It's all over. I started bleeding Friday afternoon, went home from work and did a test. Negative.
We are heartbroken.
Saturday, 28 March 2009
Thursday, 26 March 2009
6 days past transfer
Not much to say about Wednesday 25th except that I had a tiny, tiny bit of brown spotting on one occasion that I visited the loo. Almost so small an amount that I could have missed it. Of course, I have dangerously latched onto this sign as a sign of implantation, where sometimes, you can get a tiny bleed.
Please please don't let me get my hopes up if they are going to be dashed.
Come on Grub, dig in there. Get comfy. You will have a mummy who will read you stories, bake you cakes, throw you great birthday parties, and a daddy who will play football with you, make you laugh and teach you all about music. And both of us will love you forever. Please be real for us.
Please please don't let me get my hopes up if they are going to be dashed.
Come on Grub, dig in there. Get comfy. You will have a mummy who will read you stories, bake you cakes, throw you great birthday parties, and a daddy who will play football with you, make you laugh and teach you all about music. And both of us will love you forever. Please be real for us.
5 days past transfer
Tuesday 24th March was a strange day. I went back to work and that was ok, but in the afternoon I started to experience some very odd pains in my womb. They felt like someone was stabbing me with a knitting needle but from inside. I had probably about 6 episodes of this throughout the afternoon. I have never before felt anything like it - unlike period pain or IBS pain, it was much more localised, fleeting and sharp. I also felt really hot and flushed all day and my skin actually felt hot to the touch.
It's hard to dare to begin to think that this could be Grub implanting. Of course, the thought crosses my mind constantly, but you get the fear that you might jinx the whole thing even by entertaining the very possibility. This is the kind of internal conversation I am now having, constantly:
It's hard to dare to begin to think that this could be Grub implanting. Of course, the thought crosses my mind constantly, but you get the fear that you might jinx the whole thing even by entertaining the very possibility. This is the kind of internal conversation I am now having, constantly:
'What's that twinge? Is that Grub implanting?'
' No, maybe it was just a bit of wind, or it could be some side effects from the progesterone pessaries.'
'Yes, you're probably right'
'You can't be pregnant - you're not going to be that lucky and Grub was not even a blastocyst yet'
'How many more days before I can test?'
'At least another week'
'I can't take this any more'
'So test then'
'I'm too scared, I don't want to lose the fantasy of maybe being pregnant if it's negative'.
'What's that twinge?'
I am going slowly mad.
Days immediately following transfer
I felt very strange once Grub was on board. Like I was carrying something so very precious that it scared me. I took it easy on the sofa for 36 hours or so and then began pottering.
2 days after transfer (referred to hereafter as 2dp5dt which means 2 days past a 5 day transfer) I went out for lunch with my mum and sister. All afternoon I felt some pain in my left ovary (the one with the cyst) and a generally heavy and full feeling in my womb. I tried not to read too much into it.
3dp5dt was Mothering Sunday. Hmmmm. I had a rotten day. With everything going on I had forgotten to get my mum a present so H and I went to Marks and Spencers to get her something. In the shop I had a bit of a breakdown. I couldn't stop the tears. We had to grab a simple bunch of flowers and come home. I felt so depressed I could hardly lift my head up. I was utterly convinced it hadn't worked.
4dp5dt was an ok day. I pottered at home and made some tiaras. I felt more cheerful on the whole. I took H to the local hospital to have his wrist looked at again.
2 days after transfer (referred to hereafter as 2dp5dt which means 2 days past a 5 day transfer) I went out for lunch with my mum and sister. All afternoon I felt some pain in my left ovary (the one with the cyst) and a generally heavy and full feeling in my womb. I tried not to read too much into it.
3dp5dt was Mothering Sunday. Hmmmm. I had a rotten day. With everything going on I had forgotten to get my mum a present so H and I went to Marks and Spencers to get her something. In the shop I had a bit of a breakdown. I couldn't stop the tears. We had to grab a simple bunch of flowers and come home. I felt so depressed I could hardly lift my head up. I was utterly convinced it hadn't worked.
4dp5dt was an ok day. I pottered at home and made some tiaras. I felt more cheerful on the whole. I took H to the local hospital to have his wrist looked at again.
Transfer day - Grub made it!
We got the great news on the morning of Thursday 19th that our little Grub had made it through another night, and could be transferred back to his mummy today! What a huge relief.
Grub had not developed quite as quickly as they might have hoped: he was still classed as a morula, a picture of which can be seen above. A morula is a multi-celled embryo, the stage an embryo reaches before becoming a blastocyst. A blastocyst is an embryo whose cells have differentiated into two distinct types: those that will become the placenta, and those that will become the foetus itself. Usually, embryos are blastocysts by day 5 or 6, and when they reach this stage, they are about ready to attach themselves to the womb lining.
It was a bit worrying to hear this. Was Grub going to carry on developing? You can see from the post title that he did!
Embryo transfer was scheduled for 1.30. I had been instructed to be there at 1 with a full bladder. It's actually really hard to try to synchronise your bladder with a set time! I started drinking water before the 1 hour journey and by the time I got to the clinic I was full, but not unmanageably so. However, when at 1.20 they still hadn't come for me, my bladder was beginning to protest! I pleaded to go to 'let a bit out'!. Have you ever tried just letting a bit out when your bladder is screaming for release?! It's hard, let me tell you! The clinic were running late and I had to repeat this strange toilet trip three times!
H and I got taken into the theatre prep area and got gowned up. This time he was allowed to come in with me. All the nurses came in to see how his cheek was looking now and marvelling at the balloon sticking out from behind his ear. Freak show! I was a little nervous.
When we got into the operating theatre there was a nice atmosphere and music on. They put a picture of Grub up in the big screen and we got to see our potential baby for the first time. It was pretty amazing. To think that this ball of life had come from a bit of me and bit of H was just awe-inspiring. The embryologist pointed out that Grub had developed a bit more from when she had examined him in the morning, and that he was beginning to show signs of turning into a blastocyst. This was very reassuring news.
The actual transfer itself was not very pleasant but ok really. My legs were put in stirrups, a sheet with a hole was put over my bits, my cervix was clamped and cleaned, and then a long catheter was passed through my cervix, while a nurse pressed on my bladder with an ultrasound sensor so the catheter could be seen passing into the womb. I could see the screen - very odd!
Then Grub was loaded up into the catheter and the consultant carefully placed him in the best bit of my womb. All done. I have from then on been what is officially known as PUPO . . .
Grub had not developed quite as quickly as they might have hoped: he was still classed as a morula, a picture of which can be seen above. A morula is a multi-celled embryo, the stage an embryo reaches before becoming a blastocyst. A blastocyst is an embryo whose cells have differentiated into two distinct types: those that will become the placenta, and those that will become the foetus itself. Usually, embryos are blastocysts by day 5 or 6, and when they reach this stage, they are about ready to attach themselves to the womb lining.
It was a bit worrying to hear this. Was Grub going to carry on developing? You can see from the post title that he did!
Embryo transfer was scheduled for 1.30. I had been instructed to be there at 1 with a full bladder. It's actually really hard to try to synchronise your bladder with a set time! I started drinking water before the 1 hour journey and by the time I got to the clinic I was full, but not unmanageably so. However, when at 1.20 they still hadn't come for me, my bladder was beginning to protest! I pleaded to go to 'let a bit out'!. Have you ever tried just letting a bit out when your bladder is screaming for release?! It's hard, let me tell you! The clinic were running late and I had to repeat this strange toilet trip three times!
H and I got taken into the theatre prep area and got gowned up. This time he was allowed to come in with me. All the nurses came in to see how his cheek was looking now and marvelling at the balloon sticking out from behind his ear. Freak show! I was a little nervous.
When we got into the operating theatre there was a nice atmosphere and music on. They put a picture of Grub up in the big screen and we got to see our potential baby for the first time. It was pretty amazing. To think that this ball of life had come from a bit of me and bit of H was just awe-inspiring. The embryologist pointed out that Grub had developed a bit more from when she had examined him in the morning, and that he was beginning to show signs of turning into a blastocyst. This was very reassuring news.
The actual transfer itself was not very pleasant but ok really. My legs were put in stirrups, a sheet with a hole was put over my bits, my cervix was clamped and cleaned, and then a long catheter was passed through my cervix, while a nurse pressed on my bladder with an ultrasound sensor so the catheter could be seen passing into the womb. I could see the screen - very odd!
Then Grub was loaded up into the catheter and the consultant carefully placed him in the best bit of my womb. All done. I have from then on been what is officially known as PUPO . . .
Pregnant Until Proven Otherwise!
PGD results day (backtrack)
Ok - I'm sorry. I have some catching up to do!
The past week has been incredibly difficult to deal with and I developed the kind of mind-set where you just want to crawl into your own shell and not have any contact with the outside world. But I'll back track over what happened each day, mainly because I cannot face doing it all in one post.
So, back to Wednesday 18th March - the day we got the results of the PGD test on our embryos. It was a morning of hell. We had been told to expect the phone call from embryology at 10am, but we were both up from around 7am with nerves. We sat in bed talking and trying to distract our minds until the phone call came, sick with worry for 6 little clusters of cells that represented our future.
