As I mentioned in my last post, the next step for us is getting my fertility tested whilst we wait for our funding to be approved. This means I need to come off my contraceptive pills and have blood tests at certain parts of my cycle.
I took my last pill on Sunday and will be due to start my period on Friday. The first blood test should be on day 2 of my period but my GP told me that doing fertility tests on this withdrawal bleed would be no use so I therefore need to wait until I've had a month off the pill. We worked out when I would need the first blood test (providing my cycle stays regular without the pills) and I won't be able to get the test because we'll be in Ireland for the World Powerlifting Championships (we're both competing so not going is not an option). Therefore everything has had to be put back a month. I'm going to stay on the pills, stop them in October and go for the tests in November. It's only a tiny setback and in the run of things shouldn't actually put our treatment back because it'll take a while to get funding anyway.
In more exciting new, after an 80 hour induction/labour/battle, one of my friends gave birth to a beautiful little girl last Friday. I went to visit her today (which did not help my broody feelings) and they're all doing well. Her and her husband were trying to get pregnant for over 2 years before it happened so I'm unbelievably happy for them. Total proof that the best things in life are worth waiting for :)
Wednesday, 16 September 2015
Wednesday, 9 September 2015
You've Got Mail...
Yesterday we got our letter in the mail following our genetics appointment in August. It basically requests us to return the form saying we want to go ahead (if we do), which we returned straight away and will have crossed in the mail I assume. It also suggests that I go to my GP to arrange the fertility tests which I will be doing ASAP. I figured now would be a good way to explain the process which is written in the letter so I'll copy the relevant bits for anyone who may be wondering what happens next. Each step assumes that all has gone well in the previous test. For a bit of background, we are using Sheffield services for the local bits (not exactly local but closer than London) but the actual base for our treatment is Guy's Hospital in London.
DISCLAIMER: I am not a doctor and although this information came from the letter from my doctor it may not be medically accurate. Always check with your own healthcare professionals for information.
- "We do the work-up locally. This involves confirming your fertility. I need to send various blood samples to Guy's Hospital for them to confirm that they could do the laboratory test on the cells biopsied from the embryo." - These points aren't entirely relevant to each other, we need a blood test from myself, ALS and his father to enable them to create the DNA test. Confirming my fertility is a separate issue.
- "The basic aspects of the procedure are that the Assisted Conception Unit in Sheffield would take over the control of your ovaries. The first step would be to use some hormone treatment to down-regulate the ovaries and then more hormone treatment to stimulate the ovaries. There is a small chance that they could overstimulate your ovaries which would require coming into hospital and going on a drip." - This was explained more fully in the clinic appointment and obviously, they have to go over the risks.
- "We would fax a scan of your ovaries to Guy's Hospital for them to arrange for you to have egg collection under sedation. - After this process was explained, I'm seriously glad I won't be awake!
- "These would then be fertilised. We would take some cells from each embryo, test them on day 5 and freeze then all so that suitable ones can be transplanted at a later date. I have to tell you that there is a chance there may be no suitable embryos. - This is where all the complicated DNA testing takes place which makes this process differ from normal IVF. There is a risk that some embryos may not survive the biopsy and of course a risk that there are no suitable ones due to them all containing the chromosome 4 (affected with Huntington's disease) from ALS mother rather than his father.
- "We would only want to transfer one embryo at a time to avoid the possibility of multiple births." - This embryo could split and create twins however it's less likely than if they implant 2 embryos and also means any suitable left over embryos can be implanted later on if we are unsuccessful. This would count as the same "cycle" so would only be one of our NHS funded attempts even if we have more than one embryo transfer.
So that's the basic process, any other relevant information is below:
What is PGD exclusion testing?
We are using exclusion testing as ALS does not want to know whether he has inherited the HD gene from his mother. The gene is carried on chromosome 4 (baby will get one chromosome 4 from me and one from ALS) therefore we will only be implanting embryos which have the chromosome 4 from ALS' father, not his mother. It does mean that there could be some embryos that we don't use that have the chromosome from his mother without actually being affected but this keeps it so that nobody knows ALS' status with regards to the gene.
