About 15:30 this afternoon I had a call from Guy's... except I was at work, nowhere near my phone and when I returned 5 minutes later I had a missed call but no voicemail message. I immediately rang back but it was just a recorded message that said something along the lines of thanks for calling, you can't leave a message here and if we still need to speak to you we'll ring back. I tried to get hold of ALS, assuming they'd have rung him when I didn't answer, but he's been on a course all week so I figured he probably didn't have his phone.
Halfway through my walk home, whilst I was trying to find a different number for the embryology department at Guy's, ALS sent me a text saying he'd had a call about our embryos. Then nothing for a very long 12 minutes! Finally he rang me and confirmed that we have THREE embryos that are genetically suitable for transfer.
We had 5 biopsied and frozen so to still have 3 after the genetic results I am pretty ecstatic. Obviously it's still a long road and we're not even close to being at the end yet so I'm trying not to get my hopes up too much BUT I'm allowing myself to be happy about this.
Eeeeek!
Showing posts with label biopsy. Show all posts
Showing posts with label biopsy. Show all posts
Thursday, 22 September 2016
Monday, 19 September 2016
Outsider...
Everyone I've come across in IVF forums and groups has been incredibly supportive to me and I will be eternally grateful to this. This post is not meant in any way to detract from that, it's just something I've been thinking about.
I've not really fit in anywhere on my journey and it's been very hard to get the information I've been looking for about other people's experiences. I'm not able to conceive naturally because of my husband's genetics nor am I infertile. I feel somewhat of a fraud asking for help and advice on fertility forums because my fertility itself is fine. I'm going through IVF but for a very different reason to many women and I've never had the opportunity to try to conceive naturally (nor have I therefore experienced what most women going through IVF have suffered through to get to this stage). Because I don't have fertility issues my treatment has been quite different to those going through IVF after failed conception attempts, recurrent miscarriages and all manner of horrible, traumatic events.
My quest for people who can relate to my specific journey (and I theirs) led to me stumbling across a group on Facebook for women and couples going through IVF with PGD. Whilst PGD isn't completely specific to Huntington's disease or our situation and whilst it can apply to women who have had unexplained recurrent loss or difficulty conceiving, I have found a few people in my exact situation who I can relate to.
Of those who are testing (both fully and non-disclosure) for HD, almost all of the women I have spoken to have become pregnant following their first transfer. This has given me an amazing sense of hope - you hear so many IVF horror stories of women never actually having children, but realistically in my case that's unlikely as my fertility tests are all normal. However, I'm not sure how much I'm appreciating the sense of hope because I've been trying not to get my hopes up too much until we have a definitive pregnancy.
All I seem to have learned from this process is that I don't know what I want (in terms of support, being hopeful, being realistic), my hormones are completely all over the place and I'm definitely not alone in these feelings. All in all I feel like I'm handling the situation better than I expected and definitely better than ALS expected (he of little faith). We are now 9 days post biopsy and I've not lost my mind yet - fingers crossed we hear something soon!
I've not really fit in anywhere on my journey and it's been very hard to get the information I've been looking for about other people's experiences. I'm not able to conceive naturally because of my husband's genetics nor am I infertile. I feel somewhat of a fraud asking for help and advice on fertility forums because my fertility itself is fine. I'm going through IVF but for a very different reason to many women and I've never had the opportunity to try to conceive naturally (nor have I therefore experienced what most women going through IVF have suffered through to get to this stage). Because I don't have fertility issues my treatment has been quite different to those going through IVF after failed conception attempts, recurrent miscarriages and all manner of horrible, traumatic events.
My quest for people who can relate to my specific journey (and I theirs) led to me stumbling across a group on Facebook for women and couples going through IVF with PGD. Whilst PGD isn't completely specific to Huntington's disease or our situation and whilst it can apply to women who have had unexplained recurrent loss or difficulty conceiving, I have found a few people in my exact situation who I can relate to.
Of those who are testing (both fully and non-disclosure) for HD, almost all of the women I have spoken to have become pregnant following their first transfer. This has given me an amazing sense of hope - you hear so many IVF horror stories of women never actually having children, but realistically in my case that's unlikely as my fertility tests are all normal. However, I'm not sure how much I'm appreciating the sense of hope because I've been trying not to get my hopes up too much until we have a definitive pregnancy.
All I seem to have learned from this process is that I don't know what I want (in terms of support, being hopeful, being realistic), my hormones are completely all over the place and I'm definitely not alone in these feelings. All in all I feel like I'm handling the situation better than I expected and definitely better than ALS expected (he of little faith). We are now 9 days post biopsy and I've not lost my mind yet - fingers crossed we hear something soon!
