20f just diagnosed w/ CF...a couple questions

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anonymous

New member
Like I said, I'm a 20 year old female, and I was just diagnosed w/ CF over Easter weekend (a couple months ago). I thought I had asked my doctor all of the questions I had, but after reading these boards and doing some research I have a couple more questions and I was hoping someone could help answer them <img src="i/expressions/face-icon-small-smile.gif" border="0">

1. Right now I am pancreatic sufficient (not sure if that terminology is correct, but basically my pancreas is not really involved and I don't have to take enzymes or anything). Since CF is progressive, do all CFers eventually become pancreatic insufficient at some point?

2. Again, I don't really have many digestive problems and I have no trouble maintaining a healthy weight. However, I have had some extremely severe blockage problems (3 times in my life) that I've had to go to the ER for. I've never experienced so much pain in my entire life, but they just gave me an enema, even though I had already tried that, and it never worked. Eventually things got better after a few days, but is that related to CF; does anyone else experience that? I eat healthy (and lots of fiber, and my dr. put me on citracel daily since I was having those episodes), so I was just wondering if that was related to CF.

Thanks so much!
Debra
 
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DebbieC

New member
Hey,
No, not all Cfers have to take enzymes. As long as your stools are "normal and your weight is good, you'll be fine. But taking them isn't all that bad, so don't worry if you eventually have to. Your blockage is also normal among CFers. Some of us use laxatives regularly. Are you at an acredited Cf center? You can find one at the CF foundation website.

I sometimes use Miralax to keep things going.
Debbie
24 w/ CF
 
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anonymous

New member
I get blocked so much I have a running script fo colyte otherwise known as go lightly, at one point I had to drink 2 gallons of it a week. Yuck!! I just had a PEG put in on tuesday so now I get to flush it through instead of having to drink it. I do have digestive problems though and have to take 8 to 10 enzymes per meal. It's called DIOS, distal intestinal obstruction syndrome, or meconium ileus in infants. My Doc explained it to an intern once while I was in his office. He said we develop a flabby colon caused by being blocked sometimes and having the oppisite others. It really is painful, it kind of feels like childbirth without any breaks between the pains. We've tried every laxative availiable I think but they don't seem to help, at least not for me. cfNana
 
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anonymous

New member
Tom, I'm not sure what you mean as far as 'what was my diagnosis factor.' As far as being diagnosed; I was tested as an infant because I wasn't gaining weight and was listed as "failure to thrive." My first sweat test was positive, and then they moved me to a certified CF center, where all of my tests were inconclusive. After doing further testing on my stools (the gene had not yet been identified in '84), they decided that I did not have CF.

I've chronic sinusitis my entire life, a couple episodes of pneumonia, and frequet bonchitis. After having a terrible cough that never really went away for a couple years I started researching CF, found out that I had a lot of the symptoms, and decided I should get retested. I got retested over easter break (positive sweat test this time), and genetic results confirmed that I do have CF; it's a milder case though.

CF mainly just affects my lungs right now, and I have asthma too, so that doesn't really help. I'm getting sinus surgery next month (I've had 2 already, prior to being diagnosed w/ CF).

Hopefully your question was answered somewhere in there! <img src="i/expressions/face-icon-small-smile.gif" border="0">

-Debra
 
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anonymous

New member
Just a quick question..... How do people determine that they have a "mild" case of CF? And can this "mild" case fluctuate into severe as you get older and get more of the signs & symptoms - or as your lung function deteriorates? Just curious because I asked my doctor once if I had a "mild" vs. "severe" case and was told that "an elephant is an elephant".
 
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Emily65Roses

New member
If someone says they have mild CF, generally that only means "for right now." CF changes as you get older, even if you're mostly healthy. I know people with PFTs up and over 100%, and some of those people might say they have a mild case. But more than likely, as they age, their PFTs will go down. If a CFer is ever mild, almost every time, it goes from mild.. to moderate.. to severe.. before they die.

Someone correct me if I'm wrong, but this is always the way I've perceived that phrase.
 
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anonymous

New member
I'm not positive about "mild cases." I've found some research about them, and they seem to usually progress a lot slower than normal. As for if they exist, my doctor told me that I have a mild case and could live a very normal life (that's so vague though?), and on my genetics report one of the mutations I have said that one of the mutations is a "mild mutation."

I guess that was part of my question - even if I do have "mild cf" does it still turn into insufficient pancreas/digestive problems, etc? I was just diagnosed a couple months ago so I probably don't know as much as a lot of you do <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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anonymous

New member
To add to what Emily said, I also wonder if what infections you pick up through the years would have a bearing on the rate of decline too?
Elle
 
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Emily65Roses

New member
I imagine that's a big part of it. My lung function was always in the 90s and 100s up until I was about 16. Since then I've been on IV antibiotics about twice a year. So in 16 years, it barely changed at all, and then in the last 5, I've lost about 20% of my lung function.
 
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anonymous

New member
Hi,
I have been told by my cf doc that not everyone who is pancreas sufficient will develop insufficiency as they age. Some people do, but not everyone. I'm not positive of the stats, but I think it is something like 15% of kids are pancreatic sufficient and only 5% of adults are, so some 10% of people who were sufficient do eventually lose their pancreatic function. Anyone feel free to correct me if I am wrong, but that is how I remember it.... So far my pancreas is still working, but I am having more digestive issues and have to take Miralax on a daily basis. My docs warned me to watch out for signs of insufficiency.... Hope this helps!

Also, I was diagnosed at 19 and was told I had a 'mild' case, but over the years I have picked up some funky infections that have given me quite a bit of trouble. Now my PFTs are in the 'severe' range, so not sure if I still qualify as being mild? I have never really understood the term mild. I suspect it is as Emily says, you may start out mild and progress more slowly, but eventually it catches up with you!

Kim 40 w/cf
 
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