10am came and went. The phone remained silent. 10.30am came and went. Nothing. I was literally pressing my nails into my palms at this point with frustration. We couldn't even speak to each other at this point. It was agony. At 10.40am I could take no more and phoned the clinic, who apologised for the late call and said we'd be called very soon. More tense waiting. Then at 10.55am the phone rang.
Not brilliant news. Of our 6 embryos, all had survived the biopsy which was great, but there was only one which was definitely free of CF and ok to be used. There was one that was definitely affected, and then another two were giving weird results (apparently 3 copies of the gene!) and another two which seemed not to be developing very well.
So we were left with just one little embryo. I had named the six, Hugh, Pugh, Barney McGrew, Cuthbert, Dibble and Grub, after the six fireman in an old childhood TV Show 'Trumpton'. Now we just had to pin all of our hopes on Grub.
We were told to wait for another phone call the next day to let us know whether they could try to test the two with the strange results again. They would tell us the next day whether Grub had made it through the night and could be transferred back to me, or not.
The past week has been incredibly difficult to deal with and I developed the kind of mind-set where you just want to crawl into your own shell and not have any contact with the outside world. But I'll back track over what happened each day, mainly because I cannot face doing it all in one post.
So, back to Wednesday 18th March - the day we got the results of the PGD test on our embryos. It was a morning of hell. We had been told to expect the phone call from embryology at 10am, but we were both up from around 7am with nerves. We sat in bed talking and trying to distract our minds until the phone call came, sick with worry for 6 little clusters of cells that represented our future.
10am came and went. The phone remained silent. 10.30am came and went. Nothing. I was literally pressing my nails into my palms at this point with frustration. We couldn't even speak to each other at this point. It was agony. At 10.40am I could take no more and phoned the clinic, who apologised for the late call and said we'd be called very soon. More tense waiting. Then at 10.55am the phone rang.
Not brilliant news. Of our 6 embryos, all had survived the biopsy which was great, but there was only one which was definitely free of CF and ok to be used. There was one that was definitely affected, and then another two were giving weird results (apparently 3 copies of the gene!) and another two which seemed not to be developing very well.
So we were left with just one little embryo. I had named the six, Hugh, Pugh, Barney McGrew, Cuthbert, Dibble and Grub, after the six fireman in an old childhood TV Show 'Trumpton'. Now we just had to pin all of our hopes on Grub.
We were told to wait for another phone call the next day to let us know whether they could try to test the two with the strange results again. They would tell us the next day whether Grub had made it through the night and could be transferred back to me, or not.
Tuesday, 17 March 2009
Day 3 embryos - PGD day
So today was the day that our embryos underwent the pre-implantation genetic diagnosis. H also had his operation on his cheekbone, so it was a stressful day all round.
H's dad took him to hospital and waited there all day with him as we had decided that it wasn't the best place for me to be while I'm trying to recover and relax before the embryo transfer. I felt really guilty though.
I've waited by the phone all day for news of my H and news of my embryos. The operation went ok, but H now has an internal 'balloon' holding up his smashed cheekbone, which hopefully will do the trick. H is home now and groggy from the painkillers and the ordeal. Poor, poor man. I love him dearly.
I heard nothing from the clinic all day and then at 4pm I could distract myself no longer and called them. Unbelieveably, more good news. All six embryos had continued to divide and grow and were now 5-7 cells each. All six of them had been biopsied. This means that the embryologist has taken one cell from each of them (see the picture on the right) to test for cystic fibrosis. All of the embryos survived this procedure, and the embryologist said that that was very encouraging. She said that they were all now classed as grade 2, which she said is absolutely fine.
We now have to wait for the next phone call tomorrow which will tell us how many of the embryos are affected with cystic fibrosis. Statistically it will be 1 in 4. Please let our embryos continue to grow strongly and let there be enough non-affected ones to transfer back to me.
Day 2 embryos
On Monday morning we had a call from embryology again to let us know how our embryos were looking today. We expected that some of them would have died by this stage. But we had the fantastic fantastic news that ALL of the 6 embryos had survived and divided.
We were told that we had four 4-cell embryos and two 2-cell embryos and that 4 of the embryos were grade 2 quality and the other 2 were grade 1 quality, with 1 being the top grade.
Again, this seemed too good to be true. Every vibe we have is directed at these six little clusters of cells.
We were told to expect another phone call on Tuesday with a progress report and the news on how the PGD test had gone.
'How do you like your eggs?' 'Fertilised please'
On Sunday morning we got a call from embryology. Out of the 7 eggs collected, all of them were mature and 6 of them had fertilised!
We could not believe our luck - that was fantastic news and just what we needed after the trauma of the past couple of days.
The picture above is what they would have looked like at this stage. You can see the two nuclei at the centre of the cell - one of those would contain my DNA and the other H's. For the first time, we had created something that was part me, part him. It was an amazing feeling and incredibly emotional.
We were told that we would be called the next day when they would have expected any viable embryos to have divided into 2-4 cells. Cue another 24 hours of nail-biting and wishing hard.
Humpty Dumpty and egg collection
I haven't done a post for a good few days because it has really been a stressful few days and I haven't felt like blogging. But I need to post now before there is any more to say as I am getting behind with all the news.
On Friday 13th, the day before egg collection, my H had a nasty accident. He fell about 8 feet from a roof and broke his arm, smashed his cheekbone and badly bruised his ribs. I got a call at work about 3.30pm and rushed home. We spent the next 6 hours in different hospitals and didn't get home till 10pm. We were so worried that the IVF cycle would be cancelled as H may have been admitted to a ward, but thankfully, he was allowed to go home. Poor H - he was really in pain.
We managed to keep our 8.30am slot for egg collection and arrived at Nottingham at 8am. My mum kindly drove us. We were put into a little room and I had to change into a gown. After some preliminaries and forms, I was collected by the nurse and walked down into the theatre. I was quite surprised at the size of the room - it was huge. I hopped onto the bed and the anaesthetist began to try to get the IV into the back of my hand. It took two attempts as my veins are quite awkward. When he succeeded he said, 'here's a nice big gin and tonic' and I remember thinking that I felt a bit drunk, then that was it - out for the count. Although it was not a general anaesthetic, I remember nothing, felt nothing and was completely oblivious to anything going on.
The first thing I remember is waking up in the recovery room with a warm sensation on my abdomen. It was a heating pad they'd placed there. There was a nurse in the room and I asked her how many eggs they'd got. How many times must she have been asked that?! She told me '7 eggs' and I promptly started weeping. 7 was not enough! I expected more like 10 to give us a good chance of them fertilising, surviving to day 3 when they do the biopsy, then surviving to day 5 for the transfer back into me. 7 felt like a dangerous number.
They wheeled me back to our little room and H came in to see me. The consultant and the embryologist both came to explain how the procedure had gone. They were unconcerned about the 7 eggs and told me that they expected that the other 3 follicles would have yielded immature eggs which would have been useless anyway, had they managed to extract them. We were reassured a bit then. The stern nurse told me off for 'sulking about my 7 eggs' with a twinkle in her eye.
We were driven home and looked after so well by my mum. We went to bed hoping for good news in the morning.
Thursday, 12 March 2009
Egg collection is scheduled
Sorry I didn't come back and update yesterday afternoon. The news was that the clinic wanted me to do another day of stims and come back this morning for another scan and blood test. I was pleased with that as I want some of the smaller follicles to catch up.
So, at the scan this morning, the womb lining was still the same, and the sonographer (different lady this morning) said it looked really good. My largest follicle is now 23mm and there are 10 follicles at good sizes. There are also 3 smaller ones at 11mm, 9mm and 9mm, which are borderline for being able to catch up in time. There are only 3 follicles on my left ovary (where that cyst is) and it's the right ovary that seems to be doing the lion's share of the work. All in all, it's the kind of response they expected from me, so that's good. It's not an amazing number of follicles, but it's not bad either. Pretty average crop!
I've had to wait a few hours for the clinic's call to tell me when they want me in for egg collection. It's Saturday morning at 8am! Bloody hell - this is actually going to happen now! Tonight at 8.30pm on the dot I have to take the 'trigger shot' which is two vials of Pregnyl, the drug that matures the eggs prior to collection. I also have to take my Buserelin at the normal time - this is to stop me from spontaneously ovulating.
I am not allowed any food after midnight on Friday night or liquid after 5.30am Saturday. Then H and I are to go to the clinic for 8am sharp, and I'll be taken to theatre for 8.30am. We should be ready to go home just before lunch.
I do feel a bit scared. I've never had any kind of anaesthetic before (well, apart from a local one in my mouth at the dentist) so I'm worrying about the unknown. I hope I don't feel anything. I hope I get a good crop of mature eggs. I hope H's sample is ok. So many things to hope for - every day brings a new worry.
If you're reading this, please keep your fingers crossed for me. I need some vibes directed at my follicles to finish ripening and grow big and healthy. Maybe one of them could become our future child.
Wednesday, 11 March 2009
First follicle scan - bit of a shock!
Well, back from my first follicle scan, and it's good news! They were quite surprised to see that lots of my follicles were reaching a good size, more on my right than my left ovary, but about 10 measurable ones altogether. Smallest is 9mm and the largest is 19.5mm. My womb lining is 'triple-lined' which I think is good, and is 8.5mm. They said I am very close and that the trigger would either be tonight or tomorrow night. Much much sooner than we were expecting as this is only day 8 of stims!! I just hope that these 10 will be mature enough, and maybe that a few more will join them, so I'd like to stim for one more day. But we'll see how my bloods come back later. So, egg collection either Friday or Saturday!! This is happening so quickly - I'm a tad scared now.
