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It seems to me that there is not much of a legal or ethical issue here. Mom is in charge and she is the decision maker. End of story. Bill

God Bless You, JennyCoulon & Crystalina084. Bill

Have you applied for State Health Assistance. The Social Worker on your CF Team can assist you. Bill

kyeev: It is my understanding that Kalydeco has been extremely disapointing regarding pancreatic issues. Bill

True my bad. Poor arithmetic on my part. He would have been about 5 for Cepro, and about 10 for pelmizime and tobi. I got my vest in the late 90s. Hell before I was dx, I was accused of being a drug addictand an alcholic.

I just wanted to bring this post up top. I haven't heard from any Moms who would wait the 40 minutes like Murgie did. Or maybe someone missed out on attacking me.

Harriet: We will ALWAYS be ok with each other. My second post had two things in mind. First she called me a bully. Second I was pointing out, based upon her history, that perhaps no hospital could meet her standards of COMPASSION & ATTENTION. Yes it was sarcastic but i refrainded from...

Harriett: I have read and reread the Code of Conduct, It does not say anything about supporting other members. It does say to respect others opinions. It does say, refrain from verbal attacks. As you said, its ok because I can handle it. Bill

I want to meet the Mother with a child in the hospital who is willing to sit and wait 40 minutes for a nurse to show up to do whatever so her son can eat. Everyone I know would be pressing the call button in the first 5 minutes. If that didn't work they would go in the hall to find a nurse...

Murgie: I have had about 70 hospitalizations for pancreatitis. I have been hospitalized 5 times for surgeries. I have had a few tune-ups. For all but the tune-ups I was in a semi-private room. I have seen about everything that there is to see in a hospital. I even saw a guy bring a gun, to...

Did you consider what that nurse may have gone through that day. Maybe a 3 week old child dying. Maybe her Mother is dying. Cut her some slack until you know the complete story. Your 15 year old son is not her only patient. The world, even the hospital, dosen't revolve around you and your son.Bill

Cyril: Your right. Besides I do not suffer fools well. Bill

Kittenface: You are not the only person out here with two elderly parents, two or more kids and a career. Like the rest of us you have CF. If you are concerned about your parents and your kids, your first order of business is to maintain your own health. You had your lung function tested...

CyrilCrodius: Thanks Cyril, I'm allergic to Toby and Pulmizime. Sailine is my only, current, med and I've been on it for more than 10 years. But given that you know more than the CF Doctors in two Boston Hospitals, I'll stop now. Bill

Call the Doctor who ordered it. He/She will give you all the info that you need. Bill

kittenface: You need to get to a CF Specialist at an APPROVED CF CENTER. Your lack of CF knowledge is scarry. Bill

It is VERY NORMAL. If you cough up a mouthful of blood, go to the ER where your CF Clinic is located. Bill

It depends upon your definition of CURE. If you are looking for a "silver bullet" or "magic wand," I doubt it. If you mean improved treatments and meds, you only have to read the newspaper or logon to CFF. When I was dx, at age 47, life expectancy was 18. today it is in the mid 30's and...

Sweet: Changing the CF Gene as you suggest would only be as easy as changing the brown eye gene in order to eliminate brown eyes. Bill

I have also. If you think that you will be allowed near a CF patient in a hospital, I have some oceanfront land in Montana that I want to sell you. Bill