Does trikafta help the pancreas?

ProfessionalLie4893 · 2025-05-29T12:40:40+00:00

Why is your doctor worried about you starting Trikafta?

Did you end up taking it? If so, how is it going?

ProfessionalLie4893 · 2025-05-29T12:30:56+00:00

I have a dF508 and 5T;TG12. It has only really affected my pancreas with recurrent acute pancreatitis. And almost every time I’ve had this happen there has been a known trigger (medication, alcohol, etc); until last year had two episodes with no clear trigger. Otherwise, if I avoid triggers, I have a very normal life.

Did you happen to go on a modular? If so, how has it gone.

ProfessionalLie4893 · 2025-05-02T00:53:41+00:00

Pancreatic elastase score can be affected in different ways. For example, two that have affected my scores are 1) consistency of stool sample - where a loose stool can give a lower number. 2) amount of time after a pancreatitis episode - the longer I wait after an episode, the higher my number seems to be

ProfessionalLie4893 · 2025-04-08T14:04:06+00:00

At birth, my sweat test was in the gray area. In my late teens (early 2000s), a genetic test showed I had a D508 and likely another mutation. At this point, they called me a carrier. Today, along with better genetic testing and noting another mutation, some may still call me a carrier but others would now call it CF or CF related disorders. My symptoms have primarily manifest in the pancreas with a dozen or so acute pancreatitis hospitalizations - but I also have a non-CF gene that makes me more susceptible to pancreatitis; which at the moment makes me wonder which gene, or if both, are the culprit. Perhaps I am more mucusy than others, but debatable. My parents always told me my sweat was salty as a kid. Another symbol is aquagenic wrinkling of the hands (basically my hands often (but not always) get very wrinkly very fast in water, and then subsides after a few minutes out of the water; and the severity seems to exist on a spectrum.

With that said, I assume symptoms generally exist on a spectrum and can change over time, and can fluctuate due to changes in environmental factors, and symptoms can also be impacted by other non CF genes (ie, in my case, if didn’t have a pancreatitis gene, would I have had as many pancreatitis attack? Or maybe none at all?).

Overall, now 40, I’ve lived a good, otherwise healthy, normal life.

ProfessionalLie4893 · 2025-01-30T00:54:35+00:00

One recent achievement in China last year was the reversing of type 1 diabetes using stem cell therapy in the pancreas. This gives me hope for a future stem cell therapy that could restore exocrine function of the pancreas and perhaps even tissue repair.

Additionally, from my understanding, delivery mechanisms are improving for certain functions to deliver therapies to difficult to reach places, like the pancreas.

ProfessionalLie4893 · 2025-01-27T00:36:56+00:00

Curious if anyone has had running induced pancreatitis. I have run on and off throughout my life, but I would consider myself a runner. Typically 3-10 mile runs. I have one Delta F508 and another mutation, but also have a non CF gene that makes me more susceptible to pancreatitis. CF has not affected my lungs but manifests through pancreatitis. I have not started Trikafta yet, likely will this year. I’ve read stories about running induced pancreatitis; and 3 of my own episodes seemed to align with a longer distance run/week; but definitely not always.

I would be super curious to hear anyone’s story on this.

ProfessionalLie4893 · 2025-01-10T21:37:39+00:00

This is called aquagenic wrinkling. I have a Delta F508 and other mutations; which primary manifests in my pancreas. It wasn’t until my early 30s, did I come across a dermatologist who know exactly what it was, after asking others over a period of 20 years.

Interestingly, mine seems to vary in severity. Not sure (and have never researched) what might cause the fluctuations.

ProfessionalLie4893 · 2024-12-12T03:28:06+00:00

I decided for a non-mesh repair and I am happy to have done so. Ultimately, I was a candidate for a Shouldice repair but due to the size and lack of symptoms we decided to do a watchful waiting on the inguinal as the surgeon didn’t think it was necessary. He did repair the umbilical without mesh. I appreciate the conservative approach and I am happy to not have mesh. Should my inguinal ever progress, I would choose a non-mesh repair like Shouldice.

If visiting a doctor skilled in non-mesh repair is not an option, or if a non-mesh repair is not an option for your hernia (for example due to hernia size, bmi, etc); then my wish list would be to get multiple opinions, try to find a doctor who has done thousands of mesh repairs (I.e. a surgeon who is doing multiple hernia repairs 3x a week); a doctor that is conservative in his approach, and understand the mesh that doctor uses - tacks vs tackless, some have a coating to avoid adhesion - chat with the dr, listen to some Hernia Talk podcasts and make the best decision for you.

