Sputum test and question

[Mrina]

Hi! I have no cf diagnosis, but my doctor recently wrote a referral to a CF center. I didn't know very much about CF before that and I thought all people with cf are very sick from birth. I am 29 and I am so used to being sick without knowing why, so I don't really think I have cf, but I'll see...

I was pretty healthy, I think, until I was maybe 12. Started to have stomach/gut problems. Lost a lot of weight. A couple of years after that I got a rectal prolaps and invagination. Today I suffer from very severe gut problems...I don't digest food very well and I take plant enzymes. I have had obstructions (like ileus) in the small intestine/lower part of the large intestine for more than 10 years. I have never had "normal" constipation with hard stool. I also have chronic sibo, probabaly because I don't digest food very well... I have always been slim, despite eating a lot. I was really underweight during my teenages. Today I have learned that I need to eat a lot, despite no appetite...so I am pretty normal, but at the lower part of BMI scale, and I have low muscle mass.

I have chronic sinusitis and I have had breathing problems since I was a child, but since 2010 it has been very bad. The weird thing is that I have normal lung function, fev1 etc. (I walk a lot despite of everything, but I can't run) I have mucus on and off, but it seems like I have flares when I suffer from extreme chest tightness, air hunger,, shortness of breath...can't almost eat and sleep or sit etc because I am out of breath and extreme tightness. I also get more mucus and sinus problems, swollen lymph nodes etc during my flares. ....but I am never free from infection symptoms. Last time I was very well and almost felt healthy was during a period of two months, two years ago, after a course of amoxicillin (because of a dog bite).

My first sweat test was 35 (borderline for adults is 30-60 here in Sweden) and the second one 45. They went on with genetic testing, stool test and sputum test...and I'll meet a doctor in 3 weeks from now (have not met one yet, just the person who did the sweat tests)....when I get the results. I'll not be surprised if everything is fine.

The problem is that I don't have mucus to cough up right now....just mucus in the throat and sinusitis. So, my question at the end of this long post is:

Do all people with cf have cough and mucus all of the time? I don't have much cough, just when I have some kind of flare (then I often cough a lot in the morning, for a couple of hours, and some more later in the day), and same with the mucus, it's on and off...or rather wax and wane (but too little to cough up when I am "fine", but I am not sure if I still have mucus in the lungs, but can´t get it up). I do more "huffing" than coughing. I had some weeks with lots of mucus before I got the sputum cup from the lab..

I have no idea how to do the sputum test right now.. I asked if I could do a throat test instead, but they said no.

 

[kenna2]

I was diagnosed at 7 and I was never able to cough anything up for years until I got into my 20s. It really all depends on the person, but for me, there are days when I don't cough at all and some I do. Some days I have a lot to cough up and some I have nothing. My lung functions are in the low 60s right now. It's ok if you don't have anything to produce. I really don't understand why they are giving you such a hard time about not being able to bring anything up. If you can't bring anything up then continue to let them know that and they'll have to swab your throat then.

 

[Ratatosk]

My son is 15 and has never been able to cough up anything either --- doesn't have anything to cough up --- so they do the throat swab as well.

On a side note, with your digestive issues, have they run a fecal fat test to determine pancreatic sufficiency/insufficiency?

 

[Mrina]

I was diagnosed at 7 and I was never able to cough anything up for years until I got into my 20s. It really all depends on the person, but for me, there are days when I don't cough at all and some I do. Some days I have a lot to cough up and some I have nothing. My lung functions are in the low 60s right now. It's ok if you don't have anything to produce. I really don't understand why they are giving you such a hard time about not being able to bring anything up. If you can't bring anything up then continue to let them know that and they'll have to swab your throat then.

Thank you!! When I called the clinic and asked what to do, the nurse told me to bring the sputum cup with me when I come to see the doctor. She said that the physio could help me...but I don't think it'll help if I have nothing to cough up at that time... I am just afraid that I will have no chance to do the sputum test if the genetic test is negative, because even if I do not have cf it seems like a good idea to try to find out what I have in my respiratory tract... But I will wait and see if I can produce something next week or so. Thanks ?

 

[Mrina]

My son is 15 and has never been able to cough up anything either --- doesn't have anything to cough up --- so they do the throat swab as well.

On a side note, with your digestive issues, have they run a fecal fat test to determine pancreatic sufficiency/insufficiency?

