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Today is Grandparents Day and wanted to shout out to the Grandparents, that get us through, support and with deepest love for our precious Grandchildren, Gran Daughters, Grand Sons with CF, and even CF Grandparents that are out there. ;)
Thank you from the bottom of our/my hearts. I am SO...
I agree with bbarry. I just wish the fostering/adoption process wasn't so expensive or complicated. Bbarry, that is awesome about your baby with CF, you showed strength when you knew there would be a possibility of hardships and it doesn't distort the way you see YOUR son !
What a wonderful blessing for MikeInMT, and hope you continue to do very well. I am on FL Mediciad, and ssi aswell. These programs are wonderful and truly are lifesaving to those who really need them. I pay an extremely small co pay for some of my visits to my specialists, but that's it. Alot of...
Invest in a good AC, keep OUT of the hot weather,- if you go out, take Salt tablets with you and LOTS of salty things like chip, pretzels, salt shaker. Drink plenty Gatorade,G2, water WITH some salt. Take it easy in the heat. We have had a rough summer here in South Florida, daily 90's even...
This is very selfish they ignore you and your CF, Don't bother to take at least some consideration for your CF or for OTHERS without CF in spreading germs! All you can do is show kindness while at the same time perhaps not being near them for a while. God loves you and doesn't want you getting...
Yes, they most definitely do cover all costs for a transplant. Contact your local state Medicaid or Medicare, alot of those procedures require prior authorizations,medically appropriateness and following protocol and steps. However, you must be deemed low income or disability, or 65+ to be...
I wish they would come out with infer-red sensor technology soon for diabetic monitoring. It would be awesome not to prick my finger 6-8 times a day. Just like with oxygen sats, the beam is suppose to "see" sugar in you blood. Being diabetic since I was 16, my fingers,- even with the best most...
Hi everyone!
I thought i'd like call the attention of the dangers of medical trash with regards to our CF equipment and small parts for those who have their pets. My little 1 year old boy doggie recently had a very scary episode of a blockage and had a narrow escape from the vet.
Here is some...
I really hate bleeds, I think it is the most unpleasant thing with CF, it is very scary and I am most scared if it ever happens at an inappropriate place, like out eating somewhere or out some place having fun, or worse yet on vacation far away. I don't worry about it though, if it happens it...
Hi! I really love music, and have play some instruments all my life. A little Piano, recorder, fiddle and recently got back to playing and really trying to learn, instead of just by ear. At my college, I want to take a music course credit soon. But my most recent has been playing the Irish tin...
I just came off ivs after 3 weeks and once I get my butt back to the gym, I hope this doesn't happen to me!! I remember very clearly a few years ago when it did the first time ever. Did my best 15 minute run. Everything was fine, went home, ate dinner, FELT GREAT, then during my nighttime...
Do you do hypertonic saline? If so, that leaves a magic salty dust hehe! I use regular tap water BOILED, then rinse my needs with soap water and dry them.
I hope this is the right thing to do. I have tried baby bottle sterilizers like the one that comes with cayston, but after 2 uses USING...
Hi justbecauseyoudontseeit,
YES, albuterol is VERY big cause for insomnia, for awhile I didn't know why, I would just lie there with my eyeballs wide open(VEST) after a treatment, Til I figured out eventually, after no DR tells me, it was the albuterol. For my night routine I split my dose of...
I have a weird sleep cycle to. I need 10 hours or sleep to feel my BEST. I can get by on 9 if I'm feeling good, The average 8 hours is NOT enough and I get tried quickly. When I have an active infection it seems all I do is sleep. Go to bed at 10PM and wake up at 10AM! Then nap again in the day...
I have been wheezing like HEWW HAW donkey after Cayston! It kicks my PA controlled, but God awful wheezing, I decided to today try to dilute it, will see how that helps.
Hi,
So today I decided to dilute my Cayston a little more, because I was having terrible after bronchospasm /wheezing which I think is connect to the Cayston. Using 2 little sodium chloride vials in the box, instead of the usual 1.
So far so good, alot better! It is FAR TOO STRONG with just...
Hi TonyaH,
This definitely sounds like Lequin side effects and if I were I would take him off it immediately and talk to your doctor asap. This stuff has damaged peoples body and brains permanently and the FDA and pharmacist giants don't want to talk about it, but the literature is out there...
Well HIV is obviously a disease, so no, I don't think so in the relative context. Transplant drugs do lower T-Cells and B counts, but I don't think as dangerously low like in HIV. Anti rejection drugs act as artificial immune suppressant kept at a constant level and not progressive worsening of...
I am not looking forward to this whens it my turn. My sinuses are now totally inflamed, and eventually probably need to open up in there!
Coughing up blood= inflammation= INFECTION. Chronic inflammation weakens blood vessels in the lungs. I hope you call your doctor when cough up a ton of...
This is a tough drug, and honestly think they could give you something else. I will be honest, its HORRIBLE- FOR ME, that is, EVERYONE one responses differently! Its up to you to try. My experience, I would get very bad insomnia form it when I can only "sleep" 4 hours, and then jolt up from...
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