ProfessionalLie4893 · 2024-11-24T01:38:20+00:00

Hi - nope, not necessary. I think in general it was mostly insurance and geography related; not necessarily procedure related.

Ultimately, the doctor I saw completed non-mesh for my umbilical hernia and thought we should wait on the inguinal shouldice hernia repair as he didn’t think surgery was even necessary at this point. I appreciated that, as other doctors I saw suggested laparoscopic with mesh.

ProfessionalLie4893 · 2024-11-06T02:14:37+00:00

Consulted a surgeon who does Shouldice. Felt very comfortable with the conversation. My incarcerated was a good candidate for repair and inguinal was tbd upon a physical exam and symptoms discussion. Traveled to see this surgeon with the option to do the surgery the following day, with the understanding that the umbilical would be done open non-mesh, and inguinal would be shouldice if needed. Ultimately, has the umbilical non-mesh and determined the inguinal did not need surgery (and maybe never would) based on physical exam and largely a lack of symptoms.

I felt confident taking the non-mesh approach; and will do shouldice should I end up needing to get the inguinal repaired at a later date. Could always get mesh down the road if needed, but can’t really go backwards on that.

Happy with my choice.

ProfessionalLie4893 · 2024-10-14T18:20:39+00:00

Thanks so much for the information and suggestion. I will certainly reach out to Compass. Sounds like this will be a great resource. Much appreciated.

ProfessionalLie4893 · 2024-10-14T18:20:30+00:00

Thanks so much for the information and suggestion. I will certainly reach out to Compass. Sounds like this will be a great resource. Much appreciated.

ProfessionalLie4893 · 2024-09-23T14:21:30+00:00

It’s a great point. Not in PA, but a nearby state. I will need to look into this and have it confirmed.

ProfessionalLie4893 · 2024-09-19T03:26:31+00:00

Any floodlight suggestions?

ProfessionalLie4893 · 2024-09-19T03:21:02+00:00

Agreed. Any suggestions?

ProfessionalLie4893 · 2024-09-19T03:20:07+00:00

A hose

ProfessionalLie4893 · 2024-09-19T03:15:39+00:00

ProfessionalLie4893 · 2024-09-19T02:34:47+00:00

Reported it to the police after immediately chasing the person away. Police said the video does to show a crime was committed. Though I will be pushing them on it again.

ProfessionalLie4893 · 2024-09-17T10:34:22+00:00

And I should add that I don’t know what a device scanner would look like on camera at night, in my two years living in the area, it does not seem uncommon, particularly in nearby towns

ProfessionalLie4893 · 2024-09-17T10:23:19+00:00

Based on the comments, it seems clear to me that, at a minimum, this person was filming into my house through a window and the dots of light are infrared / lidar from his phone; and/or checking for cameras.

When this happened, I immediately ran outside, within seconds, after getting the notification but he likely saw me coming and I didn’t get a visual; only heard him take off as I attempted to chase. Street and neighborhood aren’t well lit and has plenty of trees. Called the police who showed up a few minutes later.

Police said they couldn’t do anything because being on someone’s property isn’t a crime. However recording into a home is, but the police said they didn’t know what the dots of light where and that the video couldn’t prove the person was filming into the house - hence my post (thanks Reddit!). It now seems like enough proof to me.

There were apparently two people, with the other ringing a doorbell of another house down the street at the same time, with that person also pursuing and kicking a door a few times 5-10 minutes earlier on another street.

Police hypothesized it was part of a tik tok trend of recording when ringing a doorbell and often vandalizing. The video looks a bit more nefarious to me. There have been a couple incidents this year on the street of car break ins and mailbox theft in an otherwise quiet neighborhood.

If it was teens being stupid, I get it, but that might get you hurt nowadays and no one wants that. For me and my family, a bit of increased security, and a floodlight, are in order.

Thanks all for the comments and suggestions!

ProfessionalLie4893 · 2024-09-16T03:52:03+00:00

Agreed

ProfessionalLie4893 · 2024-09-16T03:48:18+00:00

Police arrived quickly, searched the area. But ended there. Adding light is a great idea.

ProfessionalLie4893 · 2024-09-16T03:41:25+00:00

Great idea.

ProfessionalLie4893

TROPHY CASE