Questions to (Hopefully) Reasure myself.

loophole

New member
When I was younger I had my tonsils and adenoids taken out. At age 8. At age 10 or 11 I tested positive for cycstic fibrosis. I was sent to riley hospital (bigger hospital for kids) where they ran more test and they come back negative. Said I didn't have cycstic fibrosis. at age 14 i had sinus surgery. No exaggeration. My mom came out and told me that the Dr. told her that he does at least one of these a week and has never seen one with sinuses as bad as mine at that age level. They asked me if my mucus was green or clear. I looked puzzled.... It's green I said.. it always has been. I've had sinus issues to this day and congestion leading to the lungs... (i have no idea if this means a thing but when i spit it never comes out clean.. (almost never).. it will be stringy if you know what i mean... I'm on antibiotics at least twice a year and this last year i've missed two whole weeks of work because the build up has caused strep throat and pneumonia/bronchitis. It's always been in the back of my head that maybe i do have cystic fibrosis... i really don't know the complete symptoms... but it often feels like someone is sitting on my chest and my mucus always is thick.. and very seldom clear. My wife just woke me up because I was laying flat gargling in my sleep. (i can't sleep in other positions) she said it sounded like i was drowning... so i get up and try my best to clear out my throat and ended up throwing up (very rare for me).... i've already been to my dr. already been put on short term disability..(for strep and the early stages of pneumonia it looked like again, ends this week).. should i be calling my dr back and making an appointment about this? Should I be concerned at all..?

I feel for those who do have to deal with a child by the way for the month my parents thought I had it at a younger age..... it tore them up... god bless you all.
 

Twistofchaos

New member
Hi there,

None of us can tell from here if you have CF or not so as you are worried you could go back and request genetic testing to be done.
Testing has improved over time and it can now tell you if you have two CF mutations (CF) , one (carrier) or none at all.

Goodluck in your search!
 

JustDucky

New member
I would go to a CF center for testing....how were you diagnosed as a kid? Via sweat testing? Sounds like you need to get this checked out either way. It could be CF, or not...but you need further testing at an accredited center. There, they will do sweat testing and genetic testing...more than likely, they will start off with the sweat test as it is the easiest test and then move on to genetic to look for mutations.
Good luck...I hope you find answers

Jenn 41 wCF....(I was a late dx as well at 33, so it does happen)
 

Beccamom

New member
I would go to a CF center for testing....how were you diagnosed as a kid? Via sweat testing? Sounds like you need to get this checked out either way. It could be CF, or not...but you need further testing at an accredited center. There, they will do sweat testing and genetic testing...more than likely, they will start off with the sweat test as it is the easiest test and then move on to genetic to look for mutations.
Good luck...I hope you find answers

Jenn 41 wCF....(I was a late dx as well at 33, so it does happen)

I was a late diagnosis too age 35. I understand the girgling at night. I was diagnosed with sleep apnea prior to my CF testing and diagnosis. My CF pulmonologist explained that I snore when I breathe out verses when I breathe in. He said obstructive sleep apnea from, for example, a large neck causes it to be difficult to breathe in because the airway is compressed. In my case I can breathe in, but when I sleep and try to breathe out I am pushing mucus out and so my husband complains I seem to be choking. Then sometimes I can't push the air out and wake up feeling like I am drowning. Before mucus clearance I would cough and throw up the mucus and feel much better. I guess while not a recommended technique the force of throwing up pushes a lot of mucus out. Best wishes for the right treatment. I hope you feel better soon.
 

Aboveallislove

Super Moderator
I agree. I would call cf center ASAP and schedule sweat test and ask for full gne sequencing. The good news is that if you have cf you likely have a mutation which a new drug can help immensely because you must have some residual cf function to do so well.
 

Melissa75

Administrator
One positive thing to note, is that knowing what you have or don't have will help you and your doctor treat it smarter. Whether you got diagnosed with CF or something like Primary Ciliary Dyskinesia or an immune-deficiency or non-CF bronchiectasis, preventative care and treatments can actually improve your situation--airway and sinus clearance and targeted antibiotic therapy when you are sick.

I sweat-tested negative for CF as a baby and adult, and I was eventually diagnosed with non-CF bronchiectasis via CT scan. Since then my airway clearance regimen has helped to avoid exacerbations, and when I do have an exacerbation, I'm not getting random treatment anymore. Preventative and smarter care have also helped me feel less mental stress about it all. I hope you get answers that do the same for you.

I can relate to the gurgling. It makes reading a story to my youngest at bedtime hard unless I sit up. For me, there is always something to hear with a stethoscope, but the audible gurgling comes and goes depending on how recently I've been sick. http://en.wikipedia.org/wiki/Crackles
 

loophole

New member
Thanks for the advice.. i'm 30 now.. I talked to my mother earlier today (she remembers the whole ordeal a bit more then me) she said I was tested twice at one hospital positive then tested at Riley Children and tested negative. I called my dr. and they are full but after explainging me throwing up and gargling they are fitting me in. I'm going to tell her the ordeals from 7 on up.... and that I would like to have lab work done.... I called a hospital (knew my dr. would have to refer me) to see if they did both tests... they said they only do the blood test.. its one of the best hospitals in town... but should I goto a different hospital to get the full results or would a good blood test show both ends? Thanks guys for your advice.
 

loophole

New member
I would go to a CF center for testing....how were you diagnosed as a kid? Via sweat testing? Sounds like you need to get this checked out either way. It could be CF, or not...but you need further testing at an accredited center. There, they will do sweat testing and genetic testing...more than likely, they will start off with the sweat test as it is the easiest test and then move on to genetic to look for mutations.
Good luck...I hope you find answers

Jenn 41 wCF....(I was a late dx as well at 33, so it does happen)

Sorry I forgot to answer this question it was sweat testing. that was about 21 or 22 years ago
 

Calimom

New member
Go to a hospital with a CF Center. Even the best hospitals without CF centers don't really understand this disease and its symptoms. You can check the CFF.org website to find the centers all over the US. A CF center will be most likely to get you tested correctly and will take your symptoms very seriously. You may have CF and you may not, but either way, knowing what you've got will help you get the treatments you need. Btw, if you turn out to have CF, that's a scary diagnosis but doesn't change the quality of your life--except that you're more likely to get the meds and treatments that can actually help you feel better! Good luck and keep us posted.
 

