Trying find a mechanical chest percussion device for my cousin with CF.

L

Liza

New member
Does she go to an accredited CF center? If she has been hospitalized 4 times sine being diagnosed just this past May, seems to me the doctor is being lax in his treatment. Is she doing daily breathing treatments? Did she have any percussion while she was in the hospital?

Her parents should ask about percussion and how it should be done. It can be done the old fashioned way, by hand. There are those that still do it that way, some doctors feel this is the "best" CPT (chest percusion therapy, chest physio therapy)a CF'er can get.

If the doctor will give them a prescription for the vest or a mechanical percussor then her insurance co. should pay at least part of it. A social worker or CF coordinator should help with finding out what portion their insurance will pay for a device. At the very least, steer them in the right direction.

How is your cousin doing with her new diagnosis? It is alot to take in at such a young age with so much going on in a teenagers life. There is a young man on the boards here that was diagnosed in his teens as well.

I hope I've been of some help to you today.
 
L

Liza

New member
Does she go to an accredited CF center? If she has been hospitalized 4 times sine being diagnosed just this past May, seems to me the doctor is being lax in his treatment. Is she doing daily breathing treatments? Did she have any percussion while she was in the hospital?

Her parents should ask about percussion and how it should be done. It can be done the old fashioned way, by hand. There are those that still do it that way, some doctors feel this is the "best" CPT (chest percusion therapy, chest physio therapy)a CF'er can get.

If the doctor will give them a prescription for the vest or a mechanical percussor then her insurance co. should pay at least part of it. A social worker or CF coordinator should help with finding out what portion their insurance will pay for a device. At the very least, steer them in the right direction.

How is your cousin doing with her new diagnosis? It is alot to take in at such a young age with so much going on in a teenagers life. There is a young man on the boards here that was diagnosed in his teens as well.

I hope I've been of some help to you today.
 
L

Liza

New member
Does she go to an accredited CF center? If she has been hospitalized 4 times sine being diagnosed just this past May, seems to me the doctor is being lax in his treatment. Is she doing daily breathing treatments? Did she have any percussion while she was in the hospital?

Her parents should ask about percussion and how it should be done. It can be done the old fashioned way, by hand. There are those that still do it that way, some doctors feel this is the "best" CPT (chest percusion therapy, chest physio therapy)a CF'er can get.

If the doctor will give them a prescription for the vest or a mechanical percussor then her insurance co. should pay at least part of it. A social worker or CF coordinator should help with finding out what portion their insurance will pay for a device. At the very least, steer them in the right direction.

How is your cousin doing with her new diagnosis? It is alot to take in at such a young age with so much going on in a teenagers life. There is a young man on the boards here that was diagnosed in his teens as well.

I hope I've been of some help to you today.
 
L

Liza

New member
Does she go to an accredited CF center? If she has been hospitalized 4 times sine being diagnosed just this past May, seems to me the doctor is being lax in his treatment. Is she doing daily breathing treatments? Did she have any percussion while she was in the hospital?

Her parents should ask about percussion and how it should be done. It can be done the old fashioned way, by hand. There are those that still do it that way, some doctors feel this is the "best" CPT (chest percusion therapy, chest physio therapy)a CF'er can get.

If the doctor will give them a prescription for the vest or a mechanical percussor then her insurance co. should pay at least part of it. A social worker or CF coordinator should help with finding out what portion their insurance will pay for a device. At the very least, steer them in the right direction.

How is your cousin doing with her new diagnosis? It is alot to take in at such a young age with so much going on in a teenagers life. There is a young man on the boards here that was diagnosed in his teens as well.

I hope I've been of some help to you today.
 
L

Liza

New member
Does she go to an accredited CF center? If she has been hospitalized 4 times sine being diagnosed just this past May, seems to me the doctor is being lax in his treatment. Is she doing daily breathing treatments? Did she have any percussion while she was in the hospital?
<br />
<br />Her parents should ask about percussion and how it should be done. It can be done the old fashioned way, by hand. There are those that still do it that way, some doctors feel this is the "best" CPT (chest percusion therapy, chest physio therapy)a CF'er can get.
<br />
<br />If the doctor will give them a prescription for the vest or a mechanical percussor then her insurance co. should pay at least part of it. A social worker or CF coordinator should help with finding out what portion their insurance will pay for a device. At the very least, steer them in the right direction.
<br />
<br />How is your cousin doing with her new diagnosis? It is alot to take in at such a young age with so much going on in a teenagers life. There is a young man on the boards here that was diagnosed in his teens as well.
<br />
<br />I hope I've been of some help to you today.
<br />
<br />
 
C

cmcintosh

New member
she does like 3-4 sets of breathing tx a day - pulmazyne and saline. no physio therapy at home but they beat her back and put her in the vest when she's in the hospital. she does go to a credited CF clinic.

we've always known that something was wrong other than just allergies. she is fine with the diagnosis. she's a typical teenager though. my aunt and uncle have to fight her sometimes to get her to do her treatments. but she is getting better. she doesn't like the fact that she has to miss so many volleyball practices and school but she understands. its been extremely hard on my aunt and uncle. my aunt has missed alot of work with her being in the hospital and my uncle is self-employeed. so its hard on them financially also. all the picc lines are rough on her also. they just put in her 4th one and it took them 2 hours to get it in because of all the scar tissue from the other ones and then it clotted off and infiltrated. her arm looks like she was punched a few times. I'm an xray/ct tech and i know that there is absolutely no reason for the way her arm looked.
 
