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Advice needed

WreckingBall

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>

I would maybe make sure that he knows the damage that lack of O2 may be doing to the other organ systems in his body - i.e. his heart, kidneys, liver and so on. You may not necessarily FEEL different but if he is in need of O2 and goes without it temporarily even it could be doing damage he is not even aware is being done.



I will say when I was put on O2 I did NOT want to wear it either. I would take it with me to the store and wear it til I went to get out of the car then I would take it off and put it back on when I got back in the car. It wasn't until I found out that I had pulmonary hypertension and my transplant doc told me I need to be on O2 fulltime or I could end up needing a heart transplant along with a lung transplant that I wised up and started wearing the O2 all the time. I used to tell people that I wore it to PREVENT a heart problem. There was something about me wearing it to prevent a problem instead of my saying I am wearing it cause my lungs are for crap that made me feel better. Like it was MY CHOICE to wear not that I had too. Just a mental way of dealing with it that helped me is all.



As for the stares I used to get irritated or embarassed but what are you going to do. Now that I have been transplanted and I am still having to deal with wearing a mask in heavily crowded areas I just laugh about it mostly. There are times when I get irritated if people make rude comments but most of the time people will look at me and back up or walk in the other direction - I just think GOOD - stay away from me and keep your germs to yourself lol. Out of ignorance people assume things instead of just asking.



I do agree with Emily though if he is okay with the wheelchair - despite the stares it will bring maybe ask him if he would bring the O2 - if for no other reason than climbing the stairs. Then he could take it off if he really did not want to wear it. It may be worth a shot to bring it up and see what he says. I know for me climbing stairs without O2 before transplant was almost an impossibility but climbing them with O2 was pretty simple.



Take Care and I hope that things work out for the concert.



Take Care,

Linds</end quote>


I will definitely talk to him about your reasons for wearing oxygen (he is also hoping to get a transplant at some point). I never went into much detail with complications lack of oxygen in his blood will cause. I simply told him, you could drop dead, your heart, lungs, and body can only fight for so long and like any other muscle that is working to hard, they can stop. He has stood firm on his choice of not wearing out in public and I felt like I wanted to be a friend and not lecture him on a constant basis. So maybe I will wait a while, the concert isn't for a month or so and then try to talk to him about it again.
 

WreckingBall

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>coltsfan715</b></i>

I would maybe make sure that he knows the damage that lack of O2 may be doing to the other organ systems in his body - i.e. his heart, kidneys, liver and so on. You may not necessarily FEEL different but if he is in need of O2 and goes without it temporarily even it could be doing damage he is not even aware is being done.



I will say when I was put on O2 I did NOT want to wear it either. I would take it with me to the store and wear it til I went to get out of the car then I would take it off and put it back on when I got back in the car. It wasn't until I found out that I had pulmonary hypertension and my transplant doc told me I need to be on O2 fulltime or I could end up needing a heart transplant along with a lung transplant that I wised up and started wearing the O2 all the time. I used to tell people that I wore it to PREVENT a heart problem. There was something about me wearing it to prevent a problem instead of my saying I am wearing it cause my lungs are for crap that made me feel better. Like it was MY CHOICE to wear not that I had too. Just a mental way of dealing with it that helped me is all.



As for the stares I used to get irritated or embarassed but what are you going to do. Now that I have been transplanted and I am still having to deal with wearing a mask in heavily crowded areas I just laugh about it mostly. There are times when I get irritated if people make rude comments but most of the time people will look at me and back up or walk in the other direction - I just think GOOD - stay away from me and keep your germs to yourself lol. Out of ignorance people assume things instead of just asking.



I do agree with Emily though if he is okay with the wheelchair - despite the stares it will bring maybe ask him if he would bring the O2 - if for no other reason than climbing the stairs. Then he could take it off if he really did not want to wear it. It may be worth a shot to bring it up and see what he says. I know for me climbing stairs without O2 before transplant was almost an impossibility but climbing them with O2 was pretty simple.



Take Care and I hope that things work out for the concert.



