Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

A

anonymous

New member
Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

My daughter is two years old and so far has a mild case of CF. She was diagnosed 7 mos. ago so I am still learning. I was wondering if anyone out there was also born with a mild case and years later still has a mild case. The idea my doctor has given me is that as they get older most CFers health gets worse. Is this true to you all? Any comments, experience or opinions are welcomed.

Thanks,
Lynsey - mom of Avery (2 yrs w/CF) and Rhett (7 mos. w/o CF)
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

My son was not diagnoised until his 13th birthday(that sucked)..... NO problems as an infant,
tootdler and so on........... No family history on both sides,,,,,,,,,,, he is the first! He had eear infections as a baby and had tubes put in............... nothing until he got pheomonia at age 7,
they still did not catch it............... then had chect infection that would not go away at age 13...
He has what I consider VERY MILD problems with C.F.................. so yes there are what we
consider "mild" cases!!!!!!!!!!!!!!!!!!!!!!!!!!!!! In last 3 years, he had infections 3 times the first year of diagnosis that required PIC line I.V.'s but not since,,,,,,,,,,,,,,,,,,,,,,,,,, prevention is the best thing. TRY to precent your little one from getting infections and get on them right away.
God bless,,,,,,,,,,,,,,,,,,,,,,Michelle.
 
W

wallflower

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Yes, I am still considered a mild case, but I'm not sure what you envision of a mild case of cf in adults. While my lungs are still in good shape (I think if PFTs are above 70%, you are classified as mild), I don't have a port or Picc (iv) (at the moment), and my weight is stable, there is a lot I have to do to keep it that way. I do a lot more meds and therapy now than when I was a kid, and I have to be more aware of healthy (or unhealthy as the case may be <img src="i/expressions/face-icon-small-smile.gif" border="0">)eating and exercise.

I do now have a micro bug (for 5 years now) that doesn't want to leave and I will probably have to have a PICC or port for iv antibotics in the near future as most orals don't work on me anymore. Given that fact, and assuming that my lung function doesn't drop, I am still a mild case. In my head, that doesn't sound like a healthy cfer with a mild case, but given the fact that I don't get short of breath, I can still work full time and not limit my activities, it is!

The main problem is that as your daughter gets older, she may catch a bug that throws her cf for a loop or her antibotics may stop being effective against her cultures. It's that way for all of us, and it may happen when we are young, or not until we are older - like winning (or losing) the lottery.

I can't say that there is any one thing that you can do to guarantee the "mildness", just be her biggest advocate with the health care system (this can be the hardest part of having cf - dealing with insurance, the government, medication reactions...), make her run and play outside and hope for the best!

33 w/cf
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Hi,

I was not dx with Cf till I was 29.. I am not sure what I have as far as mild etc.. I think I am mild considering the fact that I have great PFTS they usually are about 80. Sometimes less esp when I am sick and sometimes more...

I was sick my whole life with CF. I got "bronchitis" about four times a year since I was born and I have also had pneumonia 28 to 29 times. Pretty much every year of my life.. I never was under weight my weight was always good... In fact my pancrease didn't get clogged up till I was 29 and that was how I was dx. In fact, since starting enzymes and steroids I am now overweight....

I don't culture anything on a regular basis..I have cultured pseudo before... but then again, I was never cultured as a kid.. They just always treated me. with Levaquin and albuteral.. My cough as a child was not ever productive unless I was having an acute episode and I was always given cough suppresents.. The worst thing for me..

I have a lot of other health problems that I think will "do me in" before CF... I have addison's disease which requires me to take large doses of steroids daily. The steroids have greatly improved my lung function and I have no inflamation in my lungs because my abilty to react to infection is impaired...

As a result of the steroids, I have high blood pressure, diabetes, small vessel disease, vasospastic angina, osteoporosis, glacauma and borderline cataracts....

So to answer your question, I have mild CF. great PFTS...but I get acute infections often and am on IVS several times a year.. I just always bounce back really well.. and have always been able to get rid of the bugs without lung damage.

