I cant stop crying as I write this. 14 years have gone by so fast and I am running all my memories of my daughter Alyssa in my mind so I never forget. Doctors told me that he is hitting a brick wall and does not know what to do anymore. Her Fev1 is not comming up even after a bronch. He says she is clinically a candidate for lung transplant, but CHOP will not accept her because of her "attitude". She was evaluated for lung transplant and 4 psychol.ogists could not "crack" her so they stated. She did not cry, she showed hardly any emotion. I am her mother I know her she is just not that type of kid. She clams up when talking about serious things. She has been hard to handle at time with compliancy but at 14 when you have had a disease all your life sometimes you get sick and tired of doing treatments and just want to be like everyone else. She does not want to die, but I feel lost and helpless. I feel I failed. What can I do to get her numbers back up. I need a freakin miracle. Where is my god now??? I am a person that does not give up and this is killing me.
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Fev1 30's
- Thread starter cbritton
- Start date
I cant stop crying as I write this. 14 years have gone by so fast and I am running all my memories of my daughter Alyssa in my mind so I never forget. Doctors told me that he is hitting a brick wall and does not know what to do anymore. Her Fev1 is not comming up even after a bronch. He says she is clinically a candidate for lung transplant, but CHOP will not accept her because of her "attitude". She was evaluated for lung transplant and 4 psychol.ogists could not "crack" her so they stated. She did not cry, she showed hardly any emotion. I am her mother I know her she is just not that type of kid. She clams up when talking about serious things. She has been hard to handle at time with compliancy but at 14 when you have had a disease all your life sometimes you get sick and tired of doing treatments and just want to be like everyone else. She does not want to die, but I feel lost and helpless. I feel I failed. What can I do to get her numbers back up. I need a freakin miracle. Where is my god now??? I am a person that does not give up and this is killing me.
M
Mommafirst
Guest
I'm so sad to hear this and my heart aches for you and your Alyssa. What does Alyssa want to do? Does she understand the option of transplant and what that might mean? Does she come to this site? Perhaps she would benefit from talking to some of the younger adult CF patients here that have been in her shoes. I know Amber (beautifulsoul) had a transplant at age 16 and is very willing to talk with others about it. Maybe she can connect with Alyssa in a way that those of us without the disease just can't possibly do?
((((HUGS))))) This is impossibly hard. But don't give up yet, if she's going to fight for her life you need to fight too.
((((HUGS))))) This is impossibly hard. But don't give up yet, if she's going to fight for her life you need to fight too.
M
Mommafirst
Guest
I'm so sad to hear this and my heart aches for you and your Alyssa. What does Alyssa want to do? Does she understand the option of transplant and what that might mean? Does she come to this site? Perhaps she would benefit from talking to some of the younger adult CF patients here that have been in her shoes. I know Amber (beautifulsoul) had a transplant at age 16 and is very willing to talk with others about it. Maybe she can connect with Alyssa in a way that those of us without the disease just can't possibly do?
((((HUGS))))) This is impossibly hard. But don't give up yet, if she's going to fight for her life you need to fight too.
((((HUGS))))) This is impossibly hard. But don't give up yet, if she's going to fight for her life you need to fight too.
Incomudrox
New member
CHOP in Philadelphia? Who is her doctor if you don't mind my asking?
Sorry to hear about this, I wish I had something more to contribute.
As far as getting her numbers up there are too many untold variables. Why are they low? Are antibiotics not working? Is she not being compliant? What's the deal? There are things that can help but in order for them to work they actually have to be done and willingly or else it's a lost cause.
Sorry to hear about this, I wish I had something more to contribute.
As far as getting her numbers up there are too many untold variables. Why are they low? Are antibiotics not working? Is she not being compliant? What's the deal? There are things that can help but in order for them to work they actually have to be done and willingly or else it's a lost cause.
Incomudrox
New member
CHOP in Philadelphia? Who is her doctor if you don't mind my asking?
Sorry to hear about this, I wish I had something more to contribute.
As far as getting her numbers up there are too many untold variables. Why are they low? Are antibiotics not working? Is she not being compliant? What's the deal? There are things that can help but in order for them to work they actually have to be done and willingly or else it's a lost cause.
Sorry to hear about this, I wish I had something more to contribute.
