I promised an update on our lovely boy (thank you for all the comments on FB and email by the way). If I am raising awareness in any small way it is worth it and my pleasure.
He has been having a great year on the whole. His declining lung function (LF is the main measurement of wellness in CF) is hopefully more to do with technique in the test than infection and inflammation - that is the hope anyway, and as always he is being closely monitored. His LF at clinic today was stable, which is to say it was not as high as we would like, but no worse than it has been all year. His height and weight were both great (they really like him to have a little extra weight on him as it is known to help hugely). He was a VERY small and skinny baby and toddler, to see him slightly above average now is just amazing.
Our fantastic CF team at Addenbrookes always talk to us in terms of aggressive, timely treatment. The hope is to preserve his lung health for as long as possible, and amongst many other drugs, he is always on two or three different antibiotics, and we add more as soon as his cough worsens, or the lab grow something from his swabs which is not sensitive to his prophylactic abs. At the moment he is having no extra treatment, and we hope that this will last the summer - there are always more bugs flying around in winter.
He has problems with tummy aches, especially in the mornings, and his dietician is great about helping us suss out why this is. It may be too little Creon (we work out how much he needs on a rough rule of 1 to every 3g of fat, which generally works, but it is not easy to work out, especially with homemade food, so it is sometimes a little trial and error), or it may be slower, stickier guts, which cause him to have blockages, which again, he takes a lot of medication for. But he's had a good month tummywise too.
There is usually some niggling issue bubbling away in the background... He is having some extra physiotherapy input right now, but that is all going well. I queried some of his latest blood results, and I've learnt today that they have known for some time that he has lowered serum levels which indicate a poor immune response. There is not much we can do about this but it will affect how they treat him should he have more chest infections (by which I assume they mean more aggressively). There is ALWAYS something to worry about..... but I guess that is a Mums job.
Thanks for asking, and I'll try and update you every now and again on how he is. Have a great day x
Thursday 29 May 2014
Sunday 25 May 2014
Live life then give life.
So this blog might raise a few eyebrows. Or eye burrows as my daughter likes to call them.
I have a fair few friends waiting for organs. This is not like waiting for your delivery from Amazon of the latest gadget you've been lusting after for awhile, or groceries from Tesco. You don't get listed for a transplant until there is a very high chance of you not making it through another year or so, and it is certainly not a decision taken lightly by doctors or patients. This is a choice between certain death and getting another chance at a healthy life (albeit one with extra medication and maybe a few complications). For someone with CF, it's a chance at a quality of life that they probably haven't experienced since childhood.
Now even before CF had reared it's ugly head in our lives I was a regular blood donor, and back then I knew many people who would say that they wouldn't or couldn't donate blood for all sorts of *pathetic reasons, and I had a tendency to get on my overly moralistic high horse about this attitude, but mostly keep schtum, as I know my goody goody holier-than-thou views are pretty annoying. But with organ donation I find it harder to keep quiet.
You are far more likely to need an organ donation than you are to give one. Think about that. Please.
If you really have thought about it, and you really really can't see past whatever issues you have about organ donation and you choose not to donate, I can't agree, but I'll try and understand your reasons if you explain them to me. Worse are the ignorant few who won't even consider it, or can't be bothered to sign up, or tell their family their wishes.... If you needed a transplant, or your father, mother, sister, brother, child.... would you not jump at the chance?
People with CF make up a large proportion of people on the waiting list for new lungs, and almost half of them will die waiting because of a shortage of donations. Partly due to cross infection issues, there is a strong CF community online, and over the years I have known many people miss the chance of a transplant, and others who made it and now live remarkable almost CF free lives (transplanted lungs do not 'get CF', but other organs don't lose CF, so digestion is still affected, but lungs are not). What an amazing opportunity it can offer. How remarkable that transplants are possible! If only everyone had that chance.
Live life then give life. What ya gonna do with them anyway, right? Sign the register Here
* I realise that only 5% of people donate blood, so I might be offending 95% of people reading this, but I do accept that many people have very valid reasons not to. It's just the 'can't be bothered / just don't really fancy it / my great aunt once removed had a bruise after donating' kind if reasons I am suggesting might be a teeny tiny bit pathetic.
I have a fair few friends waiting for organs. This is not like waiting for your delivery from Amazon of the latest gadget you've been lusting after for awhile, or groceries from Tesco. You don't get listed for a transplant until there is a very high chance of you not making it through another year or so, and it is certainly not a decision taken lightly by doctors or patients. This is a choice between certain death and getting another chance at a healthy life (albeit one with extra medication and maybe a few complications). For someone with CF, it's a chance at a quality of life that they probably haven't experienced since childhood.
