Spoke to Marion today. I think Monday's message must have got lost !
She confirmed that I would start certitude injections on Day 6 of cycle, not Day 1 as we originally believed. She did say sometimes they do things differently. So she had checked with the doctors
This means the first injections will be the Menopur and Gonal F, which I should start once they confirm all is ok after my scan on Day 1, 2 or 3 of my next cycle.
I have booked us in for a lesson on Tuesday 17th Jan.
So all I need to worry about for now is taking the Primolut twice a day from 1st Jan to 12th Jan inclusive.
So that's probably it for my blog this year. Here's to a promising 2012, and best wishes to all.
A journey through Preimplantation Genetic Diagnosis and IVF in an attempt to prevent passing on Treacher Collins Syndrome
Thursday, 22 December 2011
Monday, 19 December 2011
Cycle Day 1 (CD1) !
A surprise visit from Aunt Flow. I mentioned to hubby last night that I felt like my period was due to start, but as I shouldnt be due till Friday, assumed I was wrong. Sure enough though, today is definitely CD1. Slightly concerned that it has arrived after 24 days and will mention it at the clinic in case its important, but for now I will just be grateful that things are starting 4 days earlier!
I called the clinic to let them know, and make sure they now have an idea when I'll be starting, especially as its a little earlier that I thought it would be. I was told a nurse would call me back no call ter, so maybe tonorrow. . Hopefully when they call I can confirm the complete timetable with them.
I assume this means I will be starting the Primolut/Norethisterone on 1st Jan 2012. What a way to start the new year! These tablets are to prevent ovarian cysts and regulate hormone levels. I take these up to and including CD25 (12th January).
I called the clinic to let them know, and make sure they now have an idea when I'll be starting, especially as its a little earlier that I thought it would be. I was told a nurse would call me back no call ter, so maybe tonorrow. . Hopefully when they call I can confirm the complete timetable with them.
I assume this means I will be starting the Primolut/Norethisterone on 1st Jan 2012. What a way to start the new year! These tablets are to prevent ovarian cysts and regulate hormone levels. I take these up to and including CD25 (12th January).
Friday, 16 December 2011
Medication Arrives
My medication has arrived! Lots of little boxes, two sharps bins and a black zipper bag labelled 'Multi Dose'.
A delivery note itemised the contents, so I carefully checked this before putting the items needing refrigeration in our spare fridge (thank goodness we have one!).
Since then I have been checking the contents list against the notes I made on Tuesday to determine which medication is for each stage and when I start taking it.
I've managed to figure out most of it, not sure why we have two different sharps bins, and the bag labelled 'Multi Dose' is a mystery. Handy little bag though! :)
Some of the boxes state when the medicine should be taken, some don't. Those that do don't match what my notes say! There is also a box of 8 tablets I was not expecting
I am sure all will be confirmed as I go along, but I can imagine this might concern some people. I expected it to be much clearer than it is.
What I now know in addition to my previous post (http://tcspgd.blogspot.com/2011/12/ivf-consultation-day.html) ....
I'll need to book a lesson on the injections, so perhaps we'll find out more about the sharps bins then.
One thing that surprised me was how 'medical' it all looks. This may sound daft, but it looks like the kind of equipment you would find in a hospital, it hasn't been packaged as if for amateurs like me! I'll put pictures up as we start each medication. Hubby suggested that they should probably show patients the packaging and syringes etc whilst you are at the hospital so that it doesn't look quite so daunting when you receive it. We at least have had to deal with injections and sharps bins before because of our diabetic cat! I am slightly concerned that Hubby is going to try to grab me by the scruff of the neck to give me my jabs!! :))
A delivery note itemised the contents, so I carefully checked this before putting the items needing refrigeration in our spare fridge (thank goodness we have one!).
Since then I have been checking the contents list against the notes I made on Tuesday to determine which medication is for each stage and when I start taking it.
I've managed to figure out most of it, not sure why we have two different sharps bins, and the bag labelled 'Multi Dose' is a mystery. Handy little bag though! :)
Some of the boxes state when the medicine should be taken, some don't. Those that do don't match what my notes say! There is also a box of 8 tablets I was not expecting
I am sure all will be confirmed as I go along, but I can imagine this might concern some people. I expected it to be much clearer than it is.
