"mild" Cf?!?

[chipper28]

<p class="msonormal">I have a kind of odd question.  Are there
actual "mild" forms of cystic fibrosis?  I am a 25 year old
Caucasian female who had a positive sweat test at the age of 9, but
did not have enough symptoms to warrant a CF diagnosis at
all.  Coupled with the lack of symptoms, I am allergic to
penicillins, cephalosporins, macrolides, Beta-Lactams, Clindamycin
and a few other antibiotics, so my pediatric
allergist/pulmonologist thought that being seen in a CF clinic was
likely to do me more harm than good.  I have not been
genetically tested, but my parents were a couple of years ago and
both were found to be carriers.  I don't know their mutations
offhand, but I do know they carry different mutations and neither
of them are the "normal" mutation.

<p class="msonormal"> 

<p class="msonormal">As I said, I'm 25 years old and have never had
a hospital stay for anything lung related.  However, my
allergist raised the CF question with me yesterday and seemed to
think I should be seen by a CF clinic.  Is there any chance
that someone could be 25 years old and not know they have CF or is
this guy just being alarmist?  I have had four sinus surgeries
to remove buildup and polyps and whatnot in my life, take a
cocktail of drugs for allergies and asthma (Rescon MX, Nasonex,
Astellin, Atrovent, Singulair, Advair, Albuterol), but that's about
it.  In terms of infections, in the last year I've had six
rounds of Prednisone and Avelox, but only three of these infections
have gone to my lungs - the others have stayed in my chest.

<p class="msonormal"> 

<p class="msonormal">While I will admit for an average person
that's not an impressive show of respiratory performance, it seems
that I'm quite old.  I work full-time as an actuarial
consultant and played nationally competitive soccer until I was 17
when I had to quit due to ligament problems - not
respiratory. 

<p class="msonormal"> 

<p class="msonormal">I guess what I'm looking for is to know if
there really is such a thing as mild CF or if this is just a weird
rabbit shoot he's sending me on. . . (I've only had this allergist
for a year and a half since I moved, so I worry that it's just his
being new and not wanting to risk missing something.)

<p class="msonormal"> 

<p class="msonormal">Thanks!!

 

[Momtana]

"mild

Chipper, I was treated for asthma and allergies from the age of 3 or 4 - allergy shots for 30 years, which didn't help much if at all, and got my CF diagnosis at 49. I am learning that there are a lot of manifestations of this disease.

 

[LouLou]

"mild

Chipper,

I hear that there are no false positive sweat tests. You should find out what mutations your parents are. There are tons of people out there that have been diagnosed much later than you so what ever led to your diagnosis should not be overlooked.

In answer to your question, the term 'mild' CF is old fashion and was originated before they understood the different CF class mutations that are linked to severity (sometimes). I say 'sometimes' because their are also these things called modifier genes that can make two people with the exact same copies of the CF genes have very different manifestations of the disease. They are in the beginning stages of understanding modifier genes and currently there are no tests for them. Anyway the use of the term mild, severe etc. are not used in the wise CF community anymore but still run rampent at the primary care physician level.

You should definitely be seen by a CF center if for no other reason to establish a baseline and educate you about all the things CF effects. Like did you know that a person your age with CF could very well have the beginnings of osteoporosis because you might not be taking a special vitamin for CFers that has vitamin ADEK in a water soluable formula? Without proper Vit. D uptake you could be having 2 gallons a week of milk and you still wouldn't be getting enough calcium to maintain healthy bones. A dexascan can see how your bones are doing and is recommended on all CFers over age 18.

How's your weight? How do you know you are allergic to all those different meds if you've never had any lung infections?

Please let me know if you have any questions for me. Also, you can read my blog at LouLou

 

[chipper28]

"mild

Had seven fractures in my left hand two years ago due to a fall
running in the mud.  They tested and said my bone density was
actually above expected for my age, but there was some sort of
weirdness in the structure of the bone explaining the fractures,
but the endocrinologist said it probably was nothing and that
they'd do a repeat density in three years just to make sure I
wasn't losing... Now I'm becoming a hypochondriac!<br>
<br>
I've never had any lung infections that got me into the hospital on
an admit, but I did have a lot of respiratory infections when I was
little (I was born 7 pounds, 7 ounces and 23 and a half inches, but
since I lacked "brown fat" I had trouble putting on
weight when I was little and had continual ear infections (tubes 5
times) and sinus/upper lung till I was about five.  Then I
stayed pretty much infection free (a couple a year or so) until I
was 12 when I started having 10 months a year of some sort of upper
respiratory, but those cleared up after sinus reconstructions until
the last couple of years -- I was thinking maybe another cleanup
was in order.  The other place I've discovered my antibiotic
difficulties is with orthopedic surgeries.  Push a new
antibiotic and I put on the anaphylactic show .<br>
<br>
In terms of weight, I didn't break 100 pounds till I was 17, but
only had to do ng feedings a couple of times when I was sick.
 However, I was not a sickly skinny -- I could bench over my
weight through my high school years -- I just had a very difficult
time getting weight to stay on.  Now i have no difficulty
staying around 135 to 140 pounds (I'm 5'10") without effort
either to gain or lose weight.<br>
<br>
To be honest I'm a little scared of a CF center.  I'm quite
good at picking up germs off of other people, so that seems like a
dangerous idea. . .  Antibiotic resistant germs?<br>

