New breathers.

Very cool transplant video here. Transplant is one of the hardest things I (poorly) attempt to explain to people. My mumblings go something along the line of;

Your lungs are knackered.

You need new lungs to live.

But there is a waiting list due to a shortage of donors, and because not everyone makes their wishes known to their loved ones, who have to make a hard decision at a terrible time.

You hope you're not one of the 1 in 3 that die waiting due to this shortage.

You get new lungs! The op alone is a huge risk, but not having the op means certain death.
You still have CF, but your new lungs don't.

But because your body is so clever, it detects this foreign organ and your own immune system attacks the new lungs (rejection).
Doctors suppress your immune system to limit rejection.
Due to your suppressed immune system you're at greater risk of infections, among other things.
You hope to get many more years from your healthy new breathers. A gift from a generous stranger. 

Watch the video though, says it so much better. And then sign up here. 

Have a great day x

This week in two pictures.

Isaac's new anti sickness drugs; 

Equal the....

Good night all. Things are looking up! x 

PS; Big love and well wishes for my friend Jayne who is back in hospital with post transplant complications. I'm thinking of you x 

The price of life?

I'm sorry, have had some lovely messages asking how Isaac is. My update is very late.

Good news; it is not Gastroparesis! So a mechanical tummy issue is ticked off the list, which is wonderful. For more news we have to wait for his referral to the Gastro team, which is coming, but we have some ideas of what might be causing his vomiting. He has also been prescribed some anti-sickness medication used in chemotherapy, and so far...  so good. 

Had such a lovely long chat with our favourite consultant (apologies to any other families in clinic that day, we totally hogged her) and I'm feeling much more positive. 

We know he has chronic problems with DIOS (CF related) but it's not right that he is sick so much too, although one may well affect the other. In fact, when you consider all of the what if's ....  too little Creon, too much Creon, the many drugs he takes and all the possible interactions of those drugs, the DIOS episodes.... Trying to work out what causes what is frustratingly chicken and bloody egg. 

For now, we are immensely thankful for a vomit free 5 days. 

Interesting article on Orkambi here (a new drug that will treat the underlying cause of CF rather tham just the symptoms, which will be suitable for the majority of CF patients (not Isaac, you can read  here as to why)). And you can support the campaign for access to this and other life changing drugs by signing here. Please. 

I have so much more to say about this, and how I feel about big pharma's and the Governments need to work with them to gain fair access, but for tonight, I am tired. 

Training for our 50k; a very hard couple of weeks at work (they have announced extensive redundancies and a big restructure); and making up lost time with my little girlingtons.... I am weary. Hopeful but weary. I suppose the bottom line of whatever it was I wanted to say is; if your loved one had a chronic, life threatening condition, would you not move heaven and earth in order to access any treatment that could change their lives? And how would it make you feel to know that such a drug existed, but your doctor could not prescribe because of the cost? FYUIGYUIGHknkhjcrtudtyu!!! 

Goodnight all x 

Radioactive egg and toast at last.

Things have been a bit crazy for a while here in Moly World. Dan's 40th rolled on for some time. We've just got back from a weekend in Budapest, just the two of us. We haven't been away without the kids since 2010, and the biggest thing that struck us was the deafening silence. It was so good to read ferociously, sight-see, visit old thermal pools, walk to our hearts content.... sleep, eat and drink. I had a massage from a huge Hungarian guy who smelt like pine needles. I spent half the time wobbling up and down on the bed trying not to giggle. And no, that is not a euphemism. 

But for all the laughs, jeez, we missed our little Moly's too. 

We are so so thankful to all the kids five Grandparents that make us ever going away a possibility. Isaac was sick on day one, which is never nice to see, and his treatments are a lot to take on and manage if you're not used to them. Thank you Mum and Joe. 

Today was back to earth with a bang for some radioactive breakfast and 5 hours of scans to follow. We played games all day and made what fun we could. 10 years in, and the old 'don't step on the cracks' game is still rocking. I quite possibly look like I've had a stroke mind. And i'd like to add that I won Shed 7-1, and no, it's not just a game of luck Isaac :o) 

We have no firm results yet, should know more later this week, but we know it's not good news; they needed to add a fifth scan as he was still showing nuclear powers from within after that amount of time, which is not right. More on that soon. This is him during the scan (claustrophobics look away); 

And after his fasting, him enjoying a special lunch out for being so brave and utterly gorgeous; 

We saw a man at the hospital who carried all his possessions around in an old Sainsbury's shopping basket. As always, being in hospital is so humbling. 

Have a great day x