The clinic are going to call me later to let me know what to do (whether I need to do the injections for one more night or whether I'm ready to take the 'trigger shot' now). The trigger shot is the one that's stored in the fridge, and its job is to give the follicles a final ripening surge, so that they're mature when they're collected. I'm 'working from home' till about 11.30 then got to go in for a few meetings, so I bet I'll miss the clinic's call. I'm sitting here with a hot water bottle on my tummy in a bid to get the follicles even bigger!
So, all in all, I'm pleased but a bit scared! I just can't believe that we're nearly ready to go! I got a 'well done' from the nurse, who said 'you're very close' so I feel quite proud that my body is doing what it's been told to do! I would have preferred the number of follicles to be closer to 15, as the more there are, the more chance that we are left with some that are decent quality and CF-free, but maybe some more will develop between now and egg collection.
Will update later when I get the call from the clinic.
The clinic are going to call me later to let me know what to do (whether I need to do the injections for one more night or whether I'm ready to take the 'trigger shot' now). The trigger shot is the one that's stored in the fridge, and its job is to give the follicles a final ripening surge, so that they're mature when they're collected. I'm 'working from home' till about 11.30 then got to go in for a few meetings, so I bet I'll miss the clinic's call. I'm sitting here with a hot water bottle on my tummy in a bid to get the follicles even bigger!
So, all in all, I'm pleased but a bit scared! I just can't believe that we're nearly ready to go! I got a 'well done' from the nurse, who said 'you're very close' so I feel quite proud that my body is doing what it's been told to do! I would have preferred the number of follicles to be closer to 15, as the more there are, the more chance that we are left with some that are decent quality and CF-free, but maybe some more will develop between now and egg collection.
Will update later when I get the call from the clinic.
Tuesday, 10 March 2009
Day 7 of Stims - feeling some stirrings
Well we've made it to day 7 of the stimulating injections. Injection 6 is over and it's onto number 7 tonight - the last one before the follicle scan tomorrow.
I don't know whether it's my pain threshold lowering as we go on, but the injections do seem to be getting a bit more stingy. Maybe it's because I'm running out of places to jab now on my tummy. Still - could be worse, I guess.
I'm definitely feeling something going on in my womb/ovary area now. I feel kind of heavy in my womb, with a few dull twinges of pain from time to time. I actually feel bloated, butI don't look bloated, if you know what I mean?
Tomorrow morning is something that is making me anxious. What if they find only a few small follicles and think I'm not responding very well? As 25% of our embryos will statistically be affected with Cystic Fibrosis, we really need a good crop of eggs so that if some do fall by the wayside, we still have a decent number. Please, please let my body be behaving itself and producing lots of great quality eggs.
Maybe tomorrow they'll be able to give us an idea of when egg collection may be. We can then start counting down towards that. I'm guessing that it will be Monday or Tuesday next week, based on average cycles.
In the meantime, plenty of water, plenty of milk, and plenty of protein to get the eggs growing. Also hot water bottles on my tummy as often as I can to encourage egg development.
Hopefully my next post will bring some good news about the scan. . . .
I don't know whether it's my pain threshold lowering as we go on, but the injections do seem to be getting a bit more stingy. Maybe it's because I'm running out of places to jab now on my tummy. Still - could be worse, I guess.
I'm definitely feeling something going on in my womb/ovary area now. I feel kind of heavy in my womb, with a few dull twinges of pain from time to time. I actually feel bloated, butI don't look bloated, if you know what I mean?
Tomorrow morning is something that is making me anxious. What if they find only a few small follicles and think I'm not responding very well? As 25% of our embryos will statistically be affected with Cystic Fibrosis, we really need a good crop of eggs so that if some do fall by the wayside, we still have a decent number. Please, please let my body be behaving itself and producing lots of great quality eggs.
Maybe tomorrow they'll be able to give us an idea of when egg collection may be. We can then start counting down towards that. I'm guessing that it will be Monday or Tuesday next week, based on average cycles.
In the meantime, plenty of water, plenty of milk, and plenty of protein to get the eggs growing. Also hot water bottles on my tummy as often as I can to encourage egg development.
Hopefully my next post will bring some good news about the scan. . . .
Saturday, 7 March 2009
Day 3 of stimming
So we've done three injections of the Menopur now and onto the 4th one tonight. H is getting the hang of mixing all the drugs up but I seem to have had a couple of duff needles, which won't pierce my skin. Either that or I'm developing a rhino hide. Maybe it's finally happened after all these months of well meaning acquaintances asking about when the stork will be paying us a visit!
Still a bit worried about this nagging left ovary. Sometimes the ache spreads round to my lower back. I wish it wasn't there in the first place, and then it would be easier to tell when I start to get the twinges from the follicles developing. I think I do feel a touch bloated though, a bit heavier in the lower abdomen. But it's so hard to know whether I'm imagining that. I need to keep drinking lots of water today. It's easy when I'm at work as the bottle is on my desk all day and I can get through 2 litres by the end of the day, but today is Saturday, and I need to make sure I don't forget.
4 more injections until first follicle scan. I'm still feeling positive but getting a bit more nervous now that we're getting close to the real action of IVF.
Still a bit worried about this nagging left ovary. Sometimes the ache spreads round to my lower back. I wish it wasn't there in the first place, and then it would be easier to tell when I start to get the twinges from the follicles developing. I think I do feel a touch bloated though, a bit heavier in the lower abdomen. But it's so hard to know whether I'm imagining that. I need to keep drinking lots of water today. It's easy when I'm at work as the bottle is on my desk all day and I can get through 2 litres by the end of the day, but today is Saturday, and I need to make sure I don't forget.
4 more injections until first follicle scan. I'm still feeling positive but getting a bit more nervous now that we're getting close to the real action of IVF.
Wednesday, 4 March 2009
Downregulation scan day
Today H and I went to the clinic to get my downregulation scan, blood test, and the training for the Menopur injections.
Back to the scan etc later. I want to talk about the injection lesson first. This lesson was to show us how to mix the Menopur drugs which will do the job of stimulating lots of egg follicles to ripen. It's much more involved than the simple Buserelin injections. Basically, H has to put a big mixing needle on the syringe and draw up some water from a ampoule. He then has to squirt this water into a vial containing the Menopur powder, and draw it back up into the syringe. This process has to be repeated so that all four vials of Menopur powder are dissolved and in the syringe. He then has to pop on a smaller needle so that I can inject it into my tummy. As well as this Menopur injection, I have to continue to have the Buserelin injection, so I have to have one needle in each side of my tummy, each evening. Never mind, it's not the injections that have been bothering me - it's the side effects from the Buserelin. Yesterday I felt absolutely awful. It felt like my head was in a vice all day, and the hot flushes have also started. Hopefully, the addition of the Menopur will make me feel better as my oestrogen levels rise.
Back to the scan . . . .
I have been worrying a bit about this scan as the pain I'm getting in my left ovary has not gone away and I convinced myself that it was a cyst that would scuper the treatment cycle.
So when I had the ultrasound, I was not surprised when they told me that they could see something on my left ovary. It seems I have a 'collapsed follicle', which is basically what last month's ovulated egg sprang from and which has now filled with blood. The sonographer said that it would be like a deflating balloon, all shrivelled, and that it measured 21 mm!! But the good news was that my womb lining was 3mm (they like it to be 4mm and under). So I was told everything should be ok, but they had to wait until this afternoon when they would ring me with the results of my blood test to see if I have indeed 'downregged'.
Cue an anxious few hours, and frustration when I missed the call and then couldn't get hold of the nurses when I rang back. But we got the go ahead!! We start the stimming tonight! I did ask the nurse for reassurance on the cyst-thing, as I was worried it may prevent so many eggs from developing or maybe be in the way when it came to collection time. But she reassured me quite firmly that it would not make a difference.
We're back in a week today for the first stimming scan, which will be day 8 of the Menopur. I'm going to do everything possible from now until then to get these eggs to grow. I've asked my mum to get me a tub of Whey Protein shake as I've read that my eggs needs lots of protein to grow. I'm going to try to visualise them all growing in there, like peas in a pod.
Please let this work. I want to be a mum so much.
Back to the scan etc later. I want to talk about the injection lesson first. This lesson was to show us how to mix the Menopur drugs which will do the job of stimulating lots of egg follicles to ripen. It's much more involved than the simple Buserelin injections. Basically, H has to put a big mixing needle on the syringe and draw up some water from a ampoule. He then has to squirt this water into a vial containing the Menopur powder, and draw it back up into the syringe. This process has to be repeated so that all four vials of Menopur powder are dissolved and in the syringe. He then has to pop on a smaller needle so that I can inject it into my tummy. As well as this Menopur injection, I have to continue to have the Buserelin injection, so I have to have one needle in each side of my tummy, each evening. Never mind, it's not the injections that have been bothering me - it's the side effects from the Buserelin. Yesterday I felt absolutely awful. It felt like my head was in a vice all day, and the hot flushes have also started. Hopefully, the addition of the Menopur will make me feel better as my oestrogen levels rise.
