I promised an update after today's appointment and honestly, I couldn't wait to get to my laptop and write it all down - mostly so I don't forget anything. Documenting this journey for us to look back on is so important to me, not to mention there's a LOT of information to take in.
We headed to Sheffield for our appointment in plenty of time because as anyone who lives in the UK knows, parking at hospitals is horrendous! Surprisingly traffic was kind to us and we managed to get parked and find our way straight away so we ended up half an hour early for our appointment. As the appointment was in the children's department (genetics appointments always seem to be for some reason) we were watching families interacting and little ones running around. The most striking thing for me was seeing a woman breastfeeding, I'm not sure why but it really made it hit home how much I want a baby. I know that this won't be a quick process and that's okay. We were told that from this point forwards it'll probably be around a year until the actual treatment starts which works out nicely as we get married in February and have our honeymoon in late July/early August. If we were trying to get pregnant naturally that would be when we were wanting to start (after all, I want to be able to enjoy a cocktail or two on my honeymoon) so the timing is perfect. I'm expecting it'll probably be longer than that because nothing ever seems to go to plan but that's okay, we're working towards starting our family and I couldn't be happier.
I won't bore you with all the information that we were given about the process as the blog will cover it as it goes on but basically today's appointment was about us being provided will all the information we need for the whole process. We were told what it entails, how long it takes, any risks, the chances of success and various other bits and bobs. The geneticist also took a bit of a history from us but as we'd given a very detailed history at the appointment with our local genetics team it was mostly just covering the basics. They took blood samples from us both and gave us a form to get a blood sample from ALS' dad (they need this to create the test for the embryos). We've already spoke to his dad about it and he's more than happy to help us along in the process any way we need.
The key things that we got from today (most of which we already knew) were:
1. We get 3 attempts on the NHS, providing I respond well to the treatment and it just fails through us being unlucky. If I don't respond well to the first cycle, they won't fund more.
2. We only get 1 healthy child out of this process. If our first cycle works, we won't get a further NHS attempt. However we can freeze any other healthy embryos so later on if we want to pay for a further lot of treatment, we only have to pay for the implantation process and not all the hormone stimulation, egg collection and fertilisation (which is the expensive bit).
3. By the end the chances are about the same as a normal couple having IVF providing our fertility is good (there's no reason it shouldn't be). We'll have less successful embryos due to the ones carrying the chromosome from ALS' mum not being suitable, but as we don't have fertility issues and are younger than most couples trying IVF it balances out the odds.
I think that's the key points but I do have a lot of information swimming around my head at the moment.
I'm not really sure how many people read this blog, if any, although I did notice my last few posts have gone unread. As I've said before it's mostly for my records but if there is anyone out there with any queries or anything you want to ask I will answer questions as honestly as possible so feel free to leave a comment.
Thursday, 20 August 2015
Sunday, 16 August 2015
Disclaimer
Once again it's been 3 months since I've posted anything and a lot has happened. I'm mostly doing this for myself as a record of our journey and if I can help even just one other person along their journey then that'd be amazing, but I can't promise to post regularly.
Okay, that's my disclaimer out the way, now onto what's been happening...
We had our first appointment eventually which was tough but gave us a lot of the information we needed. The woman we saw was lovely and really helpful and gave us a few options for places to be referred to. We decided to go with Guys & St Thomas NHS in London for the process as they have better technology and results than our local options. Fortunately we can have the treatments done by them in Sheffield which is a lot closer to home - we only have to travel to London once.
This Thursday we have our first appointment in Sheffield to discuss the actual process, what we need to do, how long it takes etc. so I'll post an update after that. Needless to say we are glad we started when we did as it's now 6 months since we first spoke to the GP about getting the process started and we're only just getting our first appointment with the relevant people.
In other news, we have moved out of our house into a rented flat for the time being whilst our new house is being finished. It should be ready just before Christmas which will give us time to get in and settled before the wedding in February. The wedding itself has been put on the back burner unfortunately as we've both been trying to cram in a load of overtime to get some extra money saved up, sort the house out, sort the new flat out and all the other things.
We also had a very poorly cat in June who managed to eat some carpet and got the threads stuck around his throat and intestines requiring some pretty major surgery, a long recovery and a VERY expensive vets bill (needless to say we've purchased pet insurance since). It was nice to see how worried ALS got about our little fur baby and definitely reassured me (and him I hope) that he's going to make a great dad.
