I probably don't want to talk about it, so you don't ask: Not at all. I am always happy that people ask how our boy is getting on.... It shows people care, so please ask away. I find writing this blog cathartic in some way. It gets it out if my head somewhat, reordering things in my mind so I can focus on what really matters.
But I can't talk for Isaac; it is for him to decide how much or how little he likes to disclose about his health, and for now, that is not much (mostly he just talks to me about it). If things are really not great, he might say more (and oddly I go quiet and say a lot less).
But please never ask me about him when he is there; you wouldn't believe the comments I have had in the past, serious questions about his health, all whilst he is stood right in front of me. He has CF; he's definitely not stupid, deaf, or ignorant to the fact that you're talking about him.
Remember, he is the only person with CF that he has ever properly met....
A lung transplant is a cure for CF: Sadly no. A lung transplant is only ever offered as a last resort scenario, where living more than two years is unlikely with your current CF lungs. It CAN give people years of good health that they may not have experienced since childhood. It can also bring more complicationso (problems due to being immune suppressed, and chronic rejection) than it solves. It will mean you would no longer have CF in your lungs, but you would still have CF in the rest of your body, meaning the digestive issues remain and the risks of liver disease, CF related diabetes, cancer, sinusitis, osteoporosis all persist, and can affect your new lungs. That said, transplantation is still a relatively new science, if average life expectancy after transplant is five years now.... but some are living twenty years or more, we can have high hopes for the future.
He looks so well, so he must be fine, right?: I wish. Like my friend Jayne says 'It's my innards that are fecked, not my outards'. Isaac looks great, most of the time. But he is one handsome little dude which may dazzle you to not notice that he can look kinda tired and pale at times. He can have relatively cough free days, but with physio sound like his chest is full of jelly. All the same, it's good to know he looks well, just don't forget how hard he works to stay that way.
A lung transplant is a cure for CF: Sadly no. A lung transplant is only ever offered as a last resort scenario, where living more than two years is unlikely with your current CF lungs. It CAN give people years of good health that they may not have experienced since childhood. It can also bring more complicationso (problems due to being immune suppressed, and chronic rejection) than it solves. It will mean you would no longer have CF in your lungs, but you would still have CF in the rest of your body, meaning the digestive issues remain and the risks of liver disease, CF related diabetes, cancer, sinusitis, osteoporosis all persist, and can affect your new lungs. That said, transplantation is still a relatively new science, if average life expectancy after transplant is five years now.... but some are living twenty years or more, we can have high hopes for the future.
He looks so well, so he must be fine, right?: I wish. Like my friend Jayne says 'It's my innards that are fecked, not my outards'. Isaac looks great, most of the time. But he is one handsome little dude which may dazzle you to not notice that he can look kinda tired and pale at times. He can have relatively cough free days, but with physio sound like his chest is full of jelly. All the same, it's good to know he looks well, just don't forget how hard he works to stay that way.
Wow, he takes how many tablets? OK, not a myth as such, but I never get how on CF documentaries, or when you have similar diseases on t'telly, they focus on how many tablets that person takes. Isaac takes around 40-50 tablets a day (for a start, he needs some with everything he eats just to digest fats and proteins), and yes, it's a bit of a pain if you've left them in one room and you're eating in the other and you have to go find them, or like the one time we forgot them, got the train to London, then spent ages in Boots trying to get some dispensed (they did, without a prescription, which we were eternally grateful for), but it's not like he spends ages swallowing down each one in painful gulps... On the contrary, he scares me by swallowing 10 at a time. Taking tablets is not hard (OK, granted, it was more of an issue when he was three, and some people are tablet phobic). But apart from 3 years olds and fuss pots, it's really not that hard.
What they never explain though, is how the SIDE EFFECTS of those drugs, and drug interactions, might effect those people. Now that really can be a bummer. Isaac can barely stand near a low voltage table lamp before getting sunburnt when he is on Cipro. He gets a rash on Ceftaz. He gets grumpy and aggressive on Prednisolone. He gets a tummy ache from too much Creon. He gets a tummy ache from too little Creon. He has some drugs that he can't take one hour either side of milk. Or food, and others he has to have with food, otherwise his stomach burns...... Taking tablets is great, it's the side effects that suck.
CF is a terminal illness: No way Jose! I once heard a parent describe CF as such, and was appalled. I believe the term 'terminal' describes a disease where you are expected to live less than one year. CF was later described by the Trust as 'Life threatening' and now 'Life limiting', which is more accurate in my opinion. No one knows what is round the corner. Science changes things so painfully slowly when you are full of hope, but it is changing things. We were told when he was a baby that his lungs would be irreversibly scarred by the time he was 5 years old, and we hoped that gene therapy would become a clinical option by then, before it was too late. He's almost ten now, and gene therapy is still a dream, but you know what, he's still doing OK. The life expectancy quoted now doesn't take into account new therapies. I don't believe in one single cure, but as our consultant once put it, rather there would be many small pieces that put together will improve outcomes greatly, and then one day, we will look back and think, wow, CF is a treatable 'condition' rather than a life limiting disease. We truly believe that all these small pieces we are doing now will keep him well enough to benefit for all those others to come.
Have a great day.
Have a great day.
