Hey Guys! Like I said in my rather long title (sorry for that) I am a 23 year old male who was born with Cystic Fibrosis, Had a Double lung transplant in 2003(rejection in 06' led to a drop to 15% lung capacity), Had and beat bowel cancer in 2005 and currently have bronchiolitis obliterans syndrome. This has been a long life so far of alot of time in hospital, IV antibiotics, physiotherapy and many other things. I also have been left with %13 Lung Capacity since a few years ago also now wear oxygen 24/7 and sleep with a ventilator....... But regardless of all that I am SUPER happy alot of the time and with my life, I have a great family and friends and I LOVE (trying to) be funny and making people laugh and I hope if you get this far along reading this (even with my terrible grammer) that I can help some people if they are struggling to find happiness or inpiration or even friendship! Whatever! So again if you got this far in reading, Thank you and AMA! =D PROOF!

EDIT: Fun assortment of my AM and PM Medication

Comments: 105 • Responses: 49  • Date: 

LeWelshie27 karma

You remind me of my brother, same fight and determination

Despite his cf he gained a photography degree and spent the last 10 years out in the slums of India, Africa, having shows in new York...he even managed to get married....last year he took a trip to Africa that he didn't return from, he had just turned 30

Keep living life to the full and just maybe we'll be able to beat this horrific disease together, soon <3

Rockaholic7714 karma

See THAT is an inspiring story. I'm terribly sorry for him passing but with his CF he seemed to of led and incredible life and I take alot of inspiration from that! =D Thanks so much for sharing this =]

amongstheliving2 karma

Does he have a website?

Rockaholic771 karma

They are some amazing pictures

Thanks for posting =D

Catish7510 karma

What are your plans for the future?

Rockaholic7728 karma

Well as you might expect my life expectancy isn't really above 5 years at the moment so I'm not planning anything long term lol. But basically I am just enjoying everything I can right now like seeing my friends, playing guitar and other hobbies. Just living my life to its maximum happiness potential! And mainly at the moment focusing on being healthy for 27th of May.... Its my Sister's Wedding! Thanks for the question!

DaNinjaKitten10 karma

[deleted]

Rockaholic7710 karma

HA! Well thanks bro! I just hope I can show/help people to find happiness in ANY situation =]

Catish755 karma

You have a great attitude! Enjoying yourself and being with the people you love sounds like the perfect plan! Have fun at the wedding :)

Rockaholic774 karma

Aww thanks alot! Yeah my family is AwesomeSauce!

1dontpanic7 karma

How much has all of the treatment cost?

Rockaholic7712 karma

I live in the UK and thankfully the NHS is so amazing! I am fully insured so it didn't cost us anything. I lived in Florida for 6 months in 06' and One box of my Anti Rejection drugs that I have to refill every 4 weeks cost us $500!!! So it wasn't possible to get insured in the US for me so I moved back to the UK =] Thanks for the Question!!

DaNinjaKitten7 karma

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Rockaholic777 karma

Hey! aww Thanks very much, Yeah it's been a crazy ride so far! lol Oh no not at all. Just like anyone I totally had my "why me?" Times and "It's not fair" but I dunno I don't think I've ever felt like giving up. Yeah though I suppose my most angry/Upset time was right before my Transplant from 10 to 12 Years old because at that stage of my C.F. I was just living in Hospital all the time and that is an important age to be outside with your friends and running around and I was just in hospital all the time and could never do anything. Even then though my friends would come and visit me and stuff so that was so amazing!

And bronchiolitis obliterans syndrome came with my Lung Transplant and basically its a form of rejection (My body rejection the foreign lungs thinking they are a virus or something) and its a syndrome that slowly over time closes all the little airways in my lungs. =] Thanks for the question again =]

zowhat6 karma

my rather long title (sorry for that)

Yeah, could you have less diseases so we don't have to waste our precious time reading long titles like that? On top of that I had to google "bronchiolitis obliterans syndrome". Have some consideration for others, guy.

Also, how do you explain you are super happy when so many others with 1% of your problems are so unhappy?