What are the chances of success?
According to what we have been told the chances of me becoming pregnant increase as we go along. Current the chance is about 20%. Once the cycle is started there is around a 33% chance. If we get to the stage of transferring an embryo then the chance of pregnancy is 50%. The chance of having a baby at the end may be a little lower because of other things that could go wrong during the pregnancy such as miscarriage etc.
How much funding is available?
The NHS will generally fund 3 rounds of treatment for couples who meet the criteria (this in the UK). The criteria is related to age and BMI of mum and the fact that neither parent is a smoker. It's basically the same as the criteria for standard IVF. There may be other bits to it but these are the big ones.
One round of treatment is until every available embryo has been used. If the first round is unsuccessful you will be offered a further 2 unless there is a low chance of success (such as the pregnancy was unsuccessful because of fertility issues rather than chance).
What are the risks?
There are all the same risks associated with IVF and of course the risk that embryos may be lost to biopsy. There is a minute chance that the test will be inaccurate and the baby will have the affected gene but this is incredibly rare and would require a serious medical "cock up" and a lot of bad luck along the way. There are also the same risks as any other pregnancy such as risks to the mum carrying the child and risks of the child being affected with any other kind of medical problem.
There's lots more information on all these topics at www.pgd.org.uk and if there are any questions about the emotional side of things or anything else feel free to comment or email me.
DISCLAIMER: I am not a doctor and although this information came from the letter from my doctor it may not be medically accurate. Always check with your own healthcare professionals for information.
- "We do the work-up locally. This involves confirming your fertility. I need to send various blood samples to Guy's Hospital for them to confirm that they could do the laboratory test on the cells biopsied from the embryo." - These points aren't entirely relevant to each other, we need a blood test from myself, ALS and his father to enable them to create the DNA test. Confirming my fertility is a separate issue.
- "The basic aspects of the procedure are that the Assisted Conception Unit in Sheffield would take over the control of your ovaries. The first step would be to use some hormone treatment to down-regulate the ovaries and then more hormone treatment to stimulate the ovaries. There is a small chance that they could overstimulate your ovaries which would require coming into hospital and going on a drip." - This was explained more fully in the clinic appointment and obviously, they have to go over the risks.
- "We would fax a scan of your ovaries to Guy's Hospital for them to arrange for you to have egg collection under sedation. - After this process was explained, I'm seriously glad I won't be awake!
- "These would then be fertilised. We would take some cells from each embryo, test them on day 5 and freeze then all so that suitable ones can be transplanted at a later date. I have to tell you that there is a chance there may be no suitable embryos. - This is where all the complicated DNA testing takes place which makes this process differ from normal IVF. There is a risk that some embryos may not survive the biopsy and of course a risk that there are no suitable ones due to them all containing the chromosome 4 (affected with Huntington's disease) from ALS mother rather than his father.
- "We would only want to transfer one embryo at a time to avoid the possibility of multiple births." - This embryo could split and create twins however it's less likely than if they implant 2 embryos and also means any suitable left over embryos can be implanted later on if we are unsuccessful. This would count as the same "cycle" so would only be one of our NHS funded attempts even if we have more than one embryo transfer.
So that's the basic process, any other relevant information is below:
What is PGD exclusion testing?
We are using exclusion testing as ALS does not want to know whether he has inherited the HD gene from his mother. The gene is carried on chromosome 4 (baby will get one chromosome 4 from me and one from ALS) therefore we will only be implanting embryos which have the chromosome 4 from ALS' father, not his mother. It does mean that there could be some embryos that we don't use that have the chromosome from his mother without actually being affected but this keeps it so that nobody knows ALS' status with regards to the gene.
What are the chances of success?