I've had a few ideas that I've been wanting to post about and not got round to so hopefully in the next couple of weeks, depending on time, I will get a good few posts in about various things.
Okay, that's my disclaimer out the way, now onto what's been happening...
We had our first appointment eventually which was tough but gave us a lot of the information we needed. The woman we saw was lovely and really helpful and gave us a few options for places to be referred to. We decided to go with Guys & St Thomas NHS in London for the process as they have better technology and results than our local options. Fortunately we can have the treatments done by them in Sheffield which is a lot closer to home - we only have to travel to London once.
This Thursday we have our first appointment in Sheffield to discuss the actual process, what we need to do, how long it takes etc. so I'll post an update after that. Needless to say we are glad we started when we did as it's now 6 months since we first spoke to the GP about getting the process started and we're only just getting our first appointment with the relevant people.
In other news, we have moved out of our house into a rented flat for the time being whilst our new house is being finished. It should be ready just before Christmas which will give us time to get in and settled before the wedding in February. The wedding itself has been put on the back burner unfortunately as we've both been trying to cram in a load of overtime to get some extra money saved up, sort the house out, sort the new flat out and all the other things.
We also had a very poorly cat in June who managed to eat some carpet and got the threads stuck around his throat and intestines requiring some pretty major surgery, a long recovery and a VERY expensive vets bill (needless to say we've purchased pet insurance since). It was nice to see how worried ALS got about our little fur baby and definitely reassured me (and him I hope) that he's going to make a great dad.
I've had a few ideas that I've been wanting to post about and not got round to so hopefully in the next couple of weeks, depending on time, I will get a good few posts in about various things.
Sunday, 17 May 2015
Disappointment Number One!
From reading many IVF/PGD blogs I have learned that there is nothing more important on this journey than patience. You're likely to end up disappointed, things may not work out how you planned, it could take a lot longer than expected and in reality, it may not happen at all.
We had our first disappointment this week when our first appointment with the genetics team was cancelled because the woman was off sick. Obviously this cannot be helped but they haven't even rearranged it, we just have to wait to hear from them. We've been waiting for this appointment since February so goodness knows how long it'll be before it actually happens now. It's only a minor hitch but I was definitely looking forward to at least getting the process in motion and just learning a bit more about it from an actual medical professional.
Time to just wait and see what happens, I guess...!
Tuesday, 21 April 2015
News!
Okay, so I have realised I'm probably not cut out for blogging. I don't get sat down to write anything often enough and then when I try, so much has happened that all my thoughts are jumbled!
Since my last post ALS and I have been really busy so I'll try to categorise to make things simpler:
Powerlifting
ALS became the British and European Junior Powerlifting for his weight category last year and broke world records in the squat and deadlift in the process. I won't go into too much detail here for those who don't know what it is but if it creates any interest I'll put more of a focus on it in the blog.
I tried my first competition on 1st March this year and amazingly managed to beat my own personal bests, qualify for the British Championships and break a British deadlift record in the process.
On 11th April both ALS and I competed in the British Championships. I won my class and broke a world deadlift record and ALS came third in his category (a far more competitive category as he has not graduated from junior to adult). Most importantly this meant we both qualified for the European Championships in Coventry, UK in June this year so lots of training will be going into this.
A lot of people, my parents especially, are very concerned about me doing this with my "condition" but I've suffered with far less pain and fatigue since training, I always warm up well, never push myself TOO hard and always lift under the advice of ALS who is well trained. So yes, as I get older I probably won't do very well compared to others of my age and weight because I have to respect the limits of my body, but for now it's good fun and I'm only doing as much as I can handle.
Leisure Time
I have been trying to find ways of helping myself relax and unwind lately and have two new favourite past times. I have taken up yoga, for now it's just once a week and due to the hypermobility I have to be very careful with my joints but I thoroughly enjoy it and feel a lot more relaxed during and afterwards.