Monday, 12 September 2016
Five little embryos!
The phone call I was waiting for came at around 11:30 this morning. None of the remaining 5 embryos were suitable for biopsy and freezing, so we're left with the 5 that we had yesterday. Dropping by half at this stage was pretty devastating but the clinic are very optimistic and keep telling me that it is a very good number so I'm trying to stay positive. At least we know those 5 are good for transfer so any we lose after this (when we get the genetic results) is our own choice to protect our future children.
There's nothing really happening now until we have the biopsy results in 2-3 weeks so I'm going to try and put it to the back of my mind and worry as little as possible. This therefore means that my blog will have slightly different feel for a couple of weeks. I'll be delving more into non-IVF matters (such as giving a bit more information about my condition) and generally posting a bit more about myself as a person rather than just an IVF patient. I'm going to try and cover various topics (IVF support networks, Ehlers-Danlos Syndrome and its many presentations, working with a "disability" etc.) and actually provide an insight into things rather than just a daily update on how my life is going.
For tonight, however, I'm going to be a little bit naughty and tuck into some Ben & Jerry's ice cream whilst I watch House!
There's nothing really happening now until we have the biopsy results in 2-3 weeks so I'm going to try and put it to the back of my mind and worry as little as possible. This therefore means that my blog will have slightly different feel for a couple of weeks. I'll be delving more into non-IVF matters (such as giving a bit more information about my condition) and generally posting a bit more about myself as a person rather than just an IVF patient. I'm going to try and cover various topics (IVF support networks, Ehlers-Danlos Syndrome and its many presentations, working with a "disability" etc.) and actually provide an insight into things rather than just a daily update on how my life is going.
For tonight, however, I'm going to be a little bit naughty and tuck into some Ben & Jerry's ice cream whilst I watch House!
Friday, 9 September 2016
Waiting
I've mentioned a few times that patience is incredibly important when going through the PGD process and honestly, I'm pretty surprised how well I'm doing at it.
It's now 4 days since egg collection (3 days since we found out we had 10 fertilised) and tomorrow the biopsies will be done. We'll then be informed on Sunday how many embryos are suitable for freezing and then it's another 2-3 week wait to find out how many we have to discount due to the genetics. I've not really been thinking about it at all and I find that odd - I normally dwell on things way too much, worry way too easily and generally stress about everything. It's odd to have gone from doing everything in my power to create healthy eggs - a good diet, giving up alcohol and caffeine, the daily injections, taking supplements, exercise - to now having absolutely no impact on what happens to them.
I think the reason I'm not being impatient and wishing the days away is because I'm not sure I want the results. Currently we have 10 embryos which provides us with a really good chance of me becoming pregnant. Realistically I know that we could easily lose a few that haven't grown enough and half (or more) because they have the chromosome we're trying to avoid. I'm aware that we could end up with none.
Currently things are looking good, we have hope and I'm coping well. I can't say that I'm feeling any particular emotion about the process, neither excitement nor concern. I'm almost numb to the whole thing at the moment, happy in my state of limbo where things are positive.
Maybe ALS is rubbing off on me. He's always very realistic and doesn't tend to think or worry about things that are beyond his control. He takes everything as it comes and deal with life with very little visible emotion. I'm normally a very emotional person; if I'm excited or nervous about something I'll talk about it non-stop, if I'm upset I'll comfortably let myself cry until I feel better and if I'm annoyed about something I won't hesitate to rant about it. This practical, realistic approach to everything is very new to me and very unexpected but I'm rolling with it and hopefully it'll make the whole process at easy to cope with as possible.
It's now 4 days since egg collection (3 days since we found out we had 10 fertilised) and tomorrow the biopsies will be done. We'll then be informed on Sunday how many embryos are suitable for freezing and then it's another 2-3 week wait to find out how many we have to discount due to the genetics. I've not really been thinking about it at all and I find that odd - I normally dwell on things way too much, worry way too easily and generally stress about everything. It's odd to have gone from doing everything in my power to create healthy eggs - a good diet, giving up alcohol and caffeine, the daily injections, taking supplements, exercise - to now having absolutely no impact on what happens to them.
I think the reason I'm not being impatient and wishing the days away is because I'm not sure I want the results. Currently we have 10 embryos which provides us with a really good chance of me becoming pregnant. Realistically I know that we could easily lose a few that haven't grown enough and half (or more) because they have the chromosome we're trying to avoid. I'm aware that we could end up with none.
