Recent content by Pebbles8

Thank you for all the comments! Kevin entered the hospital Wed mid morning. He actually didn't really think he was doing very badly based upon how he felt. He was getting his fastest 5k times ever (~31 minutes) and felt in great shape. But his numbers had declined from upper 60's to 49 so...

Do they usually make you stay in the hospital the entire time? My husband is going for his first IV antibiotics and they were telling him it would be 3-4 days in the hospital and then 2 weeks at home with the IV's. Is that unusual? It kind of helps our days if he were home to put the kids on...

My husband has double delta f508 mutations but has managed to make it to the age of 30 without having to have IV antibiotics or step foot in a hospital. I think we both prefer to think of him as not being sick. Well, around his 30th birthday when he started orkambi, his numbers did a nose dive...

My husband has cystic fibrosis. Whenever he spends the day outside in the warmer months, or even in the colder months if he is active, he ends up with red irritated eyes for days from the salt dripping in his eyes all day. This makes him not want to spend so much time doing stuff together as a...

My husband has been thinking of getting on the phase three trial of lumacaftor plus ivacaftor. However we both have some reservations. His mutations are both delta F508. He is 28 years old. He has an FEV1 of 75%. This has been stable for the last decade. And his enzyme levels were in the...

My husband has cystic fibrosis. We are in the process of adopting from foster care. The kids have been in our home 9 months, should be setting up a date to finalize soon. A sibling group of 3 kids. They came to us at age newborn, 1, and 3. We couldn't be happier with them. Many of the...

My husband has cystic fibrosis. We have 3 kids. The oldest is 4 (Yay adoption from foster care! The quick way to grow a family) and very interested in getting a pet. I was thinking 2 female rats would make great first pets. However while researching them, I saw they can be susceptible to...

We're in Buffalo. My husband goes to the CF center at children's. He has been happy with it but he is pretty easy going so his review might not be the most critical. His numbers have stayed stable or gone up for the last 7 years. The one visit they dropped 5 points, he was put on antibiotics...

We're in Buffalo. My husband goes to the CF center at children's. He has been happy with it but he is pretty easy going so his review might not be the most critical. His numbers have stayed stable or gone up for the last 7 years. The one visit they dropped 5 points, he was put on antibiotics...

We're in Buffalo. My husband goes to the CF center at children's. He has been happy with it but he is pretty easy going so his review might not be the most critical. His numbers have stayed stable or gone up for the last 7 years. The one visit they dropped 5 points, he was put on antibiotics...

My husband told me on our second date. I kissed him on his cheek remarked "wow, that's salty" and he said "I might as well tell you reason for that now..." I don't think it has to come out as early as the 2nd date but definitely within the first month or two if you are seriously dating for...

My husband told me on our second date. I kissed him on his cheek remarked "wow, that's salty" and he said "I might as well tell you reason for that now..." I don't think it has to come out as early as the 2nd date but definitely within the first month or two if you are seriously dating for...

My husband told me on our second date. I kissed him on his cheek remarked "wow, that's salty" and he said "I might as well tell you reason for that now..." I don't think it has to come out as early as the 2nd date but definitely within the first month or two if you are seriously dating for...

My boss went to a conference and one of the topics was about B. Cepecia and cystic fibrosis. Knowing that my husband has CF, she listened. She said that onion rot, like the nasty stuff you peel off the outer layer of an onion before using it for cooking is the same B. Cepecia that causes...

My boss went to a conference and one of the topics was about B. Cepecia and cystic fibrosis. Knowing that my husband has CF, she listened. She said that onion rot, like the nasty stuff you peel off the outer layer of an onion before using it for cooking is the same B. Cepecia that causes...