It's weird, I never thought it'd be over this fast. I'm not afraid of dying, I have my beliefs and I'm not scared anymore, I'm just tired of this place. I'll be 17 this sunday Jan 16th and backin november my doctors. Dr. daniel caplan and Dr. michael Scheckter* (I hope I'm spelling his name correctly) told me I had a year to live if I was lucky. I've declined to go on the transplant list, the evaluation board would most likely deny me anyway, and I've signed a DNR, well not a legal one since i'm not 18 but it's been agreed upon and talked about with parents and doctors,social workers, and whoever else was in that cold meeting room. I don't want to be put on a vent, I want it to end when it ends, I'm still doing my treatments and running as much as I can which isn't much, but it's a losing battle. I don't know why I'm rambling on to strangers on a website I visit once a year, and I don't know if this is in the right place... I guess I'm just surprised that I will probably never see my 18th birthday, I'll never be a writer or a pilot, I'll never build that nice house in texas where it's always sunny. I'll never marry. And the only real question that I have is how to tell my bestfriend that It's almost over, he's seen me in the hospital but he doesn't know about the ICU and i've hid my oxygen from him for over two months now. He is so naive and he has no idea how bad it is. But I don't know how to tell him even though I feel like he deserves to know. wow this is long and pretty pointless I guess, but i had to get it out. I'm going to end this now, any spelling erros I will blame on this old keyboard, half the keys work, and my tired eyes since it's 4:30 A.M.
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It's over.
- Thread starter duke1234
- Start date
It's weird, I never thought it'd be over this fast. I'm not afraid of dying, I have my beliefs and I'm not scared anymore, I'm just tired of this place. I'll be 17 this sunday Jan 16th and backin november my doctors. Dr. daniel caplan and Dr. michael Scheckter* (I hope I'm spelling his name correctly) told me I had a year to live if I was lucky. I've declined to go on the transplant list, the evaluation board would most likely deny me anyway, and I've signed a DNR, well not a legal one since i'm not 18 but it's been agreed upon and talked about with parents and doctors,social workers, and whoever else was in that cold meeting room. I don't want to be put on a vent, I want it to end when it ends, I'm still doing my treatments and running as much as I can which isn't much, but it's a losing battle. I don't know why I'm rambling on to strangers on a website I visit once a year, and I don't know if this is in the right place... I guess I'm just surprised that I will probably never see my 18th birthday, I'll never be a writer or a pilot, I'll never build that nice house in texas where it's always sunny. I'll never marry. And the only real question that I have is how to tell my bestfriend that It's almost over, he's seen me in the hospital but he doesn't know about the ICU and i've hid my oxygen from him for over two months now. He is so naive and he has no idea how bad it is. But I don't know how to tell him even though I feel like he deserves to know. wow this is long and pretty pointless I guess, but i had to get it out. I'm going to end this now, any spelling erros I will blame on this old keyboard, half the keys work, and my tired eyes since it's 4:30 A.M.
It's weird, I never thought it'd be over this fast. I'm not afraid of dying, I have my beliefs and I'm not scared anymore, I'm just tired of this place. I'll be 17 this sunday Jan 16th and backin november my doctors. Dr. daniel caplan and Dr. michael Scheckter* (I hope I'm spelling his name correctly) told me I had a year to live if I was lucky. I've declined to go on the transplant list, the evaluation board would most likely deny me anyway, and I've signed a DNR, well not a legal one since i'm not 18 but it's been agreed upon and talked about with parents and doctors,social workers, and whoever else was in that cold meeting room. I don't want to be put on a vent, I want it to end when it ends, I'm still doing my treatments and running as much as I can which isn't much, but it's a losing battle. I don't know why I'm rambling on to strangers on a website I visit once a year, and I don't know if this is in the right place... I guess I'm just surprised that I will probably never see my 18th birthday, I'll never be a writer or a pilot, I'll never build that nice house in texas where it's always sunny. I'll never marry. And the only real question that I have is how to tell my bestfriend that It's almost over, he's seen me in the hospital but he doesn't know about the ICU and i've hid my oxygen from him for over two months now. He is so naive and he has no idea how bad it is. But I don't know how to tell him even though I feel like he deserves to know. wow this is long and pretty pointless I guess, but i had to get it out. I'm going to end this now, any spelling erros I will blame on this old keyboard, half the keys work, and my tired eyes since it's 4:30 A.M.
Twistofchaos
New member
Sorry to hear dude. Why a year though? Indeed don't stop trying.
And well, try to make it count, that goes for everyone ofcourse but when the finish line comes in sight you might wanna give it a little extra. Do what you can even if you're pretty sick. Misbehave, badly. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Take care
And well, try to make it count, that goes for everyone ofcourse but when the finish line comes in sight you might wanna give it a little extra. Do what you can even if you're pretty sick. Misbehave, badly. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Take care
Twistofchaos
New member
Sorry to hear dude. Why a year though? Indeed don't stop trying.