Now even before CF had reared it's ugly head in our lives I was a regular blood donor, and back then I knew many people who would say that they wouldn't or couldn't donate blood for all sorts of *pathetic reasons, and I had a tendency to get on my overly moralistic high horse about this attitude, but mostly keep schtum, as I know my goody goody holier-than-thou views are pretty annoying. But with organ donation I find it harder to keep quiet.
You are far more likely to need an organ donation than you are to give one. Think about that. Please.
If you really have thought about it, and you really really can't see past whatever issues you have about organ donation and you choose not to donate, I can't agree, but I'll try and understand your reasons if you explain them to me. Worse are the ignorant few who won't even consider it, or can't be bothered to sign up, or tell their family their wishes.... If you needed a transplant, or your father, mother, sister, brother, child.... would you not jump at the chance?
People with CF make up a large proportion of people on the waiting list for new lungs, and almost half of them will die waiting because of a shortage of donations. Partly due to cross infection issues, there is a strong CF community online, and over the years I have known many people miss the chance of a transplant, and others who made it and now live remarkable almost CF free lives (transplanted lungs do not 'get CF', but other organs don't lose CF, so digestion is still affected, but lungs are not). What an amazing opportunity it can offer. How remarkable that transplants are possible! If only everyone had that chance.
Live life then give life. What ya gonna do with them anyway, right? Sign the register Here
* I realise that only 5% of people donate blood, so I might be offending 95% of people reading this, but I do accept that many people have very valid reasons not to. It's just the 'can't be bothered / just don't really fancy it / my great aunt once removed had a bruise after donating' kind if reasons I am suggesting might be a teeny tiny bit pathetic.
Thursday 22 May 2014
Wishes do come true
Back from Dubai, all sunned up. I don't know how anyone can work in that kind of heat, I really don't. But to swim all day, and eat all night.... Just perfect.
His wish, granted by Starlight, was to go to the biggest waterpark in the world. He is BIG on water slides, and he dreams big. And the biggest waterpark in the world is Atlantis in Dubai. If you have not been to Dubai, all I can say is that it is crazy riches displayed in every way conceivable. Garish at times, but you kind of can't help but respect them for their brazen showoffishness. Some amazing modern architecture. The replica ottoman style I'm not so sure about, never am about the new looking old look. Lots of gold of course. And posh cars galore, literally no old bangers. And did I say hot? Bloody hot.
The water slides are just amazing, we had 3 days at Atlantis, and another at Wild Wadi. We shot down near vertical drops into shark filled pools, and cruised down rapids for miles, and never tired of any of it. We slid, swam, ate and drank to our hearts content.
The water slides are just amazing, we had 3 days at Atlantis, and another at Wild Wadi. We shot down near vertical drops into shark filled pools, and cruised down rapids for miles, and never tired of any of it. We slid, swam, ate and drank to our hearts content.
Kids loved every minute, they really did. Thank you thank you thank you starlight. And TF he was well for it too.
Me, I learnt on the last day that while I love raw fish and stinky, sloppy blue cheeses, they don't love me. And I still curl up into the foetal position in pain. Lesson learnt. Doesn't matter. Kids had a ball.
The only struggle was leaving our littlest babe with her fantastic grandparents.... Totally the right decision, too hot, too far, and too young, but god did I miss her soft skin, little smile, and funny half words! So an amazing trip, but a wonderful feeling to be home too.
The only struggle was leaving our littlest babe with her fantastic grandparents.... Totally the right decision, too hot, too far, and too young, but god did I miss her soft skin, little smile, and funny half words! So an amazing trip, but a wonderful feeling to be home too.
This week a man who made me laugh a lot died. I will miss you Anders. Thank you for sharing your story.
Wednesday 14 May 2014
A few CF myths
OK, so I have been asked some pretty funny, some very thoughtful, and also some pretty dumb questions about CF, some of which I will share with you for amusement, some to explain a little about the way that his CF affects him....
Is it the one where you bash them? Yep, this is probably the most common question, especially from older people. The answer is kind of yes and no. Yes, we do 'chest percussion' which involves patting him, pretty hard, in certain parts of his chest, to help loosen his sputum (mucous) in the hope that he can clear it (cough up, spit out). We did this 2-4 times a day when he was a baby. Now he is 9, he uses special physiotherapy devices (one is an Acapella) which help vibrate his chest to do the same thing.