Jennifer NJ/ 32 Cf and Addison's disease
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Lynsey,
I am a 23yr old CF patient with a very mild case. I was diagnosed at 15months and that has been my only hospitalization. I did chest PT up until 7th grade. Only every once in a while do I need to do aerosole treatments when I get a little cough. Despite the fact that the genetic mutation I inherited should produce a more severe condition, I am doing fine. I ran the Chicago marathon last fall and just climbed two mountains in Colorado that are above 14,000 ft in elevation. I try to run on a regular basis, b/c I find it is the best exercise for my lungs. Although I had a great doctor growing up and I very on top of my health, I also strongly believe that my parents had a strong hand in keeping me so healthy. Not because they sheltered me, but b/c they supported me and convinced me that I could do anything I put my mind to. They were always very open with me and that spilled over into my relationships. All my classmates knew I had CF b/c I'd give health lessons on it as early as 2nd grade. I wasn't different b/c I had CF, I was special. I am now married (which I could have never concieved growing up) and my husband is a wonderful support system as well. If your daughter feels supported and is never ashamed of her CF and it's symptoms, then no matter what severity she may have she will always have a good attitude towards it.
~Lindsay, 23, CF Patient
 
K

kelz784

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Hi, Im 21 years old and i only have a mild case of cf, the only time i have ever been on enzymes was when i was first born and diagnosed. I have had my share of chest infections and one bout of whooping cough but thats about it as far as sickness goes. Im trying to get over a chest infection at the moment and although they seem to take longer to get over as you get older i feel i am still very lucky to be so healthy. As long as your daughter exercises and looks after herself i see no reason as to why she shouldnt stay witha mild case.
If you ever want to talk feel free to email me at Kel_784@hotmail.com.
Take Care,
Kel
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

My son was diagnosed at 18 mos. with a mild case of CF. They never caught it in his new born blood screen because he has 2 rare mutations. The one they know causes male infertility and the other is so rare, they hardly know anything about it. It was a fluke that they ever caught it. All I can say is he had a wonderful specialist at the Childrens Hospital of Philadelphia who was running a gamut of tests because he had trouble getting rid of colds and had pneumonia. They thought he had asthma. They don't anticipate him to have anything worse than the mild pulmonary problems like he has now, although with CF it could change at anytime and we are aware of that. Since his diagnosis, they have him on Flovent and Albuteral 2xs a day and I literally mean it when I say he never coughs, even during therapy. His weight is normal and he does not take any enzymes. Granted he is only 3 years old. The doctors have told us the same thing about things getting worse as he gets older but his doctor says he could be fine. The strains he has do not tend to cause death. I just take it 1 day at a time. I have learned in the last 18 months, that there are no definitive answers when it comes to CF.

Those of you that have mild strains, what are the strains?
 
W

wuffles

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

I'm 21, FEV1 around 100%, oral antibiotics once or twice a year but no IVs yet [except once for pneumonia]. I've cultured pseudemonas for about 3 years now but it doesn't flare up often. I went to uni, work full-time, live with my boyfriend, play competitive volleyball <img src="i/expressions/face-icon-small-smile.gif" border="0"> So yes, my case is considered "mild". My mutation is double delta F508.
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Hi my names tiffany.i am 15 years old. I had cf when i was 3 days old.i was doing good with my cf until i was 13 i was in the hospital for about 8 days then when i was 14 i was hospitalized for 14 days and the age i am now 15 i was in the hospital in March for 10 days. I usually dont have to go to the hospital each year for a tune up. During those times my lungs got a really bad infection. My liver enzymes were going down and the doctors were afraid it would go back to normal, but luckly it. So now im just doing my treatments, exercising, taking my pills hoping i dont have to go back. i go for a check up every 3 months. sometimes it just gets to the point when i really hate having cf.my younger brother has it to but worse then me. they told my mom he didn't have it (but he did) and they didnt tell her until he was 3 months old so without the medication and stuff it made hime mentally chanllenge.
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Hmmm, I wonder if that is what happend to me. I didn't get the medicine for 29 years I wonder if I am mentally challenged too. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