Take Care,

Linds</end quote>


I will definitely talk to him about your reasons for wearing oxygen (he is also hoping to get a transplant at some point). I never went into much detail with complications lack of oxygen in his blood will cause. I simply told him, you could drop dead, your heart, lungs, and body can only fight for so long and like any other muscle that is working to hard, they can stop. He has stood firm on his choice of not wearing out in public and I felt like I wanted to be a friend and not lecture him on a constant basis. So maybe I will wait a while, the concert isn't for a month or so and then try to talk to him about it again.
 

Wheezie

New member
I haven't read all the posts yet in response to your question, but I used to work for a disability rights organization and I can tell you Emily is 100% correct. If the building hasn't been deemed "historical" (and ya know, sometimes even if it HAS) it absolutely MUST be accessible for people with disabilities. I'm shocked that you can't get a hold of anyone at the venue. Can you reveal what state you are in (or send me a PM with more info if you'd like to be more private)? I will see if there's anything I can do to help you get into that concert - it's against the law and it's discrimination if the only reason he can't go is because it's not accessible to him.

On the what to say to jerky starring people, I'd ask your friend what he prefers you to do. For me, I tell whoever I'm with to just let people know I'm okay and that it's nothing for them to worry about. I can't usually answer for myself when I'm coughing my fool head off, ya know! - why do people ask me questions when I'm coughing?! drives me nuts. For me, it kind of irritates me when I'm with a friend and someone asks me if I'm okay or whatever and my friend says nothing. Obviously I can't answer...but that's just me, so that's why I say ask your friend how he'd like you to respond, or if he wants you to respond at all.

I like the idea of trying to contact the band too - write a million letters if you have to, lol - just because you didn't get a response the first few times doesn't mean you won't get lucky the next, so keep trying!
 

Wheezie

New member
I haven't read all the posts yet in response to your question, but I used to work for a disability rights organization and I can tell you Emily is 100% correct. If the building hasn't been deemed "historical" (and ya know, sometimes even if it HAS) it absolutely MUST be accessible for people with disabilities. I'm shocked that you can't get a hold of anyone at the venue. Can you reveal what state you are in (or send me a PM with more info if you'd like to be more private)? I will see if there's anything I can do to help you get into that concert - it's against the law and it's discrimination if the only reason he can't go is because it's not accessible to him.

On the what to say to jerky starring people, I'd ask your friend what he prefers you to do. For me, I tell whoever I'm with to just let people know I'm okay and that it's nothing for them to worry about. I can't usually answer for myself when I'm coughing my fool head off, ya know! - why do people ask me questions when I'm coughing?! drives me nuts. For me, it kind of irritates me when I'm with a friend and someone asks me if I'm okay or whatever and my friend says nothing. Obviously I can't answer...but that's just me, so that's why I say ask your friend how he'd like you to respond, or if he wants you to respond at all.

I like the idea of trying to contact the band too - write a million letters if you have to, lol - just because you didn't get a response the first few times doesn't mean you won't get lucky the next, so keep trying!
 

Wheezie

New member
I haven't read all the posts yet in response to your question, but I used to work for a disability rights organization and I can tell you Emily is 100% correct. If the building hasn't been deemed "historical" (and ya know, sometimes even if it HAS) it absolutely MUST be accessible for people with disabilities. I'm shocked that you can't get a hold of anyone at the venue. Can you reveal what state you are in (or send me a PM with more info if you'd like to be more private)? I will see if there's anything I can do to help you get into that concert - it's against the law and it's discrimination if the only reason he can't go is because it's not accessible to him.

On the what to say to jerky starring people, I'd ask your friend what he prefers you to do. For me, I tell whoever I'm with to just let people know I'm okay and that it's nothing for them to worry about. I can't usually answer for myself when I'm coughing my fool head off, ya know! - why do people ask me questions when I'm coughing?! drives me nuts. For me, it kind of irritates me when I'm with a friend and someone asks me if I'm okay or whatever and my friend says nothing. Obviously I can't answer...but that's just me, so that's why I say ask your friend how he'd like you to respond, or if he wants you to respond at all.