My other new love (an old love rekindled) is reading. As a child I read constantly, I always had at least a couple of books on the go and never really watched much TV or played video games if the option of reading was there. Since I started with my medical problems I've struggled somewhat with concentration and I found it hard to read and take anything in. Towards the end of last year I started reading Philip Pullman's "His Dark Materials" series. They are young adult novels really so quite basic language and easy to understand and I managed to use them to get myself back into reading and really enjoyed them as well. I'm currently reading Stephen King's "The Dark Tower" series which an absolutely phenomenal read. I only started about a month or two ago and I've already read the first 3 books (which are not particularly short). I can't put them down and I use my bath time to read to make it extra relaxing.
Future Plans
We have booked our wedding for 7th February 2016 - we have a church and reception venue but as of yet nothing else booked. Definitely feels very real now and we'll have to start ironing out the details asap. ALS' best man is in the Navy and being posted to the other side of the world in May for 2 years so there's a high chance he won't make it which will throw a spanner in the works but we'll figure something out... maybe a Skype speech?
Our house is now sold subject to contract and things are going well. We are in the process of looking for somewhere to rent until our new house will be finished (should have been October but now more likely to be December). The buyers are coming to visit again tomorrow and hopefully by then we should have a better idea of a timescale for moving out.
Most excitingly we finally got our geneticist appointment through today (after a lot of faffing around, letters and phonecalls to and from the hospital). The service is run from a larger hospital in the city but the person we are seeing is coming to our local hospital which is great, except it's the hospital I work in and the room we are booked into is in the clinic where all the doctors I work for see their patients... this could get a bit awkward. Hopefully I won't bump into anyone, it's not a process we're discussing with anyone at the moment as it's so far away that anything will actually happen!
Well, I think that's a reasonable update of how things have been for the last few months - I seem to be getting quite a lot of page views which surprised me to be honest but I'd love to hear from anyone who's reading this so feel free to leave a comment :)
Since my last post ALS and I have been really busy so I'll try to categorise to make things simpler:
Powerlifting
ALS became the British and European Junior Powerlifting for his weight category last year and broke world records in the squat and deadlift in the process. I won't go into too much detail here for those who don't know what it is but if it creates any interest I'll put more of a focus on it in the blog.
I tried my first competition on 1st March this year and amazingly managed to beat my own personal bests, qualify for the British Championships and break a British deadlift record in the process.
On 11th April both ALS and I competed in the British Championships. I won my class and broke a world deadlift record and ALS came third in his category (a far more competitive category as he has not graduated from junior to adult). Most importantly this meant we both qualified for the European Championships in Coventry, UK in June this year so lots of training will be going into this.
A lot of people, my parents especially, are very concerned about me doing this with my "condition" but I've suffered with far less pain and fatigue since training, I always warm up well, never push myself TOO hard and always lift under the advice of ALS who is well trained. So yes, as I get older I probably won't do very well compared to others of my age and weight because I have to respect the limits of my body, but for now it's good fun and I'm only doing as much as I can handle.
Leisure Time
I have been trying to find ways of helping myself relax and unwind lately and have two new favourite past times. I have taken up yoga, for now it's just once a week and due to the hypermobility I have to be very careful with my joints but I thoroughly enjoy it and feel a lot more relaxed during and afterwards.
My other new love (an old love rekindled) is reading. As a child I read constantly, I always had at least a couple of books on the go and never really watched much TV or played video games if the option of reading was there. Since I started with my medical problems I've struggled somewhat with concentration and I found it hard to read and take anything in. Towards the end of last year I started reading Philip Pullman's "His Dark Materials" series. They are young adult novels really so quite basic language and easy to understand and I managed to use them to get myself back into reading and really enjoyed them as well. I'm currently reading Stephen King's "The Dark Tower" series which an absolutely phenomenal read. I only started about a month or two ago and I've already read the first 3 books (which are not particularly short). I can't put them down and I use my bath time to read to make it extra relaxing.
Future Plans
We have booked our wedding for 7th February 2016 - we have a church and reception venue but as of yet nothing else booked. Definitely feels very real now and we'll have to start ironing out the details asap. ALS' best man is in the Navy and being posted to the other side of the world in May for 2 years so there's a high chance he won't make it which will throw a spanner in the works but we'll figure something out... maybe a Skype speech?
Our house is now sold subject to contract and things are going well. We are in the process of looking for somewhere to rent until our new house will be finished (should have been October but now more likely to be December). The buyers are coming to visit again tomorrow and hopefully by then we should have a better idea of a timescale for moving out.