Currently things are looking good, we have hope and I'm coping well. I can't say that I'm feeling any particular emotion about the process, neither excitement nor concern. I'm almost numb to the whole thing at the moment, happy in my state of limbo where things are positive.
Maybe ALS is rubbing off on me. He's always very realistic and doesn't tend to think or worry about things that are beyond his control. He takes everything as it comes and deal with life with very little visible emotion. I'm normally a very emotional person; if I'm excited or nervous about something I'll talk about it non-stop, if I'm upset I'll comfortably let myself cry until I feel better and if I'm annoyed about something I won't hesitate to rant about it. This practical, realistic approach to everything is very new to me and very unexpected but I'm rolling with it and hopefully it'll make the whole process at easy to cope with as possible.
Tuesday, 6 September 2016
The last few days - including egg collection.
What a busy few days! I'll try and sum it up as briefly as possible, without leaving out any of the important bits.
Sunday 4th September
We headed off to London about 18:30 on Sunday after our friend had arrived - she'd kindly kept herself on standby to come and take care of the cats at short notice once we got our date. She's house sat for us a couple of times and she's fabulous, it's usually tidier when we get back than it was when we left which removes any stress of having to come back to a load of housework.
Our train departed at around 20:00 and we got into St Pancras just before 22:30. My cousins had advised me to get an Uber and I can't explain how convenient this was. They'd sent me a voucher to get £10 off the first trip as a new customer so I downloaded the app, requested a pick up and within less than 2 minutes our car was there. 30 minutes later he dropped us off at my cousin's flat and the app charges it from your bank account so there's no cash to worry about - with the discount it came to £4.50 which, at £14.50 for the actual trip, is incredibly cheap for London. Even in Derby a 30 minute trip would cost well over £20.
We had a bit of a catch up with my cousins, whom we'd not seen since our wedding in February. They sorted us out with directions to the hospital for the morning and then we headed off to bed.
Monday 5th September
Egg retrieval day had finally arrived! I was surprisingly not too nervous when we left the flat at 07:00, but I was pretty damn hungry and thirsty (you have to fast from midnight the night before but I'd not actually eaten since around 9pm). I was quite uncomfortable at this point as my eggs were reaching their maximum but mostly just bloating rather than pain. Once again the transport in London exceeded expectations and after a short train journey we were at London Bridge Station, just around the corner from Guy's Hospital. As we'd been worried about being late we left really early and actually ended up in the waiting room at around 07:30. We had to wait until 08:00 for the reception to open, we let them know who we were and what our appointment was for and then headed back to the waiting room.
A nurse came and collected us at 08:20, took us to the large recovery room and sectioned us off behind a curtain. She checked all our details, gave me a wristband and provided me with a gown, hairnet and slippers to get into (a fetching outfit if I ever saw one). I was asked to empty my bladder and get changed whilst she went off to get everything ready. Shortly after I was changed the anaesthetist came in to have a chat with me about the sedation and again, checked my details. I have to say the anaesthetist didn't have the greatest bedside manner and I was probably more nervous after having spoken to her. Another 10 minutes passed, making it about 08:50 and the embryologists came in to check my details (again) and took me through to theatre.
Once I was there I was asked to lie down and shuffle my bum right to the bottom of the bed, whilst my legs were fastened in stirrups and the embryologist sat himself between my legs - to be honest there was no embarrassment; everyone was very professional and I was too nervous to care by this point. When I was all set up the anaesthetist's assistant came in, hooked me up to the blood pressure and heart monitors and busied herself looking for a vein to put the IV in. I have to say she was a lifesaver. She was very professional but friendly with it and put me a lot more at ease - or so I thought. The anaesthetist got the IV in my hand and said that they'd start cleaning me up for the procedure whilst I was gently sedated and then once they were ready to start she finish the sedation and I'd be asleep. She then stopped and told me that she couldn't do anything until I'd calmed down because my heart rate was over 140bpm!! Fortunately a few deep breaths later and I was fine to continue, I remember asking if it was normal for my whole arm to really hurt as the sedation went in which she said was perfectly fine and then I told them the ceiling tiles were moving...
The next thing I knew I was waking up, tucked up in bed just as I was being wheeled back into the recovery room. I got there just before ALS who'd been providing his specimen. I remember telling the nurse I was surprised how awake I felt so she left me lying down for a few minutes and went to get me some water and a biscuit. ALS told me it was about 09:20 at this point and he nipped out to Sainsbury's to fetch me some Lucozade and get himself a sandwich. The nurse returned with water and biscuits which went down pretty nicely and she gave me a heat pad to prevent/alleviate any abdominal discomfort. A few minutes later the embryologist came to let us know that from my 14 follicles we'd had 13 eggs - a really good number!
