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I have been dealing with O2 for about 10 years now, so I will share my experience. Doesn't mean it will be true for you, but at least you'll have a bit more info. 1) yes, you can be on O2 for awhile a get off of it. 10 years ago I was on it for 6 months recovering from a very bad...

How wonderful for them that you are thinking about preparing them for the future! That is a true gift. You raise terrific points about finances and insurance coverage. Given how young they are and how many changes are already happening in the health care field, it's probably not possible to...

My mom was going to respond but she and I talked about it and she thought it might be interesting for you to hear from a kid what it's like to have a parent with cf. I am 20, and am home this weekend visiting from college. My parents adopted me when I was a baby, and they didn't know my mom...

anyone awake to chat?

I've had a hillrom vest for 10 years. Over the past two years I have gained enough weight that I needed a larger vest. When I called to ask how much a new one would cost, they said nothing, and sent me a new one for free. They also asked if I could use new tubes, and I said the old ones...

We have a cf center, but I do not like the docs there. Very condescending. They have developed a regimen and they don't want to adapt it to each individual's needs. I have gone to the same pulmonologist for about 15 years. He is very up on cf and is willing to be creative in trying new...

Lindsay, I'm right there with you on the exercise. I know intellectually that it's good for me. But even if I could figure out the time after putting in an hour and half in the AM and again in the PM on meds and the vest, working, cooking, handling some house stuff, being with my family, the...

I have a somewhat different experience. I had my first anxiety attack about 10 years ago. I have a great relationship with my pulmonologist, who immediately reassured me that it is not at all unusual for people with chronic lung conditions, especially one as serious as cf, to develop...

Well, it explains why my FEVs are so low, but not how I've been so fortunate to make it so long. Interesting information. Debi 54 w/cf

Thanks for bumping this - have been thinking of Karen and Troy every day and wishing them well. Debi

This has been bothering me all weekend and all day today. I am so thrilled for you. Debi

Kimmie, I am deeply sorry for your loss. Thank you for being there every step of the way for your brother. No one could ask for more. You are a gentle and generous soul. I hope the wonderful memories you have will bring you some measure of comfort during this difficult time. Debi

What joyous news! Congratulations to you both! Debi 54 w/cf

It's good to know you now have a plan with the cf docs, and it sounds as if their wishes are now being heard by ICU. I will join with everyone to think powerfully good thoughts tomorrow for a successful transition for Mike off the vent. Bless him for fighting so hard, and bless you for seeing...

It's good to know you now have a plan with the cf docs, and it sounds as if their wishes are now being heard by ICU. I will join with everyone to think powerfully good thoughts tomorrow for a successful transition for Mike off the vent. Bless him for fighting so hard, and bless you for seeing...

I am glad you are improving enough to go home, gather your thoughts, then go back for the surgery. That's certainly an upstat from where you were just a week ago. I am sorry you are facing surgery, and even sorrier that you have to make such a big decision. I'm not going to give you any...

I don't know if this helps at all, but I have been in ICU at Good Samaritan in Phoenix, and I hope you will feel free to continue to fight the ICU docs and insist that they let the CF docs have the ultimate say. If there is a way they can try slowly weaning him off the vent to see if he is...

My normal temp has been between 97 and 98 for as long as I can remember. And my normal blood pressure is about 90/60. However, if you feel different than you normally do, pay attention. Hopefully the extra rest will help. Debi 54 w/cf

Hooray for you and a world of thanks to your friend. Must be a relief to know what's going on, and I'll be looking forward to hearing about how well you're healing from here on out. Debi 54 w/cf

I hope there is some way to get all the doctors together and have at least a cf and a gastro come in together to talk with you and explain what's going on. And I agree with those who say not to do anything that does not feel right to you. Never underestimate your "gut instinct" - oh geez, no...