I like the idea of trying to contact the band too - write a million letters if you have to, lol - just because you didn't get a response the first few times doesn't mean you won't get lucky the next, so keep trying!
 

Wheezie

New member
I haven't read all the posts yet in response to your question, but I used to work for a disability rights organization and I can tell you Emily is 100% correct. If the building hasn't been deemed "historical" (and ya know, sometimes even if it HAS) it absolutely MUST be accessible for people with disabilities. I'm shocked that you can't get a hold of anyone at the venue. Can you reveal what state you are in (or send me a PM with more info if you'd like to be more private)? I will see if there's anything I can do to help you get into that concert - it's against the law and it's discrimination if the only reason he can't go is because it's not accessible to him.

On the what to say to jerky starring people, I'd ask your friend what he prefers you to do. For me, I tell whoever I'm with to just let people know I'm okay and that it's nothing for them to worry about. I can't usually answer for myself when I'm coughing my fool head off, ya know! - why do people ask me questions when I'm coughing?! drives me nuts. For me, it kind of irritates me when I'm with a friend and someone asks me if I'm okay or whatever and my friend says nothing. Obviously I can't answer...but that's just me, so that's why I say ask your friend how he'd like you to respond, or if he wants you to respond at all.

I like the idea of trying to contact the band too - write a million letters if you have to, lol - just because you didn't get a response the first few times doesn't mean you won't get lucky the next, so keep trying!
 

Wheezie

New member
I haven't read all the posts yet in response to your question, but I used to work for a disability rights organization and I can tell you Emily is 100% correct. If the building hasn't been deemed "historical" (and ya know, sometimes even if it HAS) it absolutely MUST be accessible for people with disabilities. I'm shocked that you can't get a hold of anyone at the venue. Can you reveal what state you are in (or send me a PM with more info if you'd like to be more private)? I will see if there's anything I can do to help you get into that concert - it's against the law and it's discrimination if the only reason he can't go is because it's not accessible to him.

On the what to say to jerky starring people, I'd ask your friend what he prefers you to do. For me, I tell whoever I'm with to just let people know I'm okay and that it's nothing for them to worry about. I can't usually answer for myself when I'm coughing my fool head off, ya know! - why do people ask me questions when I'm coughing?! drives me nuts. For me, it kind of irritates me when I'm with a friend and someone asks me if I'm okay or whatever and my friend says nothing. Obviously I can't answer...but that's just me, so that's why I say ask your friend how he'd like you to respond, or if he wants you to respond at all.

I like the idea of trying to contact the band too - write a million letters if you have to, lol - just because you didn't get a response the first few times doesn't mean you won't get lucky the next, so keep trying!
 

Wheezie

New member
I haven't read all the posts yet in response to your question, but I used to work for a disability rights organization and I can tell you Emily is 100% correct. If the building hasn't been deemed "historical" (and ya know, sometimes even if it HAS) it absolutely MUST be accessible for people with disabilities. I'm shocked that you can't get a hold of anyone at the venue. Can you reveal what state you are in (or send me a PM with more info if you'd like to be more private)? I will see if there's anything I can do to help you get into that concert - it's against the law and it's discrimination if the only reason he can't go is because it's not accessible to him.

On the what to say to jerky starring people, I'd ask your friend what he prefers you to do. For me, I tell whoever I'm with to just let people know I'm okay and that it's nothing for them to worry about. I can't usually answer for myself when I'm coughing my fool head off, ya know! - why do people ask me questions when I'm coughing?! drives me nuts. For me, it kind of irritates me when I'm with a friend and someone asks me if I'm okay or whatever and my friend says nothing. Obviously I can't answer...but that's just me, so that's why I say ask your friend how he'd like you to respond, or if he wants you to respond at all.

I like the idea of trying to contact the band too - write a million letters if you have to, lol - just because you didn't get a response the first few times doesn't mean you won't get lucky the next, so keep trying!
 

jodijp

New member
Hi WreckingBall <img src="i/expressions/face-icon-small-happy.gif" border="0">

Bless your heart for being such a good friend!