 

[katyf13]

"mild

I think you should definitly go to a CF center. They are very careful about infection control, so don't avoid it because of that. Because you tested positive and have had nasal polyps, infections, and low weight, I do not think your doctor is being alarmist. But also remember, that after a diagnosis, nothing changes, it just has a name and things can get better. Many people don't have bad symptoms until they are in their 40's. good luck!

 

[chipper28]

"mild

I also just figured out that the doc he recommended is walking
distance from my house.  (not as much as a fluke as it
seems... I got married a few months ago and when we were looking
for a house, my husband was insistent that we be within a two
minute drive to the hospital which is surrounded by doctor's
offices).  It's odd that I've suddenly developed doctor phobia
(never been a problem before!), but I just got to the point of
being willing to admit asthma in the last few years, so exploring
another label is just oddly unsettling. . . .

 

[EnergyGal]

"mild

Hi Chipper

I think it is wise to get genetically tested for CF. If you are concerned about going to a cf center then perhaps wear a mask. If you are concerned that others will stare at you just tell them you have a cold and you do not want to spread it to anyone. People will not ask you any questions.

It is more important to keep your hands clean and not touch your face while out in public. If you do all of this you should be fine. Getting diagnosed will ease your mind and you can get on the proper medications if you indeed have cf. You sound kind of thin to me with your height and weight. If you are needing enzymes like most other CFers do then you would most likely gain a lot of weight which would also help to keep your sinuses and lungs healthier.

Sounds like someone is watching over you and giving you an intelligent thoughts so you can ponder that you might have cf. I think this ENT doctor is pretty smart. Get tested and I would go to an accredited CF center.

Let us know how you do

 

[chipper28]

"mild

Another odd question.  Is it odd to being sent to a
pediatricians office?  It's the Cystic Fibrosis Clinic, but
it's part of Capital Pediatrics. . .

 

[katyf13]

"mild

Mike still goes to Hasbro Children's Hospital and he is 28. Many cf patients go there for life. That's where the specialists are around here.

 

[sue35]

"mild

I am under the impression that there is only a false negative not a false positive so you do have Cf, mild or not. I understand that it is hard to accept another label but Cf is a serious life threatening disease and you need to be seen. You don't want it to progress until it is no longer mild and then you have still never been seen by a CF doctor. If you are so worried about germs, think about long term and how much worse that could be. You are lucky that you have had so few symptoms so you should keep it that way for as long as you can and be as healthy as you can.

good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[gsplover]

"mild

Hi Chipper,<br>
<br>
I was diagnosed at 12.  My diagnosis came from digestive
problems not lung problems.  I ran track and cross country all
through school.  I never had a serious lung infection until I
stopped running and went to college.  I, like yourself, had no
symptoms of CF except my digestive problems.  In my teens, I
also had nasal polyps. They didn't diagnose me with asthma until my
20s. I never realized how much the running kept me healthy.  I
have only had IV antibiotics 3 times.  All after I stopped
running, which is no coincidence.  I am 30 now.  I have
gone to a CF center since I was diagnosed.  CF is something to
take serious and requires preventative treatments.  If you
take preventative measures you will have a much greater chance of
living a long and healthy life.  Definitely go to a CF clinic
and don't worry about the germs.

 

[EnergyGal]

"mild

What I do not understand is why were your parents tested for CF genes and you were not? If they are carriers why didn't you get tested as well.

just curious

 

[LouLou]

"mild

ehh... I'm excited for you.. Capital Ped's sounds like Austin, TX to me. Please PM me if it is and rest assured that you are in great hands. Say hi to Dr. Frank and Lynn for me.

FYI - most CF doc's can't make a living on CF alone because there are so few of us. They usually are pediatricians or pulmonologists with CF as a sideline. They have 'clinic days' for CFers so that they can take care of most of the CF related stuff on taht day each week. Some larger clinics may have more than one day a week.

