How do I help?

[Patricia12569]

LaRue,

First I want to say I'm sorry to you and your family. I know when my granddaughter was diagnosed it was hard, but there are some really wonderful people on this site and knowledgeable as well. They have helped me out a great deal. Have you tried getting your daughter in law to sign up on this site? Maybe talking to others that have been where she is at now would help her out. Like you, no one in my family has ever had CF and to be honest with you, when Cheyenne was diagnosed with it I had to look it up on the internet to know what it was.

As for helping, see if your daughter in law will sign up to a forum, look up all you can about CF, and just give lots of support. I am in the same boat as you being a grandmother and my prayers go out to you and yours

 

[Patricia12569]

LaRue,

First I want to say I'm sorry to you and your family. I know when my granddaughter was diagnosed it was hard, but there are some really wonderful people on this site and knowledgeable as well. They have helped me out a great deal. Have you tried getting your daughter in law to sign up on this site? Maybe talking to others that have been where she is at now would help her out. Like you, no one in my family has ever had CF and to be honest with you, when Cheyenne was diagnosed with it I had to look it up on the internet to know what it was.

As for helping, see if your daughter in law will sign up to a forum, look up all you can about CF, and just give lots of support. I am in the same boat as you being a grandmother and my prayers go out to you and yours

 

[Patricia12569]

LaRue,

First I want to say I'm sorry to you and your family. I know when my granddaughter was diagnosed it was hard, but there are some really wonderful people on this site and knowledgeable as well. They have helped me out a great deal. Have you tried getting your daughter in law to sign up on this site? Maybe talking to others that have been where she is at now would help her out. Like you, no one in my family has ever had CF and to be honest with you, when Cheyenne was diagnosed with it I had to look it up on the internet to know what it was.

As for helping, see if your daughter in law will sign up to a forum, look up all you can about CF, and just give lots of support. I am in the same boat as you being a grandmother and my prayers go out to you and yours

 

[Patricia12569]

LaRue,

First I want to say I'm sorry to you and your family. I know when my granddaughter was diagnosed it was hard, but there are some really wonderful people on this site and knowledgeable as well. They have helped me out a great deal. Have you tried getting your daughter in law to sign up on this site? Maybe talking to others that have been where she is at now would help her out. Like you, no one in my family has ever had CF and to be honest with you, when Cheyenne was diagnosed with it I had to look it up on the internet to know what it was.

As for helping, see if your daughter in law will sign up to a forum, look up all you can about CF, and just give lots of support. I am in the same boat as you being a grandmother and my prayers go out to you and yours

 

[Patricia12569]

LaRue,

First I want to say I'm sorry to you and your family. I know when my granddaughter was diagnosed it was hard, but there are some really wonderful people on this site and knowledgeable as well. They have helped me out a great deal. Have you tried getting your daughter in law to sign up on this site? Maybe talking to others that have been where she is at now would help her out. Like you, no one in my family has ever had CF and to be honest with you, when Cheyenne was diagnosed with it I had to look it up on the internet to know what it was.

As for helping, see if your daughter in law will sign up to a forum, look up all you can about CF, and just give lots of support. I am in the same boat as you being a grandmother and my prayers go out to you and yours

 

[SlymJym]

