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We are in Hawaii now CF team is headed up by a Dr. Jane Gross at Tripler hospital. The team is excellent. My son has been in their care for 3 years now. As I would tell anyone you are your child's greatest advocate! They are a teaching hospital so there are many med students and resident docs so...

I spoke with a Dr. Brown at Vanderbilt and she was extremely helpful. She said there at Vandy they do a "case by case" in resections and then explained how they determine which patients would benefit from resections or lobectomies. Mind you that I prayed before I called and have been praying...

Well I found out the second mutation 1154insTC it is an insertion and the D508 so a deletion and an insertion??? Does anyone know about this one? I agree Aboveall again after just speaking to his doc. she is really advocating for this surgery she really believes it will benefit him in the long...

Ok so First I have called Vanderbilt and Thank the Good Lord they still have our phone number all our info. I also called SC so waiting on phone calls. Now I am going to call his Doc here and find out that mutation information. I am trying to keep my cool intact! I mean when the docs wanted to...

I know very little about the new drugs that are out there or that are coming out. Who is eligible to take these medications? I was told that He had the delta 508 I think that's correct and another "rare" allele??? If you have anymore information on this please post it or links. I get overwhelmed...

First off wow...Thank you all for the support and encouragement that I feel from reading all these posts!!! I wish I would have logged on earlier, but forums and how to use them used to intimidate me. I was actually wondering if I could get a phone consult from another CF team, so that is...

Thanks so much for all the responses. We are currently in Hawaii and getting a 2nd opinion here is next to impossible. We had the consultation with the surgeon today, and she recommended resection of the upper right lobe and the top portion of the lower lobe that shows focal bronchiectasis (sp)...

I am new to these forums. My son is 6 and was diagnosed at 2 and 1/2 and his doctor is recommending a right upper lobe removal and possible resection of the middle right as well. I am beside myself and any opinions, advice or feedback is really appreciated. Thanks in advance