What I now know in addition to my previous post (http://tcspgd.blogspot.com/2011/12/ivf-consultation-day.html) ....
- Primolut is also known as Norethisterone, and is a progesterone tablet.
- The stimulation drugs I will be taking are Menopur & Gonal (both injections, both needing refrigeration). These are known as Gonadotrophins and should be taken in the evenings.
- Cetrotide (Cetrorelix) needs to be taken until the day after the one-off injection. Looks like this starts on day 6, not day 1 as I was told.
- The final one-off injection is Pregnyl. This is an injection of hGC and has arrived as two separate doses which must be taken together.
- The extra unexpected box is called Doxycycline, antibiotics to be taken during the stimulation injection phase to clear potential infection prior to egg collection. Once daily for 8 days starting 7th day of injections.
I'll need to book a lesson on the injections, so perhaps we'll find out more about the sharps bins then.
One thing that surprised me was how 'medical' it all looks. This may sound daft, but it looks like the kind of equipment you would find in a hospital, it hasn't been packaged as if for amateurs like me! I'll put pictures up as we start each medication. Hubby suggested that they should probably show patients the packaging and syringes etc whilst you are at the hospital so that it doesn't look quite so daunting when you receive it. We at least have had to deal with injections and sharps bins before because of our diabetic cat! I am slightly concerned that Hubby is going to try to grab me by the scruff of the neck to give me my jabs!! :))
Thursday, 15 December 2011
Lots of reading ... and telling the parents!
I've been reading through some of the information we were given on Tuesday. There are consent forms for various things and they are also making sure we understand any risks, and of course that at each stage or procedure the results are not guaranteed. There is information about freezing (Cryopreservation), Dummy Embryo Transfer, Assisted Zona Hatching and Blastocyst Embryo Transfer. I'm going to sit down with Hubby Saturday and go through it all.
We've now brought my parents up to date now it's all going ahead. I feel better now they know. Being so close I didn't like keeping it from them. They are very pleased, they know it's been a very long wait getting the funding, but obviously a little worried for us too. I guess we have to get the balance between being positive and hopeful, yet remain realistic and accept chances of success are quite low.
When I told Mum she mentioned she had been thinking its been a while since she'd had the chance to hold a new baby. Still a long way off Mum, but I hope we can give you that pleasure !!
We haven't told Hubbys parents yet. I will let him decide when he wants to do that. They don't know much about my TCS, and have never really asked about that or us having children so I don't think they are aware (yet!) of what we will need to do. Lucky for us all our parents are already grandparents, so there's not too much pressure there ! :))
We've now brought my parents up to date now it's all going ahead. I feel better now they know. Being so close I didn't like keeping it from them. They are very pleased, they know it's been a very long wait getting the funding, but obviously a little worried for us too. I guess we have to get the balance between being positive and hopeful, yet remain realistic and accept chances of success are quite low.
When I told Mum she mentioned she had been thinking its been a while since she'd had the chance to hold a new baby. Still a long way off Mum, but I hope we can give you that pleasure !!
We haven't told Hubbys parents yet. I will let him decide when he wants to do that. They don't know much about my TCS, and have never really asked about that or us having children so I don't think they are aware (yet!) of what we will need to do. Lucky for us all our parents are already grandparents, so there's not too much pressure there ! :))
Wednesday, 14 December 2011
Healthcare at Home
I had a phonecall this morning from Healthcare at Home to arrange a date for Medication delivery.
All booked for Friday morning!
All booked for Friday morning!
Tuesday, 13 December 2011
IVF Consultation Day
We had our appointment with Dr Paul Serhal today at 12. I deliberately made our blood test for the PGD workup earlier so we could get it out of the way. We arrived at 11am and had our blood taken at the same time by two nurses - 3 vials each by Nathalie and a name I didn't quite catch (Tahlia)? I was sitting up for the blood test and was fine.
