Recent content by CFcarebear

Wafflesmommy- we were not given the options that you are speaking of. We just did one cycle and ended up with 5 embryos. We do pay an annual fee to store the remaining embryos and sperm.

I am 7 months pregnant with our first baby due to a frozen embryo transfer. Immediately after our egg retrieval and sperm retrieval we decided to freeze all of our embryos (5 total) because my husband ended up being very sick because of CF issues. We decided that wasn't a good time to start...

My hubby is almost 9 months post- transplant and his clinic put him on tami-flu about a month ago as a preventative measure. They chose to cover all of their patients that are less than one year post transplant with tami-flu. The flu has been a monster this year!

I would tell your coordinator, especially since you are out of breath. It could be an early sign of rejection, but I'm praying that's not the case for you.

More copay assistance programs to add: TOBI: www.tobitime.com/info/co-pay-card-tobi.jsp Zenpep: www.Zenpep.com Cayston: www.cayston.com My husband and I live in Texas (he is the CFer) We have a High deductible, high out-of-pocket plan that pays 80/20. We have a deductible of $2,500 and an...

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...

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

Once my husband started the Kalydeco trial in 2011, he never got off of the med. He was able to continue it all the way through being approved by the FDA. Also, FYI, he just received a double lung transplant in May and he's still taking Kalydeco!

Jane, he will be listed at Baylor in Dallas, TX. His current FEV1 is 26%.

Hi, Jane, my husband will be actively listed within the next week. He just finished the last 2 steps of the evaluation (bone density and dental check-up) The nurse said his LAS was 32 a couple of weeks ago, even though he was inactive on the list. Good luck to your son! Do you know what his...

Lex, how long were you on the waiting list with an LAS of 38? Also, what was your LAS when you received your transplant? Do you remember? I hope you are doing well.

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....

My husband started it at the beginning of February with an FEV1 of 29%. Good luck!

My husband started it at the beginning of February with an FEV1 of 29%. Good luck!

My husband, Jake, has been on it for about 1 1/2 months. He felt HORRIBLE for at least 2-3 weeks. He coughed up very sticky, dense thick mucus and he said the color is much different (like the color of old infection) He is still to this day coughing up that same stuff, but he is feeling better...