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Could I have CF?

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Posted 12/28/2006 1:24 AM (GMT 0)

I have just found this website and I could really use some advice. I am concerned that I may have Cystic Fibrosis which has been misdiagnosed as Asthma.

I am 29 years old and have suffered with Lung problems for most of my life. I have always been very small build and was only 4 stone until my early teens, but more worryingly, I have had pneumonia at least three times (probarbly more) - the first time at three years old. There are lung problems on my fathers side, but as my mother is adopted, we have no idea what history her family may have.

I was diagnosed with Asthma at four, but have suffered from re-occurring infections about 4/5 times a year since then always requiring large doses of antibiotics. From the age of 9, this escalated to steriods and then hospital admissions. I have been in hospital more than 20 times.

I have seen consultants for Asthma and nothing has ever been suggested to the contrary. However other symptoms include constant thick yellow catargh (with a bad taste and smell) bowel problems (constipation and large painful stools), nausea and lack of appetite and an occasionally salty taste in the mouth. My toes are also a bit rounded (I have just read that this could be a sign)

For the past 6 years, I have had a chest infection every few weeks and the gap has closed to requiring large doses of antibiotics and steriods monthly. I have had chest xrays but never a CF test. The doctors usually comment that the white blood count is high and just write out a prescription.

I take a large dose of asthma inhalers daily, but unlike most asthmatics do not actually have attacks - I only get ill when I have an infection. I don't have an attack if I mix with animals, flowers or any usual triggers (although I do have allergies). I have a home nebuliser, and during one of these spells it does help - as by this stage the inhalers don't.

I am embarrased to ask my doctor as they seem to have very little time for me and the Asthma nurse is never there. I just know I need to get this sorted.

Any idea's??

Posted 12/29/2006 4:10 AM (GMT 0)
Hi Smith,

You most certainly can have CF. I too was misdiagnosed as asthmatic with severe allergies until 25. I got pneumonia after my second child was born, almost died, and only then was I diagnosed correctly. Some Drs. mistakenly think because of your age that it is not possible to have lived 25+ years and never diagnosed as CF. By the way, I am now 51 and doing very well because I take care of myself with the daily regime of breathing treatments, drugs and exercise.

Ask your Doc to give you the very simple and painless sweat test and that should confirm your diagnosis. Please don't be embarrassed to ask your Dr, this is your life and his job. If you don't feel comfortable discussing your condition with your Dr., it is most defintiely time for a Dr. change for your own health and well being. Where do you live? There are CF centers located all over the world with teams of Drs. that specifically treat CF patients. You can find a center in your area by checking www.cff.org (USA) or google CF for the country you live in. Every center I have visited have the most caring teams of Dr, nutritionists, psycologists, & nurses you could ask for. They stay informed in all the new aspects of CF treatments and drugs that are available. The sooner you mention Cf to your Dr or CF center, confirm your diagnosis, the sooner you can begin to receive the right treatments that will improve your quality of life. And if you aren't CF, then good for you! Good Luck and let us know what you find out! Jodi :-)
Posted 12/29/2006 3:40 PM (GMT 0)
:-)  Hello Jodi.

Thank you so much for your reply, this has been much appreciated.

I will definately make an appointment with my Doctor early in the New Year to discuss this situation a hopefully get some answers. I live in the U.K and if it does turn out to be CF I am sure there will be some local organisations that I can join and I will actively look out for them. I have realised how important these forums are and how much support they can be.

Once again thank you and I hope all goes well for you.

Smith 120.

Posted 12/30/2006 2:24 AM (GMT 0)
Hello again Smith,

I figured you lived in the UK since you listed your weight in stone. :-) I'm so glad to hear you will follow through with your Doc for a visit.

Here, check this out: www.cftrust.org.uk. The CF Trust is the UK equivolent of our CF Foundation here. This site is chock full of info that could help you. I'm sure if you contact them they could steer you in the right direction for a center in your area.

It also has a great forum for adults that I have posted on in the past. I was in need of Cf center locations in the London area when I visited this last Oct. A member graciously emailed me a list of centers and Drs. names in the London area just in case I encountered any health issues while traveling in the UK for a month.

Good luck with your appointment and that your outcome is what you hope for.
Please keep us posted.
Regards,
Jodi :-)
Posted 12/30/2006 3:54 AM (GMT 0)

Hello Smith and welcome to HW!  As Jodi advised, get a sweat test and a fecal fat test done, they are painless and will help the doctors in findina a diagnosis.

Keep us posted!

