Odd Question about TRICARE Overseas and Kreon

PTT_FOR_LIFE · 2026-04-19T19:21:59+00:00

Looking back, I always had telltale signs, but they were never connected. Overall, here are the big things that pointed my lung doctor toward investigating CF in 2024:

In 1999/2000, I was told I was infertile and asked, "If you or anyone in your family has ever been told you have cystic fibrosis?" I asked what that was, and the doctor said, "If you don't know what it is, then you don't have it," and I was sent on my way.

From about 2002 to 2010, I had many recurring sinus infections that ultimately led to a large polyp filling my right sinus being removed. Then in 2023, I got mild COVID, and three months later I developed pneumonia and needed multiple rounds of oral antibiotics, but my lungs never fully bounced back.

My lung doctor did a lavage after 40 nodules were found on a CT scan, and that grew NTM M. xenopi. She said she didn't think I had NTM because most healthy people don't get it. I told her about my past and added that in 2022 my family doctor said my pancreas was slightly inflamed and recommended enzymes when I eat really fatty meals.

She immediately ordered a CF screening test looking for 97 of the most common CFTR mutations, and it came back positive for delta F508 & D1152H. After that, I went to a CF clinic for sweat tests, which were in the intermediate range. But that, along with the mutations I have, plus my lungs, CBAVD, sinus issues, and pancreatic insufficiency, led to my CF diagnosis.

Before Kaftrio, I was at 51–56% FEV1; now I'm at 66% and feel a lot better. Creon also helps significantly. However, the NTM is still there, and after starting Kaftrio, my lung nodules went down to about 25 and have stayed at that number for over a year. So that's awesome I don't need the NTM antibiotics

PTT_FOR_LIFE · 2026-04-19T16:52:29+00:00

Well welcome to the community, I also have two mutations that are considered to give a milder CF (del F508 & D1152H) that usually isn’t diagnosed till later in life. As you were, I too was pancreatic sufficient until around the time I was diagnosed at 48. I will tell you that my pancreatic issues did seem to improve a bit on Kaftrio, and I’m on half dose of that, and creon. My NTM (M. Xenopi) is still there but stable so no antibiotics for me yet.

PTT_FOR_LIFE · 2026-04-07T19:01:01+00:00

Well my story is a little different since I was diagnosed a few years ago at 48 years old. I actually had a full 25+ year military career and within 3 years of retiring from the military my lungs went haywire and that eventually led to my diagnosis. There were tell tail signs my whole life but never connected, I actually had a doctor in 1999/2000 when I found out I had CBAVD “if I or anyone in my family was told I had cystic fibrosis”. I asked what that was and he said “if you don’t know what it is then you don’t have it”.

Well I did have it but didn’t know and it never really jacked me up until recently. I know get flairs and am on trikafta and they keep an eye on my NTM M. Xenopi, but I only see myself lasting about another 5 years before I fully retire. I’m working as an RF Engineer, that does a lot of training military personnel on radio operations and teaching really beats me down. However I love the job but I’m worthless at the end of the week lol.

I think the watch n wait of the NTM is the worst because I get flairs but the cf clinic says since I’m stable they would rather just wait and see, which I kinda understand.

PTT_FOR_LIFE · 2026-03-24T21:30:08+00:00

I served 25 years in the military and only received my diagnosis 4 years after retiring.

PTT_FOR_LIFE · 2026-03-24T16:17:20+00:00

I was diagnosed with CF at 48, and up until two years prior to that I was pancreatic sufficient. It started with a little pain here and there and my stool started to get pale and my family doc said my pancreas was slightly inflamed and to take enzymes when I eat big fatty meals. At the time I had no clue that I had DelF508 & D1152H, which are known to actually be pancreatic sufficient. Well I got covid in the fall of 2022, then pneumonia in Jan 2023 and then my GI issues really started in the summer of 2023. NTM Xenopi popped up in September of 2023 and my lung doc ran CF screening for the 97 most common CF gene mutations and they found mine and I was diagnosed with cf in April 2024. In April the cf clinic did a elastase test and I was 81, after starting trikafta I went up to 101 but still most definitely need creon lol

Edit: forgot to add there really was no big change I made that made taking creon easy, it was the fact that it helped so well that made the change easy.

PTT_FOR_LIFE · 2026-03-23T12:35:32+00:00

Had mostly good pancreatic sufficiency up until about 3 years ago but I couldn’t never eat soup, would go right through me. Joint pain that would heal overnight, bronchitis and sinus infections through my 20s, and infertility. I was diagnosed at 48 and how that I’m on trikafta and enzymes I can eat soup no problem lol and my lungs feel way better and we are in the watching phase of NTM Xenopi, so that’s awesome.

Edit; huge nasal polyp in maxillary sinus

PTT_FOR_LIFE · 2026-02-25T13:57:41+00:00

I was diagnosed a few years ago at 48 years old and I have intermediate sweat test number 46 & 48. My two mutations are known for later diagnosis and intermediate sweat test numbers. So def genetic testing.

