What does your CF effect?

[anonymous]

I know this sounds like a silly question- But personally my CF only effects my lungs- it does not effect my digestive system- I am not on enzymes and can eat any food and it is properly digested.

My question is, is there anyone like me? If so how old are you and what are your PFT's?

 

[beyerdug]

CF only affects my lungs too, and just recently with that. My pancreas is just fine. I don't know what my pft is. I had my first one in many years when I was sick a couple of weeks ago. My doctor only told me it was moderate. I will get another done in a month but my lungs are much clearer now.

 

[PLUCKY]

First pft in years? wow. I get one every 3 months. As for me mine effects the digestive system way more than the lungs. Until recently. My PFT's use to be in the normal to above normal for my age. My doctor says my lungs look like a 12 year olds with c.f. and I am 24 so I am lucky in that aspect, but man my stomach gives me hell. I believe C.F. effects everyone differently.

 

[Diane]

Cf when i was young , was barely detectable. I only had to take enzymes here and there and that was it. I started with allergies when i was 21 . Then around my early to mid 20's, the lungs started slowly showing some involvement here and there with a cough , but nothing major. Then when i was 31 i got cepacia, thats when my lungs got really involved in the mix of things. Now my status has changed......... NOW it is almost all lung involvement and barely any GI involvement. Oh yeah, and sinus problems also. My pfts are in the high 40's .

 

[Jem]

I am pancreatic sufficient. My PFT"S which are checked at every CF appointment (4-5 times a year) is 45. I had 1/2 of my left lung removed at 19 due to massive hemoptysis. I did well for many years then developed chronic bleeding again beginning around 1995. I had 5 pulmonary embolizations but this did not stop the frequent chronic bleeding so I had the rest of my left lung removed in 1999. Having the rest of my left lung out really improved my overall health greatly. I have not been hospitalized or on IV's since.

 

[ladybug]

I have had to take enzymes all my life, have much lung involvement (pft's in the upper 50's usually) and also now have CFRD.

 

[sarabeth87]

my lungs, stomach, and sinuses are all affected by CF. My brother is the same way as me. We have taken ensymes our whole lives. up until about 2 years ago our pfts were in the high 90s. they are both now in the 60s and 70s. and i've had 1 sinus surgery

 

[Tess]

I suffer all aspects with CF, my digestive has always been more
problemsome than my lungs. Sinuses are pretty bad too having
had 2 surgeries on them.

 

[Seana30]

Courtney is the opposite.

So far all it has affected is her digestive system. Her PFT's are great! I hope it stays this way for a VERY long time!!

Seana

 

[anonymous]

It affects my digestion I take enzmes and have cfrd my lung function is always 100+ percent so I think it affects my digestion more so than my lungs at least for now and still no hosptal admisisons yay! I only take enzymes nothing else

Jake 27
Melbourne Australia

 

[Debi]

My CF affects my lungs and, to some degree, my sinuses. I also have GERD, but have no problems with digesting any types of food. I had two sinus surgeries as a child, but have not needed any further operations. I haven't had my PFTs taken for many years, but I believe the last time they were taken they were in the high 20s. I use oxygen, but work full time and go everywhere. It's interesting to read about each individual's experiences.

Debi
54 w/cf

 

[anonymous]

I've had a litle bit of both. I have always had to take enzymes, but I have no problem gaining weight. I am actually overweight for my build and am trying to lose some. I started to do nebs when I was 14ish. I was dx at 2. My lungs stayed in the 90's until about 8 years ago. I am currently in the 60-70ish range, which is where I have been for about 8 years. I have had one sinus surgery that I do not think I needed, but I have no sinus problems. Maybe, once a year I am on an antibiotic. Before the surgery I was on antibiotics all the time. That was about 10 years ago. I have cultured pseudo only once and that was about 10 years ago, and then it went away. Not sure how or where, but that is what I am told
<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[john81john]

Hi,

CF affects my lungs and digestive systeme, just before 30 minutes I have finished my inhalation (10ml of Hypertonic saline and 15ml saline solution) and now I am eating my breakfast (I used 7 capsulles with Creon 25000 for 3 pieces of bread with chees and bacon)...
Another questions is, what kind of CF gene mutation do you have and how does it affect you...for ex. I have one celtic mutation(G551D) and R553X

 

[lynchmobshredder]

I have CF...my PFT's FEV-1 is in the 40%, my pancrease doesn't work,i have acid reflux disease(GERD) and i have a feeding tube. for some odd reason i dont have CFRD though?

 

[anonymous]

My CF has always affected my lungs and pancrease. I was diagnosed at age 2. At age 33 my osteoporosis kicked in on my hip ( just slightly) and I have Diabetes now too. I hate this diabetes!!!!!!!!!!!!!!!!!!!!!!!!!


Jennifer 34 years old with CF and CFRD

 

[LouLou]

to Kim, Diane and Jim with pft's in the 40's, does your doctor make any prediction on when it will be time to start getting considered for transplant? I know it's not until the 30's but do they make a prediction of how long it will take for you to get to this point?

 

[fugikitten2087]

It effects my lungs digestive system, heart, kidneys, joints, and bone density

 

[65rosessamurai]

As a child, my digestive system was the bigger problem. I would often have colds, and sinus infections, even had two surgeries done on polyps, but no serious trouble with my lungs until recently.
The only reason I see for my lung involvement to increase is due to an injury I sustained a few years back, and was unable to continue my rigorous training after that incident. But, I still seem to find ways to keep my pulmonary up. I do have some minor liver involvement, but that would be near equal to the digestive trouble I think.

 

[lynchmobshredder]

i was already asked if i wanted to be put on the transplant list. I told them no. and that was like 5 years ago. i think they told me that if you were below 45% you can be put on the list? but maybee im worng. Or maybee back then my PFT's were in the mid 30's.

 

[lynchmobshredder]

ive also just started getting scanned for ostioprosis. now that i am done growing and i was on steroids as a kid they wanted to scan me and look. I think my T count was not bad....but it will decline they told me. And for my PFT's they never told me how long it would be untill it go worse. Im sure it has alot to do with if you get sick or many other things. Even though my PFT's are low ive been feeling really good and have not been in the hospital sence 6/99! 7 years! ( i better keep my fingers crossed) LOL