Hello,
I am a 27F and my husband 29M carries the gene for hypertrophic cardio myopathy. His siblings suffer from the condition however He is a carrier only at this point.
We are in the process of starting the PDGT and I was wondering if anyone has done this in St Guys and Thomas in London and what your experiences were.
Im very nervous and like to have lots of information to help stave as much anxiety as possible.
thank you x
Hi, I did PGDT testing for a cancer gene at CRGH in London through the NHS. Happy to answer any questions if it helps.
thank you so much… how long do they give you to have the embryos transferred.
We live in the north and I work for the NHS so the policy around it is a bit rubbish to be fair. Just wondering how much of a fight it’s going to be to be able to get time off for travelling there etc x
I never got that far unfortunately because I never had any make it to blastocyst. For time off, depending on travel time, you would only need a day or two for egg collection and a day or two for transfer. At the time, we were told it would take around 3 months after collection to get the test results back.I have a friend who was being pressured to have another transfer (after a couple of unsuccessful transfers, she needed some time out). She went to her GP and got a letter saying it was causing her stress. She was then able to delay it.
that’s a bit worrying. We were told that we can pause at any point if we want to and that they shouldn’t be pressuring us.
That’s something to consider for definite as you never know how you’re going to feel at each stage x
I should add, between getting test results back and transfer, it will probably be at least two months. We did donor eggs in Czech and the preparation for that is the same/similar as preparing for a frozen transfer which is what you will be doing.
I’m currently undergoing IVF PGD through a satellite unit in Exeter. I am under Guys for pre diagnostic genetic testing for a gene my husband carries. More than happy to answer any questions if you have them. I’ve always been really impressed with Guys and hopefully will finally be able to have a FET in June xx
hi!
Thank you. I’m nervous I think for the whole London experience because we live in the north. No one has explained anything about waiting times or how much notice you will get for transfer if you have any embryos. So I’m just a little in the dark x
Hi. Sorry to hear this. Just going to have to speak to consultants secretary and get an answer that way, if she emails him/Zheng’s. Diane
I was super nervous about London too, I live in Devon so found it really daunting. However when I went up for egg collection I found them to be really kind and felt well looked after. As far as communication with my satellite unit I’ve found that being proactive works. I made sure that after a week I rang up to prompt them to find out for me. I’m doing a frozen cycle so we are given a week that we might be implanted and the month before we spend on drugs, so we tend to have a fair bit of warning before implant, I’m not too sure about a fresh cycle. It’s tiring and hard but keep going! Xx
ours will also be frozen…
Weve been told the testing takes about three months so they’ll just be chilling at Guys with all the other hopeful babies haha x
Hiya,
I had my first round with Guys via their satellite clinic in Exeter, but have since switched to Oxford.
I only ever visited Guys 3 times, once for egg collection and twice for transfers and I had good care when I was in the building. However their communication with patients isn’t very good at all - the satellite clinic had to chase Guys a lot to get a response from them about when I could be booked in for procedures etc and it was quite frustrating.
There is a Facebook group with patients who are going through PGD, search Guys PGD and you should find it. Honestly I highly recommend joining the group as I’ve made friends on there with people who are going through the same journey, it’s definitely been helpful to have such a supportive network to talk to.
Wishing you the best of luck on the start of your PGD journey. I won’t lie it may probably be one of the hardest things to do, make sure you take care of yourself throughout it all both physically and mentally as you’ll need your strength to power through it, especially the waiting for results of embryos and the two week wait of transfers x
any information at all regarding medications, timings of different procedures would be really helpful.
Do you have to rest there before you go home , we are so clueless and I feel like I’m free falling at the minute haha x
They will discuss their protocols and medication that they use. Depending if you’re on the pill or not and if you have regular periods they will decide if you will go on short or long protocol. Most of the egg collection medications are injections such as Menopur, Buserelin and Gonal-F (they may have different branding names) and you may be doing them for 14-30 days depending on protocol. For transfer, you’ll have some injections again but most of the meds at that point are tablets, patches and pessaries, such as Cyclogest and Progynova etc,
For egg collection you’ll rest after the procedure for a couple of hours as you are put under with anaesthetic for it. You could either go straight home after or if you’re not feeling great to travel you could book a hotel nearby to stay. You may feel uncomfortable walking on the day of EC as your follicles will be enlarged but that will wear off after you stop taking the meds for it.
For transfer the procedure takes about 15-20 mins and you’re not medicated so you’re allowed to go home straight after. The only uncomfortable thing about transfer is that you’ll need a comfortably full bladder for the ultrasound to see your womb in the best way.
Hope this helps x
Hi,My partner has a dannons disease which has cardio manophyth as one of the main problems so we have done two rounds of PGD at Guys Hospital. As it is a genetic condition it carries from a male to a female so we had to have the embryos tested to find the boys. My experiences at Guys have mostly been bad. Had to made several complaints but my dealings with them were from 2015 to 2020 they may have improved since then. I am happy to answer any questions you may have, PGD has is not easy. It has taken us along while to get to where we are now. The best option for us now is sperm donor route as PGD won't now work for us anymore. About to start stimulation next month which has been a tough decision for us both.
