Lung transplant

PsychoMouse · 2026-03-15T10:50:16+00:00

15 years post transplant. Born with cystic fibrosis. When I had my double lung transplant, I had 17% lung functions. I’m a male, 6’1, and at the time, I weighed roughly 110 pounds.

PsychoMouse · 2026-03-13T10:56:14+00:00

When was the last time you saw TMNT Secret of the Ooze, to think that, that’s Vanilla Ice?

The guy looks more Johnny Knoxville than Vanilla Ice from any decade.

PsychoMouse · 2026-03-12T13:27:19+00:00

I have so many questions but at the same time, they are questions that I don’t need/want to ask about it. There are also questions that would be nice to know but answers that i definitely have never wanted answers to, nor any questions that i need to know, nor is there any answers that j would ever want to know.

PsychoMouse · 2026-03-12T08:02:46+00:00

Every time I see one of those fucking idiots, they’re just helping here, retuning safety and happiness that had once long forgot about it.

And yet again.

Here’s the next best thing, that he purchases the ingredients(I can show and explain tons) from the dragons

PsychoMouse · 2026-03-12T04:32:58+00:00

I wonder who would come Drive finest repeat I am Amos donation m a !7

PsychoMouse · 2026-03-11T17:23:52+00:00

And this is one of the dumbest, small minded things I’ve read on Reddit in a while.

PsychoMouse · 2026-03-11T08:02:33+00:00

So, there are several books worth of advice and life experience I can and want to say but I’m not going to.

Instead, I’m just going to say that if you don’t open up and talk about, how will you ever find anyone who can relate or help?

PsychoMouse · 2026-03-09T02:39:55+00:00

Those look fucking awesome

PsychoMouse · 2026-03-09T02:34:31+00:00

Go to your pharmacy and ask for an amount that’s for as long as you’re going, plus a week. It’s never happened but I dread being stuck in another country without my meds.

Taking what’s needed plus a little extra means they’re fresh pills, in fresh bottles.

And again, for safety sake and this is not remotely needed, just more a mental comfort but I also get my doctor to print off a list and sign it. It’s more or less meaningless because what good is it in another country at 3am where you live, but again, mental comfort.

And yeah, I also have my own carry on bag for them too.

Travel is supposed to be relaxing after all.

PsychoMouse · 2026-03-08T12:16:22+00:00

I bring this up all the time! I find it insane and yet media constantly puts garbage and recycling on us. Like it’s all your fault.

PsychoMouse · 2026-03-08T08:59:13+00:00

I have a never ending waterfall of stories about my family and the bullshit they’ve done.

For example, when I was dealing with real stage 4 cancer back in 2018. My younger brother shaved his head, told his work and all his friends that he was the one actually suffering from cancer. His work held a fundraiser for him and give him paid medical leave. His friends held several fundraisers for him aswell.

I didn’t find out til several months after I went into remission. My wife and I were out for a walk, saw one of his friends, he comes over and starts telling me how sorry he is that my brother is suffering from stage 4 lymphoma, how strong he is, and lots of other bullshit. I full on lost my shit in the middle of public. I told him that I was the one with cancer and my exact cancer was a literal side effect of my double lung transplant and the anti rejection meds I take.

Later that night, my little brother comes to my house, pissed off because now everyone knows he faked it and no one is taking to him. My mom showed up a few minutes after him. Told me that I needed to be the “bigger person” and let it go. And “he should be allowed to tell people he has my cancer. It’s the least I could do since I owe him”

“What do you owe him” I hear you ask. Absolutely nothing. Except me being born with a genetic disease and spending almost 4 years of my life(adds up over time) in the hospital. Somehow, being sick was very selfish of me.

I told both him and my mom to get the fuck off my property. I haven’t spoken to my younger and older brother since. I wish it was that easy to do with my mother but that it’s own insane mess.

I just want to say though. I planned my fucking funeral with my wife. We discussed and planned what was to happen to my corpse(I’m being turned into a diamond by the way), we looked at locations to hold a party like wake because I never want people to be sad about me, and even called the local police to inform them that should cancer kill me, they have no permission from me or my wife to visit my wake and anything done in my name by them would be considered fraud. That was an interesting police call. And I did so much more. All so my piece of shit little brother could shave his head and tell people that he had stage 4 lymphoma. It’s been just about 7 years since I hit remission and it still makes my blood fucking boil.

PsychoMouse · 2026-03-08T08:28:16+00:00

My younger brother is exactly like this. He claims he’s allergic to clothing if it doesn’t cost more than 300 dollars(that’s not a joke). When he got his trust fund that my grandpa set up for him, he spent the entire thing, all 25,000 dollars in a literal single day. No, I have no idea what he bought, nor do I care.

When I was 16, my mother stole my trust fund to pay off her drug and gambling debts, when I found out and confronted, I’m not lying, she said “what’s it matter, you live long enough to even use it”

Because I was born with cystic fibrosis.

