.

x

catherineyoung · 28 Jun 2008

Hi Ros

What a traumatic consultation-you poor thing, as if you need any more stress! I had to have all my family tested when we found out about my translocation and they all came back as 'normal' so try not to worry. Have they told you how long your family will have to wait? I was told up to 3 months but they came back much, much, much sooner so try not to worry. I think 3 months is just what they seem to say for everything. Also with regard to the thyroid issue, I think this is a standard thing they have to test your for (as well as immunity to German Measles) and I would imagine that if you had an overactive thyroid you would know about it as it has a lot of symptons so try not to worry and keep positive.

We have almost decided to sel fund as well, because although Alison seemed quite confident that we would get funding (80% she said) my GP and consultant up here were certain that we didn't fit the criteria so we feel like we have been waiting pointlessly for the funding application (since Oct) Therefore when our probes come back (we sent the bloods on Monday) if we haven't heard about the funding (and we are going to keep ringing them) we are going to borrow the money from my parents and if that is the case, we would end up cycling at the same time I think.

I too had the lecture about trying naturally and when we go down for our nesxt appointment I will have to tell her that I have had another miscarriage since seeing her in Oct. Did they say why you had to go back on the pill? She old us that too, but I couldn't remember why I would imagine that it is to control your periods so that they can time things correctly? I still haven't had a period since my last miscarriage which is very irritating!

I have had a relaxing week off with no major incidents (which for me is now rare) but not looking forward to going back to work on Monday.

Good luck to you and your family Ros, for all your upcoming results I'm sure they will be fine (fingers crossed)

Keep smiling everyone (especially Ros) and look after yourselves.

Cathy
XXX

Ros · 26 Dec 2008

Awww thanks Cathy, they said that my sister's results will be back on 1-2 weeks, it is quick as they already know which chromosomes they are looking at. My sis is now not mentioning the tests at all and carrying on buying baby stuff and maternity clothes as normal, I just don't understand, maybe it's her way of coping with it.

But wow, if your bloods went in on Monday and mine on Tuesday then we realy might be cycling together, that would be exciting, we could meet for a hot choc and discuss follicles and injections, ha ha.
Glad you're getting there with decisions with your DH, I know it's alot of money but if it increases our chances of having our own babies then I can't think of anything I'd rather spend the money on.

I didn't get the pill thing either, the lady was quite stern about it. I was thinking that I've never had the pill before my last two cycles so what is the difference with PGD? When do you go for your next appointment? Is that the appointment once they have made the probes? They said that would be the next time we go in, but I don't expect to see much of the genetics people as once you're doing the cycle you'll be the responsibility of the ACU I would have thought. They said my cons from before would do EC and ET as per a normal cycle so that was a relief. The staff in the ACU are lovely.

How wierd that your AF hasn't come yet, I hope it comes soon so you know where you are. I have heard of other girls with the same thing after a m/c, the docs can give you some drugs to bring on an AF if you need that. You'll need to know where you are before you can start DR, so the pill may be required for you.

Glad you've had a good half term, I'm on my hols next Sunday for two weeks so won't be on here over then but will catch up when I'm back (obviously!). Hope you have a good week, I'm not looking forward to work tomorrow either... x

hello to everyone else too Smile

x

catherineyoung · 28 Jun 2008

AAAAARRRRRRGGGGG! My hubby rang Guy's again today and they still have not sent our funding application off and it is almost 4 months!!!!!! They are developing our probe though so at least we have a little hope. Hope you are feeling better Ros and those test results come back soon. Bet you can't wait to go on holiday now- you lucky thing. Had a shocking first few days back at work -my boss (headteacher) is off sick so I'm left in charge but also have my class of 35 10/11 year olds to look after-nightmare!

How did you get on at CARE Welsh Frank? Good I hope. I decided not to go at this stage at Guy's have definately started to work on our probe and I thought it unethical for me to be getting done twice. Just hope we made the right decision to continue with Guy's- time will tell.

