Hi! I am 21 years old and am trying to find answers. For all my life, I have been underweight despite eating like a pig nonstop! Now, I am 5 feet 2 inches and weigh 90 lbs, and my weight went up a few pounds after being on steroids. I cannot remember having major respiratory illnesses growing up despite a few cases of bronchitis; however, I did always have shortness of breath when doing physical activity. Additionally, I have always had nasal congestion throughout my life. This past year I have been rushed to the hospital 4 times due to being out of breath. Three of these times were due to coughing fits which happened after being active, and the other time was due to simply walking back to my dorm in the cold. Along with being out of breath, I have had what seems like thick mucus in my throat for quite a few years now, and this mucus seems to be getting thicker over time. I was referred to a pulmonologist and underwent breathing tests, and I was then told I was only breathing at 40% my expected rate! Additionally, he noted that I had trouble breathing out as well as breathing in. I am now on albuterol as well as advair 250/50 which I take 2 times a day. Additionally, I was put on flonase nasal spray a few months ago in hopes of thinning out the mucus in my throat and helping to relieve my congestion. I was also told at my next visit that if there is no improvement I will be put on Singulair. I underwent allergy testing, which showed no major allergies. I am still struggling and am noticing my breathing is making it increasingly difficult for me to participate in activities I used to do. I brought this up at my well visit with my general practitioner a week ago and was told to possibly look into getting a differential diagnosis as she had no idea what else to tell me. I start school in less than a month and will be student teaching, so I really hope to be able to get this all under control so it does not affect my teaching. I was searching online and came across cystic fibrosis and read about it possibly being a mild case diagnosed in adulthood. I was wondering if any one had any experience with this or had any other suggestions for me. Any input would be greatly appreciated!
Late/mild diagnosis?
- Thread starter jenny123
- Start date
Aboveallislove
Super Moderator
I'm so sorry for what you're going through. Cf is a definite possibility and many here have been diagnosed in adulthood. I'd immediately find out if your pulmo dr is at a cf clinic which is certified. Go to cff.org and search for cf care centers. There are only 100. If your pulmo isn't the. I'd call you gp and ask her to immediately refer you to a cf clinic for a sweat test and or genetic testing. I'm concerned your pulmo didn't test for that. If it is cf with proper meds you'll do so much better. If your sweat test is borderline or positive you need to definitely find out what mutations you have. Good luck!
Thank you so much for replying! I just checked, and my doctor actually is at a CF clinic, so I will have to ask about testing! Do patients who are diagnosed late still require all the medications as patients who were diagnosed in infancy, or is there such a thing as mild CF? This is just all so new to me, and I've never actually heard about CF before.
Aboveallislove
Super Moderator
You'd likely have to have the basics which are albuterol, pulmozyme, hypersal and vest. And then if you cultured something antibiotics. Enzymes often aren't for those diagnosed late but with your weight issues you might benefit. Oh and also often steroids as many with cf have asthma component. But the good news is if you have cf likely it is milder and that it will benefit from kalydeco which is why you need to know the mutations. Kalydco helps a ton for those with a lucky mutation. Did they culture you to see if you had any bugs? If not I'd be concerned....maybe call and see if you can get doctor to call. Ask for sweat test. Many cf doctors think older folks cannot possibly have cf but if you search this cite you'll find many diagnosed later than you! Also, sorry for the tmi request, but do your stools float? If so that indicates malabsorption a sign of cf. also put your hands in water and see how long until it wrinkles...not a sure sign but if it wrinkles quickly...like in 3 minutes that's also a sign of cf. finally did they X-ray your lungs to see if any permanent damage? If not, again, I'd be kinda concerned....
Aboveallislove
Super Moderator
Ps if a
albuterol is making you jittery asks for xopenex which is now available generically. Our sons ped and my brother in law doctor recommended we do that when our son was a couple weeks old and diagnosed...the cf doctor didn't even mention it and just scripted albuterol.
albuterol is making you jittery asks for xopenex which is now available generically. Our sons ped and my brother in law doctor recommended we do that when our son was a couple weeks old and diagnosed...the cf doctor didn't even mention it and just scripted albuterol.
Simba15
Member
No! I was diagnosed at age 50 - after having many many doctors tell me "nothing is wrong with you." I have a milder form of the disease.I have exercised my entire life and still do. Only know am I developing GI problems and need enzymes. I started enzymes at age 52. When I get sick I need a nebulizer. I do not take any other CF meds.
Thank you so much! My stools do float at times. I typically go back and forth from having constipation or loose stools and the loose stools always float. They have never xrayed my lungs or cultured me for bugs. All they keep doing is giving me the breathing tests and then prescribing more medication for me as they keep saying they have no idea what could be wrong with me.
