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FOP updated the blog today. Pepe is really struggling and needs all of the prayers and good vibes that she can get right now. She is such a fighter!! <a target=_blank class=ftalternatingbarlinklarge href="http://friendsofpepe.blogspot.com/ ">http://friendsofpepe.blogspot.com/ </a>

My husband noticed blood in his stools this morning--not the dark-tarry-internal-bleeding type, but bright red blood type. He had a bunch of CF related appointments today anyway, so we called the nurse first thing this morning. When he got there for his blood draw they told him to go to the...

My husband got a new compressor and so has his old one and I am not sure what to do with it. It is a Pari Pro Neb Turbo. It works fine, though it hasn't been used regularly in a few years. Thoughts?

My husband wanted me to post this: He has been having some digestive issues that he thought was just some sort of CF flare up (stomach hurting, orange greasy stools, etc.). He has also been eating a lot of "Super White Tuna" sushi. For some reason he looked this us, and "Super White Tuna" is...

Reading some comments to the Ibuprofen thread got me thinking about looking into some more "alternative" therapies for my husband. Does anyone have any good resources for information about the different supplements? Also, any book suggestions for the anti-inflammation diet? I found this list...

It seems that everyone is stressed--and for good reason, there is a lot going on! I feel like CF just elevates my baseline and causes this underlying level of stress that is always there. So...I was thinking that we could also use a reminder that we need to be proactive in managing stress and...

My husband mentioned that he thought that he cultured more than just PA, so I asked the clinic and he actually cultures three different "types" of PA. Anyone know anything about the different types and what this means? Here are the exact words from the clinic: Organism 1 4+ Presumptive mucoid...

Okay, so some of you know that my SIL has been having some troubles with her stomach. She had an endoscopy yesterday which showed a hiatal hernia and some inflammtion in her stomach. They also took a biopsy of her stomach and small intestine to check for cancer and cealic's disease. I asked...

My husband has CF (was diagnosised as a baby). In 1997 he had a Genzyme genetic test done and they found one deltaf508 mutation, but his other mutation came up as "unknown." I know that many othter mutations have been found since 1997. Do you know if insurance would cover to have the genetic...

My husband started to have what he describes as "heart palpitations", with a "missing" beat every 5 to 10 beats. This happened yesterday and lasted for about 2 hours. Now, it has started again. Anyone have this? He did call the CF clinic, but wanted me to check on here too since you guys...

So my husband had his port placed about a week and a half ago. He said that his skin right over the port is numb--he can touch it and doesn't feel it. The skin around the outside is sore, it is just the center that is numb. Anyone else experience this? Is it normal or should he be freaked...

I have been doing some research on inhaled medications and have noticed that in many of he studies, the participants use a bronchial dilator before inhaling the HTS or antibiotic. So that got me thinking...is that a better way to do it then just doing the HTS/antibiotic "straight"? I asked Gess...

So my husband's recent blood infection was the same yeast (candida albicans) that causes thrust and other common yeast infections. My understanding is that antibiotics kills the "good" bacteria that normally keep the candida under control and when this happens there can be overgrowth. Gessner...

So my husband just got a new port and the new location makes it difficult to where his seat belt (the shoulder part, not the lap), especially like now when it is accessed. Anyone else deal with this and what did you do? Also, he has a very enlarged spleen (the size of a football instead of the...

We are having continued discussions with our CF doctor about using tobra in the eFlow. Initially the clinic told us that we couldn't use them together period. But, we had a very long chat with our CF doctor yesterday and she is still concerned, but isn't going to tell my husband not to use the...

My husband is currently in the hospital and they are giving him inhaled Tobi there. Last night when the nurse brought in his dose he told me that I had to leave when he did the Tobi, but really wasn't sure why (he said that maybe it could cause irritation to my lungs). They also hang a sign on...

So, my husband has been feeling really bad over the past couple of weeks, so the doctors put him on antibiotics and that didn't help. He continued to have high fevers, etc. So on Friday he insisted that they run a bunch of blood tests to see what was going on (don't even get me started on the...

My husband's doctor decided to put him on TOBI, so I sent an email asking for the formulated tobra since my husband uses the eFLow. The response is that she can't prescribe it because: Tobramycin and EFlow has not been studied, information that has been provided has been "hearsay." Because the...

The post about IUI got me thinking...is IUI a possibility when the dad is the one with CF? We are still very much on the fence about deciding what do about about children. I have this incredible urge to be pregnant and go that route. My husband is much more of the mindset that there are so...

My husband is interested in hearing how you have been successful in keeping your weight up. He is pretty small and wants to gain some, but in general has a poor appetite. Also, he has CFRD, so he is particularly interested in those of you that have this as well and what you do. Julie/Mark...