Cetrotide confirmation

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.

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).

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) ....

• 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!! :))

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 ! :))

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!

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!

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!?

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.

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.

I have follicles and he has working bollickles!!

Hubby laughed when I said that. I guess a sense of humour is going to be vital through this :)

Today I was seen by Lynn (doctor) and Nathalie (nurse) and I had an ORT (Ovarian Reserve Test). The description on the CRGH website is:

"The ORT (Ovarian Reserve Test) is performed between days 2-5 of the period. It involves a transvaginal scan and baseline blood hormone profile (E2, FSH and AMH)."

So they tell you what it is, but not what they are looking for or why they do the test. The scan (see blog dated 4th November 2011) was to count the follicles. I had five one side and four the other. This is a good number, a relief given my age. The number of follicles is a good indicator of how many eggs a woman has left (remember we're born with all our eggs, once they're gone, they're gone!)

While I was having my scan, the nurse said "I'm just going to take some blood while you are having that done". Hang on a minute! One thing at a time, I'm busy! Oh, I don't think I have a choice in this. I guess might as well get it all over at the same time! I'm a woman, I can multitask. There was of course the advantage that I was laying down, no chance of passing out :)

I was reading a CRGH brochure that I'd kept from a visit about 3 years ago. It describes how they used to just test the FSH hormone levels, but that it was possible that a woman can still have normal FSH levels even though their egg reserve is low. Hence they now do the scan and use the number of follicles as an additional indicator.

Blood test over and done with very quickly, and I was told to phone Karen next Tuesday as the results will take about 1 week.

I found a useful diagram:

I also found a few videos, I'll evaluate them and post a link to the ones I think are best.

More detailed information for those who want to know ......

First day of period flow is counted as day one.

A follicle is an anatomical structure in which the primary oocyte (mature egg) develops. Typically around 20 follicles mature each month and only a single follicle is ovulated (an oocyte is released). The rest undergo atresia. That single dominant follicle becomes a corpus luteum following ovulation.

The blood test checks for three hormone levels:

AMH (Anti-Mullerian Hormone) is a hormone that is produced by the ovaries and is strongly correlated with the egg follicle pool. This hormone does not fluctuate month to month like other hormones, and is a strong predictor of ovarian reserve.

E2 - Estradiol (also known as Oestradiol). From Wikipedia: estradiol acts as a growth hormone for tissue of the reproductive organs, supporting the lining of the vagina, the cervical glands, the endometrium, and the lining of the fallopian tubes. It enhances growth of the myometrium. Estradiol appears necessary to maintain oocytes in the ovary. During the menstrual cycle, estradiol produced by the growing follicle triggers, via a positive feedback system, the hypothalamic-pituitary events that lead to the luteinizing hormone surge, inducing ovulation. In the luteal phase, estradiol, in conjunction with progesterone, prepares the endometrium for implantation

FSH - Follicle Stimulating Hormone, produced by the pituitary gland and directly stimulates the ovaries to recruit and support ovarian follicles, each containing one egg. The hypothalamus adjusts the production of FSH depending upon the levels of other hormones such as estrogen.

Healthy day 3 FSH levels are generally less than 10. Values of 10 to 18 are generally intermediate and are sometimes associated with lower fertility and higher miscarriage rates. Pregnancies are rare and miscarriages increase with high FSH values more than 18. This hormone level needs to be considered along with the E2 level, to check that the FSH level was tested whilst the E2 level was low (which it will be on days 3/4). A high FSH level can be an indicator of low ovarian reserve in older women, less so in younger woman, hence the additional Antral follicle count.

Aunt Flow arrives!

I joined Twitter (TCSPGD if you want to follow) to see if there was anyone else on there going through PGD & IVF. Certainly lots going through IVF, and it's like a whole new lingo, which I guess if all goes ahead as planned I will learn over time. I now know those waiting for AF are waiting for Aunt Flow (period), and people who have a BFN have a 'Big Fat Negative' (pregnancy test), and the 2WW is the 'Two Week Wait' after having embryos transplanted, before having a blood test to see if it has worked.


