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Advice needed

W

WreckingBall

New member
I'm a respiratory therapist who has a friend/patient with CF that I take to rock concerts. We do other things as well but the advice is needed with the concert situation. (I'm going to be as vague as possible so I don't violate any hippa laws). His fev1 is usually in the 30's. He would qualify home o2 (oxygen) but he refuses to wear it out in public because he's tired of people staring already as it is, he doesn't want to add fuel to the fire.

I get extremely anxious in the worst way possible when I take him out in public because it's hard for me to watch someone struggling to breathe. I'm out of my element, I'm used to being in my comfy hospital environment and being confident that I can take care of my patients properly. Plus as many of you know, when a CFer has a coughing fit it's hard for strangers to ignore it, so they end up staring. It drives me batty! They look at him as if he has some horrible disease he's going to spread to the world, or they look out of concern, or they look at me like 'why aren't you helping him?!' so first question, how do you guys handle it, is it something you just get used to with time or do you have suggestions on what I should say? Or just ignore it? I don't want him to feel even more uncomfortable about it so I usually say nothing, sometimes I will say he's fine, and if they still continue to stare I <i>sometimes</i> get a little crappy and will just tell them to stop staring.

Next question and this is why I joined the forum to get ideas from you guys since you know best. The rock concert. It's at an old venue that I do not believe is handicap accessible. It's all one level, except for a small balcony that has a staircase to get to (like I said since it's old I doubt it has an elevator). I asked him if I could take him in a wheelchair, so it will be easier for him. Plus I honestly think it would be very hard on him to stand and walk for that long. He agreed to that except if we stay on the first level he will miss the entire show because it's all one level and he'll be in a wheelchair. We could try to get up front but this is an extremely popular rock group so it will be hard. I've emailed and called this venue to inquire about the balcony, if we can even get up there, and if there is some magical elevator but no one has returned my calls or my emails. So do you guys have any suggestions. I know this sounds weird and I hope I didn't offend anyone but I really will be heart broken if I can't take him and I'm sure he will be very bummed out as well.

I just want to make sure he has a good time and it doesn't stress out his body too much. Ya know? I've taken him to several concerts in the last year but it seems his exercise tolerance keeps diminishing with every show.

Thank you!
 
W

WreckingBall

New member
I'm a respiratory therapist who has a friend/patient with CF that I take to rock concerts. We do other things as well but the advice is needed with the concert situation. (I'm going to be as vague as possible so I don't violate any hippa laws). His fev1 is usually in the 30's. He would qualify home o2 (oxygen) but he refuses to wear it out in public because he's tired of people staring already as it is, he doesn't want to add fuel to the fire.

I get extremely anxious in the worst way possible when I take him out in public because it's hard for me to watch someone struggling to breathe. I'm out of my element, I'm used to being in my comfy hospital environment and being confident that I can take care of my patients properly. Plus as many of you know, when a CFer has a coughing fit it's hard for strangers to ignore it, so they end up staring. It drives me batty! They look at him as if he has some horrible disease he's going to spread to the world, or they look out of concern, or they look at me like 'why aren't you helping him?!' so first question, how do you guys handle it, is it something you just get used to with time or do you have suggestions on what I should say? Or just ignore it? I don't want him to feel even more uncomfortable about it so I usually say nothing, sometimes I will say he's fine, and if they still continue to stare I <i>sometimes</i> get a little crappy and will just tell them to stop staring.

Next question and this is why I joined the forum to get ideas from you guys since you know best. The rock concert. It's at an old venue that I do not believe is handicap accessible. It's all one level, except for a small balcony that has a staircase to get to (like I said since it's old I doubt it has an elevator). I asked him if I could take him in a wheelchair, so it will be easier for him. Plus I honestly think it would be very hard on him to stand and walk for that long. He agreed to that except if we stay on the first level he will miss the entire show because it's all one level and he'll be in a wheelchair. We could try to get up front but this is an extremely popular rock group so it will be hard. I've emailed and called this venue to inquire about the balcony, if we can even get up there, and if there is some magical elevator but no one has returned my calls or my emails. So do you guys have any suggestions. I know this sounds weird and I hope I didn't offend anyone but I really will be heart broken if I can't take him and I'm sure he will be very bummed out as well.