As far as getting her numbers up there are too many untold variables. Why are they low? Are antibiotics not working? Is she not being compliant? What's the deal? There are things that can help but in order for them to work they actually have to be done and willingly or else it's a lost cause.
cbritton:
Having 9 nieces (none with CF) who have gone through the teen years I sort of know what you are going through. All 14 year olds know everything that there is to know and you, and all adults, are just plain dumb. Have heart, they do out grow this.
I was disapointed to read "...when you have a disease all of your life sometimes you get sick and tired of doing treatments". Hello, all of us with CF have had this disease "all of our lives". That is not an excuse, not one that you should accept and not one that she should be allowed to express. At age 14 she cannot be allowed to make her own decisions.
None of us like the path in life that we have been given but is our path and we have to live it as best we can. We can make it easier by taking advantage of the meds and treatments that are available to us. Or we can make it much worse by doing the opposite.
I don't know your DD but I do know that she will react to either the "stick or the carrot". You need to stop making excuses for her and get to her psychological weak point. I don't need to tell you that what you do will be critical to her wellbeing. I suspect that a solid dose of tough love may be your answer.
Bill
Having 9 nieces (none with CF) who have gone through the teen years I sort of know what you are going through. All 14 year olds know everything that there is to know and you, and all adults, are just plain dumb. Have heart, they do out grow this.
I was disapointed to read "...when you have a disease all of your life sometimes you get sick and tired of doing treatments". Hello, all of us with CF have had this disease "all of our lives". That is not an excuse, not one that you should accept and not one that she should be allowed to express. At age 14 she cannot be allowed to make her own decisions.
None of us like the path in life that we have been given but is our path and we have to live it as best we can. We can make it easier by taking advantage of the meds and treatments that are available to us. Or we can make it much worse by doing the opposite.
I don't know your DD but I do know that she will react to either the "stick or the carrot". You need to stop making excuses for her and get to her psychological weak point. I don't need to tell you that what you do will be critical to her wellbeing. I suspect that a solid dose of tough love may be your answer.
Bill
cbritton:
Having 9 nieces (none with CF) who have gone through the teen years I sort of know what you are going through. All 14 year olds know everything that there is to know and you, and all adults, are just plain dumb. Have heart, they do out grow this.
I was disapointed to read "...when you have a disease all of your life sometimes you get sick and tired of doing treatments". Hello, all of us with CF have had this disease "all of our lives". That is not an excuse, not one that you should accept and not one that she should be allowed to express. At age 14 she cannot be allowed to make her own decisions.
None of us like the path in life that we have been given but is our path and we have to live it as best we can. We can make it easier by taking advantage of the meds and treatments that are available to us. Or we can make it much worse by doing the opposite.
I don't know your DD but I do know that she will react to either the "stick or the carrot". You need to stop making excuses for her and get to her psychological weak point. I don't need to tell you that what you do will be critical to her wellbeing. I suspect that a solid dose of tough love may be your answer.
Bill
Having 9 nieces (none with CF) who have gone through the teen years I sort of know what you are going through. All 14 year olds know everything that there is to know and you, and all adults, are just plain dumb. Have heart, they do out grow this.
I was disapointed to read "...when you have a disease all of your life sometimes you get sick and tired of doing treatments". Hello, all of us with CF have had this disease "all of our lives". That is not an excuse, not one that you should accept and not one that she should be allowed to express. At age 14 she cannot be allowed to make her own decisions.
None of us like the path in life that we have been given but is our path and we have to live it as best we can. We can make it easier by taking advantage of the meds and treatments that are available to us. Or we can make it much worse by doing the opposite.
I don't know your DD but I do know that she will react to either the "stick or the carrot". You need to stop making excuses for her and get to her psychological weak point. I don't need to tell you that what you do will be critical to her wellbeing. I suspect that a solid dose of tough love may be your answer.
Bill
Sounds like she is depressed, and who wouldn't be? Living with CF is not only difficult physically, it takes a toll on you mentally. I can't even imagine what she feels right now, simply being a teen is hard enough when they are healthy, but throw in severe chronic illness and then you have a whole different ball game. Perhaps she feels hopeless....Do you take her for counseling (to a therapist who has experience with chronically ill children)? You said she clams up when it comes to serious discussion....sounds like maybe she has a little bit of denial or is just having a difficult time handling her progression and has thrown up her hands. Of course, I am just speculating as I don't know your daughter.. I think it would be a good idea for her to communicate with other young CF'ers. She probably feels very alone, CF has a way of doing that as we are discouraged from meeting others face to face.