And well, try to make it count, that goes for everyone ofcourse but when the finish line comes in sight you might wanna give it a little extra. Do what you can even if you're pretty sick. Misbehave, badly. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Take care
And well, try to make it count, that goes for everyone ofcourse but when the finish line comes in sight you might wanna give it a little extra. Do what you can even if you're pretty sick. Misbehave, badly. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Take care
Twistofchaos
New member
Sorry to hear dude. Why a year though? Indeed don't stop trying.
<br />And well, try to make it count, that goes for everyone ofcourse but when the finish line comes in sight you might wanna give it a little extra. Do what you can even if you're pretty sick. Misbehave, badly. <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />Take care
<br />And well, try to make it count, that goes for everyone ofcourse but when the finish line comes in sight you might wanna give it a little extra. Do what you can even if you're pretty sick. Misbehave, badly. <img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />Take care
lilkidNicky
New member
Wow duke, that's really rough and I'm sorry to hear that. Please don't just give up though regardless <img src="i/expressions/face-icon-small-sad.gif" border="0">
lilkidNicky
New member
Wow duke, that's really rough and I'm sorry to hear that. Please don't just give up though regardless <img src="i/expressions/face-icon-small-sad.gif" border="0">
lilkidNicky
New member
Wow duke, that's really rough and I'm sorry to hear that. Please don't just give up though regardless <img src="i/expressions/face-icon-small-sad.gif" border="0">
AleksandraKaczynska
New member
So sorry. Just keep going....
and why a year - what if more... what then....
This helps me....
"God,
grant me serenity,
to accept that, what I cannot change,
courage,
to change what I can,
and wisdom,
to distinguish one from the other"
and why a year - what if more... what then....
This helps me....
"God,
grant me serenity,
to accept that, what I cannot change,
courage,
to change what I can,
and wisdom,
to distinguish one from the other"
AleksandraKaczynska
New member
So sorry. Just keep going....
and why a year - what if more... what then....
This helps me....
"God,
grant me serenity,
to accept that, what I cannot change,
courage,
to change what I can,
and wisdom,
to distinguish one from the other"
and why a year - what if more... what then....
This helps me....
"God,
grant me serenity,
to accept that, what I cannot change,
courage,
to change what I can,
and wisdom,
to distinguish one from the other"
AleksandraKaczynska
New member
So sorry. Just keep going....
<br />and why a year - what if more... what then....
<br />This helps me....
<br />"God,
<br />grant me serenity,
<br />to accept that, what I cannot change,
<br />courage,
<br />to change what I can,
<br />and wisdom,
<br />to distinguish one from the other"
<br />and why a year - what if more... what then....
<br />This helps me....
<br />"God,
<br />grant me serenity,
<br />to accept that, what I cannot change,
<br />courage,
<br />to change what I can,
<br />and wisdom,
<br />to distinguish one from the other"
Duke, sorry to hear you are so down but take what they are saying as motivation. I've been down in the mid 20's for FEVs and what should've been a trip to be evaluated for transplant, which turned out it couldn't be done where I went to because I'm not Canadaian (the clinic I went to was in Toronto and I'm from the Cayman Islands) or at least there would be allot of red tape to go through and they made it seem like the pressure was on with my health to get listed somewhere. I was told by the docs that regardless I needed to work hard and get myself in gear or I wouldn't be approved because I was so under weight and in such bad condition that in their opinion I wouldn't make it off the operating table. They wanted to put a G-Tube in and I declined and told them I'll do it on my own, I didn't want to lose my abs <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyways, that put me on a mission and that was in 2002 and I'm now in the high 30s to low 40s FEV (I bounce around a bit depending how I'm doing) and still going, granted not the greatest compared to others here but I function quite well, hold a full time job and live a good enough life that I wouldn't just give up. Point is though had I taken what they told me for face value I probably wouldn't be here today. Never give up and as I said before use it as motivation to prove them wrong. For me it took serious motivation and I joined the gym and picked up weight lifting - that was a MAJOR factor I believe in getting my strength and weight back to fight and maintain myself. But like others have said don't give up. My prayers are with you
Duke, sorry to hear you are so down but take what they are saying as motivation. I've been down in the mid 20's for FEVs and what should've been a trip to be evaluated for transplant, which turned out it couldn't be done where I went to because I'm not Canadaian (the clinic I went to was in Toronto and I'm from the Cayman Islands) or at least there would be allot of red tape to go through and they made it seem like the pressure was on with my health to get listed somewhere. I was told by the docs that regardless I needed to work hard and get myself in gear or I wouldn't be approved because I was so under weight and in such bad condition that in their opinion I wouldn't make it off the operating table. They wanted to put a G-Tube in and I declined and told them I'll do it on my own, I didn't want to lose my abs <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyways, that put me on a mission and that was in 2002 and I'm now in the high 30s to low 40s FEV (I bounce around a bit depending how I'm doing) and still going, granted not the greatest compared to others here but I function quite well, hold a full time job and live a good enough life that I wouldn't just give up. Point is though had I taken what they told me for face value I probably wouldn't be here today. Never give up and as I said before use it as motivation to prove them wrong. For me it took serious motivation and I joined the gym and picked up weight lifting - that was a MAJOR factor I believe in getting my strength and weight back to fight and maintain myself. But like others have said don't give up. My prayers are with you