Most excitingly we finally got our geneticist appointment through today (after a lot of faffing around, letters and phonecalls to and from the hospital). The service is run from a larger hospital in the city but the person we are seeing is coming to our local hospital which is great, except it's the hospital I work in and the room we are booked into is in the clinic where all the doctors I work for see their patients... this could get a bit awkward. Hopefully I won't bump into anyone, it's not a process we're discussing with anyone at the moment as it's so far away that anything will actually happen!
Well, I think that's a reasonable update of how things have been for the last few months - I seem to be getting quite a lot of page views which surprised me to be honest but I'd love to hear from anyone who's reading this so feel free to leave a comment :)
Friday, 27 February 2015
Exciting news!
Well... another 6 weeks or so has gone since I updated this page but I have been very busy reading other blogs and following the journeys of some amazing women.
I'm off work today through until Wednesday next week seeing as I have my first powerlifting competition on Sunday and today we made the exciting first step on our journey to becoming a family.
Now I know I've talked a lot about me but the main focus of this blog is going to be our attempt(s) at PGD IVF which includes diagnosing certain genetic conditions before the embyros are implanted to prevent them from being passed on to your children. Our reason for doing this is because ALS lost his mum to Huntington's Disease about 7 years ago now and may well carry the gene himself. He doesn't want to know if he has the gene but also doesn't want to risk passing it on to any future generations so by using PGD, not only can we protect our children but we can do it in such a way that we don't find out if he has the gene or not - so many things can go wrong during the IVF process it's not uncommon to not get any suitable embryos even without the HD gene being tested for.
Anyway, we went to see his GP this morning to ask for a referral to a Clinical Geneticist who will help us to apply for NHS funding for the process. The rules generally are that you get 3 funded attempts but only if you have no living children from the relationship (and other certain criteria relating to age, smoker status etc.) so if it works on our first attempt we'd have to pay for the IVF if we wanted to try for a second child - but it's still amazing that they're willing to help us protect our future family from this horrible disease and give us a good chance at it.
I'll explain more once we know more about the process but the idea we've been given is that it can take 1-2 years just to get the funding in place and we want to be able to start trying for babies once we're married (hopefully in February next year) and in our new house (hopefully in October this year). So we have a lot going on at the moment and it doesn't feel significant but we have made a MASSIVE step today - which was surprisingly easy. The GP pretty much said straight away that he'd write up a referral and we'd get an appointment through the post... we'll wait and see but ALS always seems to have far more competent GPs than myself so I'm keeping my fingers crossed.
If by some miracle it does happen quicker than we'd imagine and we get the funding in place this year, that's great and we can just delay the IVF cycle until next year in the comforting knowledge that we don't have to worry about applying for funding.
I'm sure to some people this doesn't sound like a lot but with the HD gene in the family we have to start preparing to have a baby a long time before we actually want to have one. We can't just one day decide that we're ready, stop contraception and get going so it's nice to be at least a tiny way into that journey :)
I'm off work today through until Wednesday next week seeing as I have my first powerlifting competition on Sunday and today we made the exciting first step on our journey to becoming a family.
Now I know I've talked a lot about me but the main focus of this blog is going to be our attempt(s) at PGD IVF which includes diagnosing certain genetic conditions before the embyros are implanted to prevent them from being passed on to your children. Our reason for doing this is because ALS lost his mum to Huntington's Disease about 7 years ago now and may well carry the gene himself. He doesn't want to know if he has the gene but also doesn't want to risk passing it on to any future generations so by using PGD, not only can we protect our children but we can do it in such a way that we don't find out if he has the gene or not - so many things can go wrong during the IVF process it's not uncommon to not get any suitable embryos even without the HD gene being tested for.
Anyway, we went to see his GP this morning to ask for a referral to a Clinical Geneticist who will help us to apply for NHS funding for the process. The rules generally are that you get 3 funded attempts but only if you have no living children from the relationship (and other certain criteria relating to age, smoker status etc.) so if it works on our first attempt we'd have to pay for the IVF if we wanted to try for a second child - but it's still amazing that they're willing to help us protect our future family from this horrible disease and give us a good chance at it.