Thank you for your reply ? I did a fecal elastace test some days ago. Second time I did it the result was 500, but the first time many years ago it was 200. So I don't really know...I get severe obstruction in the small intestine without enzymes, but despite of this the result was normal...so, I'll see what result I have this time!

 

[Ratatosk]

Thank you!! When I called the clinic and asked what to do, the nurse told me to bring the sputum cup with me when I come to see the doctor. She said that the physio could help me...but I don't think it'll help if I have nothing to cough up at that time... I am just afraid that I will have no chance to do the sputum test if the genetic test is negative, because even if I do not have cf it seems like a good idea to try to find out what I have in my respiratory tract... But I will wait and see if I can produce something next week or so. Thanks ��

I know respiratory once had DS inhale hypertonic saline and did some chest physiotherapy (CPT) on him to bring up some mucus. Unfortunately, ds couldn't spit anything out doing that either. But at least respiratory should know the tricks to at least help you get something out and if not, do a throat swab.

DS has mostly sinus issues and they don't want any of that stuff in the sputum cup.

 

[Charlene Phillmon]

I am a 56 year old female who only found out I have CF when I was 45! I was pretty healthy as a child, only in the hospital when I was 5 for pneumonia. Then about 18 had alot of "allergy" problems, or at least that is what the Dr. thought. I was also told I had uncontrolled asthma . I am pretty healthy most of the time, but when I get sick 3-4 times a year it usually starts with my sinuses, then goes into my chest. At 45 I had pneumonia in June, and my new Pulmonologist ask if I had any stomach issues, first time a pulmonologist had asked. When I told him yes he said he thought I may have CF. The only person I knew that had CF had died when he was 12, so I just knew I did not have it. I had a sweat test run weeks later and it came back positive. I have chronic sinusitis also and it usually ends up with me having to go in for a "tune-up" , which is having a 2 week course of IV antibiotics. I do not cough much unless I am sick and I do not have much mucus unless I am sick, and even then sometimes I don't have much. You will find that each case of CF can be totally different. Good luck at getting a sputum test run. I use hypertonic saline nebulized and it will help sometimes. I have found that if I carry a sputum cup with me it is a good thing, then whenever and wherever I am I can get a sample for them, then rush it to the lab. The Dr has a standing order for me there.
Best of luck with everything!!!

 

[Mrina]

I know respiratory once had DS inhale hypertonic saline and did some chest physiotherapy (CPT) on him to bring up some mucus. Unfortunately, ds couldn't spit anything out doing that either. But at least respiratory should know the tricks to at least help you get something out and if not, do a throat swab.

DS has mostly sinus issues and they don't want any of that stuff in the sputum cup.

Thank you very much ? Have never tried hypertonic saline... And yes, probably it's good to learn some CPT!

 

[Mrina]

I am a 56 year old female who only found out I have CF when I was 45! I was pretty healthy as a child, only in the hospital when I was 5 for pneumonia. Then about 18 had alot of "allergy" problems, or at least that is what the Dr. thought. I was also told I had uncontrolled asthma . I am pretty healthy most of the time, but when I get sick 3-4 times a year it usually starts with my sinuses, then goes into my chest. At 45 I had pneumonia in June, and my new Pulmonologist ask if I had any stomach issues, first time a pulmonologist had asked. When I told him yes he said he thought I may have CF. The only person I knew that had CF had died when he was 12, so I just knew I did not have it. I had a sweat test run weeks later and it came back positive. I have chronic sinusitis also and it usually ends up with me having to go in for a "tune-up" , which is having a 2 week course of IV antibiotics. I do not cough much unless I am sick and I do not have much mucus unless I am sick, and even then sometimes I don't have much. You will find that each case of CF can be totally different. Good luck at getting a sputum test run. I use hypertonic saline nebulized and it will help sometimes. I have found that if I carry a sputum cup with me it is a good thing, then whenever and wherever I am I can get a sample for them, then rush it to the lab. The Dr has a standing order for me there.
Best of luck with everything!!!

Thank you so much ? yeah, it really sounds like each case are really different. Right now I have a lot of mucus in the throat, probably from bronchitis, but not from lungs...and I think that is not what they want in the sputum cup.. I'll see what happens until the meeting with the doctor, if I can do the sputum test...otherwise hopefully they are helpful at the cf center! All the best to you!