My daughter who has a mild case so far, is double delta f508
 
S

SupraChick321

New member
RE: Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Hi! my name is Jessica and I am 15. I was diagnosed the first day I was born. I was very sick. I was the only normal sized baby in the NICU. As I have gotten older some of my stays in the hospital are only 1 week and some are for 1 month. But you learn to deal with it. Nothing much I can do about it. I am on a transplant list but luckily I am not very sick I try to do as much as I can to keep my lungs healthy.. I have started gymnastics recently hoping that that will keep my lungs going good! and yes I have heard the older you get that your condition will most likely worsen because as u get older its harder for your body to fight infections...but I hope I can be of some help to somebody!
 
W

wanderlost

New member
RE: Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Wow, I am so excited to see so many people with mild cases. At the clinic here everyone is "sick" except me and it is so disheartening! I am 28 and have never been hospitalized except when i was diagnosed at 6 weeks. I was captain of my swim team in high school and still do yoga, play volleyball and run around with my 5 year old. I know exercise through my life helped keep me healthy and my lunds clean. I know one of my mutations is that f508, the other is with an S and I can't remember - but the f508 seems to be the one that has the mildest effects from what I've learned. Good luck with your daughter - keep her active. Cf doesn't have to win!
 
J

JazzysMom

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

Up until about 5 years ago when I was 30 I was considered a mild case. It would still be that way if I had taken care of myself better. I was very lax on treatments etc so I am sure there is damage that could have been avoided. However; I am now 37 & still kicking. I might not be as mild as I use to be, but I still have fight left.
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

delta f 508 is actually not a mild mutation, since it causes pancreatic insufficiency. as for pulmonary elements of cf, there are no real guidelines to what mutations cuse what severity of lung disease. it varies widely
 
H

HollyCatheryn

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

My case actually didn't appear to be mild at my diagnosis, but I did very well after being started on therapies. I've been considered as having amild case for a long time now. I'm 26 and my case is still considered mild (high 80s-90s PFTs). I have experienced some decline, but I'm still doing well. Over the last few years I've lost some percentage points on my PFTs, but my health is actually more stable now and I am sick less often now than I was even as a child. I have DeltaF508 and N1303K. I've been very blessed and my parents worked hard to take very good care of me.
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

just reading your words on the site.im interseted to know about your son,as my daughter is 11yrs old and several people have said she shows signs of cf but her hospital specialist as never tested for it.is it really possible to go undetected for so long?my daughter as lung and digestive problems and now is being referred to another speciallist to look at possible heart problems she is having.i really dont know which way to turn or who to believe .what do u think?thanks lisa
 
H

HollyCatheryn

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

It is absolutely possible to go 11 years without diagnosis. There are people on this site who have been dx as adults, some have been diagnosed only after they've had a child diagnosed!Read up on the mainpage (<A href="http://www.cysticfibrosis.com">www.cysticfibrosis.com</A>) and if the symptoms sound to you like your child, demand the test. If your doc won'y do it, find a doc who will.
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

IS there a mild case of CF???
 
A

anonymous

New member
RE:Was anyone born with a mild case of CF and still has a mild case as a teenager or adult?????

hello there, this is the first time i have ever been on this site, i wil prob not be on hear for a while longer so i will never c ur reply, but i havea mild case as well, i am 19 years old and i got told i had cf a 18, pretty weird i have been told, i dont really no much about it casue i have not read into it much but since i have had it i can only say i have gotten better, i was really fit when i was younger and only a few years ago it started to go down hill, but now i have been put on medication i have been better than ever. i try and stay a positive thinker as i think it helps me thur my life. i hope this has helped in some way
 
You must log in or register to reply here.
Top