Aboveallislove
Super Moderator
Augh. I'd try to get into another cf center ASAP if you can't get ahold of your current pulmo and get sweat test.
I can relate to all above, everything. I was 53 when finally diagnosed due to a severe sinus infection which was pseudonomas and staff that were both antibiotic resistant. Not one doctor did a culture with all the serious infecions I had all my life until I was referred to University of Penn hosp in Philly. My sweat test and genetic testing proved I did have CF. I have greatly beneifted from the treatment described above.
One test you can do yourself very easily is to tast your skin. Mine is quite salty which is a sign of CF. Never knew this until CF was suspected. Message me if you have any questions. Good luck. Oh, btw, I will be 70 in Oct!!!
One test you can do yourself very easily is to tast your skin. Mine is quite salty which is a sign of CF. Never knew this until CF was suspected. Message me if you have any questions. Good luck. Oh, btw, I will be 70 in Oct!!!
W
welshwitch
Guest
WOW njins! Amazing story! This board is full of late diagnoses, with more and more people with CF crossing 70! Power on!
Your symptoms sound like they could be CF-related. I was diagnosed at 34 and have what is considered a mild form of CF. In terms of testing, I would suggest a genetic test is more important. Some milder forms of CF -- such as mine -- test negative on sweat tests.
Once they figured out that I had CF, they put me on proper meds/treatments and I was feeling better within a week or so. I had previously been sick for months without my doctors knowing what was wrong.
If you can't get into a CF doctor right away, I would see if your doctor can order the genetic testing (and sweat testing if you like). That could speed things up for you.
I hope they can figure out what's wrong with you soon.
Once they figured out that I had CF, they put me on proper meds/treatments and I was feeling better within a week or so. I had previously been sick for months without my doctors knowing what was wrong.
If you can't get into a CF doctor right away, I would see if your doctor can order the genetic testing (and sweat testing if you like). That could speed things up for you.
I hope they can figure out what's wrong with you soon.
P
Pixiepops
Guest
I'm the same age and have a similar situation, my doctor suggested possible cf and I'm waiting for gene test and sweat test results. Good luck to you x
I was diagnosed with cf at 72, but had had symptoms most of my life. When I would mention it to doctors, they thought I was crazy, but when a grandchild was diagnosed I finally had the genetic test and there it was: Deltaf508 and a rare mutation, Q1291H. Getting on the right meds and breathing treatments made a huge difference in my quality of life, and I just celebrated my 75th birthday. I'm pancreatic sufficient, but my grandchild grew quite a bit when she was diagnosed and put on the right meds. My sinuses are a never ending anoyance, but I'm just glad to be here. My case would be called "mild," but that does not reduce the effects of cf, so don't let anyone patronize you talking about, "Oh, it's just a mild case." Good luck - get the genetic test.
HuntersmomTBM
New member
My 16 year old son has Tracheobronchomalacia (mis-shaped and softened airway), Innominate Artery Compression (an artery near the heart goes the wrong direction and compresses' his trachea 10-15%). He has had 1RSV, 7pneumonias, 6bronchtis, 15croups and I don't even know how many URIs too many. Age 14 they added CRMS -Cystic Fiborsis Related Metabolic Syndrome. It's a gray-area type of diagnose. His Sweat Test's were elevated but not enough to diagnose CF. His genetic test did not find any known mutations. So basically he treats for CF but doesn't not have the official CF diagnosis. The treatment has helped loads. You should know there are so many different levels of CF. Keep the hope we are here.
Hi. I just celebrated my 77th birthday on July 21. I was not diagnosed with CF until January of this year. I had digestive problems all my life and was underweight as a child. I also have had a cough and thick sputum every morning as far back as I can remember. I was told I had a sensitive stomach and allergies. since my symptons were mild no one ever suggested testing me for CF. My son was diagnosed with CF at age 5 back in 1967. He died from CF at 28, which was old for cf kids at that time. even though I questioned doctors about my symptons for years no one considered CF since it was a childhood disease. Finally in January of this year because I was having more severe digestive problems I had a cat scan done to look at my pancrease. They also did a cat scan of my lungs.
Turns out I had bronchieasis in my lungs, which indicated a long term accumulation of scar tissue from lung infections, etc. Then I put it all together and asked to be tested for CF. The genetic test showed that I do have CF. I am nebulizing some meds now and go to the clinic regularly for check-ups and am feeling pretty good (for a 77 year old). So don't be discouraged. I have lived a fairly healthy productive life for 77 years. I had 3 children, 6 grandchildren, a career as a CPA owning my own business, and taught accounting at a University for 12 years. I am retired now but still quite active. I also have found others in their 70's and 60's on this web site who are doing well. I am grateful that I finally have a correct diagnosis after all these years of wondering. Find a good CF clinic and just keep on with your life.
