I contacted my transplant coordinator and had her ask my doctor about me trying Trikafta (the new CF drug) in regards to my liver nodules. Doctor said it is fine to take it we just have to monitor my liver enzymes closely.
Next stop on the contact chain was my CF nurse to ask about the new drug and the depression side of things. I asked if we could possibly draw a therapeutic level of the antidepressants in my system. My nurse asked the pharmacist in the clinic if that would be necessary and she didn’t feel it would be. So if I want to try the new drug i will just have to keep a close watch on my depression. With that said, I have decided that I will try the new drug and take the chance.
My nurse filed my paperwork with Vertex (the drug company) today. Vertex will be calling me soon to discuss insurance and other details of the drug. I don’t know how long it will take for me to have the drug in hand. I just have to wait.
Trikafta is $311,000 per year. I don’t know what the cost to me is going to be yet. We are hoping it’s not a crazy amount. I will apply for copay assistance if I need it, if it comes down to that. It’s crazy how expensive a chance at a new way of life is.
I have heard a lot of great things about Trikafta. I like to know the good, the bad and the ugly of things so I can make my own decisions about things. I hope I don’t have any side effects or problems with my depression because of Trikafta. I’m still a little nervous to try it but trying to think of the positives that can happen.
The damage already done to my lungs can not be reversed with this drug but we are hoping that I will at least gain some lung function along with some of the other positive things Trikafta has been known to do. Now for the topic of lung transplant. It is the inevitable anyway, right? Well, with this drug I hope to ward off transplant for even longer. Transplant is also not a cure just like this drug is not a cure. Hopefully it will help me none the less.
I’ll keep you all updated about the process as it comes available.
Until next time…