I just want to make sure he has a good time and it doesn't stress out his body too much. Ya know? I've taken him to several concerts in the last year but it seems his exercise tolerance keeps diminishing with every show.

Thank you!
 
W

WreckingBall

New member
I'm a respiratory therapist who has a friend/patient with CF that I take to rock concerts. We do other things as well but the advice is needed with the concert situation. (I'm going to be as vague as possible so I don't violate any hippa laws). His fev1 is usually in the 30's. He would qualify home o2 (oxygen) but he refuses to wear it out in public because he's tired of people staring already as it is, he doesn't want to add fuel to the fire.

I get extremely anxious in the worst way possible when I take him out in public because it's hard for me to watch someone struggling to breathe. I'm out of my element, I'm used to being in my comfy hospital environment and being confident that I can take care of my patients properly. Plus as many of you know, when a CFer has a coughing fit it's hard for strangers to ignore it, so they end up staring. It drives me batty! They look at him as if he has some horrible disease he's going to spread to the world, or they look out of concern, or they look at me like 'why aren't you helping him?!' so first question, how do you guys handle it, is it something you just get used to with time or do you have suggestions on what I should say? Or just ignore it? I don't want him to feel even more uncomfortable about it so I usually say nothing, sometimes I will say he's fine, and if they still continue to stare I <i>sometimes</i> get a little crappy and will just tell them to stop staring.

Next question and this is why I joined the forum to get ideas from you guys since you know best. The rock concert. It's at an old venue that I do not believe is handicap accessible. It's all one level, except for a small balcony that has a staircase to get to (like I said since it's old I doubt it has an elevator). I asked him if I could take him in a wheelchair, so it will be easier for him. Plus I honestly think it would be very hard on him to stand and walk for that long. He agreed to that except if we stay on the first level he will miss the entire show because it's all one level and he'll be in a wheelchair. We could try to get up front but this is an extremely popular rock group so it will be hard. I've emailed and called this venue to inquire about the balcony, if we can even get up there, and if there is some magical elevator but no one has returned my calls or my emails. So do you guys have any suggestions. I know this sounds weird and I hope I didn't offend anyone but I really will be heart broken if I can't take him and I'm sure he will be very bummed out as well.

I just want to make sure he has a good time and it doesn't stress out his body too much. Ya know? I've taken him to several concerts in the last year but it seems his exercise tolerance keeps diminishing with every show.

Thank you!
 
W

WreckingBall

New member
I'm a respiratory therapist who has a friend/patient with CF that I take to rock concerts. We do other things as well but the advice is needed with the concert situation. (I'm going to be as vague as possible so I don't violate any hippa laws). His fev1 is usually in the 30's. He would qualify home o2 (oxygen) but he refuses to wear it out in public because he's tired of people staring already as it is, he doesn't want to add fuel to the fire.

I get extremely anxious in the worst way possible when I take him out in public because it's hard for me to watch someone struggling to breathe. I'm out of my element, I'm used to being in my comfy hospital environment and being confident that I can take care of my patients properly. Plus as many of you know, when a CFer has a coughing fit it's hard for strangers to ignore it, so they end up staring. It drives me batty! They look at him as if he has some horrible disease he's going to spread to the world, or they look out of concern, or they look at me like 'why aren't you helping him?!' so first question, how do you guys handle it, is it something you just get used to with time or do you have suggestions on what I should say? Or just ignore it? I don't want him to feel even more uncomfortable about it so I usually say nothing, sometimes I will say he's fine, and if they still continue to stare I <i>sometimes</i> get a little crappy and will just tell them to stop staring.