Duke, sorry to hear you are so down but take what they are saying as motivation. I've been down in the mid 20's for FEVs and what should've been a trip to be evaluated for transplant, which turned out it couldn't be done where I went to because I'm not Canadaian (the clinic I went to was in Toronto and I'm from the Cayman Islands) or at least there would be allot of red tape to go through and they made it seem like the pressure was on with my health to get listed somewhere. I was told by the docs that regardless I needed to work hard and get myself in gear or I wouldn't be approved because I was so under weight and in such bad condition that in their opinion I wouldn't make it off the operating table. They wanted to put a G-Tube in and I declined and told them I'll do it on my own, I didn't want to lose my abs <img src="i/expressions/face-icon-small-wink.gif" border="0"> Anyways, that put me on a mission and that was in 2002 and I'm now in the high 30s to low 40s FEV (I bounce around a bit depending how I'm doing) and still going, granted not the greatest compared to others here but I function quite well, hold a full time job and live a good enough life that I wouldn't just give up. Point is though had I taken what they told me for face value I probably wouldn't be here today. Never give up and as I said before use it as motivation to prove them wrong. For me it took serious motivation and I joined the gym and picked up weight lifting - that was a MAJOR factor I believe in getting my strength and weight back to fight and maintain myself. But like others have said don't give up. My prayers are with you
I am so sorry to read that this is happening to you. It sounds though for 17 your mature at your age and know what you want. I know that as a fellow Cf'er if anyone tells me that its my time, I would get a second opinion, but at the same time this is your decision. Ill be sending positivity your way.
As far as your bestfriend. I understand feeling the need to keep stuff from him, but I would sit with him and tell him what is going on. You don't want to make your death a surprise because that will leave him wondering why you never told him, if you were friends at all, maybe he could have helped you in some way, etc. etc. I dont think he is as naive as you may think he is...
As far as your bestfriend. I understand feeling the need to keep stuff from him, but I would sit with him and tell him what is going on. You don't want to make your death a surprise because that will leave him wondering why you never told him, if you were friends at all, maybe he could have helped you in some way, etc. etc. I dont think he is as naive as you may think he is...
I am so sorry to read that this is happening to you. It sounds though for 17 your mature at your age and know what you want. I know that as a fellow Cf'er if anyone tells me that its my time, I would get a second opinion, but at the same time this is your decision. Ill be sending positivity your way.
As far as your bestfriend. I understand feeling the need to keep stuff from him, but I would sit with him and tell him what is going on. You don't want to make your death a surprise because that will leave him wondering why you never told him, if you were friends at all, maybe he could have helped you in some way, etc. etc. I dont think he is as naive as you may think he is...
As far as your bestfriend. I understand feeling the need to keep stuff from him, but I would sit with him and tell him what is going on. You don't want to make your death a surprise because that will leave him wondering why you never told him, if you were friends at all, maybe he could have helped you in some way, etc. etc. I dont think he is as naive as you may think he is...
I am so sorry to read that this is happening to you. It sounds though for 17 your mature at your age and know what you want. I know that as a fellow Cf'er if anyone tells me that its my time, I would get a second opinion, but at the same time this is your decision. Ill be sending positivity your way.
<br />
<br />As far as your bestfriend. I understand feeling the need to keep stuff from him, but I would sit with him and tell him what is going on. You don't want to make your death a surprise because that will leave him wondering why you never told him, if you were friends at all, maybe he could have helped you in some way, etc. etc. I dont think he is as naive as you may think he is...
<br />
<br />As far as your bestfriend. I understand feeling the need to keep stuff from him, but I would sit with him and tell him what is going on. You don't want to make your death a surprise because that will leave him wondering why you never told him, if you were friends at all, maybe he could have helped you in some way, etc. etc. I dont think he is as naive as you may think he is...
J
jacobus
Guest
I echo what Mark said. I was given one year to live 7 years ago. If anything I am better now than I was then. Over the last few years I have completely changed my lifestyle, got my diet in order and started daily exercise (treadmill and weight lifting). I am about to turn 30 and my lung function is around 30% (i go on iv's about once a year). I am married, own my own business (work full time), just built a house and finished my honours in law. All in all, I have a great life. Sure, my lungs are crap but truly believe I can improve from where I'm at now. Don't take what the Dr's say as gospel. Despite what they project, they don't know anywhere near as much as they think they do. Good luck with everything. Feel free to message me if you want to chat further.
J
jacobus
Guest
I echo what Mark said. I was given one year to live 7 years ago. If anything I am better now than I was then. Over the last few years I have completely changed my lifestyle, got my diet in order and started daily exercise (treadmill and weight lifting). I am about to turn 30 and my lung function is around 30% (i go on iv's about once a year). I am married, own my own business (work full time), just built a house and finished my honours in law. All in all, I have a great life. Sure, my lungs are crap but truly believe I can improve from where I'm at now. Don't take what the Dr's say as gospel. Despite what they project, they don't know anywhere near as much as they think they do. Good luck with everything. Feel free to message me if you want to chat further.