Scared-possibly have CF (input PLEASE)

alex852

New member
Hello all. I am a 20 year old male, and was recently tested via sweat test for CF. I received the call five days ago that I did not have CF due to the results, but I am not fully confident (as online research has led me to discover that in some, albeit very few, cases, the sweat test may produce normal results despite the patient having CF). Here's why I am not fully confident:

1) I was diagnosed with asthma at a young age--however, this asthma is so mild that it has a negligible impact on my life as of now. I need to take two puffs of my albuterol inhaler MAYBE once a week, if not less than that. I do not usually need it when I work out, and it hardly affects me in any way. However, when I was younger, I had a few more issues with it, and had to take breathing treatments once or twice a day. My mother was told that I a certain portion of my lungs was damaged when I was young, and I will never get usage of this part back (I cannot remember what part of my lungs were damaged). My father has asthma, more severely than I do. My mother has mild asthma as well. This is a point of concern because I know that many times in cases of late onset, early signs of CF are mistaken for asthma.

2) As a child, I had problems with intestinal blocking. I should say, rather, I had one major issue. It has turned into a story I tell my friends to be funny, but now I am a bit frightened. When I was about 4, I had a blockage in my intestine for which I had to go to the hospital and be hooked up to an IV. It was discovered that a piece of stool a bit smaller than a football had accumulated, and was responsible for the blockage. I know intestinal blocking is seen as a symptom of CF.

3) I have chronic sinus infections that occur around early April/late March and last until early June. I have always believed these are allergy-induced (I am allergic to everything: grass, trees, ragweed, etc.). My allergies are bad, and I assumed this was the cause. My physician would give me an antibiotic that would do nothing for me, and I would do my best to mitigate the congestion and allergy issues with Sudafed and Zyrtec, respectively. However, these infections were the cause of a surgery for chronic sinusitis I had. The surgery was ordered when I finally took my issue of annual infections to an ENT doctor. The surgery was meant to help the chronic sinusitis and permanent inflammation in my sinuses. It was 6 days after the surgery, during a followup, that the same doctor who performed the surgery told me I needed to be tested for CF. The test was just last week (the surgery was two weeks ago). I know, many times, adults who are diagnosed with late onset have had surgery for chronic sinusitis.

4) This one is a bit more personal and admittedly gross, but I want to express it. I often experience anal leakage while sleeping. While this is possibly attributable to a diet high in fatty, greasy foods (which God knows I have), CF is also a possible culprit according to some research I have done.

5) I have had thick mucus in my throat and nose for as long as I can remember. This has never been awful, and it has never caused huge problems. It doesn't make me cough, and I do not cough it up, but it is thicker than most people's (this was confirmed when the doctor told me I needed to be tested for CF--it was my thick mucus in my nose that made him think I needed to be tested).

6)For years (since middle school) I have had bad acid reflux. Multiple times per week I will have to take Tums to help it, as it is so bad that I cannot sleep. I have since started to take Prilosec, which also helps. My mom has very bad acid reflux as well. I know it is often a symptom of CF. However, I have noticed my acid reflux is not as bad when I eat less fatty foods.

Again, the sweat test results came back normal, and I am meeting with my doctor again on Monday (today is Wednesday) for a followup to the followup. It will be the first time I have seen him since I was told I needed to get tested, and I will certainly bring this all up with him, but I was wondering what thoughts you had. Thank you so much!
 

static

New member
Honestly I think you are worried for nothing. As you stated it has a relatively low impact on your life (at least lung function wise), so why treat something that isn't that big of a deal?

There are many more routes/medications you can take before you go to the extreme and assume it is CF. The sweat test is a pretty good indicator, but they can also do a gene mutation I suppose (good luck getting a hospital to cough up that kind of $$ though). You can also ask about a respiratory culture, basically it just looks for bacteria in your system but that may cost $ as well).

Off the top of my head some things you might be able to try that don't require a diagnosis of CF
- Low dose Hypertonic saline (maybe 3%), or maybe even just get a humidifier if you don't culture anything
- Flonase for the nasal congestion
- High digestion emzymes for the stools you mention, they sell them at some health stores
-Maybe some inhaled steroids to open up the passages more for the asthma

Personally though, I'd look at if it was really all necessary. If I didn't have to take it I wouldn't, and I suspect your doctor is thinking the same thing. All medications have side effects (varying on the individual), but if you think you need it go for it. It may help.
 

jaimers

Super Moderator
I encourage you to talk with your doctor about your concerns but because of the mild and somewhat intermittent nature of the symptoms you've described it doesn't really sound like CF. yes, all of those symptoms can be indications of Cf but it's seems like yours aren't severe (or getting progressively more serious) or chronic. After a sweat test the next step would be genetic testing but it's quite expensive and since your sweat test came back negative it's unlikely (especially given the more mild nature of your symptoms) that the doctor would push for that. It's probably next to impossible to get insurance to pay for it given the circumstances so you'd be looking at several thousand dollars out of pocket.

That being said the issues you've described can be really annoying to live with. It sounds like the Prilosec is helping you so that's good. For the sinus issues maybe get in to see an ENT or allergist is your area. Try Flonase like static mentioned (now available OTC) and you could try doing daily sinus rinses and see if that helps with the mucous issues (google NeilMed sinus rinse--I find the squeeze bottle to be easier than the Neti Pot). Your asthma sounds very mild and if it's not really interfering with your daily life then using your rescue inhaler every so often sounds like it's pretty well controlled.
Best of luck to you!
 

Helenlight

New member
While it doesn't seem likely that you have 'classic' CF, some of your symptoms do suggest malabsorption issues. You may want to talk to your doctor about a stool test to see if your pancreas is functioning properly. A full allergy check-up could be helpful, as you maybe eating things that are affecting your body in negative ways. For example, dairy can cause thickened mucus for some people (including most members of my family who have allergies, asthma and carry the CF gene).
 

alex852

New member
Hello everyone. This is the original poster. I appreciate all of the kind and thorough messages. It means a lot that you'd take the time to discuss this with me. I called my ENT today and the numbers for both of my arms were less than 10. Now you may be thinking "why is this guy so worried?" And you may be right for thinking that, and I don't mean to sound unreasonably nervous, but I can't help it. I plan to bring my concerns to my doctor on Monday. Based on most people's response (I've posted this question in two threads on the site), I probably don't have CF, and if I do, it's likely not any "traditional" form of it (a milder form). I'll be back here Monday to share the doctor's comments. Thanks all
 

static

New member
Hello everyone. This is the original poster. I appreciate all of the kind and thorough messages. It means a lot that you'd take the time to discuss this with me. I called my ENT today and the numbers for both of my arms were less than 10. Now you may be thinking "why is this guy so worried?" And you may be right for thinking that, and I don't mean to sound unreasonably nervous, but I can't help it. I plan to bring my concerns to my doctor on Monday. Based on most people's response (I've posted this question in two threads on the site), I probably don't have CF, and if I do, it's likely not any "traditional" form of it (a milder form). I'll be back here Monday to share the doctor's comments. Thanks all

Sorry for that, I should have changed the wording/ tone to be more respectful towards your concerns in my response. I hope I didn't deter you from posting any questions/concerns in the future.

I'm glad the information you received from everyone helped.
 
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