Back to the scan . . . .
I have been worrying a bit about this scan as the pain I'm getting in my left ovary has not gone away and I convinced myself that it was a cyst that would scuper the treatment cycle.
So when I had the ultrasound, I was not surprised when they told me that they could see something on my left ovary. It seems I have a 'collapsed follicle', which is basically what last month's ovulated egg sprang from and which has now filled with blood. The sonographer said that it would be like a deflating balloon, all shrivelled, and that it measured 21 mm!! But the good news was that my womb lining was 3mm (they like it to be 4mm and under). So I was told everything should be ok, but they had to wait until this afternoon when they would ring me with the results of my blood test to see if I have indeed 'downregged'.
Cue an anxious few hours, and frustration when I missed the call and then couldn't get hold of the nurses when I rang back. But we got the go ahead!! We start the stimming tonight! I did ask the nurse for reassurance on the cyst-thing, as I was worried it may prevent so many eggs from developing or maybe be in the way when it came to collection time. But she reassured me quite firmly that it would not make a difference.
We're back in a week today for the first stimming scan, which will be day 8 of the Menopur. I'm going to do everything possible from now until then to get these eggs to grow. I've asked my mum to get me a tub of Whey Protein shake as I've read that my eggs needs lots of protein to grow. I'm going to try to visualise them all growing in there, like peas in a pod.
Please let this work. I want to be a mum so much.
Sunday, 1 March 2009
Spring seems to have sprung
First of March. It has been a lovely mild and sunny day today - all Spring-like and hopeful. The shops are full of Easter eggs as if I didn't need another reminder of the importance of eggs in our lives at the moment! H and I took our new car out to the Peak District and stopped in Ashbourne for Sunday lunch. We came across a lovely little pub that was doing a carvery, so we both tucked into Roast Beef and Yorkshire Puddings. It was delicious. Then we drove on to Dovedale and had a great walk (about 4/5 miles) along the River Dove in the sunshine. We've spent the evening on the sofa feeling nicely tired and happy.
Not long now till my first scan - just two more injections. Injection 11 has been done tonight and the sharps bin is really starting to fill up. I've been having a few pulling pains in the area of my left ovary. I'm not sure what they could be, as there should be no activity going on down there at the moment. I really hope it's not a cyst or something. My period is nearly over - that was a short one!
I want to update you on the School Reunion I went to last night, but right now my legs are telling me to go to bed, so that will have to be a post for another day . . .
Thursday, 26 February 2009
Day 8 of Downregging - First scan booked!
We have progress! My AF has arrived, a good 3/4 days early, which has surprised me as we were told that it was likely to be late due to the effects of the Buserelin. But I'm not complaining - an early AF means that I can get on and book my downregulation scan at CARE.
This scan is where they measure your womb lining and also look at your ovaries to see if there are any follicles or cysts that are still there after last cycle. They are looking to see a nice thin lining and ovaries that look like there's no-one at home. If all looks quiet, we will be able to start on our Menopur, which is the drug that stimulates the ovaries into producing lots of eggs. If this is not the case, I will not be considered to have completely 'downregulated' so will have to continue with the Buserelin until I have.
So, the scan is booked in for Wednesday morning next week - 6 sleeps, and 6 injections away. It's another little milestone to aim for, which I'm glad of. Injection 8 tonight.
Although I have period pains (tummy cramps and lower back ache) today, the fuzzy head feeling and the sleepiness that the drugs have been giving me seem to have lifted somewhat. I am reluctant to take any painkillers as I think my poor liver has got enough to deal with from the drugs to cope with any more. So I am stoically determined to mentally rise above the pain today.
My lovely husband has been wonderful throughout everything so far. He has cooked nearly every night, ran me baths, fetched and carried and generally been a fantastic support. I am so lucky to have him and I love him so much. I hope I can make him a Daddy.
We're off to see Russell Brand tonight: it'll be good to have our attention distracted for a few hours.
This scan is where they measure your womb lining and also look at your ovaries to see if there are any follicles or cysts that are still there after last cycle. They are looking to see a nice thin lining and ovaries that look like there's no-one at home. If all looks quiet, we will be able to start on our Menopur, which is the drug that stimulates the ovaries into producing lots of eggs. If this is not the case, I will not be considered to have completely 'downregulated' so will have to continue with the Buserelin until I have.
So, the scan is booked in for Wednesday morning next week - 6 sleeps, and 6 injections away. It's another little milestone to aim for, which I'm glad of. Injection 8 tonight.
Although I have period pains (tummy cramps and lower back ache) today, the fuzzy head feeling and the sleepiness that the drugs have been giving me seem to have lifted somewhat. I am reluctant to take any painkillers as I think my poor liver has got enough to deal with from the drugs to cope with any more. So I am stoically determined to mentally rise above the pain today.
My lovely husband has been wonderful throughout everything so far. He has cooked nearly every night, ran me baths, fetched and carried and generally been a fantastic support. I am so lucky to have him and I love him so much. I hope I can make him a Daddy.
We're off to see Russell Brand tonight: it'll be good to have our attention distracted for a few hours.
Wednesday, 25 February 2009
Reflections on day 6 of downregging
I'm glad I didn't do a post yesterday as it would have been a bit miserable! I had a bad day yesterday: my head felt like it was stuffed with wet cotton wool, and I felt exhausted and light-headed. And I had a hard day at work, so I was not in a great frame of mind. Seems like the Buserelin is making its presence felt.
When it came to do my injection, it took three goes to get the needle in and it stung a bit. It seemed as if my skin had thickened up overnight! Anyway, injection 6 is done and dusted and it's onto injection 7 tonight.
There are signs of my AF coming too, and I've had a few sharp stabbing pains in my right ovary area. Don't what that signifies, but I know I don't get that sort of pain in a regular month. I do hope that my AF comes soon so I can book my downregging scan at the clinic. I really want this stage to pass quickly so I can get on with the business of growing some nice juicy follicles!
On a postitive note, I managed to get through ALL of a 2 litre bottle of water at my desk yesterday. Pleased with myself for that, although I am peeing like a racehorse!!
Work calls. Another busy day. PMA.
Monday, 23 February 2009
Day 5 of downregging and a bit flat
It's been a mixed bag today. I woke up feeling flat and unwilling to get out of bed. At least I wasn't on a timescale as Monday is my day off. Most of the day I've been unable to shake this feeling of lethargy and lack of motivation to do even the most simple of tasks.
But I did make an effort to walk to the butchers which is about a mile and a half round trip so I got a bit of exercise. I seem to have an urge to cook. Yesterday I made a scrummy carrot cake (courtesy of Jamie Oliver's recipe) and although I'm not one for baking, it was delicious. Now I'm just about to make a cottage pie for our dinner.
I had a massage this afternoon and that always perks me up a bit so I'm feeling a bit brighter than I did earlier.
Injection number 5 looms. Stay with me, Positive Mental Attitude.
But I did make an effort to walk to the butchers which is about a mile and a half round trip so I got a bit of exercise. I seem to have an urge to cook. Yesterday I made a scrummy carrot cake (courtesy of Jamie Oliver's recipe) and although I'm not one for baking, it was delicious. Now I'm just about to make a cottage pie for our dinner.
I had a massage this afternoon and that always perks me up a bit so I'm feeling a bit brighter than I did earlier.
Injection number 5 looms. Stay with me, Positive Mental Attitude.
Sunday, 22 February 2009
Injections becoming routine
Well, injections 2 and 3 are done and I feel like we are now really making some progress. I didn't get the raised red patch of skin with these two injections, and they were easy to do, and pain-free.
Yesterday morning I felt a bit hot and prickly so I think I may have been having a bit of a hot flush. It's not like me to feel hot when H is cold, so something must have been going on! I've also felt really sleepy so I think that this is also something to do with the drugs.
I'm not really dwelling too much on the outcome of this cycle: perhaps it's a defence mechanism but I'm taking each day at a time and so far it's working in keeping me sane and relaxed.
On a non-IVF note, we bought a new car yesterday! We've been thinking about it for a while, so when we saw a used black Peugeot at a dealership yesterday we thought we'd be decisive and buy it. So, we should have it in a couple of weeks. Exciting.
Anyway, I'm going to spend the day making tiaras and jewellery (I have a small business) and maybe do some cooking later. H is out for the afternoon so I can have the house to myself.
Yesterday morning I felt a bit hot and prickly so I think I may have been having a bit of a hot flush. It's not like me to feel hot when H is cold, so something must have been going on! I've also felt really sleepy so I think that this is also something to do with the drugs.
I'm not really dwelling too much on the outcome of this cycle: perhaps it's a defence mechanism but I'm taking each day at a time and so far it's working in keeping me sane and relaxed.
On a non-IVF note, we bought a new car yesterday! We've been thinking about it for a while, so when we saw a used black Peugeot at a dealership yesterday we thought we'd be decisive and buy it. So, we should have it in a couple of weeks. Exciting.
Anyway, I'm going to spend the day making tiaras and jewellery (I have a small business) and maybe do some cooking later. H is out for the afternoon so I can have the house to myself.
Thursday, 19 February 2009
Injection One - We're on our way!
The first milestone has been passed! We have done one injection and have officially started downregging!
