CARE Fertility Bulletin Board

louisa33 · 26 Jan 2009

hi both.. just jumping into your conversation as my husband and I are at a similar stage of PGD. We're trying to not have a child with severe haemophilia A as it seems very prevalent in our family (i.e. all boys) and I'm defo a carrier. Anyway, fyi we live in Derbyshire but have been referred to Guys. Told Alison Lashwood we wanted to go for it mid September and by January our PCT have granted funding for 1 cycle. Sounds strange that your PCT hasn't heard anything yet Catherine as my experience of Alison is that she's very efficient. My guess is that it's your PCT that probably have the problem.

anyway.. fingers crossed for us all! Alison was good in that she's been collecting bloods from our families whilst waiting to hear back from the PCT. Now they have 8-10 weeks to work up a test before we can progress from there. Takes bloomin' ages though, and all my friends are having babies left right and centre!

Ros · 26 Dec 2008

Hi Cathy, it was Alison Lashwood I spoke to last week, she was the one who said it would take ages to get to the point of starting the cycle. She did sound very nice and terribly efficient though, I hope your DH gets through to her soon (I didn't know she was about to go on holiday last week when I spoke to her).

Mexico sounds fab, I'd love to go there, did you get anything booked up?

Hi Louisa, welcome to our PGD chat! I'm glad things are progressing nicely for you at Guy's. Have you been up to the ACU yet? It has amazing views and really lovely artwork on the walls. I think all PCT's are different in the way they work out funding (and the speed at which they work) so maybe that's why yours came through relatively quickly unlike Cathy's. I have no desire to wait for my PCT in London to make a decison (not that Guy's can even submit it until my PGD consultation on 17th Feb) so will probably just fork out for it all...ouch...

I really hope that PGD works for you, I guess you know which chromosomes have translocated for haemophilia? I find this stuff just fascinating. Does that mean they are going to look for a balanced translocation/ normal embryo for you, or a girl embryo so there are no concerns at all? I hope you don't mind me asking, it is just amazing that they can do this these days. If you need any advice or someone to listen on the IVF part of your cycle I'm happy to help out! Please keep in touch and let us know how you get on x

WelshFrank · 07 Sep 2008

Cathy - I just wanted to come on and sympathise with you about your PCT/Guy's frustration . . . .

I have to tell you that exactly the same thing happened to us. We went for a first consultation with Alison in mid June. One month later (!) we had a letter to thank us for coming for our consultation and to let us know that they would be applying for funding for us now. Ok - I thought, perhaps they've been busy.

Then another month later (late August) I rang the PCT to check on the progress of the application. I was told that they had not received an application from Guys for us. I emailed Guys (Sam Ladhani is the PGD administrator in charge of the paperwork) and they confirmed that they had not even begun on my funding application. In fact, my file was sitting on Alison's desk and she had gone on holiday without passing it to Sam to deal with.

I was really angry with them. Given that PGD patients go through so much more waiting than regular IVF patients and have more complications to consider, I felt that making us wait due to administrative inefficiency was really not on. Then I imagined that the funding form was some really lengthy document - in fact the one for my PCT was 2 pages of A4 and not rocket science.

So, I investigated with CARE, found their attitude totally different and transferred to them immediately. my emails and telephone calls are answered promptly and I feel supported.

Then my GP took ages to complete the funding application on our behalf, but we had our CARE consultation in November, and our PGD probe is mid-development now. We have about 4 weeks left to wait till it's finished and then can begin on the cycle in March.

Just my experiences, but I feel I have been treated so much better by CARE than by Guys.

xxx

(sorry for the essay!)

louisa33 · 26 Jan 2009

hi all
I think what the problem with Guys is the typical NHS problem across the country in that they are trying to cut back on admin staff and bizarrely that's what can be to blame. I know someone who works in a different hospital and she always complains that their admin staff have pretty much been obliterated. When I've dealt directly with Alison i.e. via email and phone it's been very efficient. But yes, when I've been waiting for a paper letter it's taken ages. Overall I'm pretty happy with things so far but treatment has yet to start so we'll see.!

