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No..I haven't been to that site, will have to check it out. That's the thing about EDS, it has that 50/50 chance of passing it to your kids. My son as far as I know, doesn't have it, he does have a bad back at 19, perhaps the discs are a bit too slippy and he also has poor eyesight and a high...

Wow! I have only known one other person with EDS and CF, nice to know others with the same issues are out there. The hypermobility is something else, causes my joints to dislocate at will (dislocated my hip during childbirth) and I have pretty much everything else that goes with this syndrome...

Low muscle tone...I have CF and some sort of myopathy which makes my muscles in my lower legs, diaphragm and arms on the weak side. I don't think that they are related, if anything it is probably related to another inherited disorder that I have called Ehler's-Danlos syndrome, but you never...

I know that coughing causes some leaking....I think I am more prone because I also have had children and that my pelvic muscles are on the weak side. Coughing does not help....Even for those who have not had children, I imagine coughing puts quite a bit of strain on those muscles...especially...

As far as putting medical info on FB, she really should have asked if it was okay to share on her page. As others have said, it boils down to privacy...I personally don't put too much info on my own page. I do use FB as a means of updating my condition whenever I am in the hospital. Those who...

I use Kawasumi brand, it is cheaper than most other brands. As far as managing to do home IV's...I use my part D medicare insurance to get around that one. My plan covers generics through the doughnut hole (I hit that stage quickly as I am on colistin, my part D insurance picks that up in...

I get mine through Imed.com for the exact same reason as yours. Medicare does not pay for these supplies (unless you go outpatient and have them put it in for you, then it is covered. I know...strange and frustrating). Yes, you do need a Rx to buy your supplies (I get my huber needles, central...

I grow staph as well as PA, steno and occasionally B. cep (thankfully it's been awhile since that one has graced the petri dishes). Staph seems to grow with every culture and when it flares up, it sounds just like yourself....streaking to frank blood in my sputum, fevers, etc. I also start to...

Geez, so sorry you are having issues....I am not from Cali but I too have extra hypersal (wish I had the others to give you). Good luck, I hope everything works out for you. Jenn 41 wCF

I know that this is an old thread, but I had to chuckle when I read it....I think just about every one applies to my kids (now 19 and 21), right down to the razors in the shower lol. Putting back an empty milk carton always gets me, as does putting back empty cereal boxes. Not emptying the...

If your brother is a carrier, then your nephew has a 50% chance of being a carrier himself. I'm pretty sure of that...it's late and my math skills aren't so sharp this late lol. I would think it is better that the nephew gets tested....if his partner is a carrier, then it becomes very...

lol!! I hear you Gorf...everytime I go in, they always put me on those shakes. I too wind up with so many to take home by the time my admission is up (which can last a month...now that's alot of Ensure! lol). They also order them 3 times a day....I might be able to choke down one of them haha...

I don't know about the estrogen component and CF, but if her oxygen levels are as low as you say, she had better be taking her girl to the hospital (if she isn't there already) and push for CF testing. I hope that they find answers soon Jenn 41 wCF

I too have issues with extremely fatty meals...I have to be careful when eating out. I usually select foods that are fairly easy to digest and not loaded with fat (unless I am close to home, then I may risk that pizza). I take Creon with my meals, otherwise I have no issues, only with the fats...

Hahaha! Like his thread! A good laugh is great medicine for the soul....Here goes my contributions: If MacGyver did CF treatments, he would first make his own vest out of spare tires, wires and a few batteries..whatever was lying around. If Martha Stewart did CF treatments, the above would...

Good luck tomorrow...if he/she doesn't refer you, then make the appt to the center on your own if your insurance doesn't require referrals. I know of many people who did just that. I was fortunate enough to have a PCP who actually suggested that I get CF tested, not the other way around. I am...

I would go to a CF center for testing....how were you diagnosed as a kid? Via sweat testing? Sounds like you need to get this checked out either way. It could be CF, or not...but you need further testing at an accredited center. There, they will do sweat testing and genetic testing...more than...

I would let your team know what's up...usually pulmozyme, HTS, etc is held for a day or so. I have had a few minor incidents with a few tablespoons of blood at most. For me, it signified the onset of an infection and I went on IV's to knock it out. I also held chest physio for a day or two...the...

To me, it sounds like he needs a good clean out and to change his lifestyle...no excessive booze, exercise more etc.... Also, doing treatments is very important to maintaining lung health...chest physio, inhaled antibiotics if he is growing pseudomonas, pulmozyme and or hypertonic saline etc...

I think that they have a funky taste to them, especially if you don't swallow them quickly....it's hard to describe what they taste like...they almost remind me of plastic. Jenn 41 wCF '