Kalydeco and transplant

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echolaura

Guest
Has anyone ever heard of a patient on Kalydeco, who hasn't responded well and has ended up with a transplant anyway?
 
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CrisDopher

New member
I haven't, though that doesn't mean such a thing isn't currently transpiring. Generally, only patients who will benefit from Kalydeco are on it. Also, Kalydeco isn't going to reverse previous lung damage. If your PFTs are within transplant range, Kalydeco is unlikely to boost them much outside of that, because most of the low PFT is lung damage, not just infection and mucous. If you're on oxygen, Kalydeco is certainly not going to save you from needing a transplant, I don't think.
 
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CFcarebear

New member
My husband is 35 years old, has been on Kalydeco since it was a study drug. He just finished his transplant workup and will be listed soon. We are curious to find out if he will continue Kalydeco post transplant. We will have to keep you posted....
 
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kittencaitlin

New member
I am on Kalydeco- have been since july 2011. I am about to be listed for tx at Pitt. I was almost there 3 years ago but Kalydeco gave me a slight reprieve. I was able to feel better for about a year and a half and saw a 5% increase in pfts. My lung function was already 28% though mind you, and I have cepacia. I ended up being able to go on a bunch of trips I wasn't able to previously take, and met my boyfriend...all in all had a good couple years until I started to decline again this past august. 6 +/- months later and its time to be listed so here I am. But I am still on kalydeco and am very grateful for it.
 
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CFParent2

New member
CFcarebear said:
My husband is 35 years old, has been on Kalydeco since it was a study drug. He just finished his transplant workup and will be listed soon. We are curious to find out if he will continue Kalydeco post transplant. We will have to keep you posted....
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My understanding is that Kalydeco will help in other areas (like the Pancreas) not just the lungs. The transplanted lungs are not made from CF cells so their would be no benefit for them directly.
 
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CFcarebear

New member
FYI, my hubby ended up getting his transplant in May and is still taking Kalydeco for his pancreas, sinuses, etc.
 
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sroeseler

New member
OK so kalydeco does not reverse lung damage. It can significantly slow down or stop any future damage caused by defective CFTR genes. It is not a cure, if at any time you stop taking the drug your DNA is still faulty and your cells will not function properly. With that said, if you have enough lung damage to require a transplant you will still need a transplant. The good news, if your on kalydeco it is possible to not ever damage your new lungs. That's right you could live the rest of your life with 100%lung function as long as your on kalydeco. The bad news, kalydecos actual cost is between 300 and 400 thousand dollars a year. That's 50k a month, hospitals don't typically carry it because of cost and insurance and Medicare are trying to refuse it in several States
 
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CFParent2

New member
sroeseler said:
OK so kalydeco does not reverse lung damage. It can significantly slow down or stop any future damage caused by defective CFTR genes. It is not a cure, if at any time you stop taking the drug your DNA is still faulty and your cells will not function properly. With that said, if you have enough lung damage to require a transplant you will still need a transplant. The good news, if your on kalydeco it is possible to not ever damage your new lungs. That's right you could live the rest of your life with 100%lung function as long as your on kalydeco. The bad news, kalydecos actual cost is between 300 and 400 thousand dollars a year. That's 50k a month, hospitals don't typically carry it because of cost and insurance and Medicare are trying to refuse it in several States
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Was told that there is a possibility of the lungs repairing themselves. Some coal miners and smokers who quit early enough often see their damage reversed. A similar thing could happen to those taking meds that reverse the damage mechanism early enough. The drugs don't repair anything, but the lungs themself are allowed to heal.
 
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sroeseler

New member
Yes the body always trys to heal itself but if your at a point of needing a transplant the damage is so great that you'll still need new lungs. If you didn't need a transplant before you should see gradual improvement but it takes a very long time for lungs to heal
 
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CFcarebear

New member
My husband's lungs were at about 25% FEV1 before Kalydeco (in 2011). His function increased to about a baseline of 35-40% for a period of time and he got sick less often once he started Kalydeco. He got pnemonia in Dec 2013 and didn't recover well from it. He was listed for transplant Feb 2014 and he got new lungs May 2014. In summary, I think Kalydeco was a huge blessing. It gave him 2 more years to avoid transplant! I think he would've faced transplant 2 years ago had Kalydeco not come about.
 
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