After that ALS returned and I shared the good news. Things went pretty quickly from there, my observations were checked a couple of times and my IV fluids were taken away as I was drinking anyway. They asked me to empty my bladder which I did with no problems and once I was dressed they removed the cannula and off we went. They'd said I'd be in recovery for about 2 hours but I bounced back pretty quickly and we headed off the hospital premises at about 10:20, just an hour after I'd woken up. In hindsight I'm glad we did because I started to experience quite a lot more pain after the painkillers had worn off.
I slept on and off for most of the afternoon but did manage to make it out in the evening, dosed up on paracetamol, for a meal with ALS and my cousins. By the time we got back to the flat I was in quite a lot of pain; a mixture of period type cramps and feeling like I'd been repeatedly punched in the ovaries. Urinating was horribly painful and I seemed to be going every 20 minutes or so (they tell you to drink 3 litres of water every day for the first few days after collection). I do drink a lot normally anyway so getting the water down was fine but with my ovaries still being swollen there wasn't much room for liquid to sit in my bladder.
Tuesday 6th September
This brings us to today! I felt really rough this morning and urinating was again horribly painful but we had to get up and get our train home. Having only had about 3 hours sleep I nodded on and off during the train journey and when we got home I headed straight to bed for a good solid 3 hour nap. When I woke up I did feel considerably better and the pain was only there if I stretched or bent up and down. I had some food and then we went for a little walk around our local park - which surprisingly took it out of me quite a lot and after about 45 minutes I was ready to head home. I've just had a nice bath and I've got a hot water bottle on my abdomen at the moment.
We had a phone call this morning to confirm that 10 of our 13 eggs had fertilised, which I'm happy with. They'll do the biopsies on Saturday and on Sunday we'll know how many have been frozen. 2-3 weeks from then we'll find out which ones have ALS' mum's chromosome and can't be used. In the meantime I just have to wait for my period to start and go back on my contraceptive pills when it does.
I'm a little frustrated to have just been informed that the risk of a twisted ovary can continue for up to 4 weeks post egg collection as by the end of this week I was hoping to get back into training ready for a big competition in October. I've mostly resigned myself to the fact that this won't be possible and I'll just have to go in and do whatever I can but it would have been better if I'd been told before we started the process that I'd have to keep the exercise to a gentle level after egg collection.
The best advice I've had is to just listen to my body so that's what I intend to do!
I'm sure I've left various things out so please don't hesitate to leave a comment if you have any questions that I might be able to answer!
Sunday 4th September
We headed off to London about 18:30 on Sunday after our friend had arrived - she'd kindly kept herself on standby to come and take care of the cats at short notice once we got our date. She's house sat for us a couple of times and she's fabulous, it's usually tidier when we get back than it was when we left which removes any stress of having to come back to a load of housework.
Our train departed at around 20:00 and we got into St Pancras just before 22:30. My cousins had advised me to get an Uber and I can't explain how convenient this was. They'd sent me a voucher to get £10 off the first trip as a new customer so I downloaded the app, requested a pick up and within less than 2 minutes our car was there. 30 minutes later he dropped us off at my cousin's flat and the app charges it from your bank account so there's no cash to worry about - with the discount it came to £4.50 which, at £14.50 for the actual trip, is incredibly cheap for London. Even in Derby a 30 minute trip would cost well over £20.
We had a bit of a catch up with my cousins, whom we'd not seen since our wedding in February. They sorted us out with directions to the hospital for the morning and then we headed off to bed.
Monday 5th September
Egg retrieval day had finally arrived! I was surprisingly not too nervous when we left the flat at 07:00, but I was pretty damn hungry and thirsty (you have to fast from midnight the night before but I'd not actually eaten since around 9pm). I was quite uncomfortable at this point as my eggs were reaching their maximum but mostly just bloating rather than pain. Once again the transport in London exceeded expectations and after a short train journey we were at London Bridge Station, just around the corner from Guy's Hospital. As we'd been worried about being late we left really early and actually ended up in the waiting room at around 07:30. We had to wait until 08:00 for the reception to open, we let them know who we were and what our appointment was for and then headed back to the waiting room.