Rockaholic779 karma

Not sure if serious or comical genius insert Fry meme here Well you deff made me laugh. Sorry Umm B.O.S is just a form of my body rejecting my transplanted lungs and slowly closing all the little airways them =]

Also, Yeah I do feel for those people and dont get me wrong I have been very sad in the past but I suppose I have come to a sense that.... Life is just TOO short. I mean I have sort of accepted if something is gonna end my life FINE! but why be sad and depressed leading to that point, Why not enjoy EVERY DAMN SECOND! Have the BEST time of your life. Look at all the great things you have..... For example I don't have to work now lol, I get to sit at home, Play on my PC, guitar, PS3 or whatever, Go out to the movies, See my friends whatever you know!...... To be honest I LOVE just sitting at home watching Netflix hours on end haha.... So i've rambled on kind of alot but I THINK I'm just trying to say you can find positives ANYWHERE and just try focusing the best you can on them =]

zowhat3 karma

comical genius :)

Rockaholic774 karma

Haha I like your style ;)

SaltyBabe1 karma

Are they not even considering a second transplant for you?

Rockaholic771 karma

Yeah they don't advise it..... Very high risk I believe they said. Like your name btw None CF's won't get it but I like it =D

SaltyBabe6 karma

I see in you that you're coping. This, happy end of life defense mechanism that we all get. I've recently started my attempt to get on the transplant list for new lungs, I hover around 20% lung function now. I couldn't do it anymore, the "Hey I'm happy! Look at the bright side!" thing... I think we often worry too much about others, making them upset or uncomfortable causing us to struggle alone and hide our troubles and problems. Sometimes I wonder if I'm depressed, then I remember all the shit I have to deal with and realize I'm less depressed than anyone else I know would be with these problems because I've had a life time learning to deal with it.

What was your surgery like? How did you feel afterward as far as lung function? What was your highest lung function post transplant? Was your cancer caused by all your anti-rejection medications? How long did you wait after you were put on the list before you got your transplant? What was the testing like pre-transplant in the UK? Do you or did you ever have a g-tube?

If you want to follow me on twitter as I try to get my lung transplant you can find me @Xplant_Journey

Rockaholic776 karma

Hey! Yeah I think the happiness thing is when your life is shorted to the extent of mine is and you know it and going through alot of my life being sad about my illness you realise.... Whats the point lol You know? Whats the fucking point..... I'd rather enjoy anything I can and joke around and be a goof then sit there thinking how I'm going to die or how long I have left.

Surgery was kind of scary. I mean its most likely going to be the biggest operation of your life. But it WILL be worth it.

After my Transplant it's a very weird feeling. Personally I felt that I kept forgetting to breathe, Like it wasn't an automatic function anymore but I got used to it again within a few hours. The Dr said it was just my brain getting used to all the extra lung capacity going from %15 to %100 requires very different breathing cycles.

After the surgery obviously its not %100 straight away, you have to build up to that point but the highest I got upto was like %120 or something like that.

The cancer was caused my some very intense antibiotics I had to be on Pre transplant. (Even the nurse that gave them to me had to wear this sort of huge plastic mask that looked like a riot shield mask lol)

The wait was for about two years or two and a half something like that.

The pre testing wasn't too different from my normal check ups I used to do. If I remember correctly it consisted of Arriving then Blood tests, Lung Function, X-Ray and then a chat with the Dr. There were some other one off things like meeting with the Shrink or some other one off CAT Scan but that's all I can really remember.

And ohhh yeah you bet ya!! Totally had a gastrostomy lol hated that thing. Worst feeling ever is waking up in the middle of the night in a puddle of Vanilla ensure + lol. Luckily this was all Pre Transplant. Post Transplant I had an amazing apitite.

I would just say the years after my Transplant and before my rejection where the BEST of my life. Just being able to run and ride my bike and just join in with my friends and family. Its literally like heaven. I was the closest I will ever be to what I always wanted. To fit in =D

Thanks for your questions bro. I'll Follow you on twitter =] Good luck with The Transplant too man..... Get Excited!! =D

SaltyBabe1 karma

The amount of testing I have to do is WAY more than that, it's been quite... Hard on me. I don't want to complain because it means I will have the best results possible but it's rough. On the 9th I have to get a right heart catheterization, nervous about that one. My last few appointments were obsessing over any acid reflux and testing for that... Not great, the 24 hour swallow test was extremely uncomfortable. Do you know what antibiotic you were given and why? That sounds like borderline malpractice, at least in the US.

