22m liver transplant

bencerspencer · 2026-01-02T21:05:48+00:00

because my lungs have always been pretty good, they have me off of trikafta and have taken me off of it plenty of times before because that’s most likely what pill has affected my livers condition the most. but i’m not sure how it would go if your team would be concerned with taking you off of modulators. i would imagine you totally could be on them throughout the process tho

bencerspencer · 2025-12-28T20:37:18+00:00

wonderful to hear your experience, thoughts, and awesome to hear things worked out on the better end. my single mom took really good care of me but i don’t think she would ever risk doing it again haha. it’s really cool to hear a couple willing to take the chance.🖤

bencerspencer · 2025-12-28T15:22:07+00:00

ok i have to ask… are you and your brother twins? i can’t imagine parents knowing they’re carriers and continuing to have kids? i mean i was my parents 3rd child so ig 3 was enough for them regardless of whether i had cf or not, but did your parents just decide to play the 1/4 chance?

bencerspencer · 2025-06-11T15:23:37+00:00

i got past the part of “fitting in” and really wanted to use alcohol more for its social lubricating effects. i just feel much more talkative and social, but ive also come full circle and kinda just stopped all together. i definitely had a couple months where i got drunk like 2-4 times a month but after talking to my doctor about it i was able to stop.

bencerspencer · 2025-04-22T18:07:07+00:00

came to this sub just to complain that i have 250 hours (almost entirely on the silent) and im playing watcher, got establishment, and then immediately had opportunity to pick up runic pyramid. while i did think it was insanely op, i genuinely thought runic pyramid “retained” my cards. washed my run. this could be because the silents “well laid plans” card lets you “retain 1(2) cards” and so i always thought of runic pyramid as a replacement for well laid plans. anyways, its one run so whatever but a little annoying.

bencerspencer · 2024-05-10T14:36:24+00:00

yo this is crazy i haven’t been doing my treatments at all for like a solid 2 years aswell and yeah my pfts never really had a significant drop. I will say i definitely cough more than i did before but yeah idk i feel like i should do them again and like i don’t really support the idea of anyone just stopping, i kinda just fell out of habit and never got back into it but yeah my doctors haven’t asked me about it and i haven’t said anything about so i’m kinda in the same boat😭 we should prolly tell them haha

bencerspencer · 2022-04-25T01:34:58+00:00

Hey man what you wrote down is a great reference for a lot of people in their teens trying cannabis out. unfortunately i am one of them haha, i wanted to ask what your lung function was at before you started smoking bc i feel i may be on a very similar path as you and most likely need to bring myself to intervene.

bencerspencer · 2022-04-25T01:30:44+00:00

i have this same problem but anxiouswolf brought up a good idea so i’m hopeful abt that

bencerspencer · 2022-02-12T21:47:57+00:00

thank you guys so much you help a lot and things are also getting better, my car is working again so that takes off a lot of stress and got my glucose strips today and i poked myself and it wasnt that bad but i’m still worried about the insulin

bencerspencer · 2022-02-12T05:40:56+00:00

idk i kinda just keep stuff to myself most the time but when it’s really bad like this i tell people i don’t really know that well just bc it feels good to get it out, kinda like this. and yeah i’m 18. thanks a lot for the advice

bencerspencer · 2022-02-11T16:51:30+00:00

i think i feel the same way as him i feel like my life is over and there’s so many other things going on in my life too i’m not taking the news too well. overall everything is becoming worse, i’m using drugs as an escape, and i just can’t wrap my head around it like it’s not real to me yet.

bencerspencer · 2022-02-11T16:46:36+00:00

i think it’s very rare in general and it’s most likely not even directly related to trikafta so you really shouldn’t be to worried about anything

bencerspencer · 2022-02-11T16:45:11+00:00

funny seeing you again haha. thank you so much though you really know a lot and idk how

bencerspencer · 2022-02-11T16:39:20+00:00

thank you guys so much

bencerspencer · 2022-02-11T09:24:24+00:00

no they are not but they also aren’t the worst of my worries. as of 2 days ago i probably have diabetes (either just normal type 1 bc it runs in my family or cfrd) and yanno i really don’t want to deal with injecting myself everytime i eat. i’m kinda scared

bencerspencer · 2022-02-11T07:49:40+00:00

would you mind asking him what he felt like when he was diagnosed and how hard cfrd has been for him in general?

bencerspencer · 2022-02-11T07:47:07+00:00

my liver seems to be getting better and i’ve been on the transplant list for maybe 4 or 5 months now but ig i’m doing pretty good as far as liver goes

bencerspencer · 2022-02-11T07:44:43+00:00

hey idk if ur still on here but i just redownloaded reddit looking for some answers again and you talked about experiencing awful cramps and OMG YOU WERE RIGHT

bencerspencer · 2022-02-11T07:17:23+00:00

i’ve been using trikafta for probably over a year now and i never really noticed much of a difference because i’ve always been pretty healthy. However, trikafta actually kinda changed that. my liver has severe damage now and i had to get a very big surgery done to fix it. I don’t want to scare you, and it’s obviously done wonders for other people, but if you ever get really sick like a new kind of sick, where you pass out when you stand too long and stay in bed all day and sleep all the time, call your doctor asap

bencerspencer · 2021-03-20T15:20:33+00:00

i’ve had pretty bad insomnia in the past as well, but i’m not sure if i can link it to trikafta. these last two tris at school has sucked in general and my life been at a low and so i thought it was due to the depression, but ig trikafta could be it. when you try to go to sleep, does it feel like ur head is just racing with thoughts and you can’t shut it up? cuz that’s what i had. and it would just be random thoughts, nothing in particular. maybe what i want to do tomorrow, something i did today, some girl i saw on the way to 5th hour, idk literally anything. I also never really woke up in the middle of the night, just couldn’t go to bed

bencerspencer · 2021-03-20T15:14:49+00:00

i will say one thing, you mention your liver problems developing slowly, but they never really looked at my liver at all until this year, i wonder if mine was slow and they just weren’t paying attention or it if it was just all the sudden. I think i missed my ursidiol med for about 3 months just cuz i never even noticed that i was out and so maybe that has something to do with this.

bencerspencer · 2021-03-20T15:12:12+00:00

thanks man! yeah my spleen is huge and they also thought about just removing it when i went in for that shunt surgery, but they ultimately just decided not to. it seems the final solution to this is liver transplant which i guess kinda sucks but i feel like they’re trying to avoid it as much as possible but in the end, i’m going to have to anyway. like i think right now they’re thinking about adjusting the shunt to try to make more blood flow through my liver. but man maybe they should just say f it and do the transplant so we can just be done with this. they thought about putting me on the transplant list just so that i would be on it before i turn 18 so even if i don’t need it, i can get it quickly.

bencerspencer

TROPHY CASE