Ros - the way it will work is by pgh I think in that they'll do "markers" checks?? they've taken blood from pretty much everyone they can in my family and my husband's too.. and are using all that blood to set up the tests. the good news is that healthy boy embryos can also be identified.. until recently you're right in that they would discard all boy embryos. i think they will also tell us if the embryos are girl carriers like me... that will be a difficult choice too as if that choice had been made 30+ years ago (!) I would not exist today. Difficult! Confused

Ros · 26 Dec 2008

Thanks for the very interesting info WelshFrank, I agree that it it did take Guys 3 weeks to send me out the paperwork I had to fill in before they could get me a date for my consultation. Like you, I had visions of it being really complicated and taking ages for them to work out, then when it arrived it was just a basic form asking name, address, hight, weight, details about previous IVF and miscarriages...and the most amazing thing of all is that Guy's ACU have all this information on me so it was sitting in the same building as them all the time. I really need to have done my PGD cycle before September (my first PGD consultation is Feb 17th) what do you think the chances of this happening is? (I won't be waiting for funding as we will just fork out for it rather than wait, we'd be paying for another ICSI cycle right now anyway).

Louisa, glad they can work out the embryos for you hun, it is magic stuff they can do. I know there are all sorts of eithical things to consider but we are not asking for designer babies, we're just asking to become Mum's and that's the most natural thing of all.

I'm so pleased there are a few of us on the PGD pages now so we can check up on each other Smile

x

WelshFrank · 07 Sep 2008

Hi Ros

It's hard to say whether you'll get your first PGD cycle in before September. As I say, I had my consultation with Guys on June 17th 2008, and we were told by Alison not to expect to get started on our cycle before the early part of 2009. This was because she said it takes 3 months to secure the funding, and around 3 months to develop the PGD probe, and she also said that there would be a delay while they moved into a new building.

But with CARE, I had my first consultation on 5th November, and meanwhile we applied for the funding through my GP from September to December. We are expecting to start downregging in March, all being well. So from the consultation with CARE the time lapsed until start of treatment will be around 16-18 weeks.

Even if you're self funding, I think you need to factor in at least a 3-4 month wait from consultation to drugs starting for the probe development, paperwork and other tests. But this does not take account of the extra time you may have to wait in a queue or while they sort out paperwork at Guys!

Hope this helps. My advice would be to try to plan lots of milestones to get you through the long PGD wait. I have gone slightly mad some days, but it always helped me to have something to focus on and to count down towards. Now I have a holiday for one week coming up and when we get back we have our injection consultation on 27th Feb. After that we'll be on the home stretch to waiting for AF and starting with the needles! xxx

Ros · 26 Dec 2008

Thanks for the info WelshFrank, I might askwell book a holiday then. All these years I've been too scared to book holidays incase it fell over treatment times, or if I might be pregnant....
Not long for you then, wow, once you get your AF you'll be so excited. As I've sid to the other girls, if you have any IVF queries or worries you know where I am. I'm happy to be able to help anyone through this stressful time. Saying that though the key is to be as chilled out as possible I've found, so work on that bit! Let us know when you know what day you'll be starting DR and your drug regime, I'm always interested in that! x

catherineyoung · 28 Jun 2008

Hi everyone and welcome to Lousia,

Had a couple of days of not thinking about IVF. Currently sitting with an evil hangover (due to my 29th birthday party last night!). Trying to muster up the enthusiasm to take the dogs out for a walk.

My hubby finally did get through to Alison, apparently the problem has been with my consultant at Good Hope Hospital (or NO Hope as we have nicknamed it due to the crap service we keep getting there). Alison said that she has written (twice) called and faxed the consultant's secretary to get a copy of all my notes and previous test and she still hasn't managed to get them. I think a trip down to the hospital to have an almightly strop is in order!

Didn't book Mexico but have booked a cottage in Cornwall- we thought we would try to have a 'safe' holiday as the past few holidays abroad have been disasters (April- problem with dog passport in France; Summer- hubby had heart problem in Spain; Dec- 2x dislocated shoulders whilst skiing).

