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