Why is he always taking tablets? He takes 14 different medications every day (currently, it is always changing). Only some of these are tablets. The main tablet that you will see him taking is Creon. When he was in utero the duct between his pancreas and his gut became blocked by his sticky mucous, and never developed properly. So from birth no enzymes produced in his pancreas were getting through to his gut, meaning he cannot break down any foods which contain fat or proteins, which is, well, pretty much everything! So he takes Creon with most everything he eats. The higher the fat content, the more he needs. So if you see him tucking into a Big Mac, he'll be swallowing down 15 capsules with it. His party piece is doing these all in one go. I hate it!
Why are you always offering him crisps and chocolate? We are not junk food parents! He eats a whole lot of healthy stuff first, he is actually a great eater (we are very lucky in that respect). But because his replacement enzymes (Creon) are not as effective as our own, he loses more energy from his diet than he should. This means he needs to consume about 50% more calories every day to grow at the same rate as his peers. To do this, he sometimes has special high calorie drinks, but usually he manages by just being a greedy little tink, like his Dad! He also needs extra salt in his diet, as he loses too much, especially in summer. So we are the parents at MacDonalds saying 'come on, don't you want more salt on that double cheese burger and go large fries.... '.
Why are you always offering him crisps and chocolate? We are not junk food parents! He eats a whole lot of healthy stuff first, he is actually a great eater (we are very lucky in that respect). But because his replacement enzymes (Creon) are not as effective as our own, he loses more energy from his diet than he should. This means he needs to consume about 50% more calories every day to grow at the same rate as his peers. To do this, he sometimes has special high calorie drinks, but usually he manages by just being a greedy little tink, like his Dad! He also needs extra salt in his diet, as he loses too much, especially in summer. So we are the parents at MacDonalds saying 'come on, don't you want more salt on that double cheese burger and go large fries.... '.
Can people with CF mix? Sadly, this one is true. Or at least it is not recommended. There are certain bugs which find the CF lung like Hawaii, the perfect environment. They don't much like our lungs, so don't really bother us. But if someone with CF has them, and they mutate into a super bug, these can be easily transmissible to others with CF. Therefore CF clinics are segregated. We get there, go to a room, and the team all visit us in that one room. Us moving round the hospital is kept to a minimum. Cross infection is a really sad part of CF. That said I know many people who choose to manage this in their own way and still see each other, and even people with CF who marry. For us, it did make our decision not to risk having another child with CF definite.
And one of my personal favourites....
Doctor - So how long has he had CF
Me - Umm, well, it's genetic isn't it, so from conception I guess!
Saturday 10 May 2014
Sputum and stuff
In the last 9 years, since he was diagnosed at 3 weeks old, we have becomes experts at describing his cough. We started off with 'he's got an awful cough doc', now it's more like 'he has a rattle, it seems to be emanating from his upper right lobe and we can't shift it with physio even after his DNase'. There are certain words they take more seriously. Fruity, rattely..... coughing up tons of green gunk. We can describe the colour, consistency and texture of his sputum. One thing they always ask us is, is there any blood in it? Never has been before. The other day he called MUUUMMM I have sputum (to which I usually rush at him with a pot, in the hope of getting a really nice juicy sample to send to the lab, the juicier the better, and then we keep everything crossed that it comes back clear), but on this occasion we were half out the door on the school run, baby was on the bike already, girly girl was struggeling with her shoes, so I say don't worry, just spit it in the sink. He does, and it is THE JUICIEST BIT EVER! Gutted. But worse.... It is BLOOD STAINED. At least, it appears so.
Then I remember that he just ate some mackerel in tomato sauce (yes, he does have odd breakfast habits!). TFFT.
Have a great day x
Monday 5 May 2014
Our amazing family
Yesterday my sister ran a 10k, yet another fundraising feat. She has done so before, as well as walking Ben Nevis and the Yorkshire Three Peaks with me, and a half marathon... as has my lovely cousin Gavin (not to mention him and Dan throwing themselves out of an aeroplane). As a family we have come together over fundraising, and I can't tell you how warm and fuzzy it makes me feel to have everyone else supporting us against this disease. Many friends have joined us on our sponsored walks, purchased my homemade candles, and sponsored us again and again for our various adventures. It is so heartwarming to feel that kind of support, again and again. It really is. I really can't thank our lovely friends and family enough. Thank you thank you thank you.
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