A nurse came and collected us at 08:20, took us to the large recovery room and sectioned us off behind a curtain. She checked all our details, gave me a wristband and provided me with a gown, hairnet and slippers to get into (a fetching outfit if I ever saw one). I was asked to empty my bladder and get changed whilst she went off to get everything ready. Shortly after I was changed the anaesthetist came in to have a chat with me about the sedation and again, checked my details. I have to say the anaesthetist didn't have the greatest bedside manner and I was probably more nervous after having spoken to her. Another 10 minutes passed, making it about 08:50 and the embryologists came in to check my details (again) and took me through to theatre.
Once I was there I was asked to lie down and shuffle my bum right to the bottom of the bed, whilst my legs were fastened in stirrups and the embryologist sat himself between my legs - to be honest there was no embarrassment; everyone was very professional and I was too nervous to care by this point. When I was all set up the anaesthetist's assistant came in, hooked me up to the blood pressure and heart monitors and busied herself looking for a vein to put the IV in. I have to say she was a lifesaver. She was very professional but friendly with it and put me a lot more at ease - or so I thought. The anaesthetist got the IV in my hand and said that they'd start cleaning me up for the procedure whilst I was gently sedated and then once they were ready to start she finish the sedation and I'd be asleep. She then stopped and told me that she couldn't do anything until I'd calmed down because my heart rate was over 140bpm!! Fortunately a few deep breaths later and I was fine to continue, I remember asking if it was normal for my whole arm to really hurt as the sedation went in which she said was perfectly fine and then I told them the ceiling tiles were moving...
The next thing I knew I was waking up, tucked up in bed just as I was being wheeled back into the recovery room. I got there just before ALS who'd been providing his specimen. I remember telling the nurse I was surprised how awake I felt so she left me lying down for a few minutes and went to get me some water and a biscuit. ALS told me it was about 09:20 at this point and he nipped out to Sainsbury's to fetch me some Lucozade and get himself a sandwich. The nurse returned with water and biscuits which went down pretty nicely and she gave me a heat pad to prevent/alleviate any abdominal discomfort. A few minutes later the embryologist came to let us know that from my 14 follicles we'd had 13 eggs - a really good number!
After that ALS returned and I shared the good news. Things went pretty quickly from there, my observations were checked a couple of times and my IV fluids were taken away as I was drinking anyway. They asked me to empty my bladder which I did with no problems and once I was dressed they removed the cannula and off we went. They'd said I'd be in recovery for about 2 hours but I bounced back pretty quickly and we headed off the hospital premises at about 10:20, just an hour after I'd woken up. In hindsight I'm glad we did because I started to experience quite a lot more pain after the painkillers had worn off.
I slept on and off for most of the afternoon but did manage to make it out in the evening, dosed up on paracetamol, for a meal with ALS and my cousins. By the time we got back to the flat I was in quite a lot of pain; a mixture of period type cramps and feeling like I'd been repeatedly punched in the ovaries. Urinating was horribly painful and I seemed to be going every 20 minutes or so (they tell you to drink 3 litres of water every day for the first few days after collection). I do drink a lot normally anyway so getting the water down was fine but with my ovaries still being swollen there wasn't much room for liquid to sit in my bladder.
Tuesday 6th September
This brings us to today! I felt really rough this morning and urinating was again horribly painful but we had to get up and get our train home. Having only had about 3 hours sleep I nodded on and off during the train journey and when we got home I headed straight to bed for a good solid 3 hour nap. When I woke up I did feel considerably better and the pain was only there if I stretched or bent up and down. I had some food and then we went for a little walk around our local park - which surprisingly took it out of me quite a lot and after about 45 minutes I was ready to head home. I've just had a nice bath and I've got a hot water bottle on my abdomen at the moment.
We had a phone call this morning to confirm that 10 of our 13 eggs had fertilised, which I'm happy with. They'll do the biopsies on Saturday and on Sunday we'll know how many have been frozen. 2-3 weeks from then we'll find out which ones have ALS' mum's chromosome and can't be used. In the meantime I just have to wait for my period to start and go back on my contraceptive pills when it does.
I'm a little frustrated to have just been informed that the risk of a twisted ovary can continue for up to 4 weeks post egg collection as by the end of this week I was hoping to get back into training ready for a big competition in October. I've mostly resigned myself to the fact that this won't be possible and I'll just have to go in and do whatever I can but it would have been better if I'd been told before we started the process that I'd have to keep the exercise to a gentle level after egg collection.
The best advice I've had is to just listen to my body so that's what I intend to do!
I'm sure I've left various things out so please don't hesitate to leave a comment if you have any questions that I might be able to answer!
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