My medical condition finally got the best of me.

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Xuphor

I have lied to all of you. I am deeply sorry.
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Please note: This is a serious thread. If I was joking, I'd have posted this in EoF.

Major update:
Ok, big/great news. I have listened to everyone telling me to accept donations, and recently on AIM someone very interesting contacted me.
While I cannot go into details how yet, I can tell you that the lung transplant's financial problems are no longer a problem thanks to a celebrity-status person who is also apparently a member of GBATemp. He agreed to remain forever anonymous to everyone except me (only his RL name, not even I know his GBATemp name. It could be The Catboy, p1ngpong, Costello, Gahars, or someone I've never heard of.) This is to prevent mass media coverage or the like (which I will NEVER want, nor ever agree to, I would sooner die than have mass media coverage about my medical stuff). While this is great news, there still is the HUGE problem of the fact that there is not a donor/donors yet, so it's still not possible for me to do the surgery, and might not ever be before I die.

Also, as I know people will ask me stuff, I'll say these points up front:
1 - Yes, I am sure this person is who they claim to be. They gave me undisputable proof.
2 - Because I know this person is who they claim to be, the amount of money is probably a very small amount to them. Maybe equal to like $5 to the common person.
3 - They have apparently known/seen me for 5 years on GBATemp, and they "will happily pay for what the USA refuses to fix me". I'm guessing they aren't big on USA government.
4 - Anyone who tries to guess who this person is I will refuse to answer. If you guess spot on right, way way off, or in between, my answer will always be this to guesses: "I will not answer".

Now, again, I need to stress this a lot: while the finances can be taken care of, I have no donor/donors yet, so there is still no guarantee of my living. Since I am now able to pay however, I have been put on the donation needed list, and since I have a very short time left, I am "near the top, but not at the top" of the list. Also, even if I get the surgery, there is no guarantee I'll live through it. It's an extremely invasive surgery, afterall.

Thank you for all your support GBATemp, and thanks a lot to you, whatever your GBATemp username is. I know you'll see this, and if I get a donor/donors, I'll call you again.

Major Update 2:
v.v I can't beleive I forgot to mention this in my last message..... must have been insanely tired....

Anyway, I'm all packed up now, and my sister will be driving me to the hospital (a good 2 hours away). I will be spending the rest of my days either until a donor is found or until I die in the hospital. If you're wondering why, because
1) - It's better for me anyway to be in a hospital right now.
2) - If a donor is found, every second delay counts. If/when a donor is found, I will already be in the hospital, thus increasing the odds that everything will go smoothly by a ton.
3) - Keep in mind that this is the hospital with the incredibly poor/spotty internet, so I might not be around to post for a while.
4) - I've changed it to where my sister will keep everyone updated herself, but still check in with p1ngpong to verify it's her. Also, she'll be using what I think was my first avatar on this website, before that fennec thing, and before I even started posting much at all. It's the avatar I've always used when first joining a website, and it's not an easy picture to find. I figure that will also help identify her. No clue what her signature will be, or if she'll even use one.

See all you folks later, I'm sure. Tomorrow I'll walk around the hospital (if allowed to) and try to find some place with an internet signal. If you don't hear from me, at least my sister will keep all you updated on status/donors/if-I-get-the-surgery/surgery-recovery/anything else revelant.
As many of you know, I have Cystic Fibrosis. As some of you know, it has not been under good control for the past couple of years. My CF has gotten to the point I need a full on double lung transplant, but I lack to money to pay for what the insurance won't pay for (a TOOOON of money, but still less than the insurance would pay for. So much that I wouldn't be able to afford a single monthly bill on it if I were to split it into payment plans). Because I cannot do the vital surgery, it's estimated that I will not live past August, with August 25th (my birthday, ironically) being the projected last day I'll live. If I do live that long however, I'd be forced into a ventilator in a hospital to breath well before that date. I know for a fact I'll die, there is just no way around it as I will not accept any charity, it just too much money. I found out about this whole thing late March, but didn't even really believe it until maybe late April. Not counting real-life people that know me, there is only one person on GBATemp that I have told about this to in mid-late June, but I do not know if that member wishes to be known or unknown, so I will leave it up to that person if they wish to make themself known.

I was honestly hesitant of making a post about this or not, but decided it'd be for the best to post a message similar to this on all the forums I frequent a lot (GBATemp and one other one). It should also be noted that whenever my condition gets where I can't live in my house anymore (I'm currently on several various home IV fluids just to keep me home), I will be going back to the hospital, which has terrible internet coverage and plenty of dead zones. I do not know yet when that will be, but once it happens, it's highly likely my posting activity will diminish to maybe once every 3 or so days at the most. Not only because of the spotty internet, but also because well.... I'll be struggling to breath every second, and frankly won't feel like browsing the internet anymore.