Ratatosk

Administrator
Staff member
Ditto on the hospital wcf center. DS was diagnosed thru genetic testing; however, sweat tests were normal.
 

MichaelL

New member
My comments are essentially the same as others, but my story is similar to yours. I was diagnosed with a sweat test around 5 years old in the early 1970s. We then moved to another state and my parents had me retested. The sweat tests came back negative. They repeated the tests and continued to get negative results. Fast forward to age 35 and I started to have constant lung infections. I finally got one that I couldn't get over. They did genetic testing and confirmed that I have CF. Some mutations don't show up on the sweat tests.

As said above, I would recommend you go to a CF centre and get a genetic test.

I hope they find out what's going on and help you soon.
 

loophole

New member
My comments are essentially the same as others, but my story is similar to yours. I was diagnosed with a sweat test around 5 years old in the early 1970s. We then moved to another state and my parents had me retested. The sweat tests came back negative. They repeated the tests and continued to get negative results. Fast forward to age 35 and I started to have constant lung infections. I finally got one that I couldn't get over. They did genetic testing and confirmed that I have CF. Some mutations don't show up on the sweat tests.

As said above, I would recommend you go to a CF centre and get a genetic test.

I hope they find out what's going on and help you soon.

Thanks for the post and I went to see my Dr. I'm generally not happy with the situation... she didn't even get out her stetheschope and basically gave me a talk.. I even brought in a list dating back of tonsil removal and adenoids at at 5... on up.... to lung infections... siniuses etc.. I mentioned on the phone as well at the office i would like to be tested for cystic fibrosis again and she gave me a spill about how sweat testing was probably done so we can rule out cystic fibrosis.. this immediately umm.. ticked me off... I know you all here aren't dr.'s but you probably know more on the case and updates for cystic fibrosis since a lot of you are dealing with the suffering of it... I told my wife yesterday if this isn't cystic fibrosis fine. but i've never met another person in my life (never met someone with cystic fibrosis) that has had the same constant issues.. infections... on and on and on.... I'm really aggravated with my dr. visit.. it will be a week and a half before i see my allergist and i'm going to demand a cf test then.. may be rude of me... but it's my body and life... if i want a labwork test.. i think i should be aloud to have it. What's your guys opinions thoughts... I know your not Dr's... nor seen my family history... but it's filled with sinus surgery. amoxicilin... many other antibiotics and several ct scans... (that didn't look good) of the sinuses.. some of the lungs.... needless to say i'm not happy...
 

AmalynRose

New member
I would say it's time to get a second opinion. Your doctor clearly does not care about your concerns and is making no effort to help ease your worries. Twenty years is a long time and in that time your health has not gotten better. You need to have gene sequencing for CF. Call a CF center and explain your problem. I am sure that they will want to see you right away and they will take good care of you.

Edit: I would be pissed, too, if my Dr. did to me what your Dr. did to you.
 

Printer

Active member
Please listen to everyone who posted here. You need to go to an APPROVED CYSTIC FIBROSIS CLINIC and you need to be seen by a CYSTIC FIBROSIS SPECIALIST.

Stop wasting your time and money on local Doctors.

If you will tell us where you live (nearest large city) we will give you the info on your nearest CF Clinic.

Bill
 

Melissa75

Administrator
Where I live (NJ) you can call a CF clinic and try to make an appt. BUT in order to actually get an appointment, you have to fax or mail relevant records to the office for the Dr/staff to review and then you get a call several weeks later with an appointment time.

Loop, the kinds of things you'll need are names of Dr/practice/hospitals that did your sweat tests, ct scans, surgeries and labs. Any reports you can get sent over or sent to you and the you send over will make their end of things easier and faster.

I'm sorry you hit a wall with this. Best wishes.
 

loophole

New member
Really Appreciate all the concern here... Nearest largest City is Indianapolis. However I would be willing to Travel to For-twayne if someone had a very good experience there. (I'm pretty positive Lafayette,IN doesn't have anything I'm looking for)
Shocking to come to a forum and see people truly concerned. Thanks for your help and I will keep those interested posted. I hope it comes back clear.... like I said, I just know something isn't in the norm.. Thanks again. Will have to wait until monday to get anything done further I'm sure and I work 7-3.. Our Church has a DR. There who is good and hopefully he can see me after 3. (reason I need to see a "Dr." Is because my insurance won't cover it unless I get a referral from a normal Dr. to see a specialist...)
 

Printer

Active member
There is an Adult CF Clinic at the Indiana University Medical Center. Michael Ober, MD, is the Director. (317) 948-3267.

Good luck,
Bill
 

dmac

New member
I agree with others to get to a CF center and get the gene test. I had lung troubles my whole life, hemoptysis, coughing up green gunk all the time, shortness of breath etc. I had a sweat test that came out negative when younger then later on another one, but on that day I had a temp of 102 degrees and was dehydrated from diarrhea all day. The test came back inconclusive. I saw a doctor at the CF clinic and she immediately did a gene test and came back positive. Getting the right meds made all the difference. I was 40 when diagnosed, am now 62. Believe me, finding out what you have, whether CF or something else, will help a great deal. Wish you well, please let us know how it goes. Donna
 
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