I have various friends who are older (40+) who are eligible and use Trikafta. Unfortunately, some of these friends aren’t seeing the same extent of benefit that Trikafta can have. I know this can be super disappointing and frustrating. 

 

Are you on Trikafta? Do you feel like it’s not working as well as you expected? 

I was diagnosed a little later than the CF camps, so I never had that experience. I know I grew up (and still kinda am) paranoid of cross contamination, so I veered far away from CF’ers. BUT, my first best friend with CF went to high school with me — so we waved from a distance when we saw each other!

Hi Bronwyn, thank you so much for sharing your diagnosis story. I am so glad your doc was able to get you a diagnosis — that is wild to hear you have such a rare mutation. Do you believe your scleroderma affects your CF related health (or vice versa)? Sending you good vibes!

That’s incredible! I am glad your brother-in-law had you to nudge him towards diagnosis. I don’t believe there are any known diagnoses in my family. And, to my knowledge I only had a great aunt (passed in the 80s) who demonstrated signs of CF, but of course no one knew why she had chronic lung issues.

I’ve noticed there are a few folks here that are late diagnoses. I  don’t have the same experience, and I only know a life with CF. So, the idea of being diagnosed late is foreign to me. I am so curious to know what your experience is like.

 

So – for those who have been diagnosed later: how has your life changed since your diagnosis? Do… Read more

Welcome Travis! I think it’s so interesting (and I imagine so difficult) that y’all had such a cluster of diagnoses! I agree, it is crazy to think of all the folks who have CF and aren’t diagnosed. Years ago it was almost unheard of to have a diagnosis later in life, but I am seeing more folks being diagnsosed.

 

I saw this story! Gosh — I never thought I’d become one of these people, but I feel like I have almost forgotten about COVID. I think up until January this year I was pretty hands on (masks, being more choosey about where I spend my time, social distancing, etc). But, dang — I got worn out. Now I’ ve gotten my boosters and am getting my next… Read more

<p style=”text-align: left;”>This is an awesome list! I’ve got a couple I can think of:</p>
 

1. PA: multiple uses

a)prior authorization (insurance related)

b) pseudomonas

c) physicians assistant

2. ENT — ear nose and throat

3. MRSA: Methicillin-resistant Staphylococcus aureus

4. GI — gastrointestinal

Hi Stacy! Yes, I think identifying the CF gene has certainly helped in diagnosing more folks who are older. I hate to hear that you’re having so many frustrations with your care team — where is your CF clinic? Are you able to see another team?

I used to believe I had a late CF diagnosis at 9 years old. But, as I’ve learned more and have met more folks, it’s becoming apparent that there are quite a lot of folks who were diagnosed much later in life. 

The CF Foundation recently shared this post on Instagram of Patricia who was diagnosed at 67 — and it still shocks me to see such a… Read more

So proud of you Jenny and I am excited to see where you’re headed! Finding that balance is so hard, but I think the best thing I can say is give yourself grace! And, where you can try to go slow!

Ah — I sometimes feel like I am an oddball. I have lost various young friends/ family members and don’t feel survivors guilt. I often am struck by an intense depression and a renewed sense towards the fragility and uncertainity of life. In terms of coping with depression — lots of therapy and learning to be very gentle with myself and going slow.

I’ve been on Trikafta for three years now and I am nearing four years IV free. Since being on Trikafta, I’ve had various courses of oral antibiotics but haven’t had a full-blown exacerbation. I am currently going on week two of moderate chest congestion + orals. I am feeling better, but not “normal.” It’s strange, because pre-Trikafta, I would… Read more

Tim, that’s incredible! I hope Trikafta gets approved soon — what was your wife’s LF at diagnosis vs now?

Woah, it’s wild to think you were able to serve in the military for so long! Did you have any lung issues before the year leading up to diagnosis?

In general, most people don’t like getting older. However, in the CF community, it’s not unusual for folks to celebrate getting older and surpassing their life expectancy. For me, I never expected to be almost 30 and healthy. So, I happily welcome the years that come.

However, because I was never planning to be older and healthy – I… Read more

I’ll have to check out Late by Kate! But, in terms of going to appointments — I always try to dress fashionably comfortable. I think it helps me feel a little more put together during a visit. I also wonder if showing up more “presentable” makes doctors treat me a bit differently.

However, when admitted — all sense of fashion goes to the wayside!

After talking to a few friends with chronic illnesses, the conversation about parents and caregivers sharing their child’s medical journey came up. Most didn’t appreciate it when others shared their medical updates on public forums.

Growing up, I absolutely hated when my mom would share online, especially if she would refer to my experience… Read more

I feel like we often talk about our classic symptoms with CF — the chronic coughing, is it another infection exacerbation? Or the plethora of GI issues that come up. And, when we don’t have any ongoing symptoms — there’s a lingering symptom that I often shame myself for: chronic fatigue.

For people with CF, having chronic fatigue is out… Read more

Ah great topic — I second Daryn, I do like it and it is more fun living in this post Trikafta world. But, golly — I think what the most challenging thing has been my relationship to my body. I’ve stepped back from a lot of my medications and lowered my treatments quite a bit, so it’s a bit disorienting. Pre Trikafta, taking care of my body… Read more

We all have ways of escaping from the harsh realities that surface with CF. Heck, I’d even say the everyday, mundane realities that are a part of CF need a form of escapism. I think for me, what helps me is writing and connecting with myself — whether that’s through spending time on the trails, meditating, or working out.

I think making an… Read more

Oof, this is a great question. There’s so many unnecessary hurdles within our healthcare system. One that comes to mind are prior authorizations. I don’t know if I have any tips, but moreso I wish that a doctor’s order would override what is deemed medically necessary by insurance companies!

Glad to hear you are recuperating and the kidney stones are out — let yourself rest!

Lately, I have been struggling with a deep depression. In January my Aunt was suddenly diagnosed with cancer and died about three weeks later. This was my first time witnessing someone actively dying and there was something beautiful and spectacular in seeing the life cycle take place in front of me.

However, since she has passed I’ve… Read more