We have decided we will do these injections at 7pm each night, so they're out of the way for the evening and not hanging over us. So, after we'd eaten, we went into the kitchen to get started.
H prepared the syringe by drawing up 0.5ml of Buserelin and flicking out the air bubbles. I pinched a bit of fat on my tummy and stuck the needle in. I felt a bit more resistance than I did the other day at the clinic but it slid in ok. It stung very slightly as I depressed the syringe and the liquid went in, and I don't think I injected it all in a very smooth way. I was probably holding the syringe a bit awkwardly. Anyway, got all the drug in there and that was it - injection one done.
I sat on the sofa afterwards and was almost waiting for something to happen. Silly really! Anyway, after about 10 minutes the injection site felt a bit hot and itchy and looking at it, the skin looked raised and red. It looked as if the drug was just sitting in a pocket under my skin and not dispersing. It felt spongy to touch. I rubbed it gently a bit and after a couple of hours, the raised area had gone down. I'll see if this happens again and if it does, perhaps I'll ask the clinic if it's normal.
So here we are, at the start of this very surreal journey. I so hope it has a happy ending.
Wednesday, 18 February 2009
Au naturel for one more day
So, it's the last day of being drug-free and au naturel! Tomorrow is the day that could be the beginning of big life change for us.
I am feeling calm and in control about the whole thing. It's much much better to actually be taking steps towards the chance of a pregnancy than to just be sitting around endlessly waiting for something to happen.
It's hard though, to get the balance of emotion right. I know I need to stay positive and calm, but I also don't want to get my hopes up too much only to come crashing down at the end of the cycle. I guess what I need to be is realistically hopeful. Right - will aim for that.
I am drinking a lot of water in a bid to keep my body healthy so I'm off to visit the loo all the time! But I think it can only help with diluting the effects of the drug on my body, so I'm determined to keep it up.
I have apologised in advance to people in the know, so that if I'm grumpy or tearful over the next few weeks, they won't get too offended/worried. Fingers crossed though, that I won't get any strong side effects.
I am feeling calm and in control about the whole thing. It's much much better to actually be taking steps towards the chance of a pregnancy than to just be sitting around endlessly waiting for something to happen.
It's hard though, to get the balance of emotion right. I know I need to stay positive and calm, but I also don't want to get my hopes up too much only to come crashing down at the end of the cycle. I guess what I need to be is realistically hopeful. Right - will aim for that.
I am drinking a lot of water in a bid to keep my body healthy so I'm off to visit the loo all the time! But I think it can only help with diluting the effects of the drug on my body, so I'm determined to keep it up.
I have apologised in advance to people in the know, so that if I'm grumpy or tearful over the next few weeks, they won't get too offended/worried. Fingers crossed though, that I won't get any strong side effects.
Monday, 16 February 2009
First go with the needle
I received a phone call this morning from CARE, asking if they could change Thursday's injection training appointment to today instead. Mondays are my day off so it was fine for us to head over to sign all of the consent forms and to practice injecting.
The Buserelin injections is the one that shuts down your hormones and gives you a temporary menopause; I start taking it on Thursday. I had to pinch the flesh on my tummy and insert the syringe into the skin (of course I didn't inject any drugs just yet). It's the needle pictured above. Small. I did expect to feel a bit of a sting, but as the needle went in, I felt absolutely nothing! What a relief! The nurse said that it would be better if I did my own injections, as sometimes when the medication goes in it can sting, and if I am administering the drug, I can push it in more slowly if it does. There's more control if you do it yourself.
So, that's one more hurdle jumped. Now I have two more drug free days before my body becomes that of a menopausal woman! I feel ready.
Saturday, 14 February 2009
Needles and pins
Happy Valentines' day!
We've had a nice day: we drove out to the country and a Ploughman's in a country pub. It nearly ended in tears though! H told me last night that he had forgotten to get me a card, and although I tried not to mind, I felt a bit hurt. Turns out he was just joking, and out came a lovely card and some smellies this morning.
Anyway, back to the drugs. We unpacked the box of medication last night and had a good look at what everything is for. All seems present and correct: three vials of Suprecur for 'downregging' to shut down my hormonal system, plus syringes to use with that; five boxes of Menopur to use for 'stimming' to get lots of egg follicles growing, and the needles and syringes to go with that; some progesterone pessaries to use after embryo transfer; some drawing up needles and a sharps bin.
The drawing up needles are used to squirt in the diluting substance into the solid Menopur drug in its vial. They are bloody big and thick and when I first saw them my heart skipped a beat as I thought that these were the needles I would be sticking in me! It was a relief when I realised that actually, the needles used for downregging are very small and the ones used for stimming are a bit bigger but still fairly small. I will post some pictures of the different needles next to my thumb for size comparison.
We have actually managed to mess something up before we even start on the jabs. We have managed to get the lid jammed onto the sharps bin with all of the drugs and needles still inside. We did manage to get the drugs out through the small hole in the top, but it's not a good start, is it!?
Never mind, all the drugs are set out ready for Thursday. We are all set.
Friday, 13 February 2009
Drug dealing on Friday 13th
So, H has just told me that he has taken delivery of our IVF drugs at home. Apparently, the box they arrived in isn't too large, but he's had a peek in it and it's full of needles! Of course, I expected that, but Yikes all the same!
One of the drugs, the HcG trigger shot that you have to take last of all to ripen the eggs just prior to egg collection, has to be kept in an ice-box within the 'fridge. I bet H is thinking back to five years ago before we met when his 'fridge was filled with nothing other than a few cans of lager and and some cheese. Now the lager has been replaced by a vial of powerful hormones that he will have to jab his wife with in about 4 weeks' time. How things change, eh?
I'm impatient to finish work and get home to have a good look at the box of tricks. I've been advised that it can be a bit overwhelming when you see all of the drugs together, so a good thing to do is to separate all of the different types of drugs into different bags so that you only have to deal with one set at a time. So that'll be my Friday night.
Just thought - it's Friday 13th today. If I was superstitious that would not be good. But I'm not, so it's ok!
One of the drugs, the HcG trigger shot that you have to take last of all to ripen the eggs just prior to egg collection, has to be kept in an ice-box within the 'fridge. I bet H is thinking back to five years ago before we met when his 'fridge was filled with nothing other than a few cans of lager and and some cheese. Now the lager has been replaced by a vial of powerful hormones that he will have to jab his wife with in about 4 weeks' time. How things change, eh?
I'm impatient to finish work and get home to have a good look at the box of tricks. I've been advised that it can be a bit overwhelming when you see all of the drugs together, so a good thing to do is to separate all of the different types of drugs into different bags so that you only have to deal with one set at a time. So that'll be my Friday night.
Just thought - it's Friday 13th today. If I was superstitious that would not be good. But I'm not, so it's ok!
Thursday, 12 February 2009
It's all suddenly happening!
We got back from the Maldives on Monday to find that we had been refunded the money for our treatment that we'd already paid out to CARE. Great! The NHS had stumped up!
We also had an email from the US to say that our probe had been finished! We were ready to begin treatment now. Wow. Both of us got butterflies immediately.
I rang CARE to see when we could start the ball rolling, knowing that IVF drugs usually start on day 21 of your cycle. For me the next day 21 is next Thursday 19th so I thought I'd have to wait until next month. But to my surprise they told me that they can fit me in for this month.
WE START IVF NEXT THURSDAY!!!
Yesterday I was sent my protocol, which basically means the list of drugs you have to take on which days. For those who this means anything to, I am to inject 0.5ml of Buserelin from 19th for approx. 2 weeks then I will start on injections of 300iu Menopure. The Buserelin has the effect of shutting down your hormonal system so that the clinic can take control of the function of your ovaries - it basically induces a temporary menopause. When this stage (known as 'downregging') is complete, I will have a scan and then can start on the Menopure whose job it is to stimulate my ovaries into ripening lots of egg follicles at the same time. This lasts for about 10 days, then the ripe eggs are collected through minor surgery, hopefully fertilised in the lab, and then tested for CF. If there are any good ones free of CF, they are implanted back into me. Then we have to wait two weeks for a pregnancy test.
We also had an email from the US to say that our probe had been finished! We were ready to begin treatment now. Wow. Both of us got butterflies immediately.
I rang CARE to see when we could start the ball rolling, knowing that IVF drugs usually start on day 21 of your cycle. For me the next day 21 is next Thursday 19th so I thought I'd have to wait until next month. But to my surprise they told me that they can fit me in for this month.
WE START IVF NEXT THURSDAY!!!
Yesterday I was sent my protocol, which basically means the list of drugs you have to take on which days. For those who this means anything to, I am to inject 0.5ml of Buserelin from 19th for approx. 2 weeks then I will start on injections of 300iu Menopure. The Buserelin has the effect of shutting down your hormonal system so that the clinic can take control of the function of your ovaries - it basically induces a temporary menopause. When this stage (known as 'downregging') is complete, I will have a scan and then can start on the Menopure whose job it is to stimulate my ovaries into ripening lots of egg follicles at the same time. This lasts for about 10 days, then the ripe eggs are collected through minor surgery, hopefully fertilised in the lab, and then tested for CF. If there are any good ones free of CF, they are implanted back into me. Then we have to wait two weeks for a pregnancy test.