Rockaholic771 karma

Yeah I believe I also had to do more tests then I stated they were just ones that I could remember off the top of my head. Oh god yeah I had the same acid reflux this where my oesophagus was too straight so I had to have an OP to put that kink in it everyone else has naturally. That 24Hr testing period was the worse. I HATE having things down my nose =S and everytime I swallowed it would pull on it. Still sends cringey shivers down my spine. But it was for the best and I felt better after. Was just abit hard to eat as fast as I used to after that OP for obvious reasons =] Hope alls going good with you though and remember it is all for the best in the long run.

Thanks for sharing dude! =]

rexnax6 karma

Just wanted to say that I've been on the family side of a similiar situation. My father was extremly sick his whole life with so many different kinds of llnesses that I couldn't even name them all even if I wanted to. He was in and out of the hospital all the time and we recieved too many phone calls to count that this will most likely be the day and we should be prepared. They were right in the end as he died two years ago but the time between that first phone call and his death was 20 years. My father was the most willful person I have ever known... he just wouldn't die... I'm sad that I'm soon the only person that knows about his struggle and his victories but I'm glad of what he taught me.

I think that with your attitude, there might still be suprises ahead. Never surrender.

Rockaholic771 karma

Well I'm really sorry to hear that about your Dad, He sounds like an incredible dude and he is SUPER lucky to have you there by his side and I know that helped him through it! Thanks very much for sharing and effeminately, I'll never give in! =D

Timbits7085 karma

My buddy had his SECOND double lung transplant last year...both of them were within 8 months of each other. He hasn't experienced any rejection since the second one and is able to do the things he used to enjoy like golfing, working out and fishing. He has even started to speak at churches. It's pretty amazing. I respect the shit out of you guys that have to battle CF

miles373 karma

If only you could respect the mucous out of them.

P.S. Said with a kind heart, taking the O.P. on his words that he is a humorous guy.

Rockaholic775 karma

You SOB! GET OUT! Lol just kidding. This made me laugh loads Thanks for checking out my AMA =]

Rockaholic772 karma

Wow!!! Thats Awesome!!! Yeah I totally best he is enjoying the shit out of those things! Thats sucha good thing to hear. Just make sure he stays on point with his Anti Rejection tablets. So glad that he got a second chance after the First set didnt go so well. Well you make sure he lives up to his full potential for me =] Best wishes to you and Your Friend=]

sonia72quebec5 karma

Could you have another lung transplant ?

Rockaholic774 karma

We have asked the Doctors about this option but they don't recommend it since my body has physically been through so much already they don't think It would make it through an intensive 8+ hours procedure. Also if I went on the list for a Transplant again I wouldn't be first priority like my first on because I have already had one so who knows how long the wait would be=] Thanks for your question!

artelope2 karma

Can you hook up to an ECMO machine and continue living until science advances enough to grow you your own lungs from your own cells? That's probably not that far away actually, certainly before the end of your lifetime I figure people will have a go at it. I mean many people live quad and paraplegic lives pretty well, I'd assume you'd probably end up home bound but alive?

Rockaholic772 karma

Yeah I am sure with the right people talked to and some money paid here and there I could be hooked up to an ECMO if my life got to that point where I couldn't function with my current lungs myself anymore and then wait for science...... But I think if I got to that point where I'd have to be bed bound and hooked upto a machine 24/7 and not 100% Concious, I would want to pass on naturally..... I mean I've always said to my parents that if I can't enjoy my life anymore and there is no light at the end of the tunnel I'd just want to pass on. But again depends on the circumstances right there and then at that time. Maybe your plan is a valid one and I'd be very excited to see advances in the Stem Cell research blossom =]

Thanks for the question =D

baddozer4 karma

What's your favorite food?

Rockaholic778 karma

Ohh great question! I love food! ummm Well I love a Roast chicken Dinner and... spaghetti bolognese and Chilli con Carne Oh and Sandwiches! Gotta love them sandwiches! Oh and SUBWAY! shit sorry I feel like I'm writing a shopping list lol Thanks for the question =]

sflancer064 karma

Hey /r/Rockaholic77,

That's an awfully tough lot. My father was one of 7 children, all boys, the two youngest of which both had CF. I never got to meet them, unfortunately, but I have a good idea of what you have to go through for it.