My husband is an architect in CA and knows the federal ADA (American Disability Act) Laws. It became law in the late 90s that ALL public buildings must be ADA compliant and have wheel chair access as well as a certain amount wheelchair seating based on the size of the venue. Public buildings were given a certain number of years to become compliant by the late 90s or they would be shut down. And yes, buildings were checked. But still, as suggested before, I would definitely give them a call and verify. Or maybe check a web site for the venue, they may be shown on the seating chart.

I have a personal question that I realize you maybe can't answer, but something that affects me at concerts - I can't deal with the cigarette smoke, period. Just wondering how your friend tolerates the smoke with a low FEV1. Especially without O2. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I hope everything goes well for you and you both enjoy the concert!

Your friend is very lucky indeed to have you by his side. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Hi WreckingBall <img src="i/expressions/face-icon-small-happy.gif" border="0">

Bless your heart for being such a good friend!

My husband is an architect in CA and knows the federal ADA (American Disability Act) Laws. It became law in the late 90s that ALL public buildings must be ADA compliant and have wheel chair access as well as a certain amount wheelchair seating based on the size of the venue. Public buildings were given a certain number of years to become compliant by the late 90s or they would be shut down. And yes, buildings were checked. But still, as suggested before, I would definitely give them a call and verify. Or maybe check a web site for the venue, they may be shown on the seating chart.

I have a personal question that I realize you maybe can't answer, but something that affects me at concerts - I can't deal with the cigarette smoke, period. Just wondering how your friend tolerates the smoke with a low FEV1. Especially without O2. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I hope everything goes well for you and you both enjoy the concert!

Your friend is very lucky indeed to have you by his side. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Hi WreckingBall <img src="i/expressions/face-icon-small-happy.gif" border="0">

Bless your heart for being such a good friend!

My husband is an architect in CA and knows the federal ADA (American Disability Act) Laws. It became law in the late 90s that ALL public buildings must be ADA compliant and have wheel chair access as well as a certain amount wheelchair seating based on the size of the venue. Public buildings were given a certain number of years to become compliant by the late 90s or they would be shut down. And yes, buildings were checked. But still, as suggested before, I would definitely give them a call and verify. Or maybe check a web site for the venue, they may be shown on the seating chart.

I have a personal question that I realize you maybe can't answer, but something that affects me at concerts - I can't deal with the cigarette smoke, period. Just wondering how your friend tolerates the smoke with a low FEV1. Especially without O2. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I hope everything goes well for you and you both enjoy the concert!

Your friend is very lucky indeed to have you by his side. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Hi WreckingBall <img src="i/expressions/face-icon-small-happy.gif" border="0">

Bless your heart for being such a good friend!

My husband is an architect in CA and knows the federal ADA (American Disability Act) Laws. It became law in the late 90s that ALL public buildings must be ADA compliant and have wheel chair access as well as a certain amount wheelchair seating based on the size of the venue. Public buildings were given a certain number of years to become compliant by the late 90s or they would be shut down. And yes, buildings were checked. But still, as suggested before, I would definitely give them a call and verify. Or maybe check a web site for the venue, they may be shown on the seating chart.

I have a personal question that I realize you maybe can't answer, but something that affects me at concerts - I can't deal with the cigarette smoke, period. Just wondering how your friend tolerates the smoke with a low FEV1. Especially without O2. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I hope everything goes well for you and you both enjoy the concert!

Your friend is very lucky indeed to have you by his side. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Hi WreckingBall <img src="i/expressions/face-icon-small-happy.gif" border="0">

Bless your heart for being such a good friend!

My husband is an architect in CA and knows the federal ADA (American Disability Act) Laws. It became law in the late 90s that ALL public buildings must be ADA compliant and have wheel chair access as well as a certain amount wheelchair seating based on the size of the venue. Public buildings were given a certain number of years to become compliant by the late 90s or they would be shut down. And yes, buildings were checked. But still, as suggested before, I would definitely give them a call and verify. Or maybe check a web site for the venue, they may be shown on the seating chart.

