tag:blogger.com,1999:blog-7560483802241284025.post5899607312815760880..comments2023-12-24T07:38:48.687-05:00Comments on The Transplanted Dad: Beautiful Explosion of HopeAnonymoushttp://www.blogger.com/profile/08862272904314994454noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-7560483802241284025.post-17486404264614523092015-07-13T10:14:38.043-04:002015-07-13T10:14:38.043-04:00As you may have noticed, I'm a big fan of your...As you may have noticed, I'm a big fan of your blog as well. You have a great attitude and an absolutely top shelf pulmonologist-- two key pieces of life with CF! :)Anonymoushttps://www.blogger.com/profile/08862272904314994454noreply@blogger.comtag:blogger.com,1999:blog-7560483802241284025.post-6274962665205344142015-07-13T10:14:18.453-04:002015-07-13T10:14:18.453-04:00As you may have noticed, I'm a big fan of your...As you may have noticed, I'm a big fan of your blog as well. You have a great attitude and an absolutely top shelf pulmonologist-- two key pieces of life with CF! :)Anonymoushttps://www.blogger.com/profile/08862272904314994454noreply@blogger.comtag:blogger.com,1999:blog-7560483802241284025.post-27724920798405654832015-07-07T14:29:13.526-04:002015-07-07T14:29:13.526-04:00He has sent paperwork to find out mutation. It'...He has sent paperwork to find out mutation. It's one of the questions on the list because it seems like it's been a while since he filled it out. Anonymoushttps://www.blogger.com/profile/17805812615888966007noreply@blogger.comtag:blogger.com,1999:blog-7560483802241284025.post-73800342464438806702015-07-07T02:33:06.791-04:002015-07-07T02:33:06.791-04:00Wow! Beautiful post, and what a wonderful surprise...Wow! Beautiful post, and what a wonderful surprise to click on the linked blog and find that it is mine! Thank you for supporting my writing, and I'm quite enjoying yours. I appreciate you bringing to light the issue that post-transplant CFers may have with being able to effectively take Orkambi...I hadn't considered that before reading. Hoping for you to get good news at your appointment, but no matter what, progress is progress!Hannah Buckhttps://www.blogger.com/profile/04715674921218199407noreply@blogger.comtag:blogger.com,1999:blog-7560483802241284025.post-32771521995737601752015-07-06T20:54:01.333-04:002015-07-06T20:54:01.333-04:00I would highly recommend Kodey have his mutation i...I would highly recommend Kodey have his mutation identified. It doesn't take long from the time they start the process until the time they have an answer. I'd hope that his new doctor is forceful (in a nice way) in making it clear that if he has the mutation which if helped by the Vertex drugs, they could completely change how he feels on a daily basis, and totally shift his long-term experience with CF. It is NOT selfish to want to know as much as possible and help a loved one fight this disease! :)Anonymoushttps://www.blogger.com/profile/08862272904314994454noreply@blogger.comtag:blogger.com,1999:blog-7560483802241284025.post-39175547822601383942015-07-06T11:47:01.448-04:002015-07-06T11:47:01.448-04:00I get so confused about all of this and to my know...I get so confused about all of this and to my knowledge Kodey still ddoesn't know his mutation. He has his first adult appointment this week with his new doctor and sadly doesn't want me to go. I am trying to let go but feel sometimes what he asks is unfair. But maybe I'm just selfish??? I will write some notes and ask him to ask the doc for me.Anonymoushttps://www.blogger.com/profile/17805812615888966007noreply@blogger.com