Sent paperwork off to CARE and within 2 days have had email to arrange 1st appointment. Alison (at Guy's) is still chasing my hopsital for notes so we are going to run with both and see what comes up first.

Finally stopped bleeding and hormone back to normal from m/carriage this month so feeling more positive and determined now!

Glad there's a few of us on here now and would love to hear how you are all getting on so keep in touch! Good luck to us all XXXXX

Enjoy your hol Welsh Frank
Love and best wishes
Cathy
XXX

catherineyoung · 28 Jun 2008

Hi all

Thought I was lucky to have been sent home from work for a 'Snow Day' until my washing machine has exploded and completed soaked my kitchen and two dogs!!!!!

Arrrrgh!!!!!

PS- hope you are enjoying the snow
Cathy
XXX

Ros · 26 Dec 2008

Yep, the snow has been an exciting start to the week. I struggled into work on Monday but was allowed to go home at 1pm which was a treat, hardly anyone came into the office (I'm in London) there are so many people who just didn't try to come in!

I agree about the Cornwall holiday, that's what we have booked for July as want a 'safe' one then, plus my sister is due her first baby at the end of July (she didn't tell me until she was 12 weeks and she would have known at Christmas when I found out about my chromo problem, we are assuming that she doesn't have my translocation issues then as I would have miscarried in the first tri and she is 15 weeks). However we have been daring and booked a 10 day holiday in the Maldives at the beginning of March as there is no way they will be ready to start tx by then as my first PGD appointment isn't until 17th Feb (less than 2 weeks away now!). Rather excited about having a few days out to chill and do nothing.

Brilliant news about getting somewhere with Alison and also getting a Care appointment too, that is good news hun. I wonder which one will get there first for you! How annoying your hospital have been, I'd be having words with them if I were you. I'm loving your PMA at the moment Cathy Smile

You're right, we will get there!

Hope everyone else has been keeping warm this week x

catherineyoung · 28 Jun 2008

Hi Ros,

Oh the Maldives..... Cool

That sounds wonderful!!!!!! My friend went there for her honeymoon last year and the photos were out of this world. It must be really hard for you watching your sister's pregnancy progress- a kind of weird feeling I would imagine as you must be really pleased for her but also really envious. I have watched a number of my close (and not so close) friends have babies (even two some of them) and although I am so happy for them it still upsets me when I visit them.

Yes I am feeling positive at the moment (think we have to be) and I am commencing the Guy's Vs Care race! (Have a feeling the expensive one will win). Have first appointment at CARE on Thursday 19th Feb (just for chat and gathering information and then on the 2nd March with the consultant. I must say I have been incredibly impressed with CARE's efficiency so far. Hubby isn't too happy about having to produce a 'sample' there and then as in the past he has been able to do 'it' at home and take it in. However the first sample was a bit of a disaster as he did it hours and hours before (without telling me) and put it in the airing cupboard to keep it warm!!! And as expected the results came back dodgy. However his next one was fine!

Have parents' evening next week at school and have so much work to do so I better get back to it! Glad to hear about your amazing holiday- you deserve it! Good luck for 17th if I dont speak to you before.

Keep your fingers crossed for another snow day tomorrow!
Cathy
x

Ros · 26 Dec 2008

Hi Cathy, I am definitely hoping for more snow, my parents in the midlands have it - lucky things!

Glad you have dates from CARE, let's see who will win the race Smile

Re the sperm sample - my DH manages to do it at any hospital or clinic, I think that once they chill out it's not so bad, and it is good to get a freally frsh sample. When I went for my last egg collection the husband of the lady in the cublicle next to me had real trouble 'doing it' and they made him go out and walk around the block to relax, when he came back he managed it. phew! I'm sure your DH will be fine - better than dodgy old samples from the airing cupboard anyway!

