"mild" form of the disease

[jmpjules99]

we've been told my daughter has a "mild" form of the disease...what the heck!?

I am not sure what this means but was curious if someone's been told "mild" form and what it's like.

So far we just have to add salt to her formula but no enzymes or anything like that.

 

[Mockingbird]

Ha ha, It's a bit like saying your food is only poisoned a little bit, isn't it? =-) Mild just refers to how healthy your daughter is. Really, it doesn't mean anything more than that. Rest assured the doctors will still give her the care they would any other person. =-) At least, they better! Or else we might have to clup those doctors with sharp pointy objects. =-)

What? It's not like the doctors don't do the same thing to us, you know!

 

[anonymous]

How old is your baby? I know I am considered "mild" because I haven't been hospitalized or had many infections - but I don't think as a kid I was considered mild right away - it was more like over the years not much happened, so then I kinda got labeled that way. Hopefully your docs are right though!
(Wanderlost - 28 w/CF)

 

[rose4cale]

I like your analogy (can't spell tonight...nothing looks right) Mockingbird! (food poison)

I asked our Dr about how severe my son's CF was and they said 'somewhere in the middle'...whatever! He has not been hospitalized or had any serious infections yet. He actually does quite well. But he is definitely pancreatic insufficient!

 

[anonymous]

Jenna will be 6 months old on the 30th.

Her pediatrician is a pulmonary specialist and he referred us to her CF doctor but he is the one who said it was mild...the CF doc said her gene pairing is pretty rare, not the most common ones so I think that's why they're saying it's mild.

This is weird because it feels like she isn't sick at all...I am very glad she's healthy right now but I still can't beleive she has CF because it isn't something you can see. I have mentally challenged and physically challenged people in my extended family and their conditions I can grasp because I can see them. NOT meaning to offend anyone at all but it's just hard to grasp that Jenna has this terrible thing wrong with her...hope that doesn't sound b*tchy.

 

[ccflewallen]

I dont know how, at 6 months old, they can know whether she has a "mild" case of CF. I had a rough start. They said I wasnt healthy, and I had a blockage when I was born. I was in the hospital for much of my first two years. After that, didnt spend time in a hospital for 21 years. So, you will see that docs sometimes try to make "educated" guesses. Maybe they will be right and maybe wrong.

As for her not looking sick, I dont remember if I looked sick or not when I was that age, but I know that I don't now. I feel kind of stupid when I try to raise money for CF research (Great Strides). People look at me like "yeah, you look real sick, whatever." Which maybe is a good thing, I just wish people knew a little more about CF.

ccflewallen

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>This is weird because it feels like she isn't sick at all...I am very glad she's healthy right now but I still can't beleive she has CF because it isn't something you can see. I have mentally challenged and physically challenged people in my extended family and their conditions I can grasp because I can see them. NOT meaning to offend anyone at all but it's just hard to grasp that Jenna has this terrible thing wrong with her...hope that doesn't sound b*tchy.<hr></blockquote>

I can understand how it can be difficult to grasp. I'll bet a lot of parents feel the same way. =-)

 

[TCNJcystic]

I was told I had a mild form of the disease when I was younger, and now I've only been hospitalized three times in my life, and I was healthy for each one of them. They were just precautionary visits. I've led the most normal life that anyone with cf can live. Now I'm away at college living independently and majoring in music, which means I keep ridiculous hours and do horrible things to my poor lungs.

On the contrary, I know plenty of people with cf who are my age and were homeschooled through high school and wouldn't even think about going away to college. So, for comparisons sake, being told that you daughter has a mild form is a very very positive thing. As far as I've ever noticed, the classifications (mild, moderate, severe) that doctors use seem to be a good tool to help gauge the future.

 

[rose4cale]

Yes, I feel the same way. It is frustrating to get other members of the family/friends/aquaintences to fully understand the life this disease can bring. I see it everyday here on the boards or on the net, so I get my reality check daily. When we go in for our appts, I almost feel lucky that he has CF though compared to others there with their kids that cannot lift their heads or even say "I love you Mommy" or that are battling terminal cancer with their 10 year old.

