I started a new cell corrector med. It is the next generation from my last one. New one named Symdeko, old one – and a good nugget as it has treated me so well, Orkambi.
It is not the trifecta that is probably going to come out later this year or early next.
I actually did not know about this one – mostly I think because I was staying the course. It has actually been available since February 2018.
When Children’s suggested it to me, boy did I feel ignorant. It felt like I had been swinging around on my own fruit loop carousel living my life on Orkambi and then it hit its brakes and I flew off.
I emailed my MN doc, and she said she thought it might be a good idea as well; she supported it.
The pill has a combination of two drugs: one I am already taking and one I have not. So far – no side effects. If I have a side effect, it usually comes on pretty quickly, so I feel Okay to be writing this. I had almost no side effects from my previous medication and with this one patients have had fewer side effects overall.
Symdeko yields better pulmonary function test results – Orkambi like 2% and from the study Symdeko 5-7%. Both medications have shown less CF exacerbations, easier to gain weight, and you feel better overall; more energy, stronger, higher stamina and endurance. All true for me.
The percentages look small – but these are positive, above zero percentages. Anything above is good. Scientists have tried for years to yield anything positive – it’s wonderful to see this.
It could be exciting. I am excited, cautiously, optimistically excited. Still cautious.
These drugs come out of Vertex btw. In our backyard. They built a big building in the Seaport district as of recent. They have confidence.
a little blip:
The world I live in
has no locks, no boundaries
no one that says, “Stop here –
you can’t pass.”
I can pass – I may pass.
I may leap, jump
over that body of water,
sand dune, quick sand
that is not quick
enough for me.
I will step out,
Step high
Leap further – join
the others on that side.
No cause, no broken
barrier, rotten wood
sapped from thirst and
hunger –
The world I live in
Believes – in the
expansion of thought,
the tangible, and wonder.
T.W.
A work in progress . . .
Much love. Hope everyone is well.
A couple pictures from the book, Because.