I don't have any questions for you, but try to experience as much as you can in what time you do have left. Travel the world if you can / it's not prohibitively expensive, and "always try the soup; you can get a caesar salad anywhere, but the soup is always different."

Rockaholic775 karma

Hey! This really made me smile! Thank you very much for the kind words and I totally intend to squeeze every bit of enjoyment, happy and fun I can get my hands on! Thanks again for the advice. You are awesome! =D

wotow3 karma

Xrays or it didnt happen. Honestly though, good on you for keeping that positive attidude. CF is a real beast.

Ps Seriously Post xrays!

Rockaholic772 karma

Made me laugh =P I'll do my best to try and find an X-Ray but the hospitals normally keep them! (I'll do my best, might not be tonight ) Thanks for the comment friend!

skellingtongrl933 karma

First I would like to say you have gorgeous eyes! And that you're an amazing man and a true fighter. What is the most exciting thing you've done?

Rockaholic771 karma

Haha well thanks! The picture doesn't show too well Rushed iPhone pic but I have light blue eyes Hmmm Awesome question. The most exciting thing.... Well I've had the chance to do a few Special days because of my illnesses with companies like "Make a Wish" and other like that. I think the one that sticks out for me the most is going to the Terminator 3 Premier in London. I had just received my Transplant like a few months before and Make a Wish Foundation contacted me and said they were going to grant me a wish. At the time (03': 12 Years old) I was a huge Arnold Schwarzenegger fan so I asked if I could meet him. They got back to us a few days later saying that they are going to hire me a limo to and from London to the Terminator 3 Premier. I was so excited! So long story short, everything went awesome, got a new suit (I love kick-ass suits, dunno why lol) Limo drove Me, my Dad and my best Friend at the time there, walked down the Red Carpet, sat down inside, Then when you sit down in a Premier before the credits roll the Director, some of the Cast and Crew come on the stage to say a few words. All of a sudden Arnie walks right passed my seat!!! (I was in the isle seat nearish to the back) Then he went up front said a few words then walked back to the back of the theatre and the credits started to roll....... But then I noticed he was standing right behind me!! Just like watching the opening credits or something, So I actually plucked up the courage to stand up while the movie was going, walk over to my Childhood Action Hero and ask for an autograph (I mean This is the fucking TERMINATOR! He killed Predator.He just wants a freaking TurboMan Doll!) haha anyway I walk over as quietly as I can and hold out my Autograph Book (I don't know why I had a book.... It was my first premier I didn't know what to expect, gimme a break! lol) and he says in his classic but whispering Arnie accent "NO NO, Go sit down!" So then when the Terminator whispers "Go sit down!" to you, you fucking go and sit your ass back down! Hahah So that was one memory that will always stick in my head and I think it makes a good story. Hopefully through my terrible spelling and grammer you can make out the story like I meant to tell it =] Thanks for asking! =]

skellingtongrl931 karma

Wow that's awesome. And did you eventually get his autograph?

Rockaholic771 karma

Haha No unfortunately not... Just a funny story =P

evangelinetepes2 karma

Hello! My sister also has cystic fibrosis. She is on her way with another child, which that would make 3 kids total. I'm really scared about her about to have her third because it is completely unheard of. I can imagine that she will want more kids after she gives birth to number 3. Is there anything I can say to her to convince her that she can't have any more? Also, have you ever heard of a cystic fibrosis mother living after giving birth to more than 2 kids?

Rockaholic771 karma

You're right having children with CF is rare. I mean I know I have been told I am unable to have children but honestly with your Sister..... I'd say let her be happy ya know? I mean I totally get that you are worried about her but you have to look at it as: I'm sure she's just trying to make the best out of her life possible. I don't really know too much about child birth but all you can do is be there for her and support her in times of need..... I'm sure she knows her limits and since she has 2 kids and another one on the way she seems unlikely to give up... So I'm sure she is an incredibly strong girl and will stride through it with a smile on her face =] Thanks for the comment, All the best with your sister and her baby =]

Am_I_A_Deer1 karma

sry, little late to the AMA, why can't you have children?