I'll explain more once we know more about the process but the idea we've been given is that it can take 1-2 years just to get the funding in place and we want to be able to start trying for babies once we're married (hopefully in February next year) and in our new house (hopefully in October this year). So we have a lot going on at the moment and it doesn't feel significant but we have made a MASSIVE step today - which was surprisingly easy. The GP pretty much said straight away that he'd write up a referral and we'd get an appointment through the post... we'll wait and see but ALS always seems to have far more competent GPs than myself so I'm keeping my fingers crossed.
If by some miracle it does happen quicker than we'd imagine and we get the funding in place this year, that's great and we can just delay the IVF cycle until next year in the comforting knowledge that we don't have to worry about applying for funding.
I'm sure to some people this doesn't sound like a lot but with the HD gene in the family we have to start preparing to have a baby a long time before we actually want to have one. We can't just one day decide that we're ready, stop contraception and get going so it's nice to be at least a tiny way into that journey :)
Saturday, 17 January 2015
Sorry
Once again I've neglected my blog but in the last few weeks I have had a lot of pantomime rehearsals (show starts a week today) and been given my job permanently so back to full time.
I'm currently meant to be getting ready for a party but instead I'm trawling the internet looking for what could be causing my latest issue. My fingers on my right hand are twisted, only from the top knuckle upwards, but so that the nail is virtually facing my little finger. I have no idea when this started but it's currently very noticeable and would probably explain all the pain I've been having in my fingers.
Parties aren't really my thing anyway. Due to the amount of medication I'm on I can't drink really so I'm designated driver, which I don't mind, but by 9pm everyone is drunk, I'm ready for bed and ALS is having a good time so I don't want to drag him away. Not my idea of fun at all. I've set myself a limit of 11pm. I have a 5-6 hour rehearsal tomorrow so I need to be in some sort of a fit state.
Ah well... off to the party I guess.
I'm currently meant to be getting ready for a party but instead I'm trawling the internet looking for what could be causing my latest issue. My fingers on my right hand are twisted, only from the top knuckle upwards, but so that the nail is virtually facing my little finger. I have no idea when this started but it's currently very noticeable and would probably explain all the pain I've been having in my fingers.
Parties aren't really my thing anyway. Due to the amount of medication I'm on I can't drink really so I'm designated driver, which I don't mind, but by 9pm everyone is drunk, I'm ready for bed and ALS is having a good time so I don't want to drag him away. Not my idea of fun at all. I've set myself a limit of 11pm. I have a 5-6 hour rehearsal tomorrow so I need to be in some sort of a fit state.
Ah well... off to the party I guess.
Wednesday, 10 December 2014
It's been a while...
Apparently I'm not as dedicated to this blogging thing as I intended to be but it's just been so busy lately. In the last 3 months:-
1. ALS and I put an early deposit down on a new build house.
2. We have been trying to decorate every room of his current house (in the last 3 weeks)
3. I've been up and down with illness.
4. I've had more than a few mini breakdowns.
5. I've had my hours cut back to 4 days instead of 5 at work.
6. I've finally had an interview for my job (permanently) arranged which is next Thursday.
That's just a brief run down but believe me it's been hectic, not to mention preparations for Christmas. I have a blog post mostly written that I'll post in the next couple of days but I just thought I'd update where I've been and how things are going.
On the Ehlers-Danlos front I am more than sure that it's exactly what my problem is and have found a doctor who's swapped my medication around to focus more on the pain side of things rather than sleep. I've got an appointment next week to review things so we'll see how that goes - I'm hoping she'll send me to a Clinical Geneticist, especially if I explain we're looking to have children in the next few years and want to know the situation.
Wish me luck!
1. ALS and I put an early deposit down on a new build house.
2. We have been trying to decorate every room of his current house (in the last 3 weeks)
3. I've been up and down with illness.
4. I've had more than a few mini breakdowns.
5. I've had my hours cut back to 4 days instead of 5 at work.
6. I've finally had an interview for my job (permanently) arranged which is next Thursday.
That's just a brief run down but believe me it's been hectic, not to mention preparations for Christmas. I have a blog post mostly written that I'll post in the next couple of days but I just thought I'd update where I've been and how things are going.
On the Ehlers-Danlos front I am more than sure that it's exactly what my problem is and have found a doctor who's swapped my medication around to focus more on the pain side of things rather than sleep. I've got an appointment next week to review things so we'll see how that goes - I'm hoping she'll send me to a Clinical Geneticist, especially if I explain we're looking to have children in the next few years and want to know the situation.
Wish me luck!
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