I have a personal question that I realize you maybe can't answer, but something that affects me at concerts - I can't deal with the cigarette smoke, period. Just wondering how your friend tolerates the smoke with a low FEV1. Especially without O2. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I hope everything goes well for you and you both enjoy the concert!

Your friend is very lucky indeed to have you by his side. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

jodijp

New member
Hi WreckingBall <img src="i/expressions/face-icon-small-happy.gif" border="0">

Bless your heart for being such a good friend!

My husband is an architect in CA and knows the federal ADA (American Disability Act) Laws. It became law in the late 90s that ALL public buildings must be ADA compliant and have wheel chair access as well as a certain amount wheelchair seating based on the size of the venue. Public buildings were given a certain number of years to become compliant by the late 90s or they would be shut down. And yes, buildings were checked. But still, as suggested before, I would definitely give them a call and verify. Or maybe check a web site for the venue, they may be shown on the seating chart.

I have a personal question that I realize you maybe can't answer, but something that affects me at concerts - I can't deal with the cigarette smoke, period. Just wondering how your friend tolerates the smoke with a low FEV1. Especially without O2. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I hope everything goes well for you and you both enjoy the concert!

Your friend is very lucky indeed to have you by his side. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JazzysMom

New member
My understanding is that they must make things handicap accessable, but that doesnt mean putting ramps or elevators in. It might mean having 2 people come & carrying him in his wheelchair down the stairs etc.

I would contact the place where the concert is being held if you arent getting answers from the entertainment themselves.

As to him not wanting to wear the O2......definitely emphasize how much more fun the concert would be if he could concentrate on the music and NOT his breathing.....

Good Luck & I think its terrific that you are trying your best to find a solution!
 

JazzysMom

New member
My understanding is that they must make things handicap accessable, but that doesnt mean putting ramps or elevators in. It might mean having 2 people come & carrying him in his wheelchair down the stairs etc.

I would contact the place where the concert is being held if you arent getting answers from the entertainment themselves.

As to him not wanting to wear the O2......definitely emphasize how much more fun the concert would be if he could concentrate on the music and NOT his breathing.....

Good Luck & I think its terrific that you are trying your best to find a solution!
 

JazzysMom

New member
My understanding is that they must make things handicap accessable, but that doesnt mean putting ramps or elevators in. It might mean having 2 people come & carrying him in his wheelchair down the stairs etc.

I would contact the place where the concert is being held if you arent getting answers from the entertainment themselves.

As to him not wanting to wear the O2......definitely emphasize how much more fun the concert would be if he could concentrate on the music and NOT his breathing.....

Good Luck & I think its terrific that you are trying your best to find a solution!
 

JazzysMom

New member
My understanding is that they must make things handicap accessable, but that doesnt mean putting ramps or elevators in. It might mean having 2 people come & carrying him in his wheelchair down the stairs etc.

I would contact the place where the concert is being held if you arent getting answers from the entertainment themselves.

As to him not wanting to wear the O2......definitely emphasize how much more fun the concert would be if he could concentrate on the music and NOT his breathing.....

Good Luck & I think its terrific that you are trying your best to find a solution!
 

JazzysMom

New member
My understanding is that they must make things handicap accessable, but that doesnt mean putting ramps or elevators in. It might mean having 2 people come & carrying him in his wheelchair down the stairs etc.

I would contact the place where the concert is being held if you arent getting answers from the entertainment themselves.

As to him not wanting to wear the O2......definitely emphasize how much more fun the concert would be if he could concentrate on the music and NOT his breathing.....

Good Luck & I think its terrific that you are trying your best to find a solution!
 

JazzysMom

New member
My understanding is that they must make things handicap accessable, but that doesnt mean putting ramps or elevators in. It might mean having 2 people come & carrying him in his wheelchair down the stairs etc.

I would contact the place where the concert is being held if you arent getting answers from the entertainment themselves.

As to him not wanting to wear the O2......definitely emphasize how much more fun the concert would be if he could concentrate on the music and NOT his breathing.....

Good Luck & I think its terrific that you are trying your best to find a solution!
 
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