Rockaholic772 karma

CF basically kills all my sperm before its useful. I forget the technical things but my spermies just don't work lol. Thanks for the questions =]

DavidPuddy6661 karma

I thought the fertility issue with CF was congenital absence of the vas deferens (the tubes that connect your balls to your dick)...I could be wrong though.

Rockaholic771 karma

Uhh I'll be honest right now...... I have no idea lol. I was told when I was like 12 and at that age they don't really go into detail. I just haven't questioned it since. Sorry I'm abit useless with some things lol Thanks for the question though =]

DroMeadows2 karma

Do these illnesses run in your family? Sorry bro, stay strong.

Rockaholic773 karma

No they don't actually I'm the first to have CF =] Thanks for the question bro ! =D

rcowie2 karma

As a nut cancer survivor I salute you, I wish you well with you other ailments as well.

Rockaholic771 karma

Aww Wow Congrats on fighting these shit things with me bro! Hope alls well with you and I salute you right back =]

onceuponasaga1 karma

Do you feel that you have been given a second chance or do you feel like you have held on to the chance you already had?

Rockaholic771 karma

With my transplant it definitely felt like a second chance and tbh just thinking about it alot of my happiness is knowing that I might not of been here now if it wasn't for that chance 10 years ago.

Thanks for the question =]

lannaaax31 karma

What did you do to piss off the wizard who cursed you?

Rockaholic773 karma

LOL I did not let him pass..... =P

lannaaax31 karma

Any good man would have done the same, all these wizards getting free passes nowadays...

I'm glad you have a sense of humor about everything :)

Rockaholic771 karma

Haha I try =P Love making people laugh. XD

lannaaax31 karma

You succeeded!

Rockaholic771 karma

Ha! Win.

HomoMirificus1 karma

[deleted]

Rockaholic772 karma

Hey! I'm really sorry to hear this about your Dad, He sounds like an amazing guy and he's lucky to have you there for him, so stay strong! =]

So yes, unfortunately BOS is progressive but they will most likely put him on long term oral antibiotics (Mine are Azthromycin) to take with his normal pills from now on which will slow the BOS down significantly. It is obviously very different for everyone but for me it was still better then having my CF lungs. I mean I'm not sure what stage your Dad is at with his BOS but I was diagnosed with it in 2006 and lasted up until 2011 without having to wear oxygen and stuff. Even now that I have to wear oxygen 24/7 and a ventilator when I sleep I still enjoy so many things in life..... You'd be surprised at how many simple things can give you happiness if you stopped and imagined a life with nothing.

With the giving people a time frame..... again everyone is different and obviously any time frame they estimate is not set in stone.... They told me in 06 I probably wouldn't make another two years? So I mean don't ever keep those numbers in your head. I have had patches of depression here and there, obviously the initial shock of hearing I have something serious the natural reaction is to be down and depressed, BUt I just have a way to just get myself out of that state of mind and look at the things I still have and everyone that cares for me.

You sound like an amazing child to your Dad and honestly (again everyone is different and you know your Dad the best here) just make him comfortable, Don't act like he's in hospital just act like he is laying on the sofa at home watching some TV and being same old Dad =]. Try and keep that smile on his face, whether it's remembering good times or maybe talking about good stuff you guys can still do, Or you could bring in some good movies to watch. Just have some good chats with him and help him have a speedy recovery.

Hope your Dad is feeling better soon!

And yeah course you can PM me no problemo!

Hairy_Billiard_Ball1 karma

That sucks

Rockaholic771 karma

It has some perks =P

Ex_Astri1 karma

What keeps you going everyday?

Rockaholic772 karma

Red Bull...... Lol no Definitely Family and Friends =]

RedditFunnyHK292981 karma

Do they call you Mr. Glass?

Rockaholic772 karma

Haha thats totally gonna be my Super Hero name from now on =P

weredoomedbutohwell1 karma

Get that medical marijuanahahahahahhhhhhh. And beat that shit bro.

Rockaholic771 karma

Hahah I'll look into it Doc Thanks bro =]

katemate31 karma

No questions but I want to say you have inspired me so much! I am suffering from Chronic Abdominal pain and I can get in real dark despair. But seeing your story and attitude has lifted me out of my despair and inspired me to change my attitude, look on the positives and go to the park today! Thank you! You rock!