We went over to the Alexandra Wing and sat in the waiting room filling out lots of forms and signing every page. I was so pleased that Karen Fordham popped in for a chat while we were there. I asked her the question that has been bugging me for a couple of days... Will I have 3 IVF cycles whilst waiting for the PGD workup to be completed (which can take 1 year) and have 3 lots of embryos (if we get any!) frozen. Usually I guess you would only go for another cycle if the first has failed. Karen understood where I was coming from completely and she had also be considering this. She suggested I mention to to Dr Serhal, but advised us to see how the first cycle goes. We'll have a better idea of chances and progress once the egg collection and fertilization is done.
Dr Serhal was friendly and reassuring, and I loved the fact that he had a montage of baby pictures 'successes' on his wall. I said it must be so rewarding when he can help couples fulfil their desire to become parents, he agreed strongly and added that it was equally frustrating when things didn't succeed.
He asked me a few medical history questions and when my next cycle was due to start. He then talked us through the medication I needed to take:
Next cycle:
Day 14: (should be about 4th Jan) - start taking Primolut tables twice a day morning and night up to and including day 25 (prevents ovarian cysts and regulates hormone levels)
New cycle:
Day 1-7: Cetrotide injections (Block ovaries, prevents egg release)
Day 1-3 Visit CRGH for a scan, to confirm ok to start stimulation drugs
Day 3: Injection to produce eggs (didn't say the name of these) for about 10-11 days
During this time I need to go in for regular scans and blood tests to check hormone levels and follicle development.
Day 14: (ish) Once scan determines all is ready I need to take 1 final (different) injection
40 hours precisely after the final injection, Eggs collection occurs. This piece therefore has to be carefully timed and coordinated.
We agreed the dummy embryo transfer which would normally occur before treatment would wait until we are just before the real transfer stage. No point in doing it now to determine everything is ok, because things may change in a years time.
We then saw Marion who talked us through the drugs in a little more detail, but she was not sure what stimulating drug I would be on. It could be a combination of two (this would mean 3 injections in total on some days!) We can go in for a lesson on the injections nearer the time. One of them would be a 'pen' style, the others would be syringes. (I wonder why the difference?!)
Our drugs would be delivered to our home address, we will get a phonecall soon.
They then took more blood!! This was for a health screen which must be done before any of the treatment.
I left feeling more excited than scared. Everyone was very nice and helpful, so I feel like we will be in safe hands :)
We now have lots of information to read and many more forms to fill in!
We went over to the Alexandra Wing and sat in the waiting room filling out lots of forms and signing every page. I was so pleased that Karen Fordham popped in for a chat while we were there. I asked her the question that has been bugging me for a couple of days... Will I have 3 IVF cycles whilst waiting for the PGD workup to be completed (which can take 1 year) and have 3 lots of embryos (if we get any!) frozen. Usually I guess you would only go for another cycle if the first has failed. Karen understood where I was coming from completely and she had also be considering this. She suggested I mention to to Dr Serhal, but advised us to see how the first cycle goes. We'll have a better idea of chances and progress once the egg collection and fertilization is done.
Dr Serhal was friendly and reassuring, and I loved the fact that he had a montage of baby pictures 'successes' on his wall. I said it must be so rewarding when he can help couples fulfil their desire to become parents, he agreed strongly and added that it was equally frustrating when things didn't succeed.
He asked me a few medical history questions and when my next cycle was due to start. He then talked us through the medication I needed to take:
Next cycle:
Day 14: (should be about 4th Jan) - start taking Primolut tables twice a day morning and night up to and including day 25 (prevents ovarian cysts and regulates hormone levels)
New cycle:
Day 1-7: Cetrotide injections (Block ovaries, prevents egg release)
Day 1-3 Visit CRGH for a scan, to confirm ok to start stimulation drugs
Day 3: Injection to produce eggs (didn't say the name of these) for about 10-11 days
During this time I need to go in for regular scans and blood tests to check hormone levels and follicle development.
Day 14: (ish) Once scan determines all is ready I need to take 1 final (different) injection
40 hours precisely after the final injection, Eggs collection occurs. This piece therefore has to be carefully timed and coordinated.
We agreed the dummy embryo transfer which would normally occur before treatment would wait until we are just before the real transfer stage. No point in doing it now to determine everything is ok, because things may change in a years time.