...

EDIT 2:
maybe setting up a small fundraiser with a donations thing on the front page to maybe let members donate to Xuphor so she have enough funds to fulfill that last wish? I dunno, maybe money to let her buy that one cool thing she's always wanted, or go to that one incredible place? To me, that would feel like the best gift, being gifted by the community shes come to love.
Thanks for the offer/thinking of this, but I would refuse it. Not only because that's still a type of charity, but mostly because I wouldn't be able to enjoy a lavish gift. I'm unable to go anywhere fun due to the already severe state of my CF, as I'd need a nebulizer treatment every ~4 hours, day and night (as you can guess, I'm not getting any real sleep), ontop of a 24/7 IV fluid infusion of various medicines that the doctors quite eloquently refer to as a "cocktail of drugs". Even if I were to accept any such a gift, I would not be able to enjoy it.

EDIT 3: A lot of various people are saying more about kickstarters, getting a state celebrity to help me, etc. Please, no one try to give me any sort of monetary support, be it money itself, contacting famous people to help me, or anything like that. I will simply refuse to accept it. All you people suggesting such as that are trying to be helpful/nice, but I really do not want to do that. I do not want to become a famous person by way of a celebrity paying for a sick person's recovery or the like. I do not want to be known be every part of GBATemp because of a Kickstarter to keep me alive. I really do not like that, and do not want it at all. I appreciate all your concerns, but do not do anything like that. Even if one of you does something like this without telling me, then give me the money once it's there, I will still refuse. It's not just because it's a ton of money, but it's also because I really do not wish to be remembered on the news/around town/on GBATemp as the person/member that only lived because of a generous donation, either by a celebrity or a kickstarter thing.

If you're the type of person that that feels you must help me for some reason, then the only thing I would even think of accepting are things that have no monetary value at all. I don't know of anything like that off hand, but any type of thing that has monetary value directly or indirectly, I will simply refuse, even if the monetary thing is already gathered.

Edit 4: Just wanting to update:
I'm still in the same state as I was when I made the OP. I've arranged it so when something major happens (thrown in hospital for my last few days, my actual death, and anything else of magnitude), my sister will make a new account here and PM p1ngpong. I'll PM p1ngpong for how to verify it's really her, and not some prankster. Once he's sure it's her, she'll share the information of magnitude with him, and he'll post the update.
 

p1ngpong

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Hey guys, I have been talking with Xuphor over the last couple of weeks about her predicament and how to best handle the posting of this incredibly sad news. Unsure about what course we should take ultimately we decided it was best that she just come out with it straight in a GOTC thread instead of a blog. This way we could be certain everyone who knows xuphor is informed that sadly she has not got long left and is gravely ill, and that everyone's thoughts and prayers can be with her and her friends and family during this difficult time.

I consider Xuphors sharing of this news here an act of supreme bravery and as an administrator here I am very moved and proud to know she considers GBAtemp a place dear enough in her heart to spend her final days on. I am confident that in times like this our great community can gather together and shed away any petty differences and prejudices they may have and unite as one in solidarity.

Mortality is a thing we rarely have to think of here on GBAtemp, we have a young userbase which rarely needs to dwell on such a subject. In this thread I hope to see a maturity displayed beyond the years of even our youngest members, with respectful and sensitive posts. We are a community after all and it is these very real moments which define us as a community. It is in times like this that we realize that we are not dealing with mere avatars and anonymous figures behind an internet connection, but real people. Real human beings who lead real lives and suffer the same real struggles and pain which you do in your lives outside of this forum.

So make me proud GBAtemp, the only button I want to press under posts for the remainder of this thread is the like button, not the delete button. Because this is the time when we show that we are a true community, filled with compassionate mature people whose integrity as a group is the envy of other communities and an example to them all. And I dearly hope that this thread will be a supreme example of that fact.

Thanks guys.
 

Xarsah16

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I never really got to know you, but I have seen you post a little here and there...

I know we'll all miss you, and I hope by some miracle that you'll live past August. :) I wish you the best of luck- it's always sad to see a longtime/well known member leave.

Best of luck to you- I'm sure you'll need it. Take care.
 

EyeZ

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Wow, this came out of the blue.

I did know about your CF Xuphor, but not to the extent it has reached.

I, and i'm sure i can speak for all Tempers that know you, will miss you.

So hard to find the right words with this kind of news, i just wish you all the best and feel so sad that this has to happen to you.

Take care Xuphor, you will be missed.
 
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emmanu888

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That's sad :( It's the first time i learn a fellow Temper will die soon. It's sad as well that you cannot afford the surgery that would let you live longer, you would need a miracle to live past August. One thing for sure Xuph, everyone will miss you here.
 
