"mild" Cf?!?

[catboogie]

"mild

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>chipper28</b></i>

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.


hey chipper,

welcome to the site and i am so glad that you asked this question. the reason i quoted the above was because it stuck out to me to be right in line with CF. it's funny, i am on singulair, advair, albuterol, and have had nasonex and atrovent before, but i always thought of those medications as helping my CF since allergies or asthma acting up irritates it; whereas you seem to see the asthma and allergies as separate from your (possible) CF. i guess i am saying that CF might be the glue that ties all of your symptoms together--both the ones you have had (pollups, sinus issues especially and asthma and allergies too) and maybe some you might not be aware of (vitamin deficiencies, weight gain, etc).

point is, you want to stay as healthy as possible for as long as possible. now that you have a way to better control this (i.e. seeing a CF doctor) you should pursue it, regardless of where you have to go or if you have to deal with germs.

keep us posted and good luck!

laura, 27

 

[JennifersHope]

"mild

Hi Chipper,

My sweat test were a 67, and a 70. I have had many of the same thoughts as you. I was dx at 29. I have almost 100% lung function when I am not sick. even though I am pancreatic insufficient, I am overweight.... go figure that one, Steroids, I think.

I was also not wanting to go to a CF clinic because why in the world would I want to be in a place where other ppl with CF went?? I know I work in a hospital but not around other CFers, ever......

Just wanted to let you know you are welcome here and I hope you stick around.


Jennifer

 

[Scarlett81]

"mild

I was diagnosed at 1yr old or so, I currently have a pft of 75%, and maintain a healthy weight/no allergies ect. There are classes of Cf-granted with large ranges-but those classes are mild/moderate/severe. I've was in "moderate" for years!!!! But I moved to "mild" classification a few months back.

So even if you were DX as a baby you can have mild cf. It depends alot on your lung function.

 

[treehugger]

"mild

Chipper,

I am like you (except older!) and had three sinus surgeries and "asthma" beginning in my 20s. I always wondered why the asthma meds didn't do much and why my cough was so mucusy during (cycling) and after exercise. As I got older I wondered why me friends of the same age were still fast riders and I was slowing down and unable to race well. I struggled on-coughing. I then started having mild lung infections again labelled as asthma that were tiring me out-and took lots of prednisone with no change. I then got pneumonia that kept reoccuring and damaged my upper lobe. The docs kept saying that I was so healthy and it was odd but they did nothing. Finally, I found a good doctor who discovered the cf. I wasted 2 years with lung infections that could have been addressed had I known. Definately go to a cf center. My first time was a year ago at age 43 and I have not caught anything yet! They understand your issues and can help prevent lung and pancreas damage, for at least awhile. Hope that helps you. Lisa

 

[Alyssa]

"mild

Chipper,

Yes, a 67 is clearly a positive sweat test plus with your symptoms and parents carrier status, I'd bet you would definitely test positive on a genetic test as well.

No, I don't think your doctor is out of line at all, in fact I'd say you should embrace the idea of being treated and followed at a CF clinic. I'm sure you will get better managed care and access to the latest and greatest as well as tried and true ideas for helping you to feel your best.

If you think you are "too healthy" or "very mild" read my blog about my kids ~ they are still a little younger than you but you have had more symptoms than they have and they are being followed at a CFF clinic. There is also the breakdown of sweat test numbers posted there.

 

[randford]

"mild

<strong>Chipper,</strong><br>
<br>
Yes there are milder forms of CF. Like you, I thought you either
have CF or you didn't. I'm 43 and was diagnosed two months ago. My
Nephew died from it at age 15. He was homozygous for Detla-F508.
That means he had two copies of the gene. I am heterozygous for
Delta F-508/ That means that I have one copy of it and a mutation
of Delta F-508. There are as many as 1500 mutations of the most
common Delta F-508 gene. I was told by the CF doctor that different
gene combinations express different things and resulting in
different problems. Plus there is a regulating gene called
Transforming Growth Factor Beta 1. It regulates the severity of CF.
So it is very important that your are screened for as many gene
mutations as the lab can offer. If your parents have the gene or
some mutation, you probably are either a carrier or you have a mild
form of the disease. And you were positive for the sweat test.
Remember, your parents may even have a rare mutation on chromosome
7 that the lab is not detecting. <br>
<br>
I was in denial for years and had problems at ages much younger
than you. But health problems, later in life, forced a
diagnosis. If it's an insurance issue, I understand your choice. If
you have good coverage, go get that gene test. It's not the end of
the world but it is your health.<br>
<br>
Randford

