Search results

A few years ago, I found it necessary to change CF Clinics. Health wise, It was a life saving move. Good luck Bill

Krystin: I was diagnosed at age 47, Up to that time no Doctor, that I had seen, could detect any CF symptoms. A couple of things, you need to be seen by a CF Specialist at an approved CF Center. Mayo is an approved CF Center but very few of the Doctors are CF Specialists. Genetic testing is...

Chase 10: I would suggest that you call Customer Service at Hill-Rom.

Jeannie: It is cases like this that I am willing to put up with a bigot like twisted. Unlike him, I can help.

Eimear: My second mutation is V562I, a mutation that was discovered in Northern Ireland from only 7 families. As it turns out my 3rd Great grand father left Louth sometime between 1800 & 1820. Delta F508 will be the predominate mutation and "likely" DD will have more digestive problems than...

Delta F508 is the most common mutation. CF is a disease that you are born with, she has had it for 22 years. Nothing, in her life, has changed except she will be getting the proper care for this disease. Like her, I have Delta F508 and one rare mutation. She must be seen at an approved CF...

I was dx in 1987 at age 47 after two negative sweat tests. Because I had numeral bouts of pancreatitis and other "symptoms" and the leading CF Doctor (of her time) making the dx, CF it was. In the early 60's they discovered that I had Delta F508, after testing for only 250 mutations. In 2011...

The older compressors (pre 105) actually had a use clock in the back. The 105 has the clock in the digital readout. On the screen that gives you a choice between NORMAL or CUSTOM, press the off button. Upper right of screen will give you total hours used. Bill

I would suggest that you take the (some) Creon on first bite. For me, half at first bite and balance upon completion of the meal.

Many years ago, I stopped attending live theater. I am extremely selective of the movies and the day and time that I will attend, if I do at all. It is not the function of the population of the world to adjust their lifestyle or life pleasures to my disease. Rather, it is my responsibility...

OPPS, your profile states that you live in New Jersey. Perhaps you could schedule a trip home and at the same time a trip to John Hopkins.

You were tested for 13 mutations, there are almost 2000 known mutations, any two (2) will cause CF. You do the math. The problem is going to be, getting your insurance Company to pay for a FULL CF SEQUENCING. If you can get past the cost/ insurance issues, absolutely have it done. Stop...

Jaimers: I wish that you had posted your PM here in public. Having said that, please be assured that I have a reasonable education and a serious understanding and control of the English language. I read the ORIGINAL OP three times before my three word reply. I understood the post and I...

Imported: The OP was about 10-12 lines in length. She deleted all but one line. The post that I replied to was not what you now read as the first post in this thread. Bill

See Jean, I can get into trouble, without ever trying. Bill

Jailmers: You are in your 30's and you have CF. Do you understand the difference and benefits of ORAL and IV antibiotics respectfully and at what age did you become aware of the difference. Bill

I'm sorry, it is just impossible for me to believe that anyone with CF, who is 31 years of age, doesn't know the difference between ORAL and IV antibiotics or the benefits thereof. I can take you to any CF floor of any Children's Hospital in the US or Canada and every patient there will tell...

Your joking right?

LL If I were her, I would get second opinions, as stated above. Bill