Thank you to my question people! I appreciate it so much.
1. Can Roanan get a lung transplant and at what age do they talk about doing that?
Yes, it is possible for those living with cystic fibrosis to get a lung transplant. Lung transplant greatly increase quality of life for many people, but unfortunately new lungs do not cure cf. Treatments and medications are still administered to cf'ers post transplant. Hopefully. R will never need a lung transplant. We have all intentions of keeping his health very high and his lungs in pristine condition. Doctors begin talking about transplant after the body deteriorates so low. In order to be considered for a lung transplant a huge list of criteria must be met. We pray the R will never require a lung transplant...
On the note of transplants, please become an organ donor.
2. Since we are both carriers does that mean it's coming from the "Jackson" side?
We assume yes. Seth and I haven't been tested, yet, to determine our mutations. We will be doing that sooner than later and once we get those results we can compare our cf gene to confirm.
3. Have they learned more about the mutations he has and the severity of it? I know u had mentioned it was uncommon.
We have received more info on his mutation and even a new name for it. However, there still isn't much info on it. Every case of CF is different. Even if two people have the exact same mutation they can have totally different symptoms and severities. CF affects majority of the body and is very hard to distinguish severity amongst peers.
4. How common is CF? More common in males or females?
1 in 31 people are symptomless carriers of the CF gene. 30,000 people in the United States have CF. CF is in the top 5 genetic diseases.
CF affects both genders equally due to the gene it is located on (7).
5. Does he feel bad? Or does it effect him like that?
Thankfully, R doesn't feel bad. So far when fighting infections he is still happy. I have read that once he gets older and his infections change the way he feels will change to. Many of the bloggers I follow write about exhaustion, fatigue, and flu like symptoms. But remember every case of cystic fibrosis is different so we will just have to wait and see how he progresses. We are determined to not let cf take his joy.
6. Public school?
As of right now, we have all intentions of sending R to schools and encouraging him to do everything. However, if he starts school and ends up in the hospital more than he is in class we will reevaluate our decision. Of course he is going to miss more than the average Joe but as long as he can keep going he will. Once he gets older we will give him the opportunity to decide which route of schooling works best for him. It's hard to say right now where he/we will be at in 4-5 years.
When he starts school I will be a disaster. I want to shield him from everything and it is heartbreaking to know that I cannot.
Thank you guys so much for your questions I hope I was able to clarify a few things. If you think of anything else please comment it below or feel free to email me firstname.lastname@example.org
2 Side Notes:
1. We go back to clinic tomorrow
2. Our house is filled with mold and we had to evacuate. (Thankfully Seth's parents are letting us stay in their camper on Seths grandparents land) (thank you!)
Please continue to keep us in your prayers.