New here. No diagnosis. Questions about testing.
Hi. I know that you all, unfortunately, have a lot of experience and knowledge about CF so I hope you don't mind me crashing your party. :o
My son just turned 18 yrs old. A while ago, he brought this white bubbly rash on his palms to my attention. You know where I'm going with this. I did some googling and brought him to the dermatologist. He immediately confirmed my amateur diagnosis of Aquagenic Wrinkling of the Palms. My son said that they really start to hurt after his shower and the skin just falls off. The doctor prescribed some Aluminum Chloride solution to apply to his palms but my son never uses it. He has high f...
Source: Cystic Fibrosis Adults Forum - July 29, 2015 Category: Respiratory Medicine Authors: Stacey James Tags: Adults Source Type: forums
Dating another CF person
Just curious if anyone else has dated or is dating another person with CF? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 28, 2015 Category: Respiratory Medicine Authors: semnle34 Tags: Adults Source Type: forums
Tube Feedings versus "Blenderized Diets"
I have had a g-tube for many years and without it I just can not gain weight. I also have been an advocate to use your g-tube to your nutritional advantage. http://forum.cysticfibrosis.com/thre...159#post911159
I struggle like all of us but recently I discovered an entire community of "Blenderized Diet" tube feeding advocates and feeling re-empowered to take this g-tube feedings to the next step. Curious to see if others with CF and a G-tube are doing this?
248774.jpg"Let food be thy medicine and medicine be thy food. ― Hippocrateshttp://www.foodfortubies.org/
Feeding Tube Awareness Foundation...
Source: Cystic Fibrosis Adults Forum - July 27, 2015 Category: Respiratory Medicine Authors: rmotion Tags: Adults Source Type: forums
Stenotrophomonas maltophilia
Hi. Has anyone been colonised with Stenotrophomonas masltophilia. What are your symptoms? What are you treated with? Did it eradicate it and if so how long did it take? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 26, 2015 Category: Respiratory Medicine Authors: chrissie9000 Tags: Adults Source Type: forums
Mystery illness - seeking opinions
Hi! I guess I am just looking for opinions on whether or not I should seek CF testing. I'm sorry this is so long! Thank you in advance to anyone who can offer some advice.
I've been "sick" on and off for a few years now. As a child I had strep throat A LOT until my tonsils were removed. I was also suspected to have asthma. I don't know how it was decided I didn't. I cleared my throat absolutely constantly but to my knowledge this was not investigated. As a preteen I had a heart murmur that apparently went away and had a couple fainting episodes and was diagnosed with syncope.
I was pretty healthy through my t...
Source: Cystic Fibrosis Adults Forum - July 25, 2015 Category: Respiratory Medicine Authors: Rtn87 Tags: Adults Source Type: forums
Mobilaire compressor switch broke?
We've had our Mobilaire compressor for nebs for 4 years. This morning it would not shut off. The switch on the back would not shut the machine off when switched in the off position. Anyone had this happen before? I unplugged it to shut it off. The motor is completely fine. Shows how well it works when a switch breaks before the motor.
Anyway, guess we'll need a new one... (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 25, 2015 Category: Respiratory Medicine Authors: Rebjane Tags: Adults Source Type: forums
Bleeding - Rifampin???
I am currently on Rifampin, ethambutol and Azithromycin to treat MAC. Over the last two weeks I have had blood in my stool 3 times, bright red. Rifampin is known to cause bleeding as a side effect. Has anyone experienced this while on rifampin? Did you discontinue it right away? Thanks for your help......I will be seeing a GI specialist soon. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 24, 2015 Category: Respiratory Medicine Authors: 4hats Tags: Adults Source Type: forums
Rumor mill churning re: Vertex drugs
Hi all!
I have recently read a few somewhat concerning things on social media regarding Kalydeco, that I had not previously heard anything about. Instead of spending hours googling trying to glean info, I thought I'd ask y'all (I say y'all now) on here because we have so many super knowledgeable folks. Because I want to get correct info and not perpetuate what is, perhaps, false info, I want to clarify that these things I have read came from peoples' personal facebook posts about it. These aren't from news stories or journal articles etc.