My drugs are due to arrive tomorrow. This is really happening now. I'm terrified and excited at the same time. We could be closer than ever to the complete joy of a BFP or closer than ever to the most devastating news that it hasn't worked. Only time will tell.
New year, new start?
We began 2009 with a new sense of hope. This had to be our year. 2008 was supposed to have been a blissful year for us - our first year as a married couple. Yet it had been a year full of periods of mind-crippingly long waits punctuated with disappointment, crashing lows and feverish highs.
2009 is going to be our year. We have to believe that - it makes no sense not to be positive.
January was quiet. The lab got on with our test and we just got on with life. We had a healthy month, no booze to speak of and a renewal of the vitamins.
We went on holiday to the Maldives on 1st February and had a blissful week in a water villa, sunbathing, snorkeling and enjoying each other's company.
2009 is going to be our year. We have to believe that - it makes no sense not to be positive.
January was quiet. The lab got on with our test and we just got on with life. We had a healthy month, no booze to speak of and a renewal of the vitamins.
We went on holiday to the Maldives on 1st February and had a blissful week in a water villa, sunbathing, snorkeling and enjoying each other's company.
The Funding Appeal
I alternated between dejection and anger when I knew we'd been refused NHS funding for our PGD treatment. We seemed to tick all of the boxes - we were the right age, had no children, I had never been pregnant, we were the right weight, in a stable relationship . . . .
Why on earth would they not fund us? And just as frustratingly, why would they not tell us the reason they had refused us?? It took my genetic counsellor and the embyologist at CARE to ring the PCT to find out why they had said no. I felt so out of control at this time - I was the bloody patient, why are they treating me like an imbecile!?
Anyway, it turned out that they had decided not to fund us as they had misinterpreted a letter from CARE stating that our fertility was normal. Of course, it was not. H was unlikely to get me pregnant due to the sperm issues so we would need ICSI anyway.
I remember turning up at my mum's house in the midst of all this stress and just breaking down. I felt like this was just too much and that I was banging my head against a brick wall. I have usually kept my outbursts of emotion quite private, but this time I couldn't hold it all in.
Anyway, I picked myself up again off the floor (wondering how many more times I would have to do that) and got on with composing an appeal to the PCT. I left no stone unturned: letters were included from my auntie who has CF children, from the genetic counsellor, from CARE, and we even managed to extract a brief statement from our very begrudging GP. We sent the appeal off in December and waited with trepidation for the outcome.
Two days before Christmas, we found out that the appeal had been successful!! Wonderful news in itself but also wonderful in the way that it gave both of us a real boost. Like suddenly we could see a tiny pinprick of light at the end of a long tunnel. The PCT agreed to fund one fresh cycle of PGD IVF and two frozen cycles, if we are lucky enough to get any 'spare' embryos to freeze.
We decided to relax and enjoy Christmas, pleased that we were finally on our way.
Why on earth would they not fund us? And just as frustratingly, why would they not tell us the reason they had refused us?? It took my genetic counsellor and the embyologist at CARE to ring the PCT to find out why they had said no. I felt so out of control at this time - I was the bloody patient, why are they treating me like an imbecile!?
Anyway, it turned out that they had decided not to fund us as they had misinterpreted a letter from CARE stating that our fertility was normal. Of course, it was not. H was unlikely to get me pregnant due to the sperm issues so we would need ICSI anyway.
I remember turning up at my mum's house in the midst of all this stress and just breaking down. I felt like this was just too much and that I was banging my head against a brick wall. I have usually kept my outbursts of emotion quite private, but this time I couldn't hold it all in.
Anyway, I picked myself up again off the floor (wondering how many more times I would have to do that) and got on with composing an appeal to the PCT. I left no stone unturned: letters were included from my auntie who has CF children, from the genetic counsellor, from CARE, and we even managed to extract a brief statement from our very begrudging GP. We sent the appeal off in December and waited with trepidation for the outcome.
Two days before Christmas, we found out that the appeal had been successful!! Wonderful news in itself but also wonderful in the way that it gave both of us a real boost. Like suddenly we could see a tiny pinprick of light at the end of a long tunnel. The PCT agreed to fund one fresh cycle of PGD IVF and two frozen cycles, if we are lucky enough to get any 'spare' embryos to freeze.
We decided to relax and enjoy Christmas, pleased that we were finally on our way.
The first consultation at CARE, Nottingham - November 2008
On 3rd November 2008 we had our first consultation at CARE in Nottingham. It took several hours to get through all of the tests that were required of us, Hep B, Hep C, Chlamydia, HIV, height and weight measurements and a semen analysis, and there was a bit of waiting in between.
Our consultant was lovely - and I thought she was even lovelier when she gave us a 35% to 50% chance of success! She said that if were were coming for regular IVF, she would say we would have a 50% chance, but as statistically, 25% of any embryos we create will be affected with cystic fibrosis, our chances fell a bit to 35%. However, if we got to the stage where there are healthy embryos to transfer back into me, we would be back at 50%.
The following week I had to come back for an internal ultrasound scan (commonly known as the 'fanny cam' to IVFers!) to check the number of follicles on my ovaries and to check the shape of my uterus. I was relieved to hear that all looked fine and that I had 13 follicles developing for that month. Those 13 follicles, when under the influence of the stimulating drugs in an IVF cycle, might be expected to produce a similar number of eggs. A good number.
I also picked up some cheek swab kits from CARE. In order to develop the test for Cystic Fibrosis that they will use on our embryos, they need to collect the DNA from me and H and our parents. It was a bit odd standing with H's parents in our kitchen twirling a pipe cleaner inside their cheeks to collect the cells. I felt like a nurse!
We sent the cheek swab samples back to CARE for them to send off to the lab in the US, thus beginning a three month wait for our test to be developed. But as far as I was concerned, the prospect of this wait was better than the previous waiting around whilst entrenched in all the bureaucracy. At least this time we were waiting knowing that things were progressing.
Our consultant was lovely - and I thought she was even lovelier when she gave us a 35% to 50% chance of success! She said that if were were coming for regular IVF, she would say we would have a 50% chance, but as statistically, 25% of any embryos we create will be affected with cystic fibrosis, our chances fell a bit to 35%. However, if we got to the stage where there are healthy embryos to transfer back into me, we would be back at 50%.
The following week I had to come back for an internal ultrasound scan (commonly known as the 'fanny cam' to IVFers!) to check the number of follicles on my ovaries and to check the shape of my uterus. I was relieved to hear that all looked fine and that I had 13 follicles developing for that month. Those 13 follicles, when under the influence of the stimulating drugs in an IVF cycle, might be expected to produce a similar number of eggs. A good number.
I also picked up some cheek swab kits from CARE. In order to develop the test for Cystic Fibrosis that they will use on our embryos, they need to collect the DNA from me and H and our parents. It was a bit odd standing with H's parents in our kitchen twirling a pipe cleaner inside their cheeks to collect the cells. I felt like a nurse!
We sent the cheek swab samples back to CARE for them to send off to the lab in the US, thus beginning a three month wait for our test to be developed. But as far as I was concerned, the prospect of this wait was better than the previous waiting around whilst entrenched in all the bureaucracy. At least this time we were waiting knowing that things were progressing.
Red tape and long waits
We had our first consultation at Guy's hospital in June 2008 and were dismayed to be told that PGD IVF cannot happen very quickly: first a test based on the individual couple's genes needs to be developed, funding needs to be sought from the NHS, and there are waiting lists to join. At the end of our day in London we felt deflated to learn that we would not be beginning our treatment until at least the early part of 2009. Eight whole months away. It felt like a lifetime.
We tried to plan lots of fun things to do to make the time pass more quickly. We went to gigs, on holiday and tried to make the most of being a childless couple. Two months passed after the appointment and I rang our Primary Care Trust to see if they had any news on the funding application. They told me that they had not received an application from Guy's for us. Puzzled, I contacted Guy's and was stunned to hear that they had not even begun on our paperwork. Did they not realise that every day feels like a week when you're waiting for your much-longed for baby? Or at least a chance at having one.
So, totally disillusioned with Guy's we investigated CARE, a private clinic much closer to home. There are only a handful of clinics in the UK that offer PGD IVF, so choice is very limited. After visiting CARE we were convinced that this was the clinic for us and we promptly changed over to them. We had some concerns as CARE do not develop the PGD test in-house: rather they are affiliated with a lab in the US, Genesis Genetics, which develops the PGD 'probe' for them. But we came away reassured that they were very experienced, and that they actually cared.
So now we had to sort out the funding. This was an absolute nightmare. Our GP was unhelpful, unfriendly and lacked knowledge on PGD. Luckily, our Genetic Counsellor from the local health authority co-ordinated the funding application for us and after a couple of months, the form was submitted. This was October. A few weeks later we heard we had been refused funding.
Devastation again. How much more bad news were we going to get this year? You start to get a bit of paranoia that someone has it in for you, that nothing is going to go right. We were fortunate in that we could afford to fund a cycle ourselves - it costs around £7k, so it's a struggle, but we had recently sold H's old house, so could use the proceeds from that. However, I was determined to appeal the decision.
