Hi Bailey, you asked about stressors. I can tell you up front what Kelly’s stressors are. Gray hair and weight gain. She has been fighting the grays for quite a few years now. She does a pretty good job of keeping them covered. But lately if she goes too long between hair appointments, the grays become more and more abundant and noticeable.… Read more

Hi Bailey, I was saddened to read about your cousin who took his life due to deafness. My brother’s death was also very sad. I won’t elaborate on the details, but I will say this, Roddy was a very upbeat, friendly and social person. However, he did have many health issues besides his deafness.
As for salt. Kelly has never added salt to her… Read more

Being Kelly’s mom, I am able to answer these questions (most of them anyway) with ease.

Favorite Movies: since Kelly is a bit older than you Bailey, her movie favorites precede yours somewhat. Her all time favorite was/is Dirty Dancing. She loved Lady And The Tramp, and Bambi (except the part where Bambi’s mother gets killed). Another… Read more

Jenny, I love the admonition to not cook bacon in the nude, that’s golden, lol I might add, don’t fry chicken in the nude either. 🤣 My mom’s best piece of advice was, “Always be careful of what you say and how you conduct yourself. There will always be someone watching you”. My own advice to my family and friends anytime we are ending a visit… Read more

Hi again, Bailey, hearing loss and profound deafness is a major debilitating condition that has and does plague my family (mother’s side). My half brother (deceased) was born totally deaf. My mom (also deceased) had hearing difficulties her entire life, and my hearing has gotten much worse, to the point that I have had 3 and a half pairs… Read more

Baile, thanks for the info. I never would have thought that the liver can be effected by CF. Proves once more that CF is a full body condition (I prefer to call it a condition as opposed to a disease). Seems you have experienced quite a number of CF related issues. I truly admire your stamina and positive attitude. My interactions with… Read more

Paul, yes, she knows. I tell her every time I discuss anything about her. I am her mom after all, and we have an extremely close relationship. You have no need to worry. I would never compromise my daughter’s integrity or her private life, ever. I completely understand confidentiality issues as I worked in a government program for 26 years… Read more

Well Bailey, for a 74 year old woman I’m doing quite well. Thanks for asking. 😊 I have to tell you all about Kelly’s fiance’s nephew. I’m not sure what his name is, but a couple years ago (approximately) he was diagnosed with CF at the age of either 13 or 14. His mom, who grew up with Kelly and my youngest daughte, says his CF is affecting… Read more

Hi all,
I had dinner with Kelly a few days ago, and asked her about her Creon intake. She said she hasn’t been taking fewer capsules (is it in capsules?) since starting Trikafta (takes 5 with meals). Also she drew a blank when I asked her about her electrolytes. She said she has never been informed about them. She also said she hasn’t had any… Read more

Jenny, To my knowledge, I don’t believe Kelly has had any complications at all since she started Trikafta. It seems that she told me once that she has reduced the number of Creon capsules, but I can’t remember for sure.

Tim, to tell you the truth I have no idea if there have been any changes in her electrolytes (I doubt if Kelly even… Read more

Hi Bailey, hi Jenny,
Becky Fox here again. I will take a chance in speaking for Kelly by saying that half of the few times she has been hospitalized throughout her life has been due to gastrointestinal complications. The other times were needed “clean-outs”. So I guess the time has been equally divided. The differences, pain wise, centered on… Read more

Hi Jenny and Bailey,
I’m happy to share Kelly with you both. Yes, I am way beyond proud of Kelly. Although she hasn’t had the major problems you gals have had with CF, since she has gotten older, her condition was starting to get gradually worse. Starting Trikafta has made a tremendous difference in her life. It was truly an answer to… Read more

My daughter, Kelly started Trikafta January 22, 2020, one week before her fortieth birthday. I was fortunate enough to be able to accompany her on this momentous day. The very next day she reported that when she walked up the stairs at work, she didn’t experience shortness of breath; this after only two doses of Trikafta. And it just got… Read more

My daughter, Kelly started Trikafta January 22, 2020, one week before her fortieth birthday. I was fortunate enough to be able to accompany her on this momentous day. The very next day she reported that when she walked up the stairs at work, she didn’t experience shortness of breath; this after only two doses of Trikafta. And it just got… Read more