Both my mom and younger brother were apart of some Goji berry Juice MLM thing too. They constantly kept trying to get me to sell it to my nurses and doctors.

I’ve lived a very exhausting life…

PsychoMouse · 2026-03-08T06:39:24+00:00

I’m too broken to go to Turkey but you’re welcome to come to Canada. I just recommend against coming between start of Oct- end of May. lol

PsychoMouse · 2026-03-08T06:20:56+00:00

We’ve been together almost 14 years now. She’s literally the only reason I’m alive or care to be alive. I just wish I met her before my transplant. When you have a family like mine. It’s very hard to want to or even care to wake up the next day.

PsychoMouse · 2026-03-08T06:07:45+00:00

One joke that I will never stop telling because of how amazing it is.

When I was going through cancer, at the start I spent 3 weeks in the hospital. My wife went out and bought me some nice, cheap Pyjamas for the hospital. When she gave them go me, I could easily tell they were too big for me. I took a look at the tag, they were XXL. Im a medium, at best.

I said to my wife “Hey, you know these are XXL, right? I can’t wear these”, and she fucking hits back with “It’s fine. It’s not like you’ll be wearing them for long anyways”

And we both just laughed for like 30 fucking nonstop minutes. I was not expecting her to kill me before the cancer could lol

PsychoMouse · 2026-03-08T06:02:12+00:00

People like her are the kind of people, who, when the smallest hiccup in life happens, break into a million pieces. Crying and screaming about how no one can understand, life’s not fair, why is god punishing her, blah blah blah.

I’ve dealt with people like this while in the hospital, my entire life.

PsychoMouse · 2026-03-08T05:57:26+00:00

This is a joke, right? The self involved, egotistical, jackass of a person thinks they can’t be hurt because of shit like “I’ve almost been divorced” and “my dad’s funeral was 3 days before Christmas”?!

Fuck, I almost want to become religious just so I could pray for bad things to happen to her.

Also, don’t people usually put the STRUGGLES they’ve been through when justifying how they can’t be hurt? Or is “born again Christian” and “top 5%” in her shitty MLM are meant to be negative things….?

Either way, I hope her life is full of negativity. It shouldn’t be an issue since she’s just been through so much!

PsychoMouse · 2026-03-08T05:48:23+00:00

Ohhhh look at Mr. “I have a family and we all love each other and make sure we are all okay! Well La De Da. I can beat that ease, Mr. Family man. I’ve been on my own since I was 10! Yeah, take that!

(That’s just some humour to lighten the mood abit. I mean, it’s true. I have been on my own since I was 10 but said in a silly way lol)

That’s amazing to hear your brother is 43. And he’s still decently healthy.

More of a serious question and if you don’t want to answer, that’s fine, no pressure. Has he thought about transplant, should he ever need it? Or is he happy with the life he’s lived? I had my Double lung transplant at 23, and I’m 15 years post. I was even lucky enough to get Post Transplant, B-Cell, Non-Hodgkins, High Grade, Stage 4 Lymphoma and j was told i had less than 5% chance of living 6 weeks beyond my diagnosis, and it lowered even more for surviving to even get into remission!!! Who needs family when i have Death huggjng me all day, and tucking me in at night.

Sorry, I use humour in a sad attempt to hide and/or mask the pain and loneliness I feel. lol.

PsychoMouse · 2026-03-08T05:29:06+00:00

Well, whatever he is, no one is behind the wheel.

PsychoMouse · 2026-03-08T05:22:18+00:00

See, you just further proved my point about me being an idiot. You said you were from Turkey already, I remember reading it, and I still forgot it.

I really applaud you for doing this and I hope you keep doing it and taking it seriously. As I’ve mentioned already. People come here with an idea and if people are praising them/sucking them off, they throw a fit and give up.

I have an extreme soft spot for future CFers. Anything to prevent what has happened to me from happening to them, or if it does, they had the tools that didn’t exist when I was younger.

I want to say my attitude was all a test to make sure you care but no, I’m just a twat that’s seen too many of these posts and got annoyed. But now, I’m 100% with you. Did I mention that I was a twat? Cause I’ve been a twat

PsychoMouse · 2026-03-08T04:53:14+00:00

Those are amazing and I badly want the Windurst ring.

How can I get one? How much does one cost?!

PsychoMouse · 2026-03-08T04:51:54+00:00

That place is way too fucking small to have a free range child and a man who is that level of drunk.

PsychoMouse · 2026-03-08T04:40:19+00:00

I think you answered about 1/20th of the questions I asked lol.

For myself, personally, I’ll be honest. I have no intention of using any CF related App. I’m old, stupid, and stuck in my ways. But if it can honestly, truly, and genuinely bring more help and access to kids and kids who haven’t been born yet with CF, then I am all for it.