Next question and this is why I joined the forum to get ideas from you guys since you know best. The rock concert. It's at an old venue that I do not believe is handicap accessible. It's all one level, except for a small balcony that has a staircase to get to (like I said since it's old I doubt it has an elevator). I asked him if I could take him in a wheelchair, so it will be easier for him. Plus I honestly think it would be very hard on him to stand and walk for that long. He agreed to that except if we stay on the first level he will miss the entire show because it's all one level and he'll be in a wheelchair. We could try to get up front but this is an extremely popular rock group so it will be hard. I've emailed and called this venue to inquire about the balcony, if we can even get up there, and if there is some magical elevator but no one has returned my calls or my emails. So do you guys have any suggestions. I know this sounds weird and I hope I didn't offend anyone but I really will be heart broken if I can't take him and I'm sure he will be very bummed out as well.

I just want to make sure he has a good time and it doesn't stress out his body too much. Ya know? I've taken him to several concerts in the last year but it seems his exercise tolerance keeps diminishing with every show.

Thank you!
 
W

WreckingBall

New member
I'm a respiratory therapist who has a friend/patient with CF that I take to rock concerts. We do other things as well but the advice is needed with the concert situation. (I'm going to be as vague as possible so I don't violate any hippa laws). His fev1 is usually in the 30's. He would qualify home o2 (oxygen) but he refuses to wear it out in public because he's tired of people staring already as it is, he doesn't want to add fuel to the fire.

I get extremely anxious in the worst way possible when I take him out in public because it's hard for me to watch someone struggling to breathe. I'm out of my element, I'm used to being in my comfy hospital environment and being confident that I can take care of my patients properly. Plus as many of you know, when a CFer has a coughing fit it's hard for strangers to ignore it, so they end up staring. It drives me batty! They look at him as if he has some horrible disease he's going to spread to the world, or they look out of concern, or they look at me like 'why aren't you helping him?!' so first question, how do you guys handle it, is it something you just get used to with time or do you have suggestions on what I should say? Or just ignore it? I don't want him to feel even more uncomfortable about it so I usually say nothing, sometimes I will say he's fine, and if they still continue to stare I <i>sometimes</i> get a little crappy and will just tell them to stop staring.

Next question and this is why I joined the forum to get ideas from you guys since you know best. The rock concert. It's at an old venue that I do not believe is handicap accessible. It's all one level, except for a small balcony that has a staircase to get to (like I said since it's old I doubt it has an elevator). I asked him if I could take him in a wheelchair, so it will be easier for him. Plus I honestly think it would be very hard on him to stand and walk for that long. He agreed to that except if we stay on the first level he will miss the entire show because it's all one level and he'll be in a wheelchair. We could try to get up front but this is an extremely popular rock group so it will be hard. I've emailed and called this venue to inquire about the balcony, if we can even get up there, and if there is some magical elevator but no one has returned my calls or my emails. So do you guys have any suggestions. I know this sounds weird and I hope I didn't offend anyone but I really will be heart broken if I can't take him and I'm sure he will be very bummed out as well.

I just want to make sure he has a good time and it doesn't stress out his body too much. Ya know? I've taken him to several concerts in the last year but it seems his exercise tolerance keeps diminishing with every show.

Thank you!
 
W

WreckingBall

New member
I'm a respiratory therapist who has a friend/patient with CF that I take to rock concerts. We do other things as well but the advice is needed with the concert situation. (I'm going to be as vague as possible so I don't violate any hippa laws). His fev1 is usually in the 30's. He would qualify home o2 (oxygen) but he refuses to wear it out in public because he's tired of people staring already as it is, he doesn't want to add fuel to the fire.

