You are going to see such a relief in your life with a diagnosis. Getting him on the proper care regimin (incl. drugs and therapies that only people with cf do so don't feel like you could have been doing it) is going to boost his health so much you'll see stability you haven't seen in many years likely.
You will have to deal with the grieving of the diagnosis. Just remember it's a title for all those symptoms he already had.
Try to focus on the positive and don't get bogged down on stats or trying to learn everything about the disease all at once. Focus on what he needs to be well. After all this news may be shocking to him as well.
Two specific thoughts on staying positive:
With July 4th being around the corner. Your family should be more proud than ever to be American. There are many countries in this world that are not as advanced as the US (and other nations) in cf diagnosis and care.
Start to think about fundraising. I believe it can be a coping method (having impact on things you can change mindset) Check out Great Strides (the CFF's walk and biggest fundraiser). You could start right away or plan something such as a letter with a request for donations to be included in your holiday card.
You are in great hands at CHOP. They are very proactive which is a great thing. Barb Jansma is a great CF nurse coordinator. And we enjoyed working with Dr. Caboot. My son has cf only through genetic screening. He is symptomless in everyother way. The reason we had him tested was because I too have cf. My husband tested negative as a carrier in 2004 but through more extensive tests on my son he was found to carry two mutations.
Best of luck to you all. One thing's for sure. Summer 2009 will go down in history for you all (assuming a cf dx is forthcoming). You've found a great resource in this site!
You will have to deal with the grieving of the diagnosis. Just remember it's a title for all those symptoms he already had.
Try to focus on the positive and don't get bogged down on stats or trying to learn everything about the disease all at once. Focus on what he needs to be well. After all this news may be shocking to him as well.
Two specific thoughts on staying positive:
With July 4th being around the corner. Your family should be more proud than ever to be American. There are many countries in this world that are not as advanced as the US (and other nations) in cf diagnosis and care.
Start to think about fundraising. I believe it can be a coping method (having impact on things you can change mindset) Check out Great Strides (the CFF's walk and biggest fundraiser). You could start right away or plan something such as a letter with a request for donations to be included in your holiday card.
You are in great hands at CHOP. They are very proactive which is a great thing. Barb Jansma is a great CF nurse coordinator. And we enjoyed working with Dr. Caboot. My son has cf only through genetic screening. He is symptomless in everyother way. The reason we had him tested was because I too have cf. My husband tested negative as a carrier in 2004 but through more extensive tests on my son he was found to carry two mutations.
Best of luck to you all. One thing's for sure. Summer 2009 will go down in history for you all (assuming a cf dx is forthcoming). You've found a great resource in this site!