Yes it is wierd knowing my sister is pregnant now. They have been trying for 18 months and were about to go for fertility tx. I have been trying to help her all along and giving advice and telling her about IVF so if she ever had to do that then it wouldn't be so scary. I am thrilled to be an aunty this summer and that her dreams have come true ... but still really hurts that she didn't tell me anything at all until 12 weeks, despite me telling her about chromosome issues and everything about my IVF and m/c's. She even came to my house on new years day and said nothing. She is 15 weeks tomorrow, I haven't seen her yet since she told me but will be doing so this weekend. I told my Mum I don't know how I will see her with a bump or a baby without crying. It is the wierdest thing ever. It's very hard to me to talk to her about it, and I guess she feels funny talking to me about it too.

Sorry for the waffle, yes I am excited about the Maldives Smile

Hope your parents evening goes ok. Let me know how the clinic race goes! I'll let you know what happens at my Guy's PGD consultation on the 17th.

x

catherineyoung · 28 Jun 2008

Hi Ros,

Another snow day-yeah! Have so much to do for parents evening but everything I need is at school! So for once had a pure skive day-hurrah! It must be so hard for you regarding your sister. From an outsider looking in she was probably really, really nervous about telling you straight away for a number of reasons: you having your chromosome news; m/c's; Christmas time being the hardest for people like you and me; not wanting to upset you; not tempting fate by telling people and also if it went wrong- having to share the news with everyone. I know we are always dubious about telling people (especially DH's mother) who seems to cry, get upset and talk about it even more than us. I'm sure you will be absolutely great with your sister and my previous experience is that once people have actutally had the baby it tends to be much easier for me.

Alison Lashwood (from Guy's) called me today to say that she has finally received all of my medical notes from up here at last. She said she has completed everything that she can and now it goes to someone else in her departement to finalise (3 weeks) then off to my PCT. She said they always give the PCT 3 months before they start chasing but the average time is 4 months so really we are talking 5 months before we begin at Guy's (and that is reliant on us getting funding-which my GP was very unsure about). So I am almost certain that CARE will win the race but we are going to continue with both as the way we see it if we do manage to get funding from our PCT and also begin to cycle with care then sods law will be that we have success with CARE (and pay for it) and then get granted funding from PCT but to be honest I wouldn't care about the money if we got our dream instead!

Good luck for the weekend and stay strong (and have a few vodkas cos we still can!) and even more luck for the 17th! I'll be thinking of you. Keep smiling and stay positive.

Cathy
XXX

Ros · 26 Dec 2008

Hi Cathy, that is good news that Alison is on the case. I still don't understand why it takes so long to get the funding sorted out though. Have you considered that if you did one PGD cycle at Care then you could use the funding to get another one free at Guy's ... that is, IF you needed a second cycle, hoepfully you won't Smile

!

Hope your parents evening work is going ok. I'm doing appraisals at work at the moment but seeing as I can't concentrate on anything these days it's proving quite difficult! x

louisa33 · 26 Jan 2009

HI Ros, Catherine
Getting a bit fed up of the snow here! Was pleased to see rain earlier but now it's turned into nasty slushy snow. Want some sunshine now!

As you're chatting about hols I was wondering if you knew much about when you can drink or not drink. I'm assuming that we'll be able to cycle in a few months.. but we are arranging a group holiday in July so were thinking of delaying the cycle until end July/August so can enjoy holidays (walking holidays too) without worrying. Do you know when it's best to cut out the alcholol altogether? Or is it just when you start the "down regging(?)" drugs?

Re: Care/Guys we're very influenced by the cost. I estimate it works out at least £6k/£7k including drugs.. though perhaps the second cycle would be cheaper as they'll have done the prep work. Not fair is it though!

catherineyoung · 28 Jun 2008

Hi Ros and Louisa,

You're thinking like me Ros, hopefully (knowing my luck) if we fund CARE it will work and we wont need Guy's funding but it is a back up plan so I think that is what we will do!

Louisa- I have no idea when you have to stop drinking (I'm assuming that it is just when you actutally start cycling). If I was you, I wouldn't put anything on hold as my hubby and I have cancelled 2 holidays because I got pregnant and then miscarried and wished I had had the holiday! Just book and take good travel insurance and then you can always cancel last minute and get your money back if you get any luck!

