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Either place (hospital or home) I don't sleep well. While in the hospital, I am woken up frequently and also am in the ICU which is notoriously noisy....not the nurse's fault, it's just that there are alarms for everything and there is a bit more activity in that unit. At home, I lose sleep...

I am so sorry Tom....you are living every parent's nightmare, I have tears just thinking about what you guys are going through right now. Please know that I am always thinking of your whole family and praying for strength during the worst days and comfort for when you need a hug. Jenn 40 wCF

I am so sorry Tom....you are living every parent's nightmare, I have tears just thinking about what you guys are going through right now. Please know that I am always thinking of your whole family and praying for strength during the worst days and comfort for when you need a hug. Jenn 40 wCF

I didn't have to see their doctor when I applied for SSDI....I was allowed to see my own pulmo for evaluation and he did all of the appropriate testing, notations. Scary that their docs are clueless regarding CF especially if you are trying to get disability based on CF complications. My...

I didn't have to see their doctor when I applied for SSDI....I was allowed to see my own pulmo for evaluation and he did all of the appropriate testing, notations. Scary that their docs are clueless regarding CF especially if you are trying to get disability based on CF complications. My...

I actually took up painting.....I love it and have found that it can keep me busy for hours when I am really focused. The nice thing is, they make great gifts.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Around the holidays, I keep busy making ornaments and make up gift baskets...

I actually took up painting.....I love it and have found that it can keep me busy for hours when I am really focused. The nice thing is, they make great gifts.<img src="i/expressions/face-icon-small-smile.gif" border="0"> Around the holidays, I keep busy making ornaments and make up gift baskets...

I agree, get it checked out...always better safe than sorry! I hope you feel better soon! Jenn 40 w/CF

I agree, get it checked out...always better safe than sorry! I hope you feel better soon! Jenn 40 w/CF

I don't have any info on that second mutation, but I just wanted to say I am glad things are looking up for you. It just goes to show how strong CF'ers are when determination and faith rages within. It is good that you had all of the pre transplant testing done, if you decline again, at least...

I don't have any info on that second mutation, but I just wanted to say I am glad things are looking up for you. It just goes to show how strong CF'ers are when determination and faith rages within. It is good that you had all of the pre transplant testing done, if you decline again, at least...

I think most clinics are pretty good....it's a matter of personal preference though. I have gone to a few, but I am happiest with my current pulmo who's been treating me for over a decade (even before my CF dx) for other issues, and now my CF issues. He is an university doc who heads the...

I think most clinics are pretty good....it's a matter of personal preference though. I have gone to a few, but I am happiest with my current pulmo who's been treating me for over a decade (even before my CF dx) for other issues, and now my CF issues. He is an university doc who heads the...

Matt, that sucks! That can explain your pain (as if pleurisy isn't enough) too. I hope you don't have to go back in, is there any way you can do all of your IV's at home? I can see going in for a few days though to make sure the right combo is being given to you and then doing the rest at home...

Matt, that sucks! That can explain your pain (as if pleurisy isn't enough) too. I hope you don't have to go back in, is there any way you can do all of your IV's at home? I can see going in for a few days though to make sure the right combo is being given to you and then doing the rest at home...

I've always wondered how they come up with the names of the meds we use..... Jenn 40 w/CF

I've always wondered how they come up with the names of the meds we use..... Jenn 40 w/CF

I use the VEst from HIllrom and have found that they are wonderful to deal with. Any time I need a new vest, hoses or whatever, I just call them up and within a few days, my request is sitting at my front door. There is no cost for this, they cover all of this for a lifetime. Insurance was a...

I use the VEst from HIllrom and have found that they are wonderful to deal with. Any time I need a new vest, hoses or whatever, I just call them up and within a few days, my request is sitting at my front door. There is no cost for this, they cover all of this for a lifetime. Insurance was a...

Wow....that's a huge mix up! Whenever I pick up my meds, I always take a good look at them, if they look different than what I am used to seeing, I always ask the pharmacist. Sometimes it is just another company making the same drug....but you never know! I have been given the wrong strength of...