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Posted By : Dionat - 11/12/2015 3:44 PM
So here is the story, my sister has had breathing issues, a horrible cough that brings up phelgm and lots of other issues when she turned 16. She was diagnosed with CF because they found mutliple Cysts in her lungs and a couple in her kidney and all this hit us pretty hard. Now, I'm 19 and for the past 6 months or so I've had a cough in the morning I don't spit anything up it's more of a feeling of something in my throat always needing me to clear it, I thought it was post nasal drainage because it goes away after the morning passes (I sleep just fine). After seeing a doctor about it he said it was caused by swollen vocal cords due to straining and coughing when I got a cold 6 months ago so he prescribed me Prednisone which didn't work so I'll be going back to him on Monday as well as I'll be getting an xray tomorrow. However, now I'm freaking out because I'm wondering if they are going to find cysts in my lungs or diagnose me with the same thing (I've seen the effects it's had on my sister). I don't have any symptoms of it really, I don't have issues breathing, don't get sick to often, my nails don't appear to be clubbed so I don't know I do have a couple things like I don't go to the bathroom but like once a week or so. (Don't know if that's got anything to do with it). I'm going tomorrow to get an xray but the wait is murdering me and driving me insane.

Posted By : Gemsi - 11/13/2015 5:29 AM
Hi skyvast,

I know it's easier to say than do, but try not to let yourself get worried about this. I'll say from what you've just said it doesn't sound like cf. Also I'm very shocked they've diagnosed your sister just from an xray. Have they not done blood tests, a sweat test? If these things haven't been done they should have been. Not only that but they should test close family members also, which would include you and your parents. The blood test is actually pretty vital that they do on your sister as there are some new medications that are out, kalydeco and orkambi that target specific mutations of the CF gene and don't treat every CF patient. To put your mind at rest they can give you a blood test and should do if you ask and say you're worried.

Also just to add my little sister who doesn't have CF usually has more coughs and colds and tonsilitus than my brother and me and we both have CF. She just has a lower immune system than us I think.

I hope the xray goes ok and it comes back clear with nothing to worry about.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

Posted By : Dionat - 11/14/2015 2:06 PM
No, they've done blood work, sweat tests, x-rays, cat scans and she has all the symptoms of it as well. As for me, nothing has been done yet, I feel fine. And my cough has been clearing up a bit lately, I was told it was due to swelling in my vocal cords causing me to feel like there is something constantly in my throat. I don't know what that means but I was prescribed Prednisone but that didn't work, however lately I've been taking Turmeric and some Probiotics and I don't seem to be getting that throat clearing feeling that much, it still bothers me sometimes though. I'm just constantly stressing that they could diagnose me with it even though I doubt it my mind is so hard to deal with.

Also, do you think that if this is all CF my sister has and what not that I could be a carrier? I heard there is a chance like 1/4 that the person could be normal and not a carrier? Just wondering. I am 19 though.

Post Edited (SkyVast) : 11/14/2015 1:24:31 PM (GMT-7)


Posted By : Gemsi - 11/14/2015 4:00 PM
It is possible that you could be a carrier, yes. However for the cf gene to cause problems, you need 2 copies of the gene, but a carrier only has 1 copy from one parent. Some say carriers are more prone to infections but it doesn't really make much sense and there's not been enough studies in that to prove anything. People with cf actually have amazing immune systems, if anything they're hyperactive and work really well to fire in white blood cells. Because of the extra sticky mucus cf patients have becaise of salt/water transport it traps the white blood cells and makes everything even stickier. I would think going by this if carriers did have symptoms it would be that they had better immune systems not worse.

As you are 19 you can ask to be genetic tested to see if you are a carrier so you can look into your future of having the carrier gene and possibly being able to pass it on to any children you may have.
Moderator of the Cystic Fibrosis forum

Hey, I'm Gem with CF, age 29 and diagnosed at 2 years old. I'm no expert but having CF myself I've learnt a few things along the way.
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum, Proximal Myositis, Polyarthralgia

Posted By : Dionat - 11/15/2015 10:21 AM
Gemsi said...
It is possible that you could be a carrier, yes. However for the cf gene to cause problems, you need 2 copies of the gene, but a carrier only has 1 copy from one parent. Some say carriers are more prone to infections but it doesn't really make much sense and there's not been enough studies in that to prove anything. People with cf actually have amazing immune systems, if anything they're hyperactive and work really well to fire in white blood cells. Because of the extra sticky mucus cf patients have becaise of salt/water transport it traps the white blood cells and makes everything even stickier. I would think going by this if carriers did have symptoms it would be that they had better immune systems not worse.

As you are 19 you can ask to be genetic tested to see if you are a carrier so you can look into your future of having the carrier gene and possibly being able to pass it on to any children you may have.


I will def have that done. What do you think this tickle the bottom in my throat is? Every late morning I seem to get it, really irritates me and if I laugh I normally cough. Don't know why I have it, maybe it's something due to the swelling.

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