Anyway thought I'd say hi whilst DH is watching football Shocked

Best wishes to everyone

Cathy
XXXX

Ros · 26 Dec 2008

Hi Catherine, my thyroid results came out norml, and my sister's chromosome results came nout normal, thank goodness for that, so it looks like at 17wks she and the baby are fine. Guy's were very good rushing her tests through in a week, we are all so impressed. My Mum's haven't come back but I have a feeling (and I hope) that she is normal too, not that it matters as she isn't going to have any more children, but I think it will be easier on her if she comes out as normal and my translocation just happened when I was 'made', I think you said that was the way it was with you too.

Really sorry your funding application has taken so long, why on earth does it take 4 months to do the paperwork?! Do they not realise that holding us up makes this whole stressfull business alot more stressfull?! grrrr. Sorry you've had a rubbish week back at work, at least it's the weekend now...and every day that goes by, is a day closer to our probes being ready, maybe they are sitting next to each other in the lab?! isn't that a funny thought Smile

I'll be back on in a couple of weeks, hope you have a less stressful time whilst I'm away. I can't wait for us to get the letter to say that the probes are ready, that will be so exciting Smile

x

Hello to everyone else, keep us updated on your progress x

catherineyoung · 28 Jun 2008

Hi

Just wanted to say hope you have an absolutely wonderful holiday and I'm glad you have got the results you need before you go. Have been pestering and pestering Guy's and they have told us that they have put the application in the post today (we'll see) and I rang the PCT and they said that if it arrives (complete with no mistakes) our case could be heard on 17th March. Fingers crossed.

It turns out that my boss (headteacher) wasn't actually ill she was attending interviews for an advisory post, which she got and she is due to leave at the end of May. Hopefully the new one will be more sypathetic about our situation only slight complication is that I will have to be acting headteacher from May- Sept and we were hoping that this would be the time we could start to cycle (but if I have no boss at the time it might make it easier????) We'll see.

Anyway, really should get back to work. Have an absolutely brilliant holiday- I cant wait to hear about it.

Love and best wishes
Cathy
XXX

Hi to eveyone else too hope things are moving for you guys?

WelshFrank · 07 Sep 2008

Hi girls,

sorry I've been AWOL. I have been concentrating on keeping my blog up to date and so have been neglecting posting on here!

Ros - such a relief to hear that your sister's results were negative. I can't imagine how worried you must have all been.

Cathy - well at least your application's in the post now. I really hope it is heard on 17 March and you get a yes. Will be keeping my fingers crossed for you.

Good luck for both sets of probes to be completed quickly.

So, I've been on the downregging drugs since 19th, so tonight is my 9th injection! Shocked

The needles are absolutely fine and the side effects are not too bad. I've had a thick head for a few days and have been very sleepy at times, but it seems to have lifted now. I now have my period, earlier than usual, which I'm surprised about, and also heavier than normal.

I've got my downregulation scan on Wednesday 4th in the morning, and they'll also teach us how to do the Menopur injections. I really hope my body has downregged by then as I'm looking forward to moving on with the next stage - follicle stimulating.

So, all in all, it's going well. Please, please let this work.

Hope you all have lovely weekends.
x

catherineyoung · 28 Jun 2008

Hi

Great to hear that things are moving for you now Welsh Frank-shouldn't be too long before you can start the really exciting bit.

I'm still waiting for my period after my miscarriage-its been about 8 weeks now so I am getting fed up. After all of my other ones I got my period after about 4 weeks so I dont know what is going on!! Prob end up at the docs again (feel like I live there sometimes).

Will have a nosey at your blog but pleased to hear things going well for you. Good luck for the next stage.

Keep in touch I have all my fingers crossed for you and I really hope this works for you so you can have your own mini-Frank (or Frankie)

Take care
Cathy
XXX

louisa33 · 26 Jan 2009

Hiya all

Ros - that's great news for your sister - really pleased to hear that.. and also your own thyroid results.. all good!