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jacksprat1990

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There was a lad in my college IT class this past year that had the same condition as you. He gave us a sort of presentation of what he has to go through just to be able to live and it's really sad. It makes you reflect on how unlucky some people are in life and how hard their lives must be compared to your own. August 25th is my birthday aswell. Keep trying to enjoy your life to the fullest. Kind regards.
 

signz

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God damn. While I don't know you all that well, reading this made me really sad - even got tears in my eyes (yeah, I'm kinda emotional).
First a dear friend 3 weeks ago because of fucking cancer (some people here might have known him, Moggy from DS-Scene) and now/soon you.. Life's just not fair!
I'm really sorry to hear this and hope you can make the best of your time left. I remember you mentioning that you have CF a couple years ago (I think) but was kinda hoping for it to end well, definitely not like this.
 
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I cannot express the sadness and anger I feel that you unable to have a life saving procedure because you lack the finances to pay for it.

I offer my best wishes to you and your loved ones. I hope you find some sort of miracle whether it be financial or medical.

Without wanting to make this thread into a "USA healthcare system sucks" thread, I must say that I agree with you there. Not knowing myself what cystic fibrosis consists of, the description in Xuphor's opening post is certainly not encouraging, and needing two healthy organs to be available at the right time as well as the money to get them replaced are two separate but equally daunting tasks, the latter of which would not be daunting in a lot of other countries.

Xuphor: Family, friends and related charities may assist you in these times. If you think you are already prepared for your death and do not want to take away from others what you think you don't deserve, or just don't want (i.e. charity money), then that's your choice. But don't refuse what you're given if you're given anything, unless you really feel this way about your condition.

I do not know you very well, having only seen a few of your posts in the Edge of the Forum, so I can't give you a more personal goodbye. Do enjoy your life as you see fit before you become too weak to live it fully. That's all I can really say.
 

chyyran

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I am so sorry.. I don't know what to say. I do hope that somehow, something will happen that will keep you breathing, a miracle.
I can't begin to imagine what you must be going through right now, knowing that you will die very soon, I pray that you will live long past August.

We'll miss you.
 

Ryukouki

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Awww Xuphor! :( I had no idea that you were going through this, and I hope that in the remaining time you have left you are able to find peace and happiness. You and your family are in my prayers.

p1ngpong:

Hey I know that Xuphor isn't necessarily taking charities, but instead of that, would the GBAtemp staff run the idea of maybe setting up a small fundraiser with a donations thing on the front page to maybe let members donate to Xuphor so she have enough funds to fulfill that last wish? I dunno, maybe money to let her buy that one cool thing she's always wanted, or go to that one incredible place? To me, that would feel like the best gift, being gifted by the community shes come to love.
 

the_randomizer

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Words cannot express the indescribable sadness I feel. I admit that while I don't know you very well, rest assured that there are many people out there who care about you and pray for a miracle. Mortality is indeed a frail thing and is something that we must take into account. If you ever need a sounding board, by all means, we are all willing to let you vent as you see fit, myself included. We are all with you, and are in this together.
 

LinkFan16

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I don't know you at all, although I might have seen you around GBATemp once or twice, still you have my greatest respect for stepping into the open with such a personal message. And reading your words made me think about my own life - or to be more precise - it made me question the way I live my own life. Every day we get to live is a gift - even those very bad days that one wants to put away and forget about. The way you seem to have accepted what is to come - I don't know if I could look at it that way if I were to die in a bit more than a month. So once again, you have my respect and my best wishes are with you.
 

Xuphor

I have lied to all of you. I am deeply sorry.
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maybe setting up a small fundraiser with a donations thing on the front page to maybe let members donate to Xuphor so she have enough funds to fulfill that last wish? I dunno, maybe money to let her buy that one cool thing she's always wanted, or go to that one incredible place? To me, that would feel like the best gift, being gifted by the community shes come to love.
Thanks for the offer/thinking of this, but I would refuse it. Not only because that's still a type of charity, but mostly because I wouldn't be able to enjoy a lavish gift. I'm unable to go anywhere fun due to the already severe state of my CF, as I'd need a nebulizer treatment every ~4 hours, day and night (as you can guess, I'm not getting any real sleep), ontop of a 24/7 IV fluid infusion of various medicines that the doctors quite eloquently refer to as a "cocktail of drugs". Even if I were to accept any such a gift, I would not be able to enjoy it. Personally, I'm just glad that I'll be able to participate in the betas for FFXIV:ARR. Once the servers are open (next time it shoudl be open for a couple of weeks in a row), I'm spending a lot of time in that virtual world, having a blast.

EDIT: Added contact information for things I'm still online in in my OP, including FFXIV:ARR, should anyone want to contact me outside of GBATemp.

p1ngpong
 
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