Life with CF comes with frequent hospitalizations, often referred to as “tune-ups.” These hospitalizations can last a few weeks. 

When I’m inpatient, I like to binge crime shows, talk to my friends on FaceTime, and (try to) sleep. When I was young, I used to sell artwork, such as caricatures of my doctors and nurses. I also made a… Read more

Hi Paul! I’m so glad you found a modulator routine that works for you!

Dating is hard; dating with cystic fibrosis makes it harder. Not everyone can handle dating someone with CF. But never forget, you are not a burden. 

Please share any dating tips for the community! How would you recommend telling a new partner about your invisible illness?

I love the Dexcom! I’m glad to hear it’s working well with your pump! I can’t wait for the islet bionic pancreas to release their tubeless pump later this year!

I am on Trikafta since 2021. Had to lower dose to 1 Orange pills a day (no seperate ivacaftor) because of severe mental side effects that lasted 4 years and mysteriously went away within a month after taking a small dose of oral morphine twice a day because of dyspnea.

I depend on the Trikafta completely (fev1 24%). When I forget to take… Read more

I use the omnipod 5 pump along with the dexcom g7 gcm. Which talk to each other and makes it wireless.

I’m so happy to hear that the pump is working for you! What pump do you use? Ive tried the Omnipod and the islet BionicPancreas

I was diagnosed with CFRD at 12. I am now 43 and use Dexcom and Insulin Pump. I was against the insulin pump for a really long time. I finally started the pump and my A1C stays under 7 consistently.

CF-related diabetes is a common complication for those with cystic fibrosis. 

If you have developed CFRD, at what age did it happen? How do you manage your CFRD?

How fun! Stay safe and let us know how the rest of your trip goes! <3

I’m traveling right now, actually! Six weeks in Ireland, Italy, and Peru.

These days, many of us take a CF modulator. They can work wonders, but are not a cure. 

Which modulator are you on, and is it working for you? Do you have any questions or experiences with modulators you want to share?

 

Also, here is a guest piece I wrote about living with CF! https://cysticfibrosisnewstoday.com/guest-voice/guest-voice-cf-just-uninvited-passenger/

Hi everyone! My name is Jen, and I am your new CF Forum moderator! I am so happy to be here with you all.

I was diagnosed with cystic fibrosis at age 2. When I was 13, I had my first double-lung transplant, and when I turned 24, I had my second!

I have always considered CF a sort of superpower. Even though it’s not as fun as flying, I… Read more

That’s awesome! Yeah, it’s definitely a lot of things to prep for. What is your next trip planned?

Travel writer who lives with CF here! I take 7+ trips a year (most of them international) and have to do a lot of prep work to make it happen. The hardest part is packing all of my medications, and I always bring a lot of backups just in case something happens with my luggage. I make sure to schedule CF appointments in advance so I can check…

Read more

Hope everyone had a great weekend!

With the summer approaching, many people have trips and vacations planned. Anyone in the CF community knows that traveling comes with additional modifications and adaptations. Whether you are a patient or a caregiver, traveling with CF requires more preparation than it does for other people.

Do you have… Read more

Great to hear! I am doing well. Looking forward to summer weather!

Hi Kevin, Thx for asking. I am doing fine.thanx to the morfine. My fev1 went up from 17% to 24% in one month. Mental nightmare from Trikafta completely gone. Enjoy being my self again.

How are you?

Cheers, also from Debbie,

Paul

Hey Paul, thanks again for sharing! How’s your week going?

Hey everyone!

I just wanted to check in and see how everyone was doing in terms of mental health. Being a part of the CF community, whether you are a patient or a caregiver, isn’t just about maintaining physical health. This disease has a profound impact on people’s mental health. Here is a great column on this subject.

How has your… Read more

Hey everyone!

May is recognized as cystic fibrosis awareness month. Members of the CF community recognize awareness month in different ways. Some focus on fundraising, while others might share their stories on social media. Whatever you do for it, your advocacy and awareness efforts matter.

Are you doing anything for CF awareness this… Read more

Generally, CF is diagnosed in infancy. However, there are more and more cases where adults are getting diagnosed later in life. I am interested in hearing about the medical journeys of those who were diagnosed with CF later in life.

What were some signs, before being sweat-tested, that led to your CF diagnosis? How did you navigate the… Read more

Hello, CF community!

Since we have several new members, I’d like to invite everyone to share a little bit about themselves. Specifically, everyone has different diagnosis stories. Some were diagnosed with CF at an early age, while others didn’t receive a diagnosis until well into adulthood.

What about you? When were you or your loved… Read more

Hello, CF community!

I enjoyed this column by Anna Jeter. This is from Pulmonary Hypertension News, one of our sibling sites. Anna writes about many of the frustrations she’s had with medical dramas in the past, and how they are often woefully inaccurate. As a patient with pulmonary hypertension, she stopped watching these shows for a long… Read more

Columnist Tré LaRosa recently wrote about advocacy and cystic fibrosis. He went with his parents to Capitol Hill to meet with representatives and advocate for the CF community. Check out his column here!

I really like how this piece emphasizes that advocacy takes many different forms. I especially like this passage: “To me, advocacy is… Read more

I am sorry the link does not seem to work correctly on this website.

Go to our website

https://www.parkinsjordaans.nl/paul_debbie.php

 

and click on the story nr. 47.

or contact me on

paulmetdebbie@gmail.com

then I will send the file to you completely for free.

 

Cheers, Paul

Congrats William to your 3rd annual anniversary!

In March 2026 the best thing that happened to me (so far) is that I finally overcame the terrible mental side-effects of Trikafta (Kaftrio is the European name) from which I suffered deeply since starting the drug in 2021.

I had a manic period (about 10 months) followed by a severe… Read more

You can find it here

https://cysticfibrosisnewstoday.com/forums/forums/topic/trikafta-kaftrio-4-years-evaluation-it-helps-the-lungs-but-hurts-the-brain/

Hi William,

I have just posted the link to the report I wrote about my mental nightmare on Trikafta.

Cheers,

Paul

Some of you might remember me. I am Paul (1963), married to Debbie, we are from the Netherlands. My body has Cystic Fibrosis (delta f508/r553x). I have posted regularly on the forum since 2019. In May of 2022, I posted about using Trikafta for 9 months[1]. It was a very positive review. My lung function went up from 20 to 25% FEV1, there was… Read more

Yes, I take Dekas as well.🙂

Many thanks Paul, that’s very helpful. My niece has been taking Dekas vitamins containing all sort of vitamins that help as a supplement, we order them from a doctor based in Netherlands, let me know if this would be of interest to you, I’ll share the link to the website and the doc’s email address.

Thanks William, I wrote a Tale about my experiences with Trikafta. It will appear on our website for free download soon. I am currently waiting for my website operator to upload it and give me the download link.

Hi Jeandarc,

My liver has (as far as I know) had no problems with Trikafta. It was checked 4 times the first year and yearly after that. Some slight enzyme elevation but nothing beyond the normal borders. My dose reduction was caused purely by the mental side effects of Trikafta that were unbearable. And even this reduction did not help. But I…

Read more

Hi Paul, that si great to hear how well you are doing with Trikafta. 🤩 may I ask if you have been taking anything to support the liver as well? My 7yo niece with CF didnt have very good liver function test results after taking Orkambi for a few year and now she has just switched to Kaftrio and we wonder what supplements to give her to improve…

Read more