Anyway, the first thing I heard is that many people (men and women) on Kalydec...
Source: Cystic Fibrosis Adults Forum - July 23, 2015 Category: Respiratory Medicine Authors: triples15 Tags: Adults Source Type: forums
help building muscle post lung transplant
So I had a lung transplant in 2004 11 years ago, am 39 now, male, with CF, I feel like Im a good weight considering my size and don't necessarily need to put on any more just general weight but do want to put on some muscle weight. Can anyone direct me to a good routine of getting into? I do have some dumbbells and weight bench, which I occasionally do but need a good plan on getting more muscle in my arms and legs. Or maybe some of you with CF who work with weights can give me some insight on doing this. Thanks - See more at: http://forum.cysticfibrosis.com/thre....sQneMV7J.dpuf (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 21, 2015 Category: Respiratory Medicine Authors: thisisme Tags: Adults Source Type: forums
a note from Tim Wotton What is on your Bucket List?
Dear all,
Heads up that I feature (filmed on the London Eye discussing my battle with CF and daily mind-set to appreciating life) in a BBC Wales documentary Before I kick the bucket as a young lady with cancer, Rowena Kincaid, looks into whether she will write her own 'bucket list'.
http://www.bbc.co.uk/programmes/b063034k
It's on this evening, 21 July, at 10.35pm on BBC One Wales (Virgin 864 and Sky 952) with the hope that it will be picked up and shown on the main BBC networks soon. Rowena was on BBC breakfast TV this morning...
If you are unable to view it in real-time, you can see it via the link above from to...
Source: Cystic Fibrosis Adults Forum - July 21, 2015 Category: Respiratory Medicine Authors: Imogene Tags: Adults Source Type: forums
xray showing even more nodules in my lungs and mucus plug still there and more
I went to doctors the other day cause I was really not breathing good rember I just got out of hospital bout maybe 2 months so did pft was low at 52 usually my base is 58 so I was worried then he argued with me over having pluracy I told him it was ur staff in the hospital that said I had it then I went to er they said I had it and je said I have mucus in there but not a plug agian I told him it was his team who told me and showed me on the xray the plug. This is a new adult cf doctor they have now my first time goin cause they just made a adult cf dept but I have seen theae guys before while in hospital anyway he didnt th...
Source: Cystic Fibrosis Adults Forum - July 20, 2015 Category: Respiratory Medicine Authors: cam Tags: Adults Source Type: forums
when did your symptoms start to show?
Now I know everyone is different..... different mutations, and even the mutations though may they may be the same. Affect the persons differently. But I was wondering as a oarent of one w/ cf (ddf508) well when did you start showing your symptoms? How when the cough realky started forming? Are there any ddf508 that are can digest food? What types of excercises do you do? Anyone on kyldeco, or other and gotten better? (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 17, 2015 Category: Respiratory Medicine Authors: lrs2015 Tags: Adults Source Type: forums
transporting your nebs/meds
Hi all! How do you carry your nebulizers and medicines around? I travel overnight a lot so transporting all my stuff and trying to keep it clean and safe is a big thing! How do you manage it? I usually just let it jumble around in a plastic bag but I'm sure there's a better way. I'm talking breathing treatment stuff..inhalers, nebs, the meds themselves. I'd love to buy some kind of holder or something that's specialized for holding multiple nebulizers and liquid meds but I don't know where I'd find one, price, etc. (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 17, 2015 Category: Respiratory Medicine Authors: sasha Tags: Adults Source Type: forums
Foods that make you FART...lol
(FART)
Just wondering as to what foods make you gassy/fart.
My choice of food is Hot Dogs!!
LMAO (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 16, 2015 Category: Respiratory Medicine Authors: Cutecurlz Tags: Adults Source Type: forums
Immunosuppressant meds
Does anyone know how being on an immunosuppressant could effect cf? I have an auto-immune condition and my neurologist is contacting my cf clinic to find out if it would be ok to start me on one. I just wondered if anyone had any experience with this?
thanks (Source: Cystic Fibrosis Adults Forum)
Source: Cystic Fibrosis Adults Forum - July 16, 2015 Category: Respiratory Medicine Authors: meech Tags: Adults Source Type: forums