We then saw Marion who talked us through the drugs in a little more detail, but she was not sure what stimulating drug I would be on. It could be a combination of two (this would mean 3 injections in total on some days!) We can go in for a lesson on the injections nearer the time. One of them would be a 'pen' style, the others would be syringes. (I wonder why the difference?!)
Our drugs would be delivered to our home address, we will get a phonecall soon.
They then took more blood!! This was for a health screen which must be done before any of the treatment.
I left feeling more excited than scared. Everyone was very nice and helpful, so I feel like we will be in safe hands :)
We now have lots of information to read and many more forms to fill in!
Wednesday, 7 December 2011
IVF consultation booked
Just a quick post today. I phoned the hospital to make an appointment for IVF consultation. We're booked in for midday next Tuesday (13th December). We'll have the blood tests beforehand. At least next Tuesday we will then have more of an idea what's coming. Am I now going to be an emotional wreck over Christmas and New Year!?
Tuesday, 6 December 2011
One step backwards, two steps forwards!
The meeting happened, and they have a plan.
Karen phoned me as promised even though it was late in her day. I'm sure it's more appealing to work late when you are giving more positive news than like the last phonecall she made to me!
They will start the IVF side of things as soon as possible, before my levels get any lower. The resulting embryos (assuming there are some) will then be frozen until the PGD test has been developed. We will have to fund this ourselves, and freezing embryos does reduce chances of success a little, but it's possibly better than to risk my Ovarian reserve being lower in a years time.
So the AMH level is still an issue, but at least we're getting a shot at it.
Feeling relieved and slightly unprepared! This bit wasn't supposed to be happening yet. No idea what to expect or what drugs are involved.
Next step is to speak to hubby, check we're happy to fund the extra (no brainer, he said as much too!) and then make an appointment to see an IVF consultant. I could start treatment on my next cycle, which would be around 23rd December.
Karen phoned me as promised even though it was late in her day. I'm sure it's more appealing to work late when you are giving more positive news than like the last phonecall she made to me!
They will start the IVF side of things as soon as possible, before my levels get any lower. The resulting embryos (assuming there are some) will then be frozen until the PGD test has been developed. We will have to fund this ourselves, and freezing embryos does reduce chances of success a little, but it's possibly better than to risk my Ovarian reserve being lower in a years time.
So the AMH level is still an issue, but at least we're getting a shot at it.
Feeling relieved and slightly unprepared! This bit wasn't supposed to be happening yet. No idea what to expect or what drugs are involved.
Next step is to speak to hubby, check we're happy to fund the extra (no brainer, he said as much too!) and then make an appointment to see an IVF consultant. I could start treatment on my next cycle, which would be around 23rd December.
Thursday, 1 December 2011
Potentially huge setback
Just had a call from Karen Fordham. Looks like my biggest fear may have come true. I've waited so long for the funding, I might have waited too long.
My blood test results are back already. Nice of Karen to call so late in the day, it was 7:30 pm and she was still working!
Results were:
E2: 152 ... Fine
FSH: 6 ... Fine (needs to be less than 9)
AMH: 2 ... NOT fine, ideally should be 10
Seems this could be a potential show stopper. I feel a bit sick, just the injustice of it. Still, they haven't said no, yet. The biggest problem is that the PGD test takes months, possibly a year, so if my level is low now, it's likely to be even lower at treatment start time. There's a meeting next Tuesday evening, my case will be discussed then to see if there's anything can be done.
So now we wait a few days, feeling deflated, but trying not to give up hope.
My blood test results are back already. Nice of Karen to call so late in the day, it was 7:30 pm and she was still working!
Results were:
E2: 152 ... Fine
FSH: 6 ... Fine (needs to be less than 9)
AMH: 2 ... NOT fine, ideally should be 10
Seems this could be a potential show stopper. I feel a bit sick, just the injustice of it. Still, they haven't said no, yet. The biggest problem is that the PGD test takes months, possibly a year, so if my level is low now, it's likely to be even lower at treatment start time. There's a meeting next Tuesday evening, my case will be discussed then to see if there's anything can be done.
So now we wait a few days, feeling deflated, but trying not to give up hope.
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