Rockaholic771 karma

Awww thats so amazing to hear I helped you =] Thanks so much for stopping by and reading through. Just never let the thought leave your head that "You are amazing and you can get through anything!" =] Good Luck with everything!

IdunnoO1 karma

I suffer from CF myself and I've always said I would have rather been given cancer or HIV than CF. Now that you've experienced cancer what would you have rather been given if you could choose between the two?

Rockaholic772 karma

Oh I would %100 have CF. I tell you the cancer I had in my bowel was HELL. It started off one afternoon coming home from school with a bad stomach ache, Had no dinner that night, Then my Mum knew something was really wrong when I was like crying with pain in my sleep that night! Being as familiar we were with the children's ward at the local hospital at the time they were just like yeah just bring him in. While there (still in absolutely the most pain ever) some doctors came to examine me real quick, Then before I knew it I was being Blue-Lighted to Great Ormand Street Hospital in London. When I was there they figured out by bowel had actually ruptured and was leaking inside of me. As you can imagine this is not good lol. I was on the emergency surgery list and basically they gave me a colostomy bag (I won't go into gross detail but you can google image search that see simply see what it is) and I had to have that for 3 month while they let my intestines heal themselves..... That was one of the worst 3 months of my life lol. Thanks for asking hope I didn't ramble on too much so you couldnt understand the story lol.. Good luck with your CF and things =]

IdunnoO1 karma

Wow that is interesting. I guess my perspective was that cancer is either treatable or it isn't where yeah you go through hell for a period of time but you either come out a survivor or you don't. With CF I feel like a ticking bomb battling constant infection after infection and it will ultimately end me. Thanks for sharing your experience, you're a true fighter man and I hope you defy the odds as much as possible.

Rockaholic771 karma

No worries man. Hope I helped in some way =] Thanks for talking =D

jingololo111 karma

[deleted]

Rockaholic772 karma

Thanks man Will do! =D

whiskeyknitting1 karma

One of my elementary school BFF's ha twins with CF. I understand your daily dealings fairly wdll.

That said, two questions: do you still have to take enzymes with your meals now that you have new lungs? does cf have roots in any ethnic background?

Good luck to you?

Rockaholic771 karma

Wow twins with CF! Thats sounds Rare! Yeah I still take enzymes, Mine are called Creon 10,000 and I take 4 tablets with every meal. See with a transplant we are only replacing the lung so everything Lung related CF-wise is gone but all the Gene stuff and kidney stuff is still there.

Oh good question I believe it IS known in other ethnic background but less common.

miles370 karma

Good day sir, I'm happy to have the opportunity to talk with you. I hope you will still take the time to answer my questions considering I am rather late to the party, as I am very interested to hear your thoughts.

Some parents, if their baby was born diseased, would prefer to allow the baby to die so that they could focus their resources on their other children, as most other animals do and most humans also presumably did until relatively recently in their history.

What do you think about this perspective in general (i.e. I'm welcoming all your thoughts on the matter, nothing specific)?

Distinct question: Do you think individual parents should be legally allowed to decide whether or not to support their diseased babies?

Rockaholic772 karma

Hello and Good Day =] (are you a HatFilms fan btw)

This is a good point and in my mind I would of thought that a parent would let their baby pass away because they wouldn't want to see it go through a lifetime of trauma. Rather then just because they would want to focus attention of there healthier children. But then again I don't know. Thats just me personally I guess.

Yes and no to the second part also..I Mean if a child is born with something that will make there life insufferable and not enjoyable of course it wouildn't be even fair to keep them alive. But I would hate to see some parents abuse this right by using iit on a CF child of something as equal to. Just because it will be hard work, Should give you the right to just give up ya know.

Hope I answered the questions okay Made me think alot Thanks for stopping by =]]]

miles371 karma

As per reddit tradition, please skip to the end if you don't feel like reading the wall of text.

No I'm not a HatFilms fan, I'd never heard about them before now, I take it you asked because I said 'good day sir' (did a search for them and they said it in a video and people seemed to find it funny)? =)

Thank you for sharing your thoughts with me.

I think that by having sex, the parents are engaging in an act which causes another human to become dependent upon them, and therefore that they owe that human (the child) restitution, to care and provide for it.