According to what we have been told the chances of me becoming pregnant increase as we go along. Current the chance is about 20%. Once the cycle is started there is around a 33% chance. If we get to the stage of transferring an embryo then the chance of pregnancy is 50%. The chance of having a baby at the end may be a little lower because of other things that could go wrong during the pregnancy such as miscarriage etc.
How much funding is available?
The NHS will generally fund 3 rounds of treatment for couples who meet the criteria (this in the UK). The criteria is related to age and BMI of mum and the fact that neither parent is a smoker. It's basically the same as the criteria for standard IVF. There may be other bits to it but these are the big ones.
One round of treatment is until every available embryo has been used. If the first round is unsuccessful you will be offered a further 2 unless there is a low chance of success (such as the pregnancy was unsuccessful because of fertility issues rather than chance).
What are the risks?
There are all the same risks associated with IVF and of course the risk that embryos may be lost to biopsy. There is a minute chance that the test will be inaccurate and the baby will have the affected gene but this is incredibly rare and would require a serious medical "cock up" and a lot of bad luck along the way. There are also the same risks as any other pregnancy such as risks to the mum carrying the child and risks of the child being affected with any other kind of medical problem.
There's lots more information on all these topics at www.pgd.org.uk and if there are any questions about the emotional side of things or anything else feel free to comment or email me.
Monday, 7 September 2015
Ouch.
This entire post is dedicated to mouth ulcers. They are the devil's work.
It doesn't matter how much pain I am in or how sick I am, there is nothing more depressing than a mouth ulcer. In the last 3 weeks I have had around 5, usually waiting for one to clear up before another appears. I have lost 2kg in weight (I did not want to lose weight), I have barely managed to eat and keep myself hydrated without horrible pain, I have been miserable and unable to talk, I have been probably not very nice to ALS and I am fed up.
In between mouth ulcers I had a cold for 5 days, it was a nasty cold but still more bearable than a singular ulcer!
I have tried every remedy going and just about managed to force meals down myself but they seriously get me down. I love food, it is a very rare occasion that I turn down anything edible but I have been turning down all sorts of goodies.
I get a lot of pain in my hypermobile joints and although the pain in the joints is far worse than the ulcer pain, it's just far less likely to make me want to bury my head under a pillow and sleep until it goes away.
Do you have any simple ailment that you find more depressing than anything else and people think you're making way too much fuss over? Feel free to share - leave a comment or send an email to ivfjourney2000@gmail.com.
It doesn't matter how much pain I am in or how sick I am, there is nothing more depressing than a mouth ulcer. In the last 3 weeks I have had around 5, usually waiting for one to clear up before another appears. I have lost 2kg in weight (I did not want to lose weight), I have barely managed to eat and keep myself hydrated without horrible pain, I have been miserable and unable to talk, I have been probably not very nice to ALS and I am fed up.
In between mouth ulcers I had a cold for 5 days, it was a nasty cold but still more bearable than a singular ulcer!
I have tried every remedy going and just about managed to force meals down myself but they seriously get me down. I love food, it is a very rare occasion that I turn down anything edible but I have been turning down all sorts of goodies.
I get a lot of pain in my hypermobile joints and although the pain in the joints is far worse than the ulcer pain, it's just far less likely to make me want to bury my head under a pillow and sleep until it goes away.
Do you have any simple ailment that you find more depressing than anything else and people think you're making way too much fuss over? Feel free to share - leave a comment or send an email to ivfjourney2000@gmail.com.
Sunday, 6 September 2015
I DO understand!
It makes me laugh on a daily basis how when I speak about looking forward to having children people (some with children, some without children) look at me like I'm insane and tell me that I don't get how hard it's going to be and I can't possibly understand because I don't have children. It makes me kind of sad that nobody seems to advocate motherhood. People are very quick to tell you the bad side and why you shouldn't have children, it's very rare to come across someone who actually says that they love being a mother and tell you it's the most rewarding thing ever. But as we all know, it's easier to complain than to share something good!