 

[chipper28]

"mild

The Magic of Salt. . . .<br>
<br>
When I was an early teenager, I discovered the magic of a water pik
and saline for my sinuses.  After feeling so much better from
that, I constructed a thin mesh box to attach to a showerhead
containing rock salt which I then ran 100% hot water through from a
hot water heater set at max and then sat in the opposite corner of
the shower from where I had the water running and read for half an
hour to forty-five minutes or so two times a day.  I found
this prevented me from having to do as much coughing (which I
described as rearranging coughing--it didn't really produce
anything, but it rearranged things in my chest so I could breath
more easily).  It also sometimes helped me to produce things
from my chest.  My pulmonologist described the addition of the
salt as a little odd, but didn't have any objection.<br>
<br>
I still enjoy the magic of salt (but I've got a little more skilled
at it).  Two to three times a day I use a nesti pot to get
water up into my upper sinuses with the contortion of some
positions which I picked up from a yoga book.  Then I rinse my
sinuses using the water pik.   Finally, I use a steam
inhaler (one of those cheap, simple things from Walgreens) to
inhale salt steam.  It requires a pretty high concentration of
salt (in comparison to the nasal irrigations), because I think some
of the salt doesn't go out, but does amazing things.  I'm
enough of a dork that afterwards I like to demonstrate my
wheeze-free, whistle-free, popping-free breathing to my husband.
 The inhaler seems to do a much better job than the shower
breathing and in addition to clearing what I describe as the
tightness of my chest, if I've got any sort of respiratory thing
going on, it really helps me to clear sputum (which I have a really
hard time doing).<br>
<br>
Based on the wikipedia article on CF (yes--I am not so highly
informed), there was a reference to saline for lung treatments.
 I'm wondering if I've been making up my own kind of odd
version of this?<br>
<br>
Thanks for all the info and encouragement.

 

[chipper28]

"mild

And the answer to the sweat test is positive.  I've only had
one sweat test this round, but with the combination of a positive
(though oddly lower value) sweat test a dozen years ago and extreme
difficulty in getting a successful sweat test off of me, the CF
clinic in town said not to worry about the second sweat test and
I'm scheduled to go to CF clinic starting next month (get to go to
the fun children's hospital!).  At that point, they will
apparently order a genetic test to try to identify mutations.
 They said to hold off on trying to get it done through
another lab between now and then because there's a good chance that
I have some weird mutations and so a certain test needs to be
ordered.<br>
<br>
My husband summed up the "late" diagnosis (they told me
about someone diagnosed in her 70's) as great news -- I already had
the weird health problems, now hopefully they'll be more likely to
be addressed.<br>
<br>
Interesting thought I got from one of the techs in the lab where
they do the sweat test (I spent quite a few hours there --
apparently I'm resistant to the current that's needed to run the
pilocarpine -- one of them suggested resorting to the "wool
blanket" method, but I hope that was a joke!) is that late
diagnoses seem to be a product of people who've always had really
good health care.  The individual components are addressed,
likely through a group of doctors who are not connected, and so the
whole picture never registers.  Combine that with the
"you're just too healthy to think about CF despite the
symptoms" and you get late diagnoses.<br>
<br>
That's the end of my random thoughts on the status of being newly
diagnosed.

 

[NoExcuses]

"mild

You are correct. Getting care for your CF from a CF center will help greatly. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's always helpful to know a diagnosis for the symptoms that occure.

 

[amber682]

"mild

I'm glad you got another sweat test. Atleast now you know and can
be treated accordingly, and like you said, your other health issues
are likely to be addressed now.  You'll have to let us know
how the genetic testing turns out. BTW, they may not have been
kidding about the wool blanket! I've read about people who had do
wrap their arms in warm towels and such to get enough sweat! 

 

[Cutecurlz]

"mild

Hey Chipper...I am 38 yrs old diagnosed at the age of 3yrs with CF. I am considered to have a "Mild" case of CF. Up until I was about 9 I took my enzymes, but after that I took them if and when i felt like it, I didn't do no physio either. All I was supposed to take was enzymes....whatever! As of now to this day I still take them when I feel like it...more often than not but now that I have just been diagnosed with CFRD...I take them a lil more, ok well maybe not. ALL I have to take is the Ultrase MT12 enzymes and the ADEK's and that's it! So I'm about as mild as your gonna git!