Happy to give you the ups and downs of PDG as we were similar ages when I started my first round. Xx
hi!
If you could that would be fantastic. Im literally clueless nothing has really been explained. Just that we will have to travel to guys and we live in the north so it’s all a bit unknown xx
Hi again,Guys communication is awful but the consultants are lovely. If you can speak to Dr Grace she was amazing and helped me alot with our long journey. Our process was long because we had to get a licence for PDG for my partners condition so this took 8 months. My first round went well but I only manager to get pregnant from my second embryo tranfers but I did have a missed miscarriage at just over 7 weeks. The nurses and doctors when I went for my scan and was told there was no heart beat didn't deal with me very well at all. Being heart broken and told they can give you medication to start the miscarriage or to have it sugically removed. I was treater as a number and the care wasn't there for us. I then had to travel home on a train knowing I was going to loose my baby boy. My second round in 2019 resulted in no suitable embryos after testing so was told donor sperm is our best option. This has been hard for both myself and my partner. The protocol is normally the pill for a month then stimulate for 10 to 14 days in-between that you have scans and then you have your eggs collected. Your husband will need to do his sample and then depending on his sperm count they may do ICSI which we did have they then wait for the embryos to grow. The embryos have to get to day 5 blastocyst for them to then take cells from the embryo for testing. They then freeze all embryos and you have the longest wait of your life normal 6 to 8 weeks. Should you be lucky you will have some suitable for FET. Just as an example for me I was your age on my first cycle. I had 9 eggs collected all fertilised, 7 made it to day 5 then after testing I was left with 4 boys suitable for transferring. First one didn't take this broke me as they made me believe it would work. I was told by one consultant "not if but when" for me as their is nothing wrong with me but it still didn't work. My second FET they had to defrost two as first one died second one made it and I did get pregnant but lost it. I then had my last FET and it didn't take. For FET you take alot of medication before my first transfer was awful as they pulled my cervix down without telling me and that was very painful. Pretty shit time but my best peice of advice would be to keep going, we had long gaps and maybe if we hadn't my second cycle wouldn't have ended so badly. Obviously look after yourself. The chances of PDG working is low so don't blame yourself we are all playing with science here and it's all luck! I hope your experience is better than mine I have all my fingers crossed for you. I am sorry if my message is brutal but I wish someone had been more honest with me at the start. I have made two great friends via this forum who were doing PDG at Guys they made it all worth it. They are now due to come to our wedding later this year where I hope to be pregnant with after doing IVF with donor next month. Happy to be a support to you message directly if you would like to Xx
Hi HCMpdgtFamily. Just wanted to wish you well with this, and a perfect xxqcondition to test your embryos for. A long time ago, but I knew of two boys from one family who sadly died from the condition. Hope you get replies from others who have been through the testing. Diane
thank you so much x
Hi
Firstly I'm sorry for having to go through HCM plus added stress of PGD.
I carry the HCM mutation and was referred to Guy's.
I'm going to be honest with you here and so apologies if I scare/upset you.
There are couple of points I would like to share.
1. There is nothing called carrier in the case of HCM. This is an autosomal dominant condition which means even if there is one copy of the gene the individual will have HCM. The severity of HCM can vary from person to person.
2. PGD is doable but tricky and there are various factors such as
a) AMH for yourself
b) would there be enough eggs for collection
c) how many embryos you end up with
d) have the clinic designed the test for PGD. It may well be that they need to do it from scratch which means they will need a good amount of embryos to first develop the test and then to test.
With HCM unfortunately there is a 50% chance that it is passed on because of the inheritance pattern.
e) It may well be all the embryos will have HCM in which case you will not be allowed to transfer and you will tho through another egg collection round.
In terms of timelines it depends on if you are going through NHS or privately. For Guys I was told NHS means waiting time for end to end process could well be over a year. Privately could be upto 6-8months. Guys have been good and are responsive even by email. So once you have your first consultation they would happily answer questions via email.
One option I was given was to try naturally and if things go OK then do a CVS to test for HCM at 12 weeks and decide to continue/terminate.
Given I had low AMH it wasn't worth all the wait and faff and was suggested to go through donor routes.
also having seen the heart specialist at leeds and having lots of testing every two years for the last 8, my husband has no signs of HCM at all so hopefully it’s stays this way. Which we have been told is a possibility. His mum is also in her 50’s and has no signs of the gene
The word carrier was given to us by them 🤷🏼♀️
hello, yes we have already been within the system for around 2 years at this point.
They know the gene sequence and are aware of what they need to look for. So when we have the testing it should take about three months to get a result.
I am nervous that they will find no embryos that are suitable. However, this was my preferred option over CVS and then termination should they be effected x
Agreed with you I couldn't of tried naturally then have a termination
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