However, I really am unclear on what should happen in regards to diseased children... I have thought that maybe a parent should have a period after the birth of the child wherein they would be allowed to choose whether or not to support the child, and also that this would be a chance to find someone to adopt the child. Then, if the parents chose not to support the child either it would die or it would be adopted by someone else, but if they chose to keep the child, then they would be obligated to support it for as long as it needs thereafter. This period of choice may be seven days after birth, for example…

I think it is fair that a parent who has had sex by his own choice must look after a child, but I don't know how fair it is that someone must be stuck supporting a diseased child just by having given birth to it, something which they usually cannot have any reasonable reason to expect, which will take up so many resources and maybe prevent them from having other children or looking after their other children properly. Primal reproductive desire is strong at least in some people, the urge to have strong offspring who will go on and be successful and produce their own offspring. For some people they see their children as the equivalent of life after death, as a part of them lives on in them through their genes and their teachings (and others feel this way even if they do not think it consciously), and some put a great deal of planning into how they will be the best parents and raise the happiest, healthiest most successful offspring. For such people, such a thing as being stuck with diseased children against their will could be crushing.

I think the diseased child’s well being is also extremely important, which is why I’ve suggested a grace period wherein the parent would have to decide whether or not to keep the child, after which he would be obligated to do his utmost to provide and care for it. This ability to choose, also ensures that diseased children will only be raised by parents who really want to be doing it, which will create a better experience for the child. It's not nice for anyone to be raised by parents who do not want them.

These are only my thoughts on the matter so far, and are in no way set in stone nor even close. I consider many important topics such as this and am always keen to refine my understanding of them in response to alternative perspectives and other new information.

P.S. / tldr: I am very glad that you are happy and bringing happiness to those around you. Thank you for doing this AMA and I hope you will be able to offer support to others living with CF or other similar diseases if that is what you desire. I don't know your state of mind, so I'm sorry if a philosophical discussion such as this is not what you were looking for. If it is not then please say so and disregard. I will be very happy to release you to go on doing whatever it is you want to do. I don't know how draining CF is or isn't on your energy, I know people with CFS (chronic fatigue syndrome) who will find a conversation like this very draining, but I don't know anyone with CF nor 13% lung capacity etc... I will now be reading through the rest of your AMA answers to gain more understanding.

Rockaholic772 karma

Hey it's no trouble at all honestly, I welcome all topics of conversation.

I completely agree and see where you are coming from with your points but I think the MAIN thing is everybody is different. I think it would be unfair to set one particular set of rules or laws for everybody because like I said before it COULD be abused in certain ways.

For the main part though I agree with you whereas if parents unexpectedly have a diseased child and are unable to provide and look after if in the way it needs it should be put up for adoption. Or if the child would be in a state (because of the illness) where it would just grow up suffering it should be respectfully passed away(not sure on the technical term) But like you said my opinions aren't set in stone either and to be honest I've never given this subject much thought. I'll stand by my original statement though : Depends on the particular family and situation.

Thanks for the nice comments and things you said though and btw I read the whole thing =] You took the time to write it for me so I'll take the time to read it and answer the best I can =] Thanks again and Good Day Sir ;) lol

[deleted]0 karma

Can't you take a fucking hint?

Rockaholic774 karma

Lol Nah, I've got my own damn agenda ;)

zowhat3 karma

Rockaholic773 karma

Saving that pic ;) lol

MaximumUltra0 karma

Wow, reality is really trying to murder you.

Rockaholic772 karma

I Know right....... Have had a Hellhound on my tail for years

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Rockaholic773 karma

All Sorted =]

42sthansr4 karma

Hang in there /u/Rockaholic77! It's a totally different thing, but I was told 19 years ago that I had 6 months because of MS. I'm down but not out. Keep up the work! :D

Rockaholic774 karma

Give em hell man! Nothings gonna keep us down! =D Thanks for your encouragement! Keep fighting that fight with me =D

amandeerrrpppp1 karma

good luck man! don't really have any questions for you, but i've read most of your AMA, and i know you've heard this many times, but your outlook on life is super admirable. i wish the best for you!

Rockaholic771 karma

Thanks very much for the kind words man! =D glad you stopped by!