Firstly, I am in no way expecting having children to be "easy", I'd love to be a stay at home mum but I do appreciate that it's probably a LOT harder than the job I do on a daily basis. I don't want children because I think it'll be easy. I want children because I want to bring life into the world, raise it alongside ALS and have someone to pass on my knowledge to and love unconditionally. I know that I will probably be the hardest (and definitely longest) journey of my life but I am still excited for it.
Secondly, the process of having children will, for ALS and myself, be arduous in itself. There is a lot of time, effort and unpleasant procedures that is going to go into ensuring that any child we have can be healthy. The sheer amount of work that will go into creating any pregnancy we achieve is going to be massively difficult in itself and that's before a child is even created, but I'm fully prepared for that because I so desperately want to be a mother and want us to complete our family. Obviously this is not something that people know so I can't hold it against them when they say that I'm looking at motherhood through rose tinted glasses.
Thirdly, I spent my first year or so after I left school childminding alongside my mother. At our maximum we would have 5 children under the agae of 3 (2 of whom were under the age of 1). People love to tell me how I won't just be able to "nip out of the house" and a day trip to the zoo won't be just a fun day out, it will be a nightmare. Now obviously childminding wasn't a 24/7 thing, I didn't have sleep deprivation and I did have my evenings and weekends to just pop out without any preparation. However there were numerous occasions when we had day trips out to the zoo. At any given time 2 or 3 children were under my watch and I was solely responsible for fulfilling their needs and ensuring their safety. Yes, getting out of the house was a bit of a mission (anyone who has tried to get 5 children all wearing shoes and coats at the same time before anyone has managed to remove anything will know that) but it was worth it. There were embarrassing tantrums in places like zoos, play centres and all sorts but once again I loved it. There was never a moment where it made me doubt having children and that was caring for other people's children, some of whom were not at all well behaved. So I think, taking a day trip to the zoo with 1 or 2 children of my own is possible. It won't be easy but it would be entirely worth it to give my kids a nice day out, spend some quality time together and share my love of animals with them. Furthermore we have a very supportive family network so the odds of me going anywhere alone with kids is slim, there'll always be someone wanting to join the party (probably a grandparent wanting to soak up the grandkids as much as possible and spoil them rotten)!
Finally, I KNOW CHILDREN ARE FOR LIFE. I know that I'm young but I have had a damn good life so far. I have done many of the things I want to do and with all the complications regarding getting pregnant we want to start trying as soon as possible. I'm not going to mess my life up by choosing to have children now (I'm not even that young - I'm 23!). Not to mention the fact that I'm not planning on falling off the earth when middle aged; for example, if I have 2 children in the next 7 years I will be 30. When they are 20 years old and relatively self sufficient I will only be 50 with a hell of a lot of life left ahead of me. I want to be young enough to run around with my kids. I'm not saying that choosing to have kids when you're older is in any way bad or wrong, it's just not for me. Plans may not work out, it may take me 10 years to get pregnant which would make me 33 anyway. With fertility treatments it is always better to start young as there is a high rate of success so I intend to.
So when people say to me that I don't know how hard it's going to be, I have a relatively good idea. I'm sure there are things I've not thought about but parenthood is a learning curve and I am prepared for that, no matter how hard it gets.
Needless to say, I don't actually respond to people with any of these points. I usually just smile and say I'm sure I'll be fine. Anybody who is of any importance knows about my hopes for my future and also about the journey I'm taking to get there. Anybody who doesn't, they have their opinion and that's fine but I know my own mind and I'm not rushing into anything. Before you judge someone or try to talk them out of something, take a minute to consider they might be going through something very different to what you imagine.
Firstly, I am in no way expecting having children to be "easy", I'd love to be a stay at home mum but I do appreciate that it's probably a LOT harder than the job I do on a daily basis. I don't want children because I think it'll be easy. I want children because I want to bring life into the world, raise it alongside ALS and have someone to pass on my knowledge to and love unconditionally. I know that I will probably be the hardest (and definitely longest) journey of my life but I am still excited for it.