We tried to plan lots of fun things to do to make the time pass more quickly. We went to gigs, on holiday and tried to make the most of being a childless couple. Two months passed after the appointment and I rang our Primary Care Trust to see if they had any news on the funding application. They told me that they had not received an application from Guy's for us. Puzzled, I contacted Guy's and was stunned to hear that they had not even begun on our paperwork. Did they not realise that every day feels like a week when you're waiting for your much-longed for baby? Or at least a chance at having one.
So, totally disillusioned with Guy's we investigated CARE, a private clinic much closer to home. There are only a handful of clinics in the UK that offer PGD IVF, so choice is very limited. After visiting CARE we were convinced that this was the clinic for us and we promptly changed over to them. We had some concerns as CARE do not develop the PGD test in-house: rather they are affiliated with a lab in the US, Genesis Genetics, which develops the PGD 'probe' for them. But we came away reassured that they were very experienced, and that they actually cared.
So now we had to sort out the funding. This was an absolute nightmare. Our GP was unhelpful, unfriendly and lacked knowledge on PGD. Luckily, our Genetic Counsellor from the local health authority co-ordinated the funding application for us and after a couple of months, the form was submitted. This was October. A few weeks later we heard we had been refused funding.
Devastation again. How much more bad news were we going to get this year? You start to get a bit of paranoia that someone has it in for you, that nothing is going to go right. We were fortunate in that we could afford to fund a cycle ourselves - it costs around £7k, so it's a struggle, but we had recently sold H's old house, so could use the proceeds from that. However, I was determined to appeal the decision.
How we got to be doing PGD IVF
Being a mother is something I always presumed I would be. As a child, I played games based on families; tea parties involving mummies and daddies, brothers and sisters with my dolls and with my friends. I’ve never been an overtly motherly type: unless babies have been part of my immediate family or very close friends, I’ve never been a cooer or a clucker over someone else’s newborn. Instead, I guess you could say that I’ve just been quietly maternal since adulthood.
When I met my husband (know hereafter as H) when I was 27, I knew very quickly that he was the man I wanted to spend the rest of my life with, and who I wanted to be the father of my children. It hit me like a thunderbolt really! When we got married after three years of being together, we were looking forward to trying for a family after about 9 months or so of being newly-weds. We knew that I carried the gene for Cystic Fibrosis: this had been confirmed when I was in my teens, after two cousins of mine had been diagnosed with the disease and genetic testing had been offered to the rest of the family. We knew that we needed to get H tested for the mutation, given that 1 in 20 people in the UK are carriers of the disease. However, the spirit in which we requested this test was very much along the lines of making sure boxes were ticked and everything was ready to go before we made our family.
July 2007
So, when we received the terrible news that H also carried the CF gene, we were absolutely devastated. It meant that we had a 25% chance that each child of ours would have the CF disease, a 50% chance that the child would be a carrier, like us, and a 25% chance that the child would neither be a carrier nor a CF sufferer. Through our genetic counsellor, we were presented with these stark options:
1) Continue to try to get pregnant naturally and leave things to nature, which includes the acceptance of the possibility of having a CF child.
2) Continue to try to get pregnant naturally, and opt for a CVS test antenatally at 11 weeks gestation, allowing us to terminate a pregnancy if we wished.
3) Go for a specialist type of IVF treatment, PGD IVF, whereby only embryos that are free of the CF disease would be transferred back into the womb.
4) Remain childless
5) Pursue adoption
Not a great set of choices. With lots of tears and heartache, we took some time to talk things through, and, although none of these options seemed any easier than the others, we went with our gut instinct that we would try naturally and then opt for a CVS test if we got pregnant. We did not feel we could bring a child into the world, knowing the suffering he/she would go through. I admit that selfish reasons also formed part of our decision.
August - November 2007
We thought the best thing to do would be to start trying immediately, given that the road ahead might not be plain sailing. So in August 2007, we threw away the condoms (I had come off the pill earlier that year to resume my natural cycles), and with trepidation and excitement, began to try to conceive. We were on holiday during part of that first month. It was so strange thinking that each time we had sex it could change our lives. You spend so long trying not to get pregnant, that it almost feels taboo when you actually start to try. Towards the end of the holiday, I was imagining all sorts of symptoms: stomach cramps, nausea, strange dips in temperature (I was temperature charting religiously); so much so that I was quietly convinced there was a baby implanting inside me. When I got my period the day we got home, I was disappointed, but still excited for the next cycle. I knew all the statistics – it could take a few months.
Over the next two months, the same build up of anxiety and excitement occurred as I neared the end of my cycle, but this time, I started to notice some irregular bleeding. At first I was convinced this was the heralded ‘implantation spotting’ and I secretly started to plan the nursery in my head. But all of the time I was frightened. If this is really it, then how am I going to deal with carrying our baby for 11 weeks, then face the anxiety of a CVS test and maybe a termination if the baby is CF? I wasn’t sure how I would face this, but we decided to take one step at a time, and not worry about things that we may not ever have to face anyway.
My emotions were not very well controlled during the first four months of trying, I admit. I would veer from being happily optimistic and relaxed during the first half of my cycle, to being obsessive, anxious and impatient during the dreaded ‘two week wait’ for my period. I also discovered that I seemed to have a rather short luteal phase of 10-11 days, which, with the irregular spotting, made me anxious that something might not be quite right with me. But we kept going. H did an at-home sperm test, and the results came back as ok, but the kit only tested concentration of sperm and not motility or morphology. We were reasonably satisfied that things seemed ok in his department!
At the end of the fourth month, I was convinced that we had done it. I became really nauseous, my breasts felt heavier and tender, and I had some strange spotting. My period was two days late and I began to plan how I would break the amazing news to H. I took some tests: they were negative, but I thought that perhaps it was a little early to get a positive result. Then my period arrived, and the bottom dropped out of my world. I fell to pieces, crying and became very dejected with the whole situation.
December 2007 - March 2008
So, I booked an appointment with my doctor to discuss things. I took my temperature charts with me and explained our situation to my GP. She seemed rather bemused that we had only been trying for four months, and told me that I should ‘relax and then it would happen’ (this is an irritating thing to say to someone who is trying to conceive, and a completely awful thing to say to someone with infertility), whilst also regaling me with tales of her patients who had given up all hope of a pregnancy and started adoption proceedings, only to find out that they had conceived after all. This was unhelpful to me – after all, what difference does someone else’s story make to us? It does not mean that there will be no problems with possibility of the conception of our child. I was a little disgruntled. But she did take on board the fact that, given our CF genes, our circumstances were somewhat different, and that I was more than a little anxious to conceive sooner rather than later. She agreed to send me for some blood work, to test my progesterone levels, my FSH, my Rubella immunity and my thyroid levels.
I got my blood tests back. All seemed fine. My progesterone levels, although not terribly high, showed that I had ovulated that month and my FSH came back at 6, which I read showed average to good egg reserves. My Rubella immunity was in place and my thyroid levels were normal.
H was worried about me at this stage, I think. We agreed that I would give the temperature charts a rest: after all, we had ascertained that I was ovulating on more or less the same day each month, and that my cycles seemed regular. So we decided to go for the approach that most of my friends and family were advising, namely ‘You’re trying too hard, perhaps. Don’t worry, just relax and it will happen!’ Well-meaning comments, I know, but incredibly frustrating to hear time after time. Just how do you relax when you’re trying so hard for a much-wanted child with the possibility of both fertility problems and antenatal testing ahead of you? Part of the bid to become less stressed about the whole thing involved reflexology sessions for me. I found a lovely lady who specialised in reflexology and fertility issues, and started seeing her every fornight. I can’t say that it made any difference to our fertility, but it is certainly relaxing to take some time out to have your feet massaged!
We continued trying for four more months, this time using the ‘relax and it will happen’ approach. This took us to the end of March. We had agreed that if nothing had happened by that time, then H would make an appointment to have a proper sperm test. He arranged this, and the day after we got back from our first wedding anniversary weekend away, he went for the test. Later that week, his doctor gave him the results.
April 2008
This was another terribly bleak day for us as a couple. H phoned me at work with the results, sounding buoyant and relieved. His GP had told him that there was nothing to worry about, that one of his statistics was a little low, but that it shouldn’t make too much difference to our ability to conceive. When H read the statistics to me, alarm bells rang. They sounded abnormally low to me. I confirmed the stats with the data on the World Health Organisation’s website and my fears were confirmed. When I got home that evening, I found him with his head in his hands. He had looked up the results on the web too and had found that his morphology and motility levels were classed as extremely low. The anguish we both felt was crushing. I could see that he felt immasculated and useless, and I felt like I couldn’t comfort him, no matter what I said or did. He could barely look at me for several hours. My poor, poor husband. It broke my heart to see him so devastated.
I was so angry with the world at this point. Why did the GP not advise him correctly? Why were we being thrown severe fertility issues on top of the CF mutation? We’d make great parents – why couldn’t we have our chance? Obviously, at this time, pregnancy and babies appeared absolutely everywhere. From TV adverts, to soaps, to passers-by, at work – everywhere. I found it so hard to deal with. There were people everywhere finding it seemingly easy to have one, two, three, four children, despite not really looking after their health. Why us?