I'm starting to get fed up of snow too- kids at school are like wild beasts wanting to get outside with the headteacher insisting that they stay in- GREAT!

Parents evening tomorrow and Wednesday- then its almost half term-hurrah! I know Ros has an appointment at Guy's soon when is you next appointment Louisa?

I like to have things to look forward to. Good luck to you both and speak soon

Cathy
XX

WelshFrank · 07 Sep 2008

Hi ladies

Good to read all of your updates and glad that things are moving along bit by bit. You will get there in the end.

Well, just got back from the Maldives yesterday. It was a wonderful, chilled out holiday - just what we needed. When we got home we found out that we had been refunded everything we've already paid out to CARE so far for our PGD, as the NHS money has come through. Good news.

Good news number 2 was that we were emailed from Genesis Genetics in the US, to let us know that our PGD test has been completed! Yay!

Good news number 3 came when we phoned CARE to let them know that we are ready to start. As I am CD12 I expected them to say that we need to wait until the next cycle in March. However, it turned out that CARE can fit us in for this month. So we start downregging next Thursday 19th!!!!!! Shocked

We have to go for our injection lesson at CARE on 19th. Catherine - maybe I'll bump into you!!!

I feel so weird. Really excited but terrified too!

xxx

Ros · 26 Dec 2008

Hello Ladies, it's getting quite busy on here so that must be a good thing for us all!

Louisa, most people give up drinking once they start on the tx drugs. However, it is a good idea to slow down on the booze for a while before your cycle. I know I hardly drink anything these days as I want my body to be as healthy as possible before starting again. It really is up to you hun.

Cathy, hope you're ok and not working too hard.

WelshFrank, glad you had a lovely holiday. I'm off to the Maldives on 1st March! What island did you go to? Brilliant news about the refund and starting so soon - wow - how come your test is being set-up in the US? Do they not do it at Care? I'm confused ...
So excited you start DR soon, I guess 19th is day 21 for you, that's the normal day to start DR. Hope you enjoy your injecting lesson, let me know if you have any queries as I've done two cycles now (without the PGD bit but that doesn't make a difference to the drug taking). Good luck! x

catherineyoung · 28 Jun 2008

Hi All,

Got a really positive vibe about our board! At last things seem to be moving! I've just completed Parents' Evening day 2-hurrah! And I had no arsey parents for the first time ever-hurrah!

What time are you at Care on the 19th Welsh Frank? We are supposed to be there for 2pm. We have never been before so we are starting out early. I've never cycled before or known anyone who has so I'm not so up to date on the terms 'down regging' and CD12 but I guess that means you are starting soon. We have our first ever meeting to gather info and stuff from CARE- do you mind me asking how long it has taken from your first consultation until you get to actually start? We have been told that it will be at least 4 months before we hear anything from Guy's so we are looking into self-funding at CARE instead now.

I'm so jealous about the Maldives you lucky ladies (you deserve it though!)

I'm absolutely rubbish with needles so when I get to that stage and I will need lots of pushing I reckon however I'm so excited about actually starting the process that I guess I'll just get on with it.

Anyway great to hear good news rolling in now.

Speak soon and keep in touch
Good luck all
Cathy
XXX

catherineyoung · 28 Jun 2008

Just realised how many Hurrahs and exclamation marks I used- not a good example I am setting...

WelshFrank · 07 Sep 2008

Hi all

Well, I've had my drugs protocol though now, so I know what I'll be taking. It's 0.5ml Buserelin sub-cutaneously once a day from next Thursday to down-reg (Cathy, that just means shutting down your ovaries so that they're inactive ready for the clinic to take control over them in the cycle and 'CD12' means Cycle Day 12 of your menstrual cycle). Then I'll be on 300iu of Menopur every day, again in the form of an injection. Does this sound like a typical dosage, ladies in the know?

Ros - the reason why our PGD test was developed in the US is because this is the lab that CARE links with. Only the probe is developed there - the rest of the embryo testing and lab work is done at CARE itself.
We went to Kuredu Island by the way.

