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lol...how cool! I hope he's doing well!

Yes I would have him retested. I was diagnosed at 7 but never showed any real issues until my teenage years.

I just wanted to share this tip because not many people think to do this but it's greatly improved my hospital stays. I always bring a twin sized egg crate foam mattress with me to the hospital, with my own sheets. I put it on top of the hospital bed mattress and it has made all the difference...

Hey! So to answer your questions 1) Physiotherapy....what does she use to do airway clearance? Vest? Aerobika? or are you manually doing it? That might help us give you a better answer. But keeping her active and encouraging it is really important. If you can get her to lift weights, that would...

I was diagnosed at 7 and I was never able to cough anything up for years until I got into my 20s. It really all depends on the person, but for me, there are days when I don't cough at all and some I do. Some days I have a lot to cough up and some I have nothing. My lung functions are in the low...

I had headaches when I first started Symdeko as well. They went away after about 3 weeks for me. Still on Symdeko and doing well. Hopefully this is just part of the adjustment too.

I've had this tested a couple of times. From my understanding, basically this is a test to see how well your body's immune system works and is able to fight off infection. They look at your white blood cell count. Some people with CF have auto immune issues or are at risk of developing them.

I remember that study as well and a lot of people do continue to argue which is the correct order. I've tried both ways and personally I get more benefit out of doing pulmo after my airway clearance. The order I gave is the way 3 CF centers in Ohio have us do it but as previously stated by other...

The way she's doing them now is the correct order.. The order is supposed to be: Bronchodilator (albuterol or other) Hypertonic saline Airway Clearance Pulmozyme Antibiotic (Tobi, Colistin, Cayston) Steroid (Flovent or other) This is what the CF foundation or whoever recommend the order...

I had this problem when I was younger and my doctor changed the type of enzyme I was on. He thought it was more mental than anything and I don't remember having issues after. But I wonder if he's constipated. With CF patients we can still have bowel movements and be backed up as well. That might...

When meeting new people, I always fear the question of "what do you do for a living"? Since i'm not stable enough to work and don't want to get into detail about my CF, I always find it hard to answer this question. I want people to get to know me before knowing I have CF and the judgement...

I sometimes get it in my shoulder from doing IV meds and yes it's worth it. Strength training/ physical therapy will help. The important thing is to keep up with it.

It depends on the person. The insulin you do when you eat (short acting) is for the carbs you eat to cover only. You should have a sliding scale for additional insulin to do if your sugar goes above normal range to do to correct for a high blood sugar on top of what you ate. It sounds like you...

Your numbers are not that high at all. The thing to keep in mind is that your CF is also playing a huge factor in your high readings. Your body is fighting an infection and blood sugar numbers usually run higher when an infection is brewing. Another thing is when you're running high during the...

The Vibralung is still a newer form of airway clearance(maybe 4 years old) that uses a speaker that emits sound waves. You hold it in your mouth like an aerosol and that's it. It has 3 settings a low, medium, and high. Each setting sends out about 7 mins of different ranges of pitches building...

I've never felt nauseous while doing it but that was awhile ago. I now use the Vibralung which I feel is a lot more effective than the Vest and aerobika for me. The one thing I will say is the Vibralung does make me move quite a bit of mucus and sometimes when all that is coming up and out I...

Hey guys! Just wanted to update..I made the switch from Orkambi to Symdeko and I just completed my 6th day. I have to say I noticed I am getting up a lot more junk in a shorter period of time than I did on Orkambi. I feel like every time I cough I bring up more and more plugs than before, but...

Yes it can. I culture pseudomonas and it has caused me to have joint pain, body pain, fever, and swelling when an infection kicks up. It's called Reactive Arthritis. It's gotten worse as I've gotten older (I'm 32 now), but originally I never had pain issues with it when I was younger. The...

I just got approval though my insurance for Symdeko and will be switching over from Orkambi. Did anyone who has started on Symdeko have a sweat test done before they started on it? My clinic keeps talking about it before they start me on it and I can't seem to get a straight answer from anyone...

April is Organ Donation Awareness month. This month lets try and let people know how important it is to become an organ donor. Let's try and get more people to agree to do it so more of our fellow Cfers have lungs ready for them when they need it. Those of you who have had transplants, let...