Secondly, the process of having children will, for ALS and myself, be arduous in itself. There is a lot of time, effort and unpleasant procedures that is going to go into ensuring that any child we have can be healthy. The sheer amount of work that will go into creating any pregnancy we achieve is going to be massively difficult in itself and that's before a child is even created, but I'm fully prepared for that because I so desperately want to be a mother and want us to complete our family. Obviously this is not something that people know so I can't hold it against them when they say that I'm looking at motherhood through rose tinted glasses.
Thirdly, I spent my first year or so after I left school childminding alongside my mother. At our maximum we would have 5 children under the agae of 3 (2 of whom were under the age of 1). People love to tell me how I won't just be able to "nip out of the house" and a day trip to the zoo won't be just a fun day out, it will be a nightmare. Now obviously childminding wasn't a 24/7 thing, I didn't have sleep deprivation and I did have my evenings and weekends to just pop out without any preparation. However there were numerous occasions when we had day trips out to the zoo. At any given time 2 or 3 children were under my watch and I was solely responsible for fulfilling their needs and ensuring their safety. Yes, getting out of the house was a bit of a mission (anyone who has tried to get 5 children all wearing shoes and coats at the same time before anyone has managed to remove anything will know that) but it was worth it. There were embarrassing tantrums in places like zoos, play centres and all sorts but once again I loved it. There was never a moment where it made me doubt having children and that was caring for other people's children, some of whom were not at all well behaved. So I think, taking a day trip to the zoo with 1 or 2 children of my own is possible. It won't be easy but it would be entirely worth it to give my kids a nice day out, spend some quality time together and share my love of animals with them. Furthermore we have a very supportive family network so the odds of me going anywhere alone with kids is slim, there'll always be someone wanting to join the party (probably a grandparent wanting to soak up the grandkids as much as possible and spoil them rotten)!
Finally, I KNOW CHILDREN ARE FOR LIFE. I know that I'm young but I have had a damn good life so far. I have done many of the things I want to do and with all the complications regarding getting pregnant we want to start trying as soon as possible. I'm not going to mess my life up by choosing to have children now (I'm not even that young - I'm 23!). Not to mention the fact that I'm not planning on falling off the earth when middle aged; for example, if I have 2 children in the next 7 years I will be 30. When they are 20 years old and relatively self sufficient I will only be 50 with a hell of a lot of life left ahead of me. I want to be young enough to run around with my kids. I'm not saying that choosing to have kids when you're older is in any way bad or wrong, it's just not for me. Plans may not work out, it may take me 10 years to get pregnant which would make me 33 anyway. With fertility treatments it is always better to start young as there is a high rate of success so I intend to.
So when people say to me that I don't know how hard it's going to be, I have a relatively good idea. I'm sure there are things I've not thought about but parenthood is a learning curve and I am prepared for that, no matter how hard it gets.
Needless to say, I don't actually respond to people with any of these points. I usually just smile and say I'm sure I'll be fine. Anybody who is of any importance knows about my hopes for my future and also about the journey I'm taking to get there. Anybody who doesn't, they have their opinion and that's fine but I know my own mind and I'm not rushing into anything. Before you judge someone or try to talk them out of something, take a minute to consider they might be going through something very different to what you imagine.
Tuesday, 1 September 2015
Always look on the bright side...
I've been feeling pretty rubbish for the last week or so. Last week I developed a load of mouth ulcers which pretty much prevented me eating anything that required chewing, needless to say I had a lot of soup. I felt generally drained all week and couldn't do my usual exercise. A few days later (on the first day of my 4 day weekend) I came out with a stinking cold. I dosed myself up as we were going away for the weekend and managed to feel okay for our trip to the zoo on Saturday and ALS' first strongman competition on Sunday (he did excellent by the way!!).
Bank holiday Monday was not pretty. I'd kept the cold at bay for a few days but the amount of paracetamol and such I'd taken caused havoc with my stomach so I spent my day absolutely full of cold and dashing backwards and forwards to the toilet.
