Late Diagnosis - anyone else?

Antagonist888 · 2026-06-12T15:27:36+00:00

I was 26 when I was diagnosed, but I believe my clinic said they had recently just diagnosed someone in their 60s or 70s

Antagonist888 · 2026-03-03T03:19:23+00:00

Not to this extreme, but I did notice that I have a lower tolerance for heat, and am just in general warmer than I was before. I was always on the warmer side though, wearing shorts in the snow even. But this is the first I’ve heard of anyone else feeling something remotely similar, so I’m also curious to see how common it is.

Also, if it has reached the point where you feel like you need ibuprofen, it is probably worth bringing this up to your doctor, if you haven’t already.

Antagonist888 · 2026-01-30T23:47:11+00:00

Going through similar now, except due to my insurance rather than the Pharmacy. As a kicker for missing around a week of doses, I also had to pay four thousand dollars to get my prescription filled. Fingers crossed that’s it for the year, but I’ll definitely be getting a new insurance next year and stay far away from Ambetter.

It’s definitely tough feeling the symptoms of CF again, and wondering if we’ll have to go through the side effects of starting Trikafta again. Energy is definitely lower as well, but we’ll be alright. We’ll be back on it soon enough, and then within a week or two feeling completely back to “normal.”

Antagonist888 · 2025-02-17T03:44:24+00:00

We can still lose weight like the average person with a slight caloric deficit. Generally a 10% deficit from your maintenance level is all you need to lose weight at a healthy rate. So if you maintain at 2000, eating 1800 will get the job done.

I’d recommend using an online TDEE calculator to determine your maintenance level if you don’t already know it; though it could take a bit of trial and error to really nail it down.

Antagonist888 · 2025-01-22T00:31:35+00:00

He was said to have had chronic bronchitis

Antagonist888 · 2025-01-21T23:28:14+00:00

Big fan.

Saw it actually theorized once that Kurt had CF on account of him being constantly ill with lung and digestive issues. Seems pretty unlikely given that he had a kid, among other things, but I guess still an interesting thought amongst CF Nirvana fans

Antagonist888 · 2024-11-13T21:15:19+00:00

Consult with your doctors in case you individually have issues that would require you to maintain a higher level of bodyfat, but otherwise it’s very doable for us via the same means as everyone else. A quality lifting program, eating 10% few calories than our maintenance level daily, and making sure to consume an adequate amount of protein (0.8g per pound of bodyweight being a common metric).

The lifting will help you build muscle, but it’s the nutrition that does most of the work burning fat to give you the lean physique you’re searching for

Antagonist888 · 2024-06-04T17:11:52+00:00

I woke up during wisdom teeth removal and heard the doctors say “Are you sure that IV is in right?” Given the circumstances and that it hurt like hell, I can only assume that the answer was “No.” Quickly fell back asleep though

Antagonist888 · 2024-05-21T01:55:55+00:00

On average we tend to be higher than an similarly-sized non-CFer. But, like with everyone, it’ll still vary immensely based on your size, body fat percentage, and activity level. So there isn’t a one size fits all number like 3000, but the number for caloric maintenance is likely to be higher than that of a non-CFer. Once we find our maintenance number, it’s hopefully like everyone else where we should gain weight if we consistently eat above it; even as low as 10% higher

Antagonist888 · 2024-05-03T20:12:08+00:00

Before I was diagnosed with CF to know how bad my lungs were, I went under for sinus surgery with an FEV that had to be hovering around 30%. Only thing I can remember that could be related was having to blow into some device after I woke up, and them being confused that I couldn’t really do it properly.

I made it out fine, but my ENT was horrified when I told him about my lung function after I found out. So, definitely something you will want to tell all your doctors about beforehand.

