Sunday 9 February 2014

Options...

I don't even think there is any point in me saying how bad I am at blogging, it's fairly obvious! I'm just going to jump right in and act like I blogged yesterday. 

So, we found out my partner is a carrier, what options are we left with? 

Well, firstly, get pregnant and take the 50% risk of having a child with CF, secondly, IVF using PGD to select an embryo without CF, thirdly, IVF using a donor egg from a donor found to be free of the CF gene, fourthly, IUI using donor sperm and fifthly adoption.

We have ruled out both getting pregnant and taking the risk and IUI using donor sperm. This is a personal choice we've made, nothing against anyone who takes these options, they're just not he right options for us. 

This leaves us with PGD, egg donation and adoption. PGD would be the only option that would result in a child that was biologically ours but it is very expensive, rarely funded and has a low success rate so whilst we haven't ruled it out we feel it's unlikely this will be our next step on our path to parenthood. Egg donation and adoption both have their positives and negatives, it's very hard to make a choice and we tend to too and fro between the two. If we chose to try egg donation and it failed we could still go down the route of adoption but we would have to wait 6 months after any fertility treatment ended before we could start the adoption process. 

Either way we're still not quite in a position to move forward quite yet so we still have some more thinking time. I'm still trying to get my body in the best position for both pregnancy and motherhood, my last hba1c was 8.2% so I'm slowly getting there. I've had a few issues with other health stuff but fingers crossed they won't cause any major problems.

Right, thats enough for now, I'll try and update again in less than 6 months time!

Monday 8 July 2013

Next stage in life?

So, quite obviously I haven't blogged for a long time, I'm a pretty bad blogger. There is how ever a part of my life I want to document so I'm going to try harder from now on. I want something to look back on when I (hopefully) get my happy ending so I never ever take it for granted. The happy ending I'm hoping for is to become a parent. 

Although me and my boyfriend aren't yet living together we knew that difficulties from CF mean it's very rarely a case of 'wham, bam, thank you mam' and there's a bun in the oven. Also CF pregnancies can put a lot of strain on the body so it is important to be in the best physical condition before becoming pregnant, as I know someone who spent a year getting to the best possible health ready to start trying to conceive (TTC) we decided to go have a little a little chat with the CF doctors long before we were actually ready to start TTC. So that was about a year ago and this little chat resulted in me being advised to go on the pill, not quite what we wanted to hear but a sensible move. Although my weight and lung function were in the OK range to consider pregnancy they told me my bad diabetic control could potentially make pregnancy dangerous for both myself and the baby I was carrying. So I rapidly made an appointment with my GPs family planning nurse and also started a new insulin regime to try and get my hba1c (long term blood sugar level) down from 14.6% to a pregnancy safe 6.5-7%. Following the chat my boyfriend was referred to a genetic councillor to be tested to see if he carried any of the most common mutations for CF. At the time this just felt like a formality, it's only one in approximately 22 people who do have a single mutation so we doubted he would but unfortunately he does have a single copy of the DF508 mutation, the most common mutation to have. When we first found out I cried... a lot! We weren't sure what our options were apart from try naturally and hope we avoided the 50% chance our baby would have of getting CF and this to me isn't an option so it felt like our chances of being parents were over (we've since found out there are other options but I'll talk about those another time.) I wasn't one of those girls who planned a wedding as a little girl but I have always wanted to be a mum and it felt so horribly cruel to have my hopes ripped from me at that time. I didn't want to be near anyone who had kids or was pregnant. Seeing young children was enough to set me off crying, not good when I can see a local playgroup from my window. Looking back I should've asked to see my hospital's CF psychologist, I wasn't looking after myself and my weight and lung function dropped a fair bit. Things did pick up though, once we realised it didn't mean 'game over', and I'm fairly stable, both physically and mentally, now.