Cathy - Our 1st appointment at CARE was on 3rd November, and we will be starting treatment on 19th February, so that's about 15 weeks.
We'll be at CARE for a 3pm appointment on the 19th. It takes about 50 mins to get there from Tamworth.

I'm writing a blog all about my experiences with PGD, if anyone is interested. http://pgdhopes.blogspot.com/

Love to all. xx

catherineyoung · 28 Jun 2008

Hi Welsh Frank,

Just read your blog- what an amazing read! It is amazing as you have put into words everything that we too have felt in the past 2 years. I am so so pleased for you that things are getting moving. You must be soooo excited.

Thanks for filling me in on the technical terms. I think we are looking at self-funding at CARE now as the wait for Guy's is driving us nuts! We are still unsure whether we would qualify anyway as we've been told that no baby has ever been born with my translocation (so unlikey to ever be) and I have been pregnant 5 times in the last 18 months and everyone we see tells us to just keep trying but I just dont think I could face another BFP followed by disappointment again. Was it Gail that applied for your funding?

I wonder if we will bump into each other next week, would be lovely to put a face to the name. Good luck with everything and I will sincerely cross everything for a positive result for you and your hubby.

Thanks for filling me in on the techincal terms, I feel like a pro now with references to translocation but still a novice with IVF.

Love to all the ladies (and their men) on here.

Cathy
XXX

WelshFrank · 07 Sep 2008

Hi Cathy,

Thanks for reading the blog. It is actually really helping me to get some of the turmoil out of my system - therapeutic really.

Yes, it was Gayle who applied for our funding. Well, she did all the hard work, but the form actually had to be signed off by our GP. The GP was horribly unfriendly and unhelpful so Gayle kindly offered to do the form for him, and then liaised with him to get him to sign it off. That's the drawback about going private, the clinic won't do your funding form for you. If you're thinking about going to CARE you might want to speak with your GP now so that he or she is prepared to do the application for you.

Yes, I wonder if we will cross paths in the clinic next week? I will be the girl with long blonde hair and my H has dark spikey hair, in case you spot us!

catherineyoung · 28 Jun 2008

Hi

Sorry to rub it in but- HOORAY HALF TERM Very Happy

.

Now I'm confused! Just recieved two bottles from Guy's in the post to have two blood tests done for FISH analysis? Wasn't expecting that? Does that mean we are beginning to get things moving there? I have no idea. Think will still go to CARE to see what they say. Do you think it is wise to get GP to start the forms as well? I just dont know! I feel like which ever option I choose will be the wrong one!

Hopefully catch up with you at the clinic. I too have long(ish) blond hair but my H has an egg for a head (I'm being mean he is a little bald- but proud!)

Have a great weekend ladies.

Love Cathy (9 lie ins for me-hooray!)
XXX

WelshFrank · 07 Sep 2008

Hi Cathy

I guess that Guy's need to check your FSH levels (a hormone that is an indicator of your ovarian reserve) to see if you're within treatable parameters for IVF. Unless FISH means something else?? Is one test for you and one for your H? If so, maybe then this is the blood that they will use to create a PGD probe for you. But I would have thought that they would want either some money up front before they work on this test, or at least an assurance from your PCT that they will fund you. I'm confused now!! Did the bottles not come with a letter of explanation?

I think you're going to have to make a choice soon between clinics. Theoretically, you could pull out of Guy's if you have NHS funding, even after they have begun work on your PGD probe, but I guess it's not really ethical to have them begin work on it and then have that work wasted.

I think you really need to find out exactly what stage Guy's are at with your case before you make a decision. Also, have you thought about which clinic you feel most comfortable in? What about the travelling distance? Will you mind travelling to London during your IVF cycle (this could be up to 3/4 times a week at some points)?

All I can tell you is that with CARE, if you went for it from now, got the swabs done, you'd be looking at starting in about 4 months time. They let you make the payment yourself to get the ball rolling, and in the meantime you can apply for NHS funding. If you get the funding, CARE reimburse you the money you have paid to them.

Lots to think about, eh?

Have a nice weekend