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Mom who could use guidance

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patrish22

Guest
Hi, I'm new to this site and looking forward to those who can share experience. I'm a mom w/3 adult kids w/CF (25 yr old twin daughters and 23 yr old son). One of my daughters is experiencing alot of pain which is making chest pt difficult. She is in the hospital at this time. Her FEV1 is 30 and her liver values are through the roof and her left lung is completely blocked. The docs manage her pain fairly well when she is in the hospital, but not when she is at home. I can see the wincing and the tears in her eyes during chest pt, (either manual or her vest)and its breaking my heart. Her docs told her to go to pain mgnt specialist. Their response was "we don't deal w/CF, go back to your CF team." Her docs say they can't find a reason for the pain. I know its real (as any parent would). Is anyone else out there experiencing this? I would really appreciate any guidance anyone can give.
 
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patrish22

Guest
Hi, I'm new to this site and looking forward to those who can share experience. I'm a mom w/3 adult kids w/CF (25 yr old twin daughters and 23 yr old son). One of my daughters is experiencing alot of pain which is making chest pt difficult. She is in the hospital at this time. Her FEV1 is 30 and her liver values are through the roof and her left lung is completely blocked. The docs manage her pain fairly well when she is in the hospital, but not when she is at home. I can see the wincing and the tears in her eyes during chest pt, (either manual or her vest)and its breaking my heart. Her docs told her to go to pain mgnt specialist. Their response was "we don't deal w/CF, go back to your CF team." Her docs say they can't find a reason for the pain. I know its real (as any parent would). Is anyone else out there experiencing this? I would really appreciate any guidance anyone can give.
 
P

patrish22

Guest
Hi, I'm new to this site and looking forward to those who can share experience. I'm a mom w/3 adult kids w/CF (25 yr old twin daughters and 23 yr old son). One of my daughters is experiencing alot of pain which is making chest pt difficult. She is in the hospital at this time. Her FEV1 is 30 and her liver values are through the roof and her left lung is completely blocked. The docs manage her pain fairly well when she is in the hospital, but not when she is at home. I can see the wincing and the tears in her eyes during chest pt, (either manual or her vest)and its breaking my heart. Her docs told her to go to pain mgnt specialist. Their response was "we don't deal w/CF, go back to your CF team." Her docs say they can't find a reason for the pain. I know its real (as any parent would). Is anyone else out there experiencing this? I would really appreciate any guidance anyone can give.
 
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LouLou

New member
I'm so sorry your daughter is experiencing the pain that she is. There are others on here that experience extreme pain and discuss it. They are also near 30 FEV1. Is your daughter preparing for a transplant? I know the most recent discussion was about what meds you can be on with regards to being listed. You might look back a few pages in threads to read it. I'll dig for it if no one responds. No doubt it's real. I'm glad she has you to help her through this maze of a world cf creates for us.
 
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LouLou

New member
I'm so sorry your daughter is experiencing the pain that she is. There are others on here that experience extreme pain and discuss it. They are also near 30 FEV1. Is your daughter preparing for a transplant? I know the most recent discussion was about what meds you can be on with regards to being listed. You might look back a few pages in threads to read it. I'll dig for it if no one responds. No doubt it's real. I'm glad she has you to help her through this maze of a world cf creates for us.
 
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LouLou

New member
I'm so sorry your daughter is experiencing the pain that she is. There are others on here that experience extreme pain and discuss it. They are also near 30 FEV1. Is your daughter preparing for a transplant? I know the most recent discussion was about what meds you can be on with regards to being listed. You might look back a few pages in threads to read it. I'll dig for it if no one responds. No doubt it's real. I'm glad she has you to help her through this maze of a world cf creates for us.
 
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PinkPigg

New member
Hey there,

Could be pleurisy which can happen during an infection. Pleurisy is a rubbing between the pleural sack around the lungs and the lung wall itself. Google it and you can get more details.

Another possibility is a cracked/broken rib. A broken rib can also cause a pleural effusion where the space between the pleural sack and lung wall fill with fluid. Very painful experience and also can cause shortness of breath. When I had it a significant amount of fluid was present. They drained it and breathing was MUCH easier. Still had the pain from the cracked rib though.

The rib fracture would not necessarily be found on a regular chest x-ray. An x-ray with rib detail might show it however.

Regardless get some good pain meds so your daughter can keep doing her lung clearance.

Peace,
Steph
 
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PinkPigg

New member
Hey there,

Could be pleurisy which can happen during an infection. Pleurisy is a rubbing between the pleural sack around the lungs and the lung wall itself. Google it and you can get more details.

Another possibility is a cracked/broken rib. A broken rib can also cause a pleural effusion where the space between the pleural sack and lung wall fill with fluid. Very painful experience and also can cause shortness of breath. When I had it a significant amount of fluid was present. They drained it and breathing was MUCH easier. Still had the pain from the cracked rib though.

The rib fracture would not necessarily be found on a regular chest x-ray. An x-ray with rib detail might show it however.

Regardless get some good pain meds so your daughter can keep doing her lung clearance.

Peace,
Steph
 
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PinkPigg

New member
Hey there,
<br />
<br />Could be pleurisy which can happen during an infection. Pleurisy is a rubbing between the pleural sack around the lungs and the lung wall itself. Google it and you can get more details.
<br />
<br />Another possibility is a cracked/broken rib. A broken rib can also cause a pleural effusion where the space between the pleural sack and lung wall fill with fluid. Very painful experience and also can cause shortness of breath. When I had it a significant amount of fluid was present. They drained it and breathing was MUCH easier. Still had the pain from the cracked rib though.
<br />
<br />The rib fracture would not necessarily be found on a regular chest x-ray. An x-ray with rib detail might show it however.
<br />
<br />Regardless get some good pain meds so your daughter can keep doing her lung clearance.
<br />
<br />Peace,
<br />Steph
 
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patrish22

Guest
Thank you so much. She and her doctor are discussing transplant, but she has to get her weight up first which she is working on, (5'1" & 90lbs). I will definately research the meds with her. Thanks for being here!
 
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patrish22

Guest
Thank you so much. She and her doctor are discussing transplant, but she has to get her weight up first which she is working on, (5'1" & 90lbs). I will definately research the meds with her. Thanks for being here!
 
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patrish22

Guest
Thank you so much. She and her doctor are discussing transplant, but she has to get her weight up first which she is working on, (5'1" & 90lbs). I will definately research the meds with her. Thanks for being here!
 
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patrish22

Guest
I'm grateful for your reply. When I go to the hospital later I'll discuss this with her. Definately makes sense to me. It blows my mind sometimes that some of the doctors out there don't have these answers. Thank you for your imput, it definately eases my mind!
 
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patrish22

Guest
I'm grateful for your reply. When I go to the hospital later I'll discuss this with her. Definately makes sense to me. It blows my mind sometimes that some of the doctors out there don't have these answers. Thank you for your imput, it definately eases my mind!
 
P

patrish22

Guest
I'm grateful for your reply. When I go to the hospital later I'll discuss this with her. Definately makes sense to me. It blows my mind sometimes that some of the doctors out there don't have these answers. Thank you for your imput, it definately eases my mind!
 
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