Please don't give up hope, sit down with her and ask her what she feels about what is happening and what she wants.. If she clams up, just keep at it....something will give. Get her into regular counseling, hopefully she will eventually open up more and perhaps the real issue can be uncovered.....If she is clinically depressed, then perhaps medication along with counseling would be beneficial.
I can't even imagine how powerless you feel with this. As a mom myself, it would tear my heart out to see my child struggle so much. Sending hugs and prayers,
Jenn 40 w/CF
Please don't give up hope, sit down with her and ask her what she feels about what is happening and what she wants.. If she clams up, just keep at it....something will give. Get her into regular counseling, hopefully she will eventually open up more and perhaps the real issue can be uncovered.....If she is clinically depressed, then perhaps medication along with counseling would be beneficial.
I can't even imagine how powerless you feel with this. As a mom myself, it would tear my heart out to see my child struggle so much. Sending hugs and prayers,
Jenn 40 w/CF
Sounds like she is depressed, and who wouldn't be? Living with CF is not only difficult physically, it takes a toll on you mentally. I can't even imagine what she feels right now, simply being a teen is hard enough when they are healthy, but throw in severe chronic illness and then you have a whole different ball game. Perhaps she feels hopeless....Do you take her for counseling (to a therapist who has experience with chronically ill children)? You said she clams up when it comes to serious discussion....sounds like maybe she has a little bit of denial or is just having a difficult time handling her progression and has thrown up her hands. Of course, I am just speculating as I don't know your daughter.. I think it would be a good idea for her to communicate with other young CF'ers. She probably feels very alone, CF has a way of doing that as we are discouraged from meeting others face to face.
Please don't give up hope, sit down with her and ask her what she feels about what is happening and what she wants.. If she clams up, just keep at it....something will give. Get her into regular counseling, hopefully she will eventually open up more and perhaps the real issue can be uncovered.....If she is clinically depressed, then perhaps medication along with counseling would be beneficial.
I can't even imagine how powerless you feel with this. As a mom myself, it would tear my heart out to see my child struggle so much. Sending hugs and prayers,
Jenn 40 w/CF
Please don't give up hope, sit down with her and ask her what she feels about what is happening and what she wants.. If she clams up, just keep at it....something will give. Get her into regular counseling, hopefully she will eventually open up more and perhaps the real issue can be uncovered.....If she is clinically depressed, then perhaps medication along with counseling would be beneficial.
I can't even imagine how powerless you feel with this. As a mom myself, it would tear my heart out to see my child struggle so much. Sending hugs and prayers,
Jenn 40 w/CF
L
littlemisssilly
Guest
Cbritton: I felt really sad reading your post. I wish there was an answer. Has your daughter been assessed or treated for depression? Maybe with the right diagnosis / treatment, her motivation to be more compliant will change? I can only imagine how terrifying it must be at her age to be that ill, I know antidepressants won't 'fix' things but maybe with the right treatment, her ability to engage in CF treatments will improve?
Your daughter has a right to be tired and sick of her CF, it is an awful illness. At 14 and an fev1 of 30, life must be incredibly difficult. I hope you both find some answers.
Your daughter has a right to be tired and sick of her CF, it is an awful illness. At 14 and an fev1 of 30, life must be incredibly difficult. I hope you both find some answers.
L
littlemisssilly
Guest
Cbritton: I felt really sad reading your post. I wish there was an answer. Has your daughter been assessed or treated for depression? Maybe with the right diagnosis / treatment, her motivation to be more compliant will change? I can only imagine how terrifying it must be at her age to be that ill, I know antidepressants won't 'fix' things but maybe with the right treatment, her ability to engage in CF treatments will improve?
Your daughter has a right to be tired and sick of her CF, it is an awful illness. At 14 and an fev1 of 30, life must be incredibly difficult. I hope you both find some answers.
Your daughter has a right to be tired and sick of her CF, it is an awful illness. At 14 and an fev1 of 30, life must be incredibly difficult. I hope you both find some answers.
A lung transplant is a huge deal with pros but LOTS of cons. If she wants it, she's going to have to muster up the gusto to really prove it to them that she wants it. And you are going to have to prove to them that you are in control of your minors healthcare. What needs to be done, shall be done. Are you guys even doing treatments as prescribed right now?