Cheers!

Posted 12/30/2006 11:22 AM (GMT 0)

Hello everyone and thank you for your messages.

I have just come back from a visit to an Osteopath! During this last infection, it turns out that I have damaged the muscles in my shoulder and the side of my neck. The Osteopath said that this area is all connected to the respiratory system and that the pain is a result of the coughing from the chest infection as well as breathing difficulties.

I mentioned to her that I was going to ask my Doctor to investigate about all these infections that I am getting, especially as it is appearing monthly. She said that I really should get it looked into and that really it just wasn't right.

I will do this straight away on Tuesday and see what happens.

Thank you again and Happy New Year

Smith 120 (Sarah)

PS: Thank you for website info, will take a look.

Posted 1/5/2007 9:15 PM (GMT 0)

I have been to see my Asthma Nurse today, as the pain that I saw an Osteopath for, turned out to be another bout of Pneumonia! I was at my local hospital on New Years Eve and an Xray confirmed the diagnosis.

My Asthma Nurse says I have definately got Asthma - but possibly also something called Brochietasis, which is a permanant abnormal widening of the airways. This causes constant infections and yellow sputum amongst other things. They are treating me with antibiotics for a month, but the likelyhood is that I will be taking these on a permanant basis.

If things still don't improve I will ask them to probe further, but hopefully this may work.

Thank you to all who posted replies.

Smith120

Posted 1/6/2007 7:17 PM (GMT 0)
{{{{{Sarah}}}}}

Sorry to hear of your new year troubles! sad Not a good way to start the New Year.
Are you on oral or IV antibiotics? Generally, oral antibiotics soon become resistant and no longer work for CF germs. Germs in a CF lung are very hard to get rid of and need specialized prescribed cocktails of IV antibiotics to even begin to touch them. It sometimes takes several rounds of trying varied combinations of drugs for them to work as everyone is different. These cocktails of IV antibiotics are very different than those prescribed for a pneumonia infection. If the infections go unchecked, they cause permanent lung damage, leading to more infections that become harder and harder to eliminate. sad And the vicious CF cycle repeats itself over and over.

CF is not always black & white. eyes There are so many variables and it masks itself as many other conditions, most often as Asthma. Just as my Drs. kept insisting that Asthma was my problem for 25 years. I still would insist on a sweat test just for your own peace of mind and to either rule out CF or to finally get the correct antibiotics to help clear up your recurrent infections.

FYI, my CF Care Center Clinic share offices with an Asthma clinic near a Childrens Hospital. In fact my Drs. are Pediatric Pulmonologists who also run the CF clinic and still care for the Adult CF patients. The Asthma clinic almost routinely order sweat tests for all their child patients, just because they know the problems of CF diagnosis/asthma.

Good luck and keep us posted. We care! :-)
Jodi :-)
Posted 1/6/2007 11:55 PM (GMT 0)

Hello Jodi :-)

The hospital put me on a course of oral antibiotics, which was the third one that I have been taking since 18th Dec! They too mentioned that this bug had become a bit resistant to the antibiotics I had previously taken.

The Asthma Nurse has given me another course of oral antibiotics to start tomorrow, which will last for a month. After this I have to book another appointment. It looks quite likely that they will refer me back to the Hospital to see the Consultant as they are quite keen for me to have a CT Scan of the Lungs and at this point I will then insist on the sweat test. This last dose of Pneumonia has left me feeling exhausted with no energy and it just cannot continue without knowing why it is happening. They have mentioned too that if it is this Bronchietasis, that I will need daily phsiotherapy to bring up the sputum, which collects in the lungs and that it is important to increase my exercise levels.

I really appreciate the advice that I have received on this forum and I will post replies to let you know how I am getting along.

Thank you again and I hope you are getting on o.k.

Sarah (Smith 120)

Posted 1/9/2007 3:01 AM (GMT 0)
Hi Sarah,
I'll bet you are exhausted! sad
Please do let us know your results and feel better!
Take care, Jodi :-)
Posted 10/5/2012 3:46 PM (GMT 0)
wonder if you can help i have bronchial asthma every month a get a chest infection and bring up load of mucus and i bring up a lot of acid reflexes.

me and my wife have been trying for a baby for 5 years so we went to get help from the NHS the doctor felt my testicals he can feel the first tube that come from the sack but not the Vasa deferentia) tube he said i might have Cystic Fibrosis adding up all my symptoms im 27 years old could i have Cystic Fibrosis??

please help me understand this

Thanks
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