After a week or so of complete dejection and anger, we tried to pull ourselves together and do something positive. I ordered some expensive fertility supplements for H and he agreed that he would cut down sharply on alcohol in a bid to see if he could improve his sperm quality. We decided to try to eat more whole foods and to cook from scratch; we didn’t eat many ready meals anyway, but we decided to cut them out altogether. We also decided that since we were going to need fertility treatment, then we should now change our plan to option 3 – have pre-implantation genetic diagnosis to try to conceive a child.
So we asked to be referred to Guy's and St Thomas hospital in London to commence PGD.
When I met my husband (know hereafter as H) when I was 27, I knew very quickly that he was the man I wanted to spend the rest of my life with, and who I wanted to be the father of my children. It hit me like a thunderbolt really! When we got married after three years of being together, we were looking forward to trying for a family after about 9 months or so of being newly-weds. We knew that I carried the gene for Cystic Fibrosis: this had been confirmed when I was in my teens, after two cousins of mine had been diagnosed with the disease and genetic testing had been offered to the rest of the family. We knew that we needed to get H tested for the mutation, given that 1 in 20 people in the UK are carriers of the disease. However, the spirit in which we requested this test was very much along the lines of making sure boxes were ticked and everything was ready to go before we made our family.
July 2007
So, when we received the terrible news that H also carried the CF gene, we were absolutely devastated. It meant that we had a 25% chance that each child of ours would have the CF disease, a 50% chance that the child would be a carrier, like us, and a 25% chance that the child would neither be a carrier nor a CF sufferer. Through our genetic counsellor, we were presented with these stark options:
1) Continue to try to get pregnant naturally and leave things to nature, which includes the acceptance of the possibility of having a CF child.
2) Continue to try to get pregnant naturally, and opt for a CVS test antenatally at 11 weeks gestation, allowing us to terminate a pregnancy if we wished.
3) Go for a specialist type of IVF treatment, PGD IVF, whereby only embryos that are free of the CF disease would be transferred back into the womb.
4) Remain childless
5) Pursue adoption
Not a great set of choices. With lots of tears and heartache, we took some time to talk things through, and, although none of these options seemed any easier than the others, we went with our gut instinct that we would try naturally and then opt for a CVS test if we got pregnant. We did not feel we could bring a child into the world, knowing the suffering he/she would go through. I admit that selfish reasons also formed part of our decision.
August - November 2007
We thought the best thing to do would be to start trying immediately, given that the road ahead might not be plain sailing. So in August 2007, we threw away the condoms (I had come off the pill earlier that year to resume my natural cycles), and with trepidation and excitement, began to try to conceive. We were on holiday during part of that first month. It was so strange thinking that each time we had sex it could change our lives. You spend so long trying not to get pregnant, that it almost feels taboo when you actually start to try. Towards the end of the holiday, I was imagining all sorts of symptoms: stomach cramps, nausea, strange dips in temperature (I was temperature charting religiously); so much so that I was quietly convinced there was a baby implanting inside me. When I got my period the day we got home, I was disappointed, but still excited for the next cycle. I knew all the statistics – it could take a few months.
Over the next two months, the same build up of anxiety and excitement occurred as I neared the end of my cycle, but this time, I started to notice some irregular bleeding. At first I was convinced this was the heralded ‘implantation spotting’ and I secretly started to plan the nursery in my head. But all of the time I was frightened. If this is really it, then how am I going to deal with carrying our baby for 11 weeks, then face the anxiety of a CVS test and maybe a termination if the baby is CF? I wasn’t sure how I would face this, but we decided to take one step at a time, and not worry about things that we may not ever have to face anyway.
My emotions were not very well controlled during the first four months of trying, I admit. I would veer from being happily optimistic and relaxed during the first half of my cycle, to being obsessive, anxious and impatient during the dreaded ‘two week wait’ for my period. I also discovered that I seemed to have a rather short luteal phase of 10-11 days, which, with the irregular spotting, made me anxious that something might not be quite right with me. But we kept going. H did an at-home sperm test, and the results came back as ok, but the kit only tested concentration of sperm and not motility or morphology. We were reasonably satisfied that things seemed ok in his department!
At the end of the fourth month, I was convinced that we had done it. I became really nauseous, my breasts felt heavier and tender, and I had some strange spotting. My period was two days late and I began to plan how I would break the amazing news to H. I took some tests: they were negative, but I thought that perhaps it was a little early to get a positive result. Then my period arrived, and the bottom dropped out of my world. I fell to pieces, crying and became very dejected with the whole situation.
December 2007 - March 2008
So, I booked an appointment with my doctor to discuss things. I took my temperature charts with me and explained our situation to my GP. She seemed rather bemused that we had only been trying for four months, and told me that I should ‘relax and then it would happen’ (this is an irritating thing to say to someone who is trying to conceive, and a completely awful thing to say to someone with infertility), whilst also regaling me with tales of her patients who had given up all hope of a pregnancy and started adoption proceedings, only to find out that they had conceived after all. This was unhelpful to me – after all, what difference does someone else’s story make to us? It does not mean that there will be no problems with possibility of the conception of our child. I was a little disgruntled. But she did take on board the fact that, given our CF genes, our circumstances were somewhat different, and that I was more than a little anxious to conceive sooner rather than later. She agreed to send me for some blood work, to test my progesterone levels, my FSH, my Rubella immunity and my thyroid levels.
I got my blood tests back. All seemed fine. My progesterone levels, although not terribly high, showed that I had ovulated that month and my FSH came back at 6, which I read showed average to good egg reserves. My Rubella immunity was in place and my thyroid levels were normal.
H was worried about me at this stage, I think. We agreed that I would give the temperature charts a rest: after all, we had ascertained that I was ovulating on more or less the same day each month, and that my cycles seemed regular. So we decided to go for the approach that most of my friends and family were advising, namely ‘You’re trying too hard, perhaps. Don’t worry, just relax and it will happen!’ Well-meaning comments, I know, but incredibly frustrating to hear time after time. Just how do you relax when you’re trying so hard for a much-wanted child with the possibility of both fertility problems and antenatal testing ahead of you? Part of the bid to become less stressed about the whole thing involved reflexology sessions for me. I found a lovely lady who specialised in reflexology and fertility issues, and started seeing her every fornight. I can’t say that it made any difference to our fertility, but it is certainly relaxing to take some time out to have your feet massaged!
We continued trying for four more months, this time using the ‘relax and it will happen’ approach. This took us to the end of March. We had agreed that if nothing had happened by that time, then H would make an appointment to have a proper sperm test. He arranged this, and the day after we got back from our first wedding anniversary weekend away, he went for the test. Later that week, his doctor gave him the results.
April 2008
This was another terribly bleak day for us as a couple. H phoned me at work with the results, sounding buoyant and relieved. His GP had told him that there was nothing to worry about, that one of his statistics was a little low, but that it shouldn’t make too much difference to our ability to conceive. When H read the statistics to me, alarm bells rang. They sounded abnormally low to me. I confirmed the stats with the data on the World Health Organisation’s website and my fears were confirmed. When I got home that evening, I found him with his head in his hands. He had looked up the results on the web too and had found that his morphology and motility levels were classed as extremely low. The anguish we both felt was crushing. I could see that he felt immasculated and useless, and I felt like I couldn’t comfort him, no matter what I said or did. He could barely look at me for several hours. My poor, poor husband. It broke my heart to see him so devastated.
I was so angry with the world at this point. Why did the GP not advise him correctly? Why were we being thrown severe fertility issues on top of the CF mutation? We’d make great parents – why couldn’t we have our chance? Obviously, at this time, pregnancy and babies appeared absolutely everywhere. From TV adverts, to soaps, to passers-by, at work – everywhere. I found it so hard to deal with. There were people everywhere finding it seemingly easy to have one, two, three, four children, despite not really looking after their health. Why us?
After a week or so of complete dejection and anger, we tried to pull ourselves together and do something positive. I ordered some expensive fertility supplements for H and he agreed that he would cut down sharply on alcohol in a bid to see if he could improve his sperm quality. We decided to try to eat more whole foods and to cook from scratch; we didn’t eat many ready meals anyway, but we decided to cut them out altogether. We also decided that since we were going to need fertility treatment, then we should now change our plan to option 3 – have pre-implantation genetic diagnosis to try to conceive a child.
So we asked to be referred to Guy's and St Thomas hospital in London to commence PGD.
Welcome to my blog all about my experiences of PGD IVF
I'm just about to start my first cycle of pre-implantation genetic diagnosis (PGD) IVF treatment. Most people have heard of regular IVF, but not everyone has heard about PGD. In simple terms, it's a technology that helps people who carry genetic diseases and whose future children are at risk of being born with that disease, to have healthy children. i'm hoping that this blog will help me to do a bit of venting as I go through this cycle, but I also hope that it might be helpful to others who face the prospect of PGD IVF. There's little written from the patient's perspective on PGD and it can be quite isolating to be facing this treatment.
My husband and I are having PGD primarily because we both carry the genes for the disease Cystic Fibrosis. When we first started on this journey I started to write some thoughts down to help me document what was happening to us. The second of my blog entries today gives an extract from that account. It will give some background to what is quite a complicated situation. Thanks for reading.
My husband and I are having PGD primarily because we both carry the genes for the disease Cystic Fibrosis. When we first started on this journey I started to write some thoughts down to help me document what was happening to us. The second of my blog entries today gives an extract from that account. It will give some background to what is quite a complicated situation. Thanks for reading.
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