It's been strange wishing my period would start. Normally it's the opposite. It's not something a girl welcomes every month! I am going out tonight in London, so I was thinking how handy it would be if I could have this appointment today as I'm already travelling in. As luck would have it I was out shopping and suddenly felt that (usually unwelcome) cramping. I phoned the hospital. Unfortunately my consultant isn't in again till Tuesday. I explained that I wanted to come in but was told it would be too late in the day to send the blood off for testing. Strange, as the last appointment I had was 4pm?! When I mentioned this I was told a nurse would phone me. meanwhile I was given an appointment for Monday 11:15


No phonecall :(


I just hope Monday isn't too late. Don't want to wait another month.

Plenty of lead in his pencil !!

I called the hospital today as we hadn't heard anything. They said they wouldn't have called us unless there was a problem. I needed to speak to an embryologist if I wanted to know the results. I did just that. I wasn't expecting quite such a level of detail, a real eye opener!

Volume: 3.6 ml
Concentration: 27.3 million per ml
Motility (how many are moving): 56%
Progression (how much they are moving / speed): 2-3/4
MAR (Mixed Antiglobulin Reaction): IGA=18% IGG=11% (2 anti sperm antibodies measured, need these measurements to be low)
Morphology: 7% normal
42% head defects
51% neck defects
0% tail defects

Verdict was: Volume and concentration levels were good, motility was above average (anything over 45% is good). MAR and morphology could be slightly better but levels aren't of concern and would not affect treatment.

It's only the start, but at least it's a positive one!

Some success

Well I ended up being so nervous, mainly because I had little idea what to expect, apart from having a blood test, which is not something you'd really look forward to anyway!


We got to the unit on time, just before 4pm. We waited, there seed to be some confusion, although we gave our names when we arrived, the information had not been passed to the person who needed to know. I heard my mobile number being read out, then my bag started to vibrate. I looked up and saw the receptionist on the phone, she started to leave me a voicemail asking where my husband was as he had not turned up for his 4pm appointment!!

Hubby went off to 'produce' as they so nicely put it, so I realised as my appointment was now due, I'd be on my own. I was called soon after into a room which had what I could see was a screen from an ultrasound scan, and what looked like half a bed / stretcher. There appeared to be lots of gadgets, and something standing tall and proud and looked like something from an Anne Summers store! The internal scan turned out to be totally painless, but sadly inconclusive. Looks like I am too far into my cycle, so will have to come back next month. No blood test today.

I felt relieved, and won't have any worries about going back there next month. Hope to get results of Hubby's analysis on Monday or Tuesday.

A day out

Off to see a play tonight. Hubby took the day off so we could spend the day in London. I guess quite convenient really. We hadn't planned a hospital visit, we had in mind coffees, museums, galleries, lunch and dinner! Am now on the train on the way into town. Our appointment at CRGH is at 4pm.

Phonecall

Today I received the phonecall I never thought I'd receive! "You have funding for three cycles of IVF with PGD"  Three cycles?! That's better than I could have wished for, I always assumed if it ever happened, it would only be for one cycle.


It has been a very slow process, from when I first had the gene test over 10 years ago, to getting the funding to try PGD (Preimplantation Genetic Diagnosis) and IVF (In Vitro Fertilisation).

So ... what happens now? I was told to visit the centre during my next period. I am actually on a period now, just not sure whether I am within the 5 days they require. Hubby also has to have a fertility check. As we are going into London tomorrow anyway, we thought it was worth a try. If nothing else, at least Hubbys bit will be done, I just might have to go back next month for mine. Slightly bad timing, if only we'd had the call 2 days earlier :)


I guess this is the real beginning of the journey, it's just taken years to get to the start position ! It could all end as quickly as next week, or it could be years.