Catherine - 17th March (St Patrick's day!) is not so far away - so you should have good news next week!! Fingers crossed!

Welshfrank.. sounding good too! Try to take it really easy and stressfree (easy - not!).. Loads of fingers crossed!

(I need to stop doing the exclamation marks - they must look annoying (!))

Well - for us - Alison phoned last week and left a message on our phone. DIdn't get to phone her back as we were away - phoned her back yesterday. Great news in that the test is all worked up and she says it is 95% accurate (or was it 98%?). Anyway sounds good too. She says the next thing I have to do is to get another blood test to check my own clotting levels before they start giving me medicines... so that will be the next step. I mentioned to her that we wanted to not start cycling until August and she was absolutely fine with that - sounded about right to her anyway what with the blood test and the second appointment we'll need to go down for. Think that's the one where my husband will have to.. em.. get his sample checked(?).. something for him to look forward to..>!

Take care all. Sorry for waffling.>!

catherineyoung · 28 Jun 2008

Hi Louisa,

Good to hear from you. I didn't think you were waffling by the way.

Good news that things are moving for you. Doesn't look like we are going to get our case heard on the 17th after all. Phoned PCT to ensure they had received our application but they told us because it is an unusual case they require more information about my translocation etc so they have sent another form to Guys to be completed (lets hope it doesnt take another 4 months to be returned). Think they are getting fed up with us calling but it seems to be the only way we get things moving. Very frustrating!

Anyway take care and chat soon

Cathy
XXX

Ros · 26 Dec 2008

Hey ladies, I'm back from my hols, it was fab, so beautiful and sunny. Shame I'm back at work now.

Cathy, I'm really sorry 17th March has been delayed. I hope it doesn't take long to collect the rest of the info. Why do these people have to be such a pain about it, they probably wouldn't understand the extra information anyway. Great news about your boss though, I hope someone more understanding comes in instead.

WelshFrank, how are you getting on? You must be stimming or ready for EC now I guess? Let us know how it goes with your embryos and the screening of course. We all have everything crossed for you.

Louisa, wonderful news that your tests are ready and very accurate, must be lovely knowing they are waiting for you in August. The bloods and your DH's sample will be easy peasy so you can relax and get super healthy for August now Smile

My news is that we found out yesterday that I have inherited my translocation from my Mum. She was so upset saying that it was her fault about my m/c's. I told her not to be a silly sausage as she has had two daughters, one normal and one balanced, so if I get half of that my dreams will come true. She is very lucky not to have had a m/c. I've worked out that it's 4 weeks since my probes have been started so hope to hear back from them in another 4 weeks. I've emailed my cons at Guy's ACU asking him if he wants me in soon to discuss things and take all the usual bloods etc which are needed for IVF, it's over a year since they were last done for me so I need to get them done again.

Hope you're all enjoying the spring sunshine x

WelshFrank · 07 Sep 2008

Hi girls

Rose - thanks for asking after me. I'm sorry to hear your mum is upset. My dad felt a bit like that as he passed the CF gene to me and my sister. Sounds like your probe won't be much longer now. Things should start happening for you soon.

Cathy - sorry to hear about your hold up with Guys and the PCT. I hope they can get it sorted for you soon.

It's all happening here!

On Friday 13th, the day before egg collection, my H fell off a roof and broke his arm, his cheekbone and badly bruised his ribs. We spent 6 hours in A&E and being sent from hopsital to hospital. Not the best way to prepare for egg collection! We were both so worried that he would be kept in and the cycle would be cancelled. But luckily we were sent home and egg collection went as planned. My H has gone in for an operation today on his fractured cheekbone. I feel awful because I haven't taken him to the hopsital. We decided that it was probably better that I stayed at home and relaxed (plus take the all important phone call) as what with MRSA and what have you, hospitals are not the best place to prepare for receiving our precious embryo(s) in a couple of days time.