So yeah, that was August/September 2012 and I'd definitely recommend anyone with CF who wants children 'one day' to get their partner tested once they're serious, long before they actually want to start TTC as although it's unlikely they will be a carrier its far from impossible and if they are then there are options but they aren't perfect, they're potentially very expensive and they take some time to get your head round before you can make the decisions that a right for you as a couple.

As for us, we're currently in a limbo, we've talked lots about the different options, ruled some out and we think we have a plan for when we are ready which will be soon after we start living together, hopefully in the early part of 2014. I'm still working on my diabetes and have my hba1c down to 9.2% so still a way to go but big improvements, I'm maintaining a healthy weight and working on getting my lung function as high as possible and keeping it there.

Very sorry for the long post, I rarely write anything but when I do it's a bloody essay!

Thursday 10 January 2013

2013

Sorry for my lack of blogging, I started this blog as I have an opinion on pretty much everything and I wanted a place I could voice these opinions with the world... except now I have writers block and can't seem to articulate them. This quick post is mostly about dropping by to show I haven't forgotten I have a blog!

Welcome to 2013 everyone. To be honest I don't really get the whole buzz around new year or understand when people say things like 'new year, new me' or 'this is going to be my year'! The way I see it is 2012 had ups and downs but on the whole I didn't fuck anything up too badly and I'm sure 2013 will have ups and downs and again I'll try not to screw things up. I just think if during the year something in your life needs changing then change it, do it straight away rather wait until Jan 1st, otherwise you're wasting time being unhappy and/or unhealthy. Although I will admit that after the Christmas binge January is the perfect time to think about that new healthy eating regime but I'm considering that just good timing rather than an actual resolution. ;)

Wednesday 12 December 2012

Christmas spirit

So my tree and decorations are up, Christmas cards are written, almost all my presents are purchased and even a fair few have been handed out but I seem to be lacking in Christmas spirit this year.

I love Christmas, I'm one of those people who still has an advent calendar and wishes Santa was real. I always find some excuse to dress up Christmassy and consider tinsel to be the perfect accessory to any outfit during the month of December. This year however the yuletide period seems a little dull, don't get me wrong I'm looking forward to the day but just struggling to enjoy the build-up. I wonder is it to do with the fact many places have had their decorations up since November, or that in order to afford my presents I've been hunting bargains and good deals since early September, I wrote my cards over a month ago which I bought in the January sales at the beginning of the year. You see I wanted to be prepared as every year for as long as I can remember I've been ill in the run up to Christmas, last year in the 7 weeks before Christmas I spent 4 of them on 2 courses of IV antibiotics (last course finishing on the 23rd Dec) with a week of oral antibiotics between them. The year before I got out of hospital mid December and was ill again a week later, back into hospital in January, the year before that... well yeah, you get the picture. This year though I'm feeling fairly well, I'd made sure I was well prepared so I wouldn't get stressed when I got ill and still wasn't sorted but by spreading it all out I haven't got ill, I haven't been in germ ridden shops with people sneezing all over the last selection box and sadly I think that's sort of sanitised it all, maybe the mad rush up to Christmas is actually the fun part. I'm not talking doing Christmas shopping on Christmas Eve mad rush, just by this point, still having 1/2 my presents left to get, nothing wrapped and a pile of freshly written but unhanded out cards. Still I'd rather be healthier without that warm Christmas glow.

I know it's nothing to with no longer liking Christmas as I had some Christmas spirit for fake Christmas (one of my close friends works the ski season as a chalet girl so we always have a fake Christmas before she leaves). Come December 25th I'll be spending the day with some wonderful people, splitting the day between my family and my boyfriends (I'm very lucky that I have great in-laws who have the same sort of view of Christmas as my family, not religious, but see it as a day to spend with the people you love) and I am pretty sure that once I'm sat in a silly hat, eating and pulling crackers with the people who are most important to me in this world then I will be full of the joys of Christmas and really, when you think about it, that's the only day you actually need to have Christmas spirit!