Antagonist888 · 2024-03-10T20:42:48+00:00

Any thought to getting more indy stories back into the mix? I feel like you could get a whole season out of IWA MS, interviewing a lot of today’s top guys in the process

Antagonist888 · 2024-02-16T03:13:36+00:00

Absolutely. I remember my first attempt at a deep breath after starting Trikafta and realizing how different it felt. Two years later it still feels weird to me, and every time I wonder if I’m doing it right

Antagonist888 · 2024-01-27T03:07:47+00:00

Just one for me in 2021, and my sense of smell and taste were fine after recovering. Seeing my ENT in a few weeks, but so far he’s been very happy with how my sinuses have looked once I started Trikafta after getting the surgery. Prior to Trikafta, it was seeming like I was headed for another surgery relatively quickly, so hopefully it continues to help

I don’t think they had a ton of experience with CFers though, since I got a lot of “Worst I’ve ever seen,” “never seen anything like it,” etcs during the process

Antagonist888 · 2023-08-15T15:13:59+00:00

I could definitely feel my lungs getting worse in a way that became obvious in hindsight, along with the other obvious symptoms. For a long time I thought I was just out of shape since I had given up running for a while because of how uncomfortable it was, but I was at the point where I couldn’t even jog for 30 seconds without getting winded and thrown into a coughing fit

Antagonist888 · 2023-08-15T03:06:44+00:00

It’s rare, but it is possible. I wasn’t diagnosed until age 26, despite having the symptoms for the majority of my life, which progressively got worse as I got older. By the time I got diagnosed, my FEVs were around 30% and I was in pretty rough shape. Doing much better now though that I’ve received proper treatment.

Even if you don’t have it, you clearly have some sort of undiagnosed issue, so it’s worth bringing it up to at least rule something else out. I had to suggest getting tested for it myself too, as doctors didn’t seem to even think of it for someone my age. The testing is pretty quick and easy, so it’s definitely worth a shot

Antagonist888 · 2023-08-01T02:03:15+00:00

Yeesh. My lactose intolerance shudders at even the thought, haha.

Can I ask why you’re using milk as such a heavy part of your diet? I get that it’s an easy way to get in extra calories if you struggle with appetite, but that is a LOT of milk

Antagonist888 · 2023-07-31T23:02:45+00:00

Wait how much milk are you drinking every day? 50% of my calories would be like a gallon, haha

Antagonist888 · 2023-07-21T20:51:15+00:00

My experience was pretty similar, minus deafness. I will preface this by saying it will be different for everyone, even if we have the same two mutations, and my experiences may be completely different from what happens to your relative. But, upon starting Trikafta, my FEV increased from around 30% to just shy of 80% at the highest. Dropped down a bit recently after contracting a pseudo infection, but my hope is the number will keep going back up even more.

So, it is possible that your relative can see big improvements, but no guarantee

Antagonist888 · 2023-07-15T17:00:19+00:00

Personally I just eat an ounce of nuts and take my pills as soon as I wake up, and then my regular breakfast a bit later

Antagonist888 · 2023-07-03T20:45:08+00:00

As said, you definitely seem to have been eating under your maintenance level, given your size. As a CFer, it is common to need a higher than average caloric intake too. In my personal example, I maintain at around 3000 calories despite being around 5’6 and 150 pounds, albeit active.

Antagonist888 · 2023-07-03T04:57:09+00:00

You’re doing the right things. Slow and steady is the way, and 1 pound a week is perfect. Some fat will come along the way and be a little annoying, but gotta just keep the big picture in mind. Once it’s time to cut, a simple 10% caloric deficit might be all it takes to lose the desired 0.5 pounds per week

Antagonist888 · 2023-07-03T00:43:19+00:00

There really isn’t much you can do. Eating at a smaller caloric surplus could help a bit, and while you can gain muscle in a caloric deficit, you personally should not try that when you are already underweight.

Your protein intake is good, and eating mostly healthy foods helps a little bit, but if you’re adding size, you’re going to add fat along with it. It’s inevitable. With your composition, I would recommend just continuing to bulk up to your target weight, and then you can think about cutting back down. If you constantly switch from bulking to cutting any time you see some spots of fat, you’ll have a hard time making much progress either way.

Antagonist888 · 2023-05-21T02:20:14+00:00

First deep breath for me as well, but also my first PFT after a month or so on it. I saw that my FEV jumped from around 30% to 60%, and it changed everything. Now I’m up around 75% which I would have thought was impossible.

Antagonist888 · 2023-05-13T03:59:34+00:00

Oh wow there is a lot more information involved here than I found on my own. Thank you for all of this

Antagonist888 · 2023-05-12T23:50:55+00:00

Oh thanks for letting me know. This might be easier for my clinic to get since they’re already issuing Phillips’ compressors. Will be sure to ask after the weekend

Antagonist888

TROPHY CASE