Newly diagnosed 23 year old

kelly632

New member
Hi There, I was diagnosed last Friday with CF, I've been ill for years and no one would believe me, finally a new doctor did.
Yesterday I went and learnt some clearing techniques but i'm kind of in limbo of what to do next. Any advise would be appreciated.

Thank you.
 

Ratatosk

Administrator
Staff member
I'm assuming your doctor would refer you to a Cystic Fibrosis center or specialist where you'd most likely get some bloodwork and xrays done, sputum cultures to see if you're growing any common CF bugs. Maybe get prescribed some antibiotics if you are culturing something. Vitamins. Bronchodilators to be nebulized such as albuterol, maybe hypertonic saline as well to help open up the airways and to help move out any mucus. In the states most people do a minimum of 2 chest physiotherapy treatments (CPT) a day, use a nebulizer during that time. Most are pancreatic insufficient and need to take digestive enzymes to help digest fats and protein.

Basically get into a routine to keep your lungs happy and healthy. I'm sure it's overwhelming, but since you've been dealing with health issues for years, I can't help but think you'll feel much better with regular treatments, medications...
 

hope333

New member
Hello,

Just wanted to tell you that my daughter was diagnosed at age 19. She is 32 now, married and feeling well. Ratatosk is right, the first thing you need to do is get affiliated with an adult CF clinic. They will give you tools to get your lungs up to their optimum level of functioning. Now that you know the reason for feeling unwell, you can do something about it. Sending good wishes...
 

Soo70

New member
Hello
Being diagnosed as an adult is a strange mix: relief at knowing what it is you have, but with fear of what it means. You have good advice here - you need the input of a team of specialists to keep you in the best health.

I was diagnosed at 29, so I get what you're going through. Remember, not everyone needs loads of medication and physio - but it's the team at your local clinic who can help you work out what you do need.

Good luck.
 

Printer

Active member
Kelly:

I was diagnosed at age 47 so trust me when I tell you that I know exactly what you have gone through. It is critical that you be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CF SPECIALIST. You will continue to see your PCP but CF requires a specialist. If you will tell us the name of the nearest large city, to you, we will find a CF Clinic for you.

Bill
 
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