You'll probably get more responses if you post this in the adult/family section, but here's my answer to your questions
-how old is your husband (name optional) and when was he diagnosed with CF -My husband is 25 now and he was a little over 18 months when he was diagnosed with CF. He was diagnosed a few months after his mom stopped breast feeding him and he had "failure to thrive" because he was loosing weight and always eating but NEVER gaining weight, and actually loosing it.
-is there anyone else in his family that has been diagnosed or has been told they have a trait (gene that causes CF)? Mark has one brother and he isn't even a carrier of a CF gene. He has a 1/2 sister (his brother is full) and she is not a carrier either.
-what symptoms does he have, what is most difficult for him? Weight/digestion problems are difficult for him. He also has lung involvement but his PFT's are pretty high, about 85-90 which is good but he does have frequent lung infections and has to do nebulized TOBI 28 days on, 28 days off. This consistent TOBI use just started about 9 months ago. Porior to htat, he just used tobi 2-3x since it first came out. He has also used nebulized colistin (colymycin) when he was showing a resistance to cipro.
-are there adequate resources in your community to help him and your family? if so, what resources are they? Not at all, CF is a very unknown diseasse and those who do have some slight knowledge about it are always shocked to hear that people are living past their teens. People look at my hsuband in disbelief when they find out he has CF. THey always ask, "don't people die with that young?" Times change and so do meds but people aren't kept up to date. It's great that medicaid insurance is available in some states for children with CF. What doesn't make sense to me is that as soon as they turn 19, they are kicked off of it-like CF just goes away or something when they hit adulthood. CF is an EXPENSIVE disease, my husband and I (and I am about 110lbs and eat VERY little) spend over $850 in food a MONTH, just 2 of us. This helps him maintain a very healthy body weight and keeps him healthier that if he were really thin and frail. That $850 DOES NOT include any of our out of pocket purchases of Boost/Ensure shakes which cost us about $200 a month.
-what kind of treatment is he receiving now? Past treatment? Chest PT, it use to be manual but now we have a vest (www.thevest.com). Tobi 28 days on then 28 off then back on. Advair discus, Pulmozyme neblizer
-has he or does he see a genetic counselor? Has your child or children been tested/counseled? Yes we have seen a genetic counselor, we are in the process of going through IVF to have a child and they had to ensure that I was not a carrier. Otherwise, we probably wouldn't have gone if we weren't going to have kids.
I know this seems like a lot of questions. I need to have a family tree to assess for genetic risks so I can better understand CF and what all of your are going through. Are his parents, grandparents alive, if not age they passed on and if alive, their current health? Same for his parents, sisters, brothers, nephews, neices and children. Thank you so much for your time. My thoughts are with all of you and I truly thank you for taking the time to "speak" with me. Both his parents are a live, his dad has a lot of breathing problems though-coughing, athsma, green sputum.... His mom is much healthier-no problems like that. His grandparents on his moms side are still alive and really healthy, his grandparents on his fathers side have both passed. His dad is older though, and his grandparents on that side were much older. His dad is almost 70, and his grandparents on his dads side passed when his grandpa was about 65 and his grandma was about 70-just of old age pretty much. His brother is pretty healthy and he has 2 biological sons who are very healthy and an adoptd daughter. His sister has one son and he is healthy. We have no children yet but are working on that.
Let me/us know if you have anymore questions.... I'd be happy to answer them!