C

cmcintosh

New member
she does like 3-4 sets of breathing tx a day - pulmazyne and saline. no physio therapy at home but they beat her back and put her in the vest when she's in the hospital. she does go to a credited CF clinic.

we've always known that something was wrong other than just allergies. she is fine with the diagnosis. she's a typical teenager though. my aunt and uncle have to fight her sometimes to get her to do her treatments. but she is getting better. she doesn't like the fact that she has to miss so many volleyball practices and school but she understands. its been extremely hard on my aunt and uncle. my aunt has missed alot of work with her being in the hospital and my uncle is self-employeed. so its hard on them financially also. all the picc lines are rough on her also. they just put in her 4th one and it took them 2 hours to get it in because of all the scar tissue from the other ones and then it clotted off and infiltrated. her arm looks like she was punched a few times. I'm an xray/ct tech and i know that there is absolutely no reason for the way her arm looked.
 
C

cmcintosh

New member
she does like 3-4 sets of breathing tx a day - pulmazyne and saline. no physio therapy at home but they beat her back and put her in the vest when she's in the hospital. she does go to a credited CF clinic.

we've always known that something was wrong other than just allergies. she is fine with the diagnosis. she's a typical teenager though. my aunt and uncle have to fight her sometimes to get her to do her treatments. but she is getting better. she doesn't like the fact that she has to miss so many volleyball practices and school but she understands. its been extremely hard on my aunt and uncle. my aunt has missed alot of work with her being in the hospital and my uncle is self-employeed. so its hard on them financially also. all the picc lines are rough on her also. they just put in her 4th one and it took them 2 hours to get it in because of all the scar tissue from the other ones and then it clotted off and infiltrated. her arm looks like she was punched a few times. I'm an xray/ct tech and i know that there is absolutely no reason for the way her arm looked.
 
C

cmcintosh

New member
she does like 3-4 sets of breathing tx a day - pulmazyne and saline. no physio therapy at home but they beat her back and put her in the vest when she's in the hospital. she does go to a credited CF clinic.

we've always known that something was wrong other than just allergies. she is fine with the diagnosis. she's a typical teenager though. my aunt and uncle have to fight her sometimes to get her to do her treatments. but she is getting better. she doesn't like the fact that she has to miss so many volleyball practices and school but she understands. its been extremely hard on my aunt and uncle. my aunt has missed alot of work with her being in the hospital and my uncle is self-employeed. so its hard on them financially also. all the picc lines are rough on her also. they just put in her 4th one and it took them 2 hours to get it in because of all the scar tissue from the other ones and then it clotted off and infiltrated. her arm looks like she was punched a few times. I'm an xray/ct tech and i know that there is absolutely no reason for the way her arm looked.
 
C

cmcintosh

New member
she does like 3-4 sets of breathing tx a day - pulmazyne and saline. no physio therapy at home but they beat her back and put her in the vest when she's in the hospital. she does go to a credited CF clinic.
<br />
<br />we've always known that something was wrong other than just allergies. she is fine with the diagnosis. she's a typical teenager though. my aunt and uncle have to fight her sometimes to get her to do her treatments. but she is getting better. she doesn't like the fact that she has to miss so many volleyball practices and school but she understands. its been extremely hard on my aunt and uncle. my aunt has missed alot of work with her being in the hospital and my uncle is self-employeed. so its hard on them financially also. all the picc lines are rough on her also. they just put in her 4th one and it took them 2 hours to get it in because of all the scar tissue from the other ones and then it clotted off and infiltrated. her arm looks like she was punched a few times. I'm an xray/ct tech and i know that there is absolutely no reason for the way her arm looked.
 
T

Transplantmommy

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

Hi,

I have a cousin with CF. She's 14 and her CF is really getting aggressive. The vibrater vests are like $10,000 and there is no way they can afford that. Does anyone know where we could get a used vest machine or a mechanical percussion machine for her. I believe she would benefit greatly from some chest physical therapy. Thanks.</end quote></div>

Well, I couldn't use the vest because I was allergic to it so I had a percussor. The only down side to that is someone will have to do it on her. We got an Rx from my CF doc and then sent the Rx to a hospital equipment company that we have around here (I live in NY) and we were able to get it through them. You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!

We had the percussor hanging in our bedroom closet and drilled a hole in the floor to thread the hose to go down into the basement and hook the percussor up to the air compressor down there. The air compressor was way too noisy to have it up in our living quarters. This system worked great for me.

I no longer use it since I had my Tx about 19 months ago.
 