I get extremely anxious in the worst way possible when I take him out in public because it's hard for me to watch someone struggling to breathe. I'm out of my element, I'm used to being in my comfy hospital environment and being confident that I can take care of my patients properly. Plus as many of you know, when a CFer has a coughing fit it's hard for strangers to ignore it, so they end up staring. It drives me batty! They look at him as if he has some horrible disease he's going to spread to the world, or they look out of concern, or they look at me like 'why aren't you helping him?!' so first question, how do you guys handle it, is it something you just get used to with time or do you have suggestions on what I should say? Or just ignore it? I don't want him to feel even more uncomfortable about it so I usually say nothing, sometimes I will say he's fine, and if they still continue to stare I <i>sometimes</i> get a little crappy and will just tell them to stop staring.

Next question and this is why I joined the forum to get ideas from you guys since you know best. The rock concert. It's at an old venue that I do not believe is handicap accessible. It's all one level, except for a small balcony that has a staircase to get to (like I said since it's old I doubt it has an elevator). I asked him if I could take him in a wheelchair, so it will be easier for him. Plus I honestly think it would be very hard on him to stand and walk for that long. He agreed to that except if we stay on the first level he will miss the entire show because it's all one level and he'll be in a wheelchair. We could try to get up front but this is an extremely popular rock group so it will be hard. I've emailed and called this venue to inquire about the balcony, if we can even get up there, and if there is some magical elevator but no one has returned my calls or my emails. So do you guys have any suggestions. I know this sounds weird and I hope I didn't offend anyone but I really will be heart broken if I can't take him and I'm sure he will be very bummed out as well.

I just want to make sure he has a good time and it doesn't stress out his body too much. Ya know? I've taken him to several concerts in the last year but it seems his exercise tolerance keeps diminishing with every show.

Thank you!
 
K

kayleesgrandma

New member
I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...
 
K

kayleesgrandma

New member
I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...
 
K

kayleesgrandma

New member
I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...
 
K

kayleesgrandma

New member
I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...
 
K

kayleesgrandma

New member
I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...
 
K

kayleesgrandma

New member
I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...
 
W

WreckingBall

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

I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...</end quote></div>

You know I tried to do that with the last two bands. I sent them an email telling them about my friend and I said that I could even mail them or fax them "proof" just so they would know I wasn't some crazy fan trying to pull a scam on them. I said if they wanted to meet just him and not me that would be fine too. I never heard back from either one. I really should try one more time though, what's the harm?
 
W

WreckingBall

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

I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...</end quote></div>

You know I tried to do that with the last two bands. I sent them an email telling them about my friend and I said that I could even mail them or fax them "proof" just so they would know I wasn't some crazy fan trying to pull a scam on them. I said if they wanted to meet just him and not me that would be fine too. I never heard back from either one. I really should try one more time though, what's the harm?
 
W

WreckingBall

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

I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...</end quote></div>

You know I tried to do that with the last two bands. I sent them an email telling them about my friend and I said that I could even mail them or fax them "proof" just so they would know I wasn't some crazy fan trying to pull a scam on them. I said if they wanted to meet just him and not me that would be fine too. I never heard back from either one. I really should try one more time though, what's the harm?
 
W

WreckingBall

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

I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...</end quote></div>

You know I tried to do that with the last two bands. I sent them an email telling them about my friend and I said that I could even mail them or fax them "proof" just so they would know I wasn't some crazy fan trying to pull a scam on them. I said if they wanted to meet just him and not me that would be fine too. I never heard back from either one. I really should try one more time though, what's the harm?
 
W

WreckingBall

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

I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...</end quote>

You know I tried to do that with the last two bands. I sent them an email telling them about my friend and I said that I could even mail them or fax them "proof" just so they would know I wasn't some crazy fan trying to pull a scam on them. I said if they wanted to meet just him and not me that would be fine too. I never heard back from either one. I really should try one more time though, what's the harm?
 