The reason I'm explaining all of this is because this is what my life was constantly like a few years ago. I'd get a nasty virus like this that would knock me off my feet for a couple of weeks probably once a month. I was sick a LOT and it meant that I just had to carry on. I couldn't take time off work every time I got a bad cold or something because I'd never be there so unless I was being physically sick I always dragged myself into work.
Cue this morning (Tuesday) when I get to work feeling very sorry for myself. Having not had a nasty cold or bug for nearly 2 years now thanks to getting myself a lot fitter and healthier I suddenly don't know how to cope any more and have been a lot more self pitying than I should. It was only when someone asked me this morning why I was at work when I realised that I could easily handle a cold. I was at work because I hadn't even considered taking the day off - this wasn't "being sick", it was just a bad few days and a part of life for me. Plus people seriously abuse the word "sick day". Such as coworkers who would take a day off for a hangover... here's an idea, don't get drunk on a work night?
Long story short I've been cranky and grumpy but tonight I instantly feel better and it's for such a simple reason. I just had a little walk to the local shop to stock up on essentials and on the way I noticed a plant pot in a public area where someone had obviously just ripped the flowers out and scattered them on the floor around it along with copious amounts of soil. It reminded me just how selfish and unnecessarily hurtful people can be (I'm guessing the flowers never did anything to them). On the way home, however, I walked past the same plant pot, looked up and saw the most beautiful sunset. The sky was all different shades of blue, red, purple and orange. It made me think that even in the most ugly situations there can be beauty and there's almost always a positive somewhere if you look hard enough. I'm still annoyed that people vandalised public property but if I'd not stopped I wouldn't have seen that sunset.
So next time you're feeling crap about something, stop and take a full 360 view of it (whether physically or metaphorically) and hopefully you'll find something positive somewhere along the way.
Bank holiday Monday was not pretty. I'd kept the cold at bay for a few days but the amount of paracetamol and such I'd taken caused havoc with my stomach so I spent my day absolutely full of cold and dashing backwards and forwards to the toilet.
The reason I'm explaining all of this is because this is what my life was constantly like a few years ago. I'd get a nasty virus like this that would knock me off my feet for a couple of weeks probably once a month. I was sick a LOT and it meant that I just had to carry on. I couldn't take time off work every time I got a bad cold or something because I'd never be there so unless I was being physically sick I always dragged myself into work.
Cue this morning (Tuesday) when I get to work feeling very sorry for myself. Having not had a nasty cold or bug for nearly 2 years now thanks to getting myself a lot fitter and healthier I suddenly don't know how to cope any more and have been a lot more self pitying than I should. It was only when someone asked me this morning why I was at work when I realised that I could easily handle a cold. I was at work because I hadn't even considered taking the day off - this wasn't "being sick", it was just a bad few days and a part of life for me. Plus people seriously abuse the word "sick day". Such as coworkers who would take a day off for a hangover... here's an idea, don't get drunk on a work night?
Long story short I've been cranky and grumpy but tonight I instantly feel better and it's for such a simple reason. I just had a little walk to the local shop to stock up on essentials and on the way I noticed a plant pot in a public area where someone had obviously just ripped the flowers out and scattered them on the floor around it along with copious amounts of soil. It reminded me just how selfish and unnecessarily hurtful people can be (I'm guessing the flowers never did anything to them). On the way home, however, I walked past the same plant pot, looked up and saw the most beautiful sunset. The sky was all different shades of blue, red, purple and orange. It made me think that even in the most ugly situations there can be beauty and there's almost always a positive somewhere if you look hard enough. I'm still annoyed that people vandalised public property but if I'd not stopped I wouldn't have seen that sunset.
So next time you're feeling crap about something, stop and take a full 360 view of it (whether physically or metaphorically) and hopefully you'll find something positive somewhere along the way.
Subscribe to:
Posts (Atom)