If it is Cap. Ped in ATX Dr. Frank's pediatric program functions out of that location (non CF related) and his clinic days are at Brackenridge Hospital once / week. He does also see CFers at his Cap. Ped location to make it convenient for us and for germophob's that just can't do clinic days emotionally.

I actually saw him at Cap. Ped's because my insurance paid out better there and then went once a year for an annual checkup at Brackenridge.

When you enter Cap. Ped's as a CF patient they'll put you right in a room. I totally took this forgranted but now am in Philadlephia and only wish I could get this kind of care. They are also very germ conscious. Gown and glove for various scenerios (MRSA, B. Cepacia or multi-resistant pseudo.)

 

[chipper28]

"mild

It actually is an odd reason why my parents were tested.  My
mom works for a company with amazingly good insurance (ie all
prescriptions for 3 months are at most $5 regardless of name-brand
or generic... How I miss it now that I'm in the normal world of
blue cross blue shield (I think that may be a Texas thing)) and the
testing was entirely covered for them.  The reason they wanted
the testing was that my sister-in-law (who's convinced I am some
weird creature for having a cough in "months when people can't
have a cough" (forgive the grumbling) insisted on knowing that
my brother wasn't a carrier before having a kid herself (now she
didn't even think about checking herself). At the time, much of the
cost of the testing on my brother would have been out of pocket, so
they were tested to see if he could be a carrier.  However,
when not only one but both of them came up as carriers, this proved
not a valid option.  To finish an ironic story, my brother and
sister-in-law turned up pregnant about a year after this (without
him having been tested) and their daugher is due in a week and a
half and based on some sort of prenatal test is CF-free (however, I
don't know if this rules out carrier status).<br>
<br>
This has been what has brought up the CF issue with me, because I
didn't know about the sweat test before.  What I'd been told
was that when I was young they thought I had CF, but they were
wrong.  What I've been able to conclude happened was that once
I got balanced on drugs treating symptoms and eating the right
stuff, my mother concluded there was no way I had "that"
disease and coupled with the original pediatric pulmonologist being
young, the idea was written off.  Though oddly, my mom's the
one who is gung ho that I get the CF question reevaluated.<br>

 

[thelizardqueen]

"mild

Just imagine how much more better your health will be with treatment for not just asthma, but CF as well.

 

[chipper28]

"mild

Systematic symptoms being addressed instead of a piece-meal
approach might be amazing.  <br>
<br>
Though I am a little worried about one potential side effect.
 I work for a consulting firm and the senior partner over me
already thinks I'm a freak because "he hasn't taken a sick day
in over thirty years".  

 

[Lungboy911]

"mild

Chipper I totally understand where you are coming from. I had mild CF for most of my life. I was diagnosed when I was 2 years old in 1970, but didn't have my first hospitalization until I was 26 years old.

I have also been very competitive in sports, including soccer in high-school. In fact, in 1987 I became one of the first persons with CF to play a college sport when I made the college ice-hockey team.

Anyways, there are almost 2,000 different mutations (or types of CF).
So YES IN DEED, there's a MILD CF.......Don't feel left out there are thousands of us. BE POSITIVE & EVERYTHING WILL BE O.K........

 

[chipper28]

"mild

Sorry to be so post happy, but I wanted to check that I've got
correct information and that a 67 is a positive on a sweat test.
 It's a solid D right?  

 

[Purplelungz]

"mild

I dont know about the numbers...but I think its positive....but dont go by my word...some one will post who knows for sure.

I was going to say that if you get a positive CF diagnosis it will only help you out. Sure a negative would be great to. But lets say you get a positive...you get the right treatments, they work with your allergies so dont worry about that...accredited cf centers are very cautious about germs. My cf clinic in san antonio has you wear a mask as soon as you walk in and sign in....then you arent even in the waiting room, which has maybe 3 people in it at the most (usually only one other cfer who sits at the far end of the room) then you get your own room. You can always carry your own antibatcerial gel in your purse so that after touching doors or shaking hands or anything you can clean your hands off. Just a good precaution. As far as work goes...with a diagnosis of a disease like cf your work has to be more understanding...right now your boss is under the impression your just sickly and might be odd to him, but with a definate show and diagnosis that something real is wrong with you he might be more understanding (some people are jerks and never understand though). Now i dont know all the legal stuff but most places can not fire you because you need more sick days than they give you. Its a type of discrimination I believe. Again some jobs dont care....i think rules apply different to private owned companies and the like. i will repeat and say I dont know all the legal things....I havent been able to work myself. But with a diagnosis it should help you out in many different ways..
And if you get a negative back thats great...it ruled something out and you can go from there.
Amanda

 

[Momtana]

"mild

Chipper, Check to see if there is a reference range for normal on your test results. I am grateful for my diagnosis and to finally get appropriate care.