@rains mom, you can send the user a pm, just go into your messages, there is a search box at the top, click search for user type in the user name it will pop up in another screen, click the icon to send a message.
@rains mom, you can send the user a pm, just go into your messages, there is a search box at the top, click search for user type in the user name it will pop up in another screen, click the icon to send a message.
@rainsmom, I already sent livingstrong a PM on your behalf. Also, you could try starting a new thread with her name in the subject line instead of just randomly asking for her in other threads. Maybe try asking the forum what it is you'd like to know from livingstrong and see if someone else can answer it for you.
@rainsmom, I already sent livingstrong a PM on your behalf. Also, you could try starting a new thread with her name in the subject line instead of just randomly asking for her in other threads. Maybe try asking the forum what it is you'd like to know from livingstrong and see if someone else can answer it for you.
<span>Hello:
<span>I was denied yesterday because I don't have G551D but have CF and have been lucky to date with good lung function however that's been declining gradually. The clinic was as helpful doing all they could however the VP of prescription authorization or a like title has the last say at BC BS Personal Choice and I thought that was good insurance it’s not it sucks. I have not given them my input on the phone yet but its not going to be nice as I sit here with a nasty bout of pancreatitis trying to stay out of the White Room.
<span>CF Services / Pharmacy were great.
<span>The information to date I’ve found on other mutations is trials are needed for each mutation and that sucks for people who can be helped now that are really sick. I’m not really sick yet so I can’t imagine others frustration. Let us know if any others have found a way around the traffic cop at the insurance company.
<span>Thank You for You Time,
<span>Steve
<span>Hello:
<span>I was denied yesterday because I don't have G551D but have CF and have been lucky to date with good lung function however that's been declining gradually. The clinic was as helpful doing all they could however the VP of prescription authorization or a like title has the last say at BC BS Personal Choice and I thought that was good insurance it’s not it sucks. I have not given them my input on the phone yet but its not going to be nice as I sit here with a nasty bout of pancreatitis trying to stay out of the White Room.
<span>CF Services / Pharmacy were great.
<span>The information to date I’ve found on other mutations is trials are needed for each mutation and that sucks for people who can be helped now that are really sick. I’m not really sick yet so I can’t imagine others frustration. Let us know if any others have found a way around the traffic cop at the insurance company.
<span>Thank You for You Time,
<span>Steve
At my CF appt today I was just told about them testing this drug on one of my genes, out of Grand Rapids, MI, but they are rating how well it works based on your lung function and both my brother and I have good to great lung function so we arent able to be part of the trial. I personally can't anyways cause I recently found out i'm expecting so I wouldnt want to be "trying" out any drug with a baby inside. But this is such positive news! I was so excited just to know that such a thing is in the works. When I first read about it only being for one gene I was excited for all the people it would help even if it wasnt me cause every step forward is a step in the right direction for every gene type. Good luck to all of yous who do get help from this drug. I'm happy to say my fears of my CF dwindle down more and more each year with every little piece of news I hear towards a cure. We are not doing to bad since the life span has increased in the past 20 years by almost double and break throughs are happening everyday! I have no doubt that in my lifetime I will get to hear the news that a Cure has been reached. I feel like i'm blessed to be a very mild case but my brother has it alot rougher than I do and so my heart goes out to all yous who are racing against time for this cure. I'm sure your prayers will be answered with advances like this happening!
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