All of that information is easily found online. The only questions that might require a CFer to answer is the most effective treatment, and how it might effect daily activities. Those answers will...
Jamcc, Yes, it is possible. There are quite a few CFers out there who have to work to keep weight OFF, not on. I am one of them. It would probably be worth a sweat test, or genetic screening. It is...
Not doing too well. Thanks to Orkambi, I lost about 6% of my FEV1 (from 43 to 37%) and about 15% of my FVC within 5 short weeks. Started talking transplant centers with my doc. If I fall too much...
As an aside, Orkambi does not help everyone, only about 40% of the people who take it. 40% have no real effect, and 20% (I was in that lucky group) were actually hurt by it....
for goodness sake! Has she had the genetic testing for CF yet?...
How are you any different before and after your diagnoses, other than your attitude toward it?...
I did not see CF specifically on the list. However, if you have needed a G-tube in the past to maintain weight, you don't exactly qualify as very very healthy, and I frankly doubt they would take...
Monica, It also depends on what CF mutation you have. If its a mild version and you are not prone to picking up germs or having a lot of lung issues, you're probably OK....
I think your CF nurse gives you sound advice. Its not worth the worry and putting yourself in harms way, especially when you have a child....
Sabrina, that was a typo, it is TOBI....
It is my understanding that 3% hypertonic saline is safe in infants and toddlers. It may need to be mixed with something like albuterol though, a bronchodialator. Pulmozyme is also used in infants,...
OK, that makes a lot more sense. I desat quickly below 88 when I sleep and do any physical activity and have a few times measured high 70's and low 80's briefly, before I got the oxygen on... NOT...
Yep, I heard you loud and clear. I was the same way as a kid, had to eat 5000-7000 calories a day to keep weight on and the only way was add quite a bit of junk food. So I ate that way until college...
Gemsi That is true for many with CF, but when I switched to a no-fat diet, I was able to go off enzymes AND no longer had trouble keeping weight on! Too weird, right? I was severe failure to thrive...
Gemsi, I assume with a sat in teh 70's you are on oxygen? If not, you seriously need to get some! Brain damage starts happening below 88. Do you keep a POC around?...
Gemsi, Just keep a close eye on the blood sugar. I went for a year without being diagnosed and my body was in such inflammation flux that I permanently lost a TON on lung function. (from 59 to 41%...
oooohhhh its all about the corn on the cob................... :)...
I believe those are both splicing mutations. I am fairly sure they are milder mutations....
Unless of course, one parents caries an untested for or unidentified CF gene, and then the child could have CF if the other is a carrier. And there is also such a thing as CF -like syndrome where...
Is your son being treated at an accredited CF center? 2X-3X daily CPT and nebbies? Digestive enzymes if he's PI?...
Actually, I've known many CFers, myself included, who've had horses and handles hay for decades with no aspergillus issue. I've mucked stalls since I was 6 every day of my life and not only fed hay,...
Sounds a lot like migraine headaches. I've had antibiotics make me more prone to those. Not fun....
Yes, I second the issues from prednisone. It can really mess with your blood sugar. Because of this, and the long-term negative side effects, I'm on methytrexate, a chemo drug that is also effective...
Gemsi, Ugh, sorry about the hospital visit. Cant you start stuff at home? Glad to hear your gtt was fine :) I can easily tell when I'm getting hypoglycemic. I get fuzzy-brained, sweaty, and finally...
Gemsi, Steroids, antibiotics, an infection, stress -- they all can elevate your blood sugar temporarily (matter of days, or weeks) My annoying problem right now is my pancreas ocassionally puts out a...
Meech, Out of curiosity, what's your A1C? And if you dont mind me asking, what is your target BS reading 1 hour after eating and 2 hours after eating?...
Yeah, LanieG. Since there is now an adult CF population, about 40% of us develop diabetes to some degree. Makes sense since our pancreas' are usually kaput. I knew I had hypogycemia issues in my...
Hi all. I have Cystic fibrosis, and one potential complication is CFRD, or CF-Related Diabetes. It is very much a combo of both Type 1 and Type 2 diabetes. Anyhow, I'm on 3-4 insulin injections a day...
Hi Smiley. My husband and I wanted a family, neither of us wanted to take a chance with bio kids (I have CF, dyslexia, he is ADD, genetically high probablility of carrying CF gene) especially my...
There are several strains of bacteria (staph, H. influenzae, and a few others) that love to colonize CF and COPD lungs. Yes, the infections can be passed back and forth, especially if the person with...
And even if you do want kids, there are tons of options out there too. :) We have two amazing little ankle biters. OK, they're actually 9 and 13 now, but hey............................
Hi, I'm 43, with CF (DDf508). I am also a mom of 2 amazing kids, so I have that perspective. I certainly do not blame my parents for me having CF, they had no idea. However, if I were a child in this...
Its very possible that newborn screening did not pick up a less common CF mutation. Most people with CF have NO history of it in their family. Get a full genetic test from a certified Cf center and a...
If he feels like your soulmate, go for it. My husband and I started dating when I was 17 and he was 15. We dated 3.5 years, then took a break for some of college and grad school. We both dated...
There are mild cases of CF like this. CF can involved GI and Lung, lung only, or GI only. There are many modifyer genes, sometimes the illness does not really seem to "kick in" until later in life....
Hey Gemsi, I know where your coming from. This past week I found out my FEV1 dropped to 44% AND I have CFRD. That on top of starting to lose my hair from upping the dose of my chemo drug....well, its...
Hmm, I'm a woman w/CF married (almost 20 years now, whew!) to a man w/o CF. Chance2013, your husband must be a tough man, 2 transplants, wow. We have two daughters, both adopted, the elder from...