So, we're right in the middle of the frenetic, nerve-wracking bit between egg collection and embryo transfer. We had 7 eggs collected, and on Sunday we were told that all 7 were mature and 6 had fertilised by ICSI. Yesterday we had another phone call to say that we still have 6 embryos, 2 at grade 1 and 4 at grade 2, and that there were 4 with 4 cells and 2 with 2 cells. All looking good.

Today the embryologists are going to perform the test for cystic fibrosis on the embryos (the PGD bit). They will phone later to let me know how the procedure went but we won't get the result till tomorrow afternoon. Just praying now that the embryos are still hanging in there and that the test goes well.

So that's my news. I am feeling fairly calm about it all and of course hopeful. Waiting for the phone to ring is excruciating. In the hour leading up to when the clinic calls I get so much housework done - anything to take my mind off it!

Hope you are all ok.
xxx

Ros · 26 Dec 2008

wow, Welshfrank, what a few days you've had. So pleased the EC went smoothly and today is the big day 3 PGD day. I know what 'day3' after EC is like for normal ICSI so I will be a nervous wreck when they do the PGD bit aswell! well done on getting some lovely embies, I do hope you have good news from the embryologists soon, when do you hear back from them?
I hope you're feeling ok after EC, I am so impressed with your cleaning the house strategy for delaing with stress, I'll have to try that next time!
I have everything crossed for you and your embies, I hope your DH is feeling better soon, next Friday 13th you'll hve to both stay in bed Smile

Thinking of you x

catherineyoung · 28 Jun 2008

Hi both

OMG Welshfrank hope your hubby is ok- something else to worry about for you. I'm not totally clued up about embryos yet but from what you have written it all sounds good so fingers crossed for your results tomorrow (will be thinking of you). Ros is right, next Fri 13th think you need to hide away!!!

Ros glad you had a fabulous holiday whilst your tube of blood and mine are hopefully get the full works and will be ready for us soon. The wait to see if we get funded is absolutely driving me insane!!!! Guy's didn't get the second batch of paper work in time for us to be heard at the hearing today so we have to wait until next month (that is if the paperwork arrives in time for that one!!!). Your mum doesn't need to feel bad, she gives hope to us all to show us that it is possible with a translocation to get our dreams!

Hope time goes quickly for us all especially W.F (Welshfrank) tomorrow we will all keep everything crossed.

Thinking of you both X
Cathy
X

WelshFrank · 07 Sep 2008

Quick update. Of the 6 biopsied embryos, 1 was CF affected, 2 were normal but not good enough to transfer, 2 gave off confusing results (apparently they had 3 copies the errant gene) and there was one healthy embryo.

We are shocked that 6 has gone down to one, but now hoping so hard that this little fighter survives the night and is ok to transfer tomorrow.

Please send some strong survival vibes for our little fighter.

xx

catherineyoung · 28 Jun 2008

Hi W.F

Definately definately definately sending you positive vibes for your little fighter. You only need one for it to work so dont be down hearted we will have everything crossed for you.

Been dying to log on today to know how you have been getting on. Keep strong and positive W.F

Thinking of you- hope you get some sleep tonight.

Best best wishes to you, hubby and L.F (little fighter)

Night night and God bless
Cathy
XX

Ros · 26 Dec 2008

Wishing you and your L.F. all the best for today WF. I do know how easy it is for the numbers to drop with normal IVF/ICSI. But as Cathy says, you only need one hun. Sending you so many good vibes today and hoping you are PUPO (pregnant until proven otherwise) very soon xxx

Hi to Cathy too Smile

x

catherineyoung · 28 Jun 2008

Hi

Just wanted to say been thinking of you all day W.F and L.F hope it all went well and you are ok.

Love and bext wishes
Cathy
XXX