(That said I'm currently watching 'The Muppets Christmas Carol' so by tomorrow I'll probably be wearing tinsel like a scarf and badly singing Christmas carols to random strangers! Haha.)

Tuesday 11 December 2012

So, what is Cystic Fibrosis (CF)?

So in the last post I mentioned I have Cystic Fibrosis, also known as CF, and other associated health problems. I'm not planning for this blog to be hugely about my health but a) it's a large part of my life, I can't ignore it and b) my health has affected me and my mentality on life and also causes me to make decisions and form opinions I don't believe I would if I didn't have CF.

Firstly lets start with what is CF? CF is often referred to as a lung disease, this isn't strictly true, CF effects every cell in the body. Mutations in the genetic material prevents the movement of salt and water in and out of the cells within the body. Now I don't know about you but I hear mutations and I'm thinking x-men and superpowers but until it becomes possible to save the world by coughing up wallpaper paste and having the ability to shit oil (enzymes are important) then these are not cool mutations to have! Basically this lack of movement with the salt and water makes bodily secretions thick and sticky, this causes the most problems in the lungs and digestive system. Bacteria grow in the sticky gunk in the lungs causing bad chest infections, lung scarring, eventually leading to the need for a lung transplant. Most people with CF have, due to secretions blocking the pancreas, insufficient pancreatic function and require enzymes to digest their food, missing enzymes with fatty foods tends to be, erm... explosive (see above reference to shitting oil). Some people also have diabetes due to these secretions not allowing insulin to leave the pancreas properly/at all. I'm one of those lucky people! Another problem people can have with CF is cirrhosis of the liver, unlike alcoholic cirrhosis 'CF cirrhosis' is nothing to do with vodka, cider or tennets super strength but caused by thick secretions (yep, those again) scarring the liver. I got cirrhosis fairly young and eventually had a liver transplant aged 14. Other problems/illness's associated with CF are constipation or bowel blockages/DIOS, osteopenia/osteoporosis, gastro-oesophageal reflux disease, arthritis, tachycardia, infertility, vitamin deficiency, etc... So, yeah, as you can see, there isn't much in the body that CF can't royally fuck up!

"How do you get CF?" I hear you say. Well it's genetic illness, you can't catch it, you're born with it. Our genes come in pairs, one from your mother and one from your father, then when you reproduce you pass on one of your pair as does the other person you reproduce with. A person with CF will have a CF mutation (one of over 1500) on both of their genetic pair and a carrier has the 'CF gene' by having a CF mutation on one of their genetic pair, approximately 1 in every 22 people have this CF gene, passed on to them from one of their parents. So if two people who carry the CF gene decide to have a child (or have an unprotected night of passion) there will be a 25% change neither of them will pass on their mutated half of the pair, a 50% chance that one mutation will be passed on to make another carrier or another 25% that both parents pass on their mutation, resulting in CF.

Lastly, in this rather long post, there is no cure for CF. For most people with CF medication only deals with treating symptoms, although a new drug, Kalydeco, has been developed which for people with the genetic mutation G551D, which accounts for approx. 4-5% of the CF population, that treats the cause of CF by allowing salt and water to move round cells as normal. New drugs are in development for other mutations which, whilst not a cure, will lead to much better management of the illness.

Well I think I've waffled on for long enough here. To those who already know all about CF I am sorry for wasting your time with this post but to those who were clueless about it I hope I've given you a better understanding of it all.

Monday 10 December 2012

I introduce... Me

Right, lets get the obligatory introduction post out the way. I'm Kate, I'm in my late 20's and I swear a little too much to be considered ladylike. I hate bad grammar but don't assume mine will be that great. I love my boyfriend beyond words, and my family too. I have Cystic Fibrosis and other health issues associated with it. Massive believer in organ donation, I can't understand why people aren't on the donor register, not like those organs will be much use to you when you're dead!

All opinions (and there will be quite a few) are my own, although others may agree with them!