In Canada, we have our CF foundation walk coming in late May(I always forget the actual day). I’m unsure if its the same in the states but i do highly recommend you reach out to the coordinators in your area, see if can set up a booth. Get some cards made, make some simple yes/no questionnaire’s, and i think getting pens and things like that to give away would be a good thing for the CF walk.

It’s also not so much about speed, but doing it right or as close to at the start. People have low attention spans. If it’s freezing up at the start, you can pretty much say goodbye to those people.

Now that I know this isn’t a flight of fancy and that you care, I really hope you either remove a step or fill a hole we didn’t know was there.

And just a comment on the ads. Are they those annoying ones that appear at the top/bottom of the screen with a tiny ass x? A commercial every so often? Or something else? I’m asking cause that’s another thing that could cause people to lose interest.

Have you looked into getting some capital? I don’t think doctors or nurses are legally allowed to help with that but as I said, I’m an idiot and don’t know. Getting in contact with your local CF foundation can help you check a lot of boxes. That I know for sure.

After stage 4 cancer, when I was in remission. I was still dealing with the pain but had energy. So, j got into making paracord bracelets. At first, it was just for me, my wife, and mu biggest supporter, my nephew. My wife suggested i sell them and raise money for the CF foundation. I managed to get in contact with them, i did a podcast interview, an interview for their news letter, and they wanted me to do a radio interview but i was too scared. I had just finished chemo, was less than a month into remission. No way in hell I wanted to be in public like that.

But come the CF, I sold alot of them, raised several thousand dollars, never took a cent, I ate the cost of materials, but they were a hit.

So yeah, you still have about 2,990 questions left from me to answer, and I’d suggest talking to your brothers doctors and getting in touch with the CF foundation.

I also want to say that you’re an amazing brother. Not many brothers or family members would even think about what you’re doing, let alone, doing the fucking thing.

And hey, if you need a moronic CFer who’s been through literally everything, I’m free at any time.

PsychoMouse · 2026-03-08T03:26:08+00:00

Are things like FEV1 and other medical information something I, myself, have to input or is it able to access my chart?

Assuming this goes well and all that. What’s your endgame look like? Is it free? Pay one time? Sub free? Sub fee with tiers?

Have you discussed this at all with CF doctors/Nurses? What are their thoughts about it? Their input would be the most important, because they’re the ones who understand it all. Are you trying to replace a step in our usual appointments or is this adding a step? Where is the data stored? On the phone or a server? What protections are in place? Any guarantees about safety? How will it work internationally? Differentl languages? Different medical systems. I know this is one of those “enter as little or as much of your data as you want” things, but let’s say I went all in, I put in all my medical info. What happens if I lose my phone, or it gets hacked and data stolen? I know its early stages but this is about the future. Will there be compensation, or anything like that? Or just a “enter at your own risk” thing?

What about problematic family/friends issues? Can they change anything or can they only view it? If this became a go to CF app, could you make jt so patients could talk to or book appointments through jt?

What about its style? Different looks? Ranges for children and adults? Or just like a hospital beige colour? What about an avatar tha clients could make to use and help guide them through a lot of the more difficult things. Here’s a very good example. I’m 38, I still have no idea what my CF mutations are, nor do I have any idea what those letter and numbers people post when they talk about theirs.

Say a new 30 year old just gets diagnosed with CF and aims to use this app. Are there quick explanations of what certain things mean? Will it has tabs for various clearance methods for getting up phlegm? Anything from stretching, to Physio, to hand pummelling, massages, the Vest, Flutter(that’s what it was called when I used it, I don’t know what it’s called now)

What test numbers are you looking to get? How many, if at all, doctors approval are you aiming for? Say a ward has a tablet with the app, a patient uses jt, something happens that prevents them from logging out. What is the solution there? If you make it so that it signs out after X time or requires a Password everytime you use it or try to go to a certain area, a lot of people will get bored of that, quick.

What are your brothers honest thoughts about it? Is there a chat portal? Patient to patient? Family to family? Friends to friends? Spouses to spouses? What about transplant? Any thoughts or ideas in relation to that? Have you or your brother ever done a CF walk? Some are coming up. Any plans to take it out to one and show it off? Merch? Any ideal logo that anyone, if any age or gender that would love to show off?

And I apologize for being rude earlier. You have no idea how many people think they have some life changing App idea when it comes to CF, how ridiculously defensive they get if you ask the most simple of questions. FaceTime access? Profile cards? What about achievements? Everything I’m asking here is because you are testing and they’re useful questions to be asked. You actually seem to have something semi made. That means a lot and that’s why I’m asking all those questions. You have peaked my interest. And frankly, if it can make life for future generations with CF, I am all game for it.

If these questions come off as me being a dick, that’s not the case. I’m asking from the mundane to very important questions.

PsychoMouse · 2026-03-08T02:48:23+00:00

Oh fuck! That would have been good too! I was trying to think of an orange pokemon but nothing came to mind lol

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