 

[JazzysMom]

Usually if your child has a ""mild" case of CF its because the lungs havent been damaged enough &/or the pancreatic insufficiency is low. I wasnt diagnosed until I was 7 & for most of my life was considered Mild. About 8/9 years ago I started having more admissions, more need for antibiotics, my PFts went down & my weight became harder to maintain. I gradually went it can change all with one bad infection no matter the age. The fact that your child is considered mild gives a window of opportunity to maintain that versus someone who starts out with severe difficulties from CF. One thing I really need to say is that CF can be unpredictable. Most information given on life span, med statistics, gene mutuation link to severity etc is based on the "average" patient. What it comes down to is that each patient is different.

 

[anonymous]

yeah we found out last week she is pancreatic sufficent and so no meds yet.

I am thankful I have "just" this to deal with and like you said not terminal cancer...that we're not living at a hospital and that all I have to do is add salt to my baby's formula.

I never thought I would be thankful for the disease but I am....it could be a lot worse.

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>TCNJcystic</b></i><br> As far as I've ever noticed, the classifications (mild, moderate, severe) that doctors use seem to be a good tool to help gauge the future.<hr></blockquote>

Ha ha, Nooooo way, man! =-) Cf can change from mild to severe in a heartbeat, make no mistake about that. If you've got the right genes, CF can be mild all your life, but usually doctors don't base the classification on that. Like I said before, they simply look at your health up to that point and make an assumption.

 

[lflatford]

Hi,
My daughter is mild so far. I look at things as if they could change any minute, like the other posters said CF is unpredictable. In my opinion its best to look at it as if it could get worse. That way you are prepared for anything and will have already been taking good care of your child's health...just in case.

Hope this helps,
Lynsey- Mom to Avery 2yrs. w/CF and mild so far!!!!

 

[anonymous]

Have/Are any ADULTS being told they have "mild" CF? I go into the hospital every year or so, and I was recently told this! Seems odd. Wondering what they're basing it on. I am pancreatic insufficient, have pseudomonas, borderline CFRD, yet have a healthy weight, and good bones. Hmmmm.....

 

[princessjdc]

Ive been told that I have mild cf, and that my genes or I guess mutations, I think their the same thing, but any how, they are rare also.
I also have psuedomonas, they are not doing anything right now, just chillin in my lungs, and I have some kind of rare bug. Doc says that Im so healthy he doesnt understand how I get these rare bugs.

 

[anonymous]

My doctor said they use the term "mild" if you are pancreatic sufficient.

 

[wallflower]

From what I understand, being mild has more to do with how much damage is done to your lungs (which can be measured by pfts). As long as your lungs can stay clear (regardes of how often you get infections) and your pfts can stay above 70%, you are mild. I take that as there is still hope for getting rid of infections without perm. damage. Once you get scarring or a bacteria that actually lives on the lungs (eats the tissue away), mildness quickly dissapears.

I am a mild case for the time being - my pfts are good and my enzymes are doing their job. I do however have a microbactia that I will never get rid of that does actually destroy lung tissue. For now it is not active, and I take medicine to keep it at bay. But one day I am going to get a nasty infection that will provoke the bacteria, and my classification may suddenly take a downhill slide <img src="i/expressions/face-icon-small-sad.gif" border="0">

Hopefully I can report that I am a mild case well into my 50's!

 

[Cutecurlz]

Female 37 with CF...I was diagnosed at the ripe young age of 3. I too was told that I have a "Mild" case of CF. To my knowledge this means...I very very very very very rarely take my enzymes....shhhhhh and my lungs are healthier than a persons without CF I don't cough nothing up. If I tell other doctors that I have CF they can't believe it.

 

[anonymous]

I'm 28 and considered mild.

Right after my son was born he got meningitis and spent 5 weeks in the hospital, but it didn't present like normal meningitis, so the docs were at a loss at first as to what was wrong with him. They were looking at all possibilities. When I told them I had CF and asked if there was a possibility of that, they didn't even believe me. The suggested that I might have been misdiagnosed - until i told them my mutations.

I do take enzymes - and suffer if I don't, and my PFTs are in the high 60s-70s. As I stated before, I have been labeled as mild because (I think) I have avoided lung infection and hospitalization over the years. I was diagnosed at 6 weeks after failure to thrive - but since then things have been decent.

--wanderlost

 

[anonymous]

wanderlost,
can i ask how your pregnancy went with having cf? what were you're pft's at the time you had your baby? have you gone downhill since then because of having a child? just curious, cause i would like to have a baby, but my pfts are in the mid- 60's, and i'm pancreatic insufficient, so don't know if i can "handle it". thanks for any info.