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
A lung transplant is a huge deal with pros but LOTS of cons. If she wants it, she's going to have to muster up the gusto to really prove it to them that she wants it. And you are going to have to prove to them that you are in control of your minors healthcare. What needs to be done, shall be done. Are you guys even doing treatments as prescribed right now?
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
A lung transplant is a huge deal with pros but LOTS of cons. If she wants it, she's going to have to muster up the gusto to really prove it to them that she wants it. And you are going to have to prove to them that you are in control of your minors healthcare. What needs to be done, shall be done. Are you guys even doing treatments as prescribed right now?
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
A lung transplant is a huge deal with pros but LOTS of cons. If she wants it, she's going to have to muster up the gusto to really prove it to them that she wants it. And you are going to have to prove to them that you are in control of your minors healthcare. What needs to be done, shall be done. Are you guys even doing treatments as prescribed right now?
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
Yes, this is sad. But it's more sad to force someone into a major operation that may or may not save them against their will.
T
TonyaH
Guest
I have to agree with Bill on this one. Fourteen is not old enough to make a life decision to just 'stop treating' cf without even trying to be compliant. Hopefully some help from a psychologist will help, but I agree that some tough love is in order here.
It's hard because as parents we are taught to give as much independence to our kids as soon as possible to make transition into adult care easier. However, I feel your case is different...life or death, really. If she wants to exert some independence in other areas of her life, fine. But I think you have to take the reigns here and force her treatments.
As concerned as I am for your daughter, I am also concerned about you. You said you feel that you have 'failed'. Well, trust me, as parents we all have things we wish we had done differently. But we always do what we feel is best for our children at the time. I made a comment on your thread a few days ago that I really don't think non-compliance is the sole cause of fev1 in the 30s for a 14 year old. It sounds like you have quite an infection taking a toll on your daughter's lungs. You are doing the right thing now in realizing that she needs to get in the game to fight this disease. You have the power to force her hand in psychological and medical help. You can do this.
It's hard because as parents we are taught to give as much independence to our kids as soon as possible to make transition into adult care easier. However, I feel your case is different...life or death, really. If she wants to exert some independence in other areas of her life, fine. But I think you have to take the reigns here and force her treatments.
As concerned as I am for your daughter, I am also concerned about you. You said you feel that you have 'failed'. Well, trust me, as parents we all have things we wish we had done differently. But we always do what we feel is best for our children at the time. I made a comment on your thread a few days ago that I really don't think non-compliance is the sole cause of fev1 in the 30s for a 14 year old. It sounds like you have quite an infection taking a toll on your daughter's lungs. You are doing the right thing now in realizing that she needs to get in the game to fight this disease. You have the power to force her hand in psychological and medical help. You can do this.
T
TonyaH
Guest
I have to agree with Bill on this one. Fourteen is not old enough to make a life decision to just 'stop treating' cf without even trying to be compliant. Hopefully some help from a psychologist will help, but I agree that some tough love is in order here.
It's hard because as parents we are taught to give as much independence to our kids as soon as possible to make transition into adult care easier. However, I feel your case is different...life or death, really. If she wants to exert some independence in other areas of her life, fine. But I think you have to take the reigns here and force her treatments.
As concerned as I am for your daughter, I am also concerned about you. You said you feel that you have 'failed'. Well, trust me, as parents we all have things we wish we had done differently. But we always do what we feel is best for our children at the time. I made a comment on your thread a few days ago that I really don't think non-compliance is the sole cause of fev1 in the 30s for a 14 year old. It sounds like you have quite an infection taking a toll on your daughter's lungs. You are doing the right thing now in realizing that she needs to get in the game to fight this disease. You have the power to force her hand in psychological and medical help. You can do this.
It's hard because as parents we are taught to give as much independence to our kids as soon as possible to make transition into adult care easier. However, I feel your case is different...life or death, really. If she wants to exert some independence in other areas of her life, fine. But I think you have to take the reigns here and force her treatments.
As concerned as I am for your daughter, I am also concerned about you. You said you feel that you have 'failed'. Well, trust me, as parents we all have things we wish we had done differently. But we always do what we feel is best for our children at the time. I made a comment on your thread a few days ago that I really don't think non-compliance is the sole cause of fev1 in the 30s for a 14 year old. It sounds like you have quite an infection taking a toll on your daughter's lungs. You are doing the right thing now in realizing that she needs to get in the game to fight this disease. You have the power to force her hand in psychological and medical help. You can do this.