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Vx-770 and hemoptysis
- Thread starter jmiller
- Start date
I was a daily bleeder then in 2008 I got an embolization. I did not qualify for the embolization due to one of the 5 (or is it 6) established reasons to get a BAE but petitioned to get it for a QOL factor. I have since started Vertex 770 and now have no hemoptysis. I think the BAE and the Kaly are both working in my favor here. I will tell you though the first few days on Kaly I did have some streaking because I expunged so much mucus my airways were torn up from the schrapnel of mucus plugs. I know it sounds graphic. It was! The streaking bleeding was different than a pure blood hemo even though at times during the first 1-4 days on it I had mucus that was totally blood stained. It's definitely like HTS is for some in that the first few days you feel worse before you feel better. J, Are you a candidate for it?
I was a daily bleeder then in 2008 I got an embolization. I did not qualify for the embolization due to one of the 5 (or is it 6) established reasons to get a BAE but petitioned to get it for a QOL factor. I have since started Vertex 770 and now have no hemoptysis. I think the BAE and the Kaly are both working in my favor here. I will tell you though the first few days on Kaly I did have some streaking because I expunged so much mucus my airways were torn up from the schrapnel of mucus plugs. I know it sounds graphic. It was! The streaking bleeding was different than a pure blood hemo even though at times during the first 1-4 days on it I had mucus that was totally blood stained. It's definitely like HTS is for some in that the first few days you feel worse before you feel better. J, Are you a candidate for it?
Thanks for the info! That certainly gives me hope- and you can never be too graphic here <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm not a candidate for kalydeco (df508 + obscure one- 2184dela) though I'm optimistic that the fix for all of us will be here someday and I'd love to think that my battles w hemoptysis my go away with the drugs too!
Thanks for the info! That certainly gives me hope- and you can never be too graphic here <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm not a candidate for kalydeco (df508 + obscure one- 2184dela) though I'm optimistic that the fix for all of us will be here someday and I'd love to think that my battles w hemoptysis my go away with the drugs too!