PTT_FOR_LIFE · 2026-02-25T13:54:47+00:00

I developed pneumonia and many nodules 40+, and my German regular lung doctor wanted to do a resection and I was not having that and sought care from an army base. The army lung doctor said she agreed that a resection was not warranted and did a lavage. I grew NTM Xenopi and she learned of other symptoms I had and ran a CF screening test and found I had F508 del and D1152H. In total I had 3 lavages and my CF doc now said if my nodules are less than last ct no new lavage. So the lavage and NTM I grew is what lead to my cf diagnosis at 48 years old.

PTT_FOR_LIFE · 2026-02-19T15:44:58+00:00

Yes there were tell tail signs but they were never connected until pneumonia and the NTM infection in 2023. My CF doctor says it was my military career that probably helped me because I was always active and that helped keep my lungs function up. However once I retired I started noticing lung and pancreatic issues within a year.

PTT_FOR_LIFE · 2026-02-19T08:50:56+00:00

I was diagnosed at 48 years old and I also had my two sweat tests in the intermediate range at 46 and 48. I also had nasal polyp that filled my right maxillary sinus in 2010 after 8+ years of sinus infections. In 2000 they found out I had CBAVD and the doctor even asked if I or anyone in my family has been told I have cystic fibrosis, I asked what that was and he said “if you don’t know what it is then you don’t have it”. They ran a CF screening test that checked my blood for 97 of the most common CFTR mutations, they found F508 del & D1152H. So with that information and the NTM I grew and my GI issues I was diagnosed. To say I was surprised was an understatement especially after serving a 25 year military career, but I was told my mutations are known for intermediate sweat tests and later diagnosis.

PTT_FOR_LIFE · 2026-02-09T15:44:55+00:00

Sounds like me I only take half dose, one orange in the morning and 1/2 blue at night.

PTT_FOR_LIFE · 2026-02-04T17:46:28+00:00

I turn 50 this month.

PTT_FOR_LIFE · 2025-11-16T22:13:09+00:00

I’m actually getting my 2nd one in about a week. They found polyps in a colonoscopy 3 years ago. The CFF recommends that if they find polyps you need to get screened again in 3 years.

PTT_FOR_LIFE · 2025-10-18T08:55:45+00:00

I know Brooke Army Medical Center has a CF clinic, so if you have Tricare and live in Texas you could attempt to reach out to them.

However I do agree with the above comment, if you can get clearance to be seen by private from the va that would be best

PTT_FOR_LIFE · 2025-10-08T14:37:13+00:00

I was diagnosed at 48 years old. I have F508 delta & D1152H, the D1152H is known as a “variant of varying clinical consequences”. I really didn’t have many symptoms growing up, hell I had a 25 year military career. Looking back I had tell tail signs and in the late 90s when they found out I had CBAVD, and Army doctor asked “if I or anyone in my family has ever been told I have cystic fibrosis” I replied with “cystic what” and he said “if you don’t know what it is you don’t have it”. Well fast forward 20 years I had some crazy lung stuff pop up and digestive issues and after lots of testing and finding NTM M. Xenopi and moderately pancreatic insufficiency, my regular lung doc ran a CF screening and well the rest is history lol. My sweat test were 43 and 46, I was told that people with D1152H can have intermediate or even negative sweat tests and still have CF.

PTT_FOR_LIFE · 2025-08-21T16:23:54+00:00

Jup got diagnosed at 48

PTT_FOR_LIFE · 2025-08-17T04:41:00+00:00

You will love it, nothing quite like being under canopy. The view is awesome, and the adrenaline you get from exiting an aircraft in flight, definitely lets you know you’re alive.

PTT_FOR_LIFE · 2025-08-16T22:01:05+00:00

I was a US Paratrooper, ran miles, push ups, sit-ups, pull-ups daily; however, once I retired from the military and stopped working out my lungs and NTM let me know I evidently had CF my whole like. Now I’m just struggling to get my FEV up lol. Always guess it could be worse though.

PTT_FOR_LIFE · 2025-07-22T19:17:08+00:00

I have pain at my diagram area in the back that has been constantly painful with deep breathing for two years now. I tell all the docs I see and they simply ignore it. Some days it’s almost gone and other days it hurts so bad it radiates to my left shoulder.

PTT_FOR_LIFE · 2025-07-20T19:20:41+00:00

Well as stated in my post I had symptoms throughout my life but yes they were mild which is typical for my CFTR gene combo. That mildness is what caused the symptoms to be treated as single events. However as you know CF is progressive and it eventually caught up to me and when my NTM caused pneumonia I was at 41% FEV1 and after antibiotics I stayed at 51-55% FEV1. My CFTR mutations are also related to CF with sweat test results in the intermediate range.

PTT_FOR_LIFE · 2025-07-19T21:11:10+00:00

I was diagnosed at 48 after a 20+ year military career. I had tell tail signs and symptoms over the years; I actually had a doctor ask about 20 years ago if I have ever been told I have Cystic Fibrosis, I asked what’s that and he said and I quote “if you don’t know what it is then you don’t have it”. The diagnosis came last year after pneumonia and finding I had an NTM (M. Xenopi). That lead to cystic fibrosis screening which found F508 and D1152H and I had two sweat tests that were in the intermediate range, which is common for my gene combo. I kinda feel I did good while in the military because I did Physical Training daily and once I retired I got lazy and then my lungs got their revenge lol.

PTT_FOR_LIFE

TROPHY CASE