T

Transplantmommy

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

Hi,

I have a cousin with CF. She's 14 and her CF is really getting aggressive. The vibrater vests are like $10,000 and there is no way they can afford that. Does anyone know where we could get a used vest machine or a mechanical percussion machine for her. I believe she would benefit greatly from some chest physical therapy. Thanks.</end quote></div>

Well, I couldn't use the vest because I was allergic to it so I had a percussor. The only down side to that is someone will have to do it on her. We got an Rx from my CF doc and then sent the Rx to a hospital equipment company that we have around here (I live in NY) and we were able to get it through them. You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!

We had the percussor hanging in our bedroom closet and drilled a hole in the floor to thread the hose to go down into the basement and hook the percussor up to the air compressor down there. The air compressor was way too noisy to have it up in our living quarters. This system worked great for me.

I no longer use it since I had my Tx about 19 months ago.
 
T

Transplantmommy

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

Hi,

I have a cousin with CF. She's 14 and her CF is really getting aggressive. The vibrater vests are like $10,000 and there is no way they can afford that. Does anyone know where we could get a used vest machine or a mechanical percussion machine for her. I believe she would benefit greatly from some chest physical therapy. Thanks.</end quote></div>

Well, I couldn't use the vest because I was allergic to it so I had a percussor. The only down side to that is someone will have to do it on her. We got an Rx from my CF doc and then sent the Rx to a hospital equipment company that we have around here (I live in NY) and we were able to get it through them. You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!

We had the percussor hanging in our bedroom closet and drilled a hole in the floor to thread the hose to go down into the basement and hook the percussor up to the air compressor down there. The air compressor was way too noisy to have it up in our living quarters. This system worked great for me.

I no longer use it since I had my Tx about 19 months ago.
 
T

Transplantmommy

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

Hi,

I have a cousin with CF. She's 14 and her CF is really getting aggressive. The vibrater vests are like $10,000 and there is no way they can afford that. Does anyone know where we could get a used vest machine or a mechanical percussion machine for her. I believe she would benefit greatly from some chest physical therapy. Thanks.</end quote>

Well, I couldn't use the vest because I was allergic to it so I had a percussor. The only down side to that is someone will have to do it on her. We got an Rx from my CF doc and then sent the Rx to a hospital equipment company that we have around here (I live in NY) and we were able to get it through them. You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!

We had the percussor hanging in our bedroom closet and drilled a hole in the floor to thread the hose to go down into the basement and hook the percussor up to the air compressor down there. The air compressor was way too noisy to have it up in our living quarters. This system worked great for me.

I no longer use it since I had my Tx about 19 months ago.
 
T

Transplantmommy

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cmcintosh</b></i>
<br />
<br />Hi,
<br />
<br />I have a cousin with CF. She's 14 and her CF is really getting aggressive. The vibrater vests are like $10,000 and there is no way they can afford that. Does anyone know where we could get a used vest machine or a mechanical percussion machine for her. I believe she would benefit greatly from some chest physical therapy. Thanks.</end quote>
<br />
<br />Well, I couldn't use the vest because I was allergic to it so I had a percussor. The only down side to that is someone will have to do it on her. We got an Rx from my CF doc and then sent the Rx to a hospital equipment company that we have around here (I live in NY) and we were able to get it through them. You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!
<br />
<br />We had the percussor hanging in our bedroom closet and drilled a hole in the floor to thread the hose to go down into the basement and hook the percussor up to the air compressor down there. The air compressor was way too noisy to have it up in our living quarters. This system worked great for me.
<br />
<br />I no longer use it since I had my Tx about 19 months ago.
 
J

JazzysMom

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

[

You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!



.</end quote></div>

An air compressor? The one I had as a kid was all electric unless we are speaking about 2 different things. The one I had as a kid was like a giant drill with a "cup" attachment that went up & down to do the clapping. You could adjust the speed, but it had to be plugged into an outlet......
 
J

JazzysMom

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

[

You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!



.</end quote></div>

An air compressor? The one I had as a kid was all electric unless we are speaking about 2 different things. The one I had as a kid was like a giant drill with a "cup" attachment that went up & down to do the clapping. You could adjust the speed, but it had to be plugged into an outlet......
 
J

JazzysMom

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

[

You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!



.</end quote></div>

An air compressor? The one I had as a kid was all electric unless we are speaking about 2 different things. The one I had as a kid was like a giant drill with a "cup" attachment that went up & down to do the clapping. You could adjust the speed, but it had to be plugged into an outlet......
 
J

JazzysMom

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

[

You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!



.</end quote>

An air compressor? The one I had as a kid was all electric unless we are speaking about 2 different things. The one I had as a kid was like a giant drill with a "cup" attachment that went up & down to do the clapping. You could adjust the speed, but it had to be plugged into an outlet......
 
J

JazzysMom

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Transplantmommy</b></i>
<br />
<br />[
<br />
<br /> You can't have only that, you also have to buy an air compressor. All together, we spent about $750 on the percussor and the air compressor. Not bad at all!
<br />
<br />
<br />
<br />.</end quote>
<br />
<br />An air compressor? The one I had as a kid was all electric unless we are speaking about 2 different things. The one I had as a kid was like a giant drill with a "cup" attachment that went up & down to do the clapping. You could adjust the speed, but it had to be plugged into an outlet......
 
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