W

WreckingBall

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

I don't think I have any good suggestions, but I just wanted to commend you on your care and concern for your friend. You sound like a great friend, with a loving heart...Have you tried getting into contact with this band, and telling them your situation--and what a great fan this friend is of yours? It would be great publicity for the band...Maybe get in contact with the local radio station and tell someone there your problem--maybe you could score a personal meeting with this band!!! Maybe even backstage passes!!! Just dreaming, but it's wortha a try...</end quote>

You know I tried to do that with the last two bands. I sent them an email telling them about my friend and I said that I could even mail them or fax them "proof" just so they would know I wasn't some crazy fan trying to pull a scam on them. I said if they wanted to meet just him and not me that would be fine too. I never heard back from either one. I really should try one more time though, what's the harm?
 
E

Emily65Roses

New member
I'm not trying to be funny here, but can he climb the stairs? People tend to deal with a 30% FEV1 very differently. Some people can barely move, others are taking walks. If he can walk up the stairs and just get it done, you can have him sit and relax until it's time to go home.

As for the building, unless it's been deemed a "historical" building, doesn't it NEED to be handicap accessible? Someone correct me if I'm wrong, but I think that's the law. Has it been declared a historical building, do you know?

Oh and... the wheelchair is liable to make people stare anyway, so can he take the o2 this time? If he can, it might make the stairs a little less horrendous. I mean hell, the chair is going to make them stare, so he might as well be more comfortable and drag along the o2.

I don't know, the whole situation really sucks. As for the coughing and people staring, thanks for being his friend. I hate when people stare. Hate hate hate. If someone wants to politely ask "Is there anything I can do to help?" Or "should we get him out of here?" Or even a timid "I'm sorry, is that contagious?" wouldn't bother me much. As long as it was polite, I'd answer and go about my business. The ridiculous staring though... do people really think that's better than asking??? If you're going to do one or the other no matter what, I suggest asking.

Anyways. I try to be understanding but it's really hard when I'm in public and my regular coughing makes people treat me like I've got the frickin plague. I've even told someone "It's genetic, I'm not contagious" and the guy was still "It still makes you wonder, you should get out of here." I wanted to break his face. Hah. I believe I called him an @sshole right out loud.

I don't know why I went off on that, I'm sorry for rambling. And I don't see at all why you would've offended anyone. I'm glad you're going through so much trouble trying to make your friend comfortable and in hopes to get him to be able to go to the concert. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope it works out for you guys. <img src="i/expressions/heart.gif" border="0">
 
E

Emily65Roses

New member
I'm not trying to be funny here, but can he climb the stairs? People tend to deal with a 30% FEV1 very differently. Some people can barely move, others are taking walks. If he can walk up the stairs and just get it done, you can have him sit and relax until it's time to go home.

As for the building, unless it's been deemed a "historical" building, doesn't it NEED to be handicap accessible? Someone correct me if I'm wrong, but I think that's the law. Has it been declared a historical building, do you know?

Oh and... the wheelchair is liable to make people stare anyway, so can he take the o2 this time? If he can, it might make the stairs a little less horrendous. I mean hell, the chair is going to make them stare, so he might as well be more comfortable and drag along the o2.

I don't know, the whole situation really sucks. As for the coughing and people staring, thanks for being his friend. I hate when people stare. Hate hate hate. If someone wants to politely ask "Is there anything I can do to help?" Or "should we get him out of here?" Or even a timid "I'm sorry, is that contagious?" wouldn't bother me much. As long as it was polite, I'd answer and go about my business. The ridiculous staring though... do people really think that's better than asking??? If you're going to do one or the other no matter what, I suggest asking.

Anyways. I try to be understanding but it's really hard when I'm in public and my regular coughing makes people treat me like I've got the frickin plague. I've even told someone "It's genetic, I'm not contagious" and the guy was still "It still makes you wonder, you should get out of here." I wanted to break his face. Hah. I believe I called him an @sshole right out loud.

I don't know why I went off on that, I'm sorry for rambling. And I don't see at all why you would've offended anyone. I'm glad you're going through so much trouble trying to make your friend comfortable and in hopes to get him to be able to go to the concert. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I hope it works out for you guys. <img src="i/expressions/heart.gif" border="0">
 
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