Turns out I had bronchieasis in my lungs, which indicated a long term accumulation of scar tissue from lung infections, etc. Then I put it all together and asked to be tested for CF. The genetic test showed that I do have CF. I am nebulizing some meds now and go to the clinic regularly for check-ups and am feeling pretty good (for a 77 year old). So don't be discouraged. I have lived a fairly healthy productive life for 77 years. I had 3 children, 6 grandchildren, a career as a CPA owning my own business, and taught accounting at a University for 12 years. I am retired now but still quite active. I also have found others in their 70's and 60's on this web site who are doing well. I am grateful that I finally have a correct diagnosis after all these years of wondering. Find a good CF clinic and just keep on with your life.
Hi. I just celebrated my 77th birthday on July 21. I was not diagnosed with CF until January of this year. I had digestive problems all my life and was underweight as a child. I also have had a cough and thick sputum every morning as far back as I can remember. I was told I had a sensitive stomach and allergies. since my symptons were mild no one ever suggested testing me for CF. My son was diagnosed with CF at age 5 back in 1967. He died from CF at 28, which was old for cf kids at that time. even though I questioned doctors about my symptons for years no one considered CF since it was a childhood disease. Finally in January of this year because I was having more severe digestive problems I had a cat scan done to look at my pancrease. They also did a cat scan of my lungs.
Turns out I had bronchieasis in my lungs, which indicated a long term accumulation of scar tissue from lung infections, etc. Then I put it all together and asked to be tested for CF. The genetic test showed that I do have CF. I am nebulizing some meds now and go to the clinic regularly for check-ups and am feeling pretty good (for a 77 year old). So don't be discouraged. I have lived a fairly healthy productive life for 77 years. I had 3 children, 6 grandchildren, a career as a CPA owning my own business, and taught accounting at a University for 12 years. I am retired now but still quite active. I also have found others in their 70's and 60's on this web site who are doing well. I am grateful that I finally have a correct diagnosis after all these years of wondering. Find a good CF clinic and just keep on with your life.
Turns out I had bronchieasis in my lungs, which indicated a long term accumulation of scar tissue from lung infections, etc. Then I put it all together and asked to be tested for CF. The genetic test showed that I do have CF. I am nebulizing some meds now and go to the clinic regularly for check-ups and am feeling pretty good (for a 77 year old). So don't be discouraged. I have lived a fairly healthy productive life for 77 years. I had 3 children, 6 grandchildren, a career as a CPA owning my own business, and taught accounting at a University for 12 years. I am retired now but still quite active. I also have found others in their 70's and 60's on this web site who are doing well. I am grateful that I finally have a correct diagnosis after all these years of wondering. Find a good CF clinic and just keep on with your life.
Similar story
My daughter was diagnosed at 19 while she was away at University. Her story sounds a lot like yours. She thought she had a wicked cold. The university clinic did a chest X-ray and couldn't understand why someone so young could have such bad "pneumonia". Sent her to emerg. The emerg doctor noticed her clubbed fingernails and suspected CF. Prior to that she had digestive issues and a sore abdomen after eating, which was mis-diagnosed as IBS.
If you indeed have CF, the proper meds, chest physio and digestive enzymes will make you feel so much better! I would insist on testing for CF ASAP.
Good luck with this, and also with teacher's college!
My daughter was diagnosed at 19 while she was away at University. Her story sounds a lot like yours. She thought she had a wicked cold. The university clinic did a chest X-ray and couldn't understand why someone so young could have such bad "pneumonia". Sent her to emerg. The emerg doctor noticed her clubbed fingernails and suspected CF. Prior to that she had digestive issues and a sore abdomen after eating, which was mis-diagnosed as IBS.
If you indeed have CF, the proper meds, chest physio and digestive enzymes will make you feel so much better! I would insist on testing for CF ASAP.
Good luck with this, and also with teacher's college!
W
welshwitch
Guest
Wow oldcflady! This is quite amazing. I'm 34 and though I have 100%+ lung function I am still struggling with this disease emotionally. I want to be like you and just enjoy life and stop worrying and stop letting CF ruin the party. Thanks for your story.
I must say I am touched by the level of "quality information" and open sharing on this community thread. Its such a beautiful demonstration of the power of this community to connect and educate each other. If only more people like jenny123 could be exposed to information like this. This information has the potential to change lives and improve quality of life. It needs to be read by other non-diagnosed CF sufferers....I will work on that.