Hey there. I noticed no one mentioned the guilt factor. I'm 36yrs old suffering with CF and I heard and hear my parents to this day apologize for "giving me CF". I keep telling them, "guys, its a gene defect, thats like saying you had a part in selecting the deformation and then inserting it into the gene pool". Sorry, you guys aren't THAT powerful. But, its easy to accept the responsibility as being the owner of the illness since you hear "one of the genes comes from you". Makes it sound like your the one who infected them. Not so. Its like you check your best friend's mail for them and in this mail they have a letter of bad news. Blaming you for delivering it would be foolish, but we humans tend to do that. Its not like you are the originator of the bad news, just the carrier of it. Some people might feel shame with this guilt. I would let them know this isn't their fault. That its ok that this has happened. Sometimes this illness helps me to keep from taken the little things for granted. Like breathing, how trivial that is until its taken away, or worked hard for. Now, just taking a deep breath without coughing is a luxury, or laying on my back for ten minutes without a cough.
To those who get the "well, they don't LOOK sick" I'd say...."Why, thank you, we work so hard to keep them healthy". Trust me, if they can't "see" the illness that means your doing your job right, and the illness doesn't have that person, but THEY have it. I wear an oxygen mask all the time, I am 5'9 at 105lbs so I LOOK sick and am sick. So parents, GPs if those hecklers out there don't believe you, then don't look to them for support. They won't help you anyway. Look to those who see the good work you've done. Also know, I was diagnosed at 3mts old, and back then, there wasn't much hope. I had to stay in a Mist Tent when I was small, and the CPT involved an inverted table. Not good if you just finished breakfast. Now theres this vest, Pulmozyme, TOBI, and Hypertonic Saline? Don't sweat the small stuff, your young people have so much medical technology on their side they stand a great chance of living a very long fruitful life.
The biggest threat is untreated lung infections. Treating these early will avoid lung scarring. Lung scarring leads to decreased immune response. Which will lead to decreased lung capacity if my memory serves me right. Best weapon to fight CF is loving your CF loved one enough to help with them with their treatments, supporting them when they feel down. (please don't lecture them or remind them they have to do this or that....if they're old enough, they are constantly reminded of it.) And help them get as many calories as possible, the more energy they have, the better their immune response is.
Sorry I'm so long winded, but with 35yrs of experience, I want to at least do SOMEthing with it. If I can help in any way please let me know. I hope this helped?

James, dx@3mts, CF, CFRD, Scedosporium, Aspergillus, Mycobacterium

 

[SlymJym]

Hey there. I noticed no one mentioned the guilt factor. I'm 36yrs old suffering with CF and I heard and hear my parents to this day apologize for "giving me CF". I keep telling them, "guys, its a gene defect, thats like saying you had a part in selecting the deformation and then inserting it into the gene pool". Sorry, you guys aren't THAT powerful. But, its easy to accept the responsibility as being the owner of the illness since you hear "one of the genes comes from you". Makes it sound like your the one who infected them. Not so. Its like you check your best friend's mail for them and in this mail they have a letter of bad news. Blaming you for delivering it would be foolish, but we humans tend to do that. Its not like you are the originator of the bad news, just the carrier of it. Some people might feel shame with this guilt. I would let them know this isn't their fault. That its ok that this has happened. Sometimes this illness helps me to keep from taken the little things for granted. Like breathing, how trivial that is until its taken away, or worked hard for. Now, just taking a deep breath without coughing is a luxury, or laying on my back for ten minutes without a cough.
To those who get the "well, they don't LOOK sick" I'd say...."Why, thank you, we work so hard to keep them healthy". Trust me, if they can't "see" the illness that means your doing your job right, and the illness doesn't have that person, but THEY have it. I wear an oxygen mask all the time, I am 5'9 at 105lbs so I LOOK sick and am sick. So parents, GPs if those hecklers out there don't believe you, then don't look to them for support. They won't help you anyway. Look to those who see the good work you've done. Also know, I was diagnosed at 3mts old, and back then, there wasn't much hope. I had to stay in a Mist Tent when I was small, and the CPT involved an inverted table. Not good if you just finished breakfast. Now theres this vest, Pulmozyme, TOBI, and Hypertonic Saline? Don't sweat the small stuff, your young people have so much medical technology on their side they stand a great chance of living a very long fruitful life.
The biggest threat is untreated lung infections. Treating these early will avoid lung scarring. Lung scarring leads to decreased immune response. Which will lead to decreased lung capacity if my memory serves me right. Best weapon to fight CF is loving your CF loved one enough to help with them with their treatments, supporting them when they feel down. (please don't lecture them or remind them they have to do this or that....if they're old enough, they are constantly reminded of it.) And help them get as many calories as possible, the more energy they have, the better their immune response is.
Sorry I'm so long winded, but with 35yrs of experience, I want to at least do SOMEthing with it. If I can help in any way please let me know. I hope this helped?

James, dx@3mts, CF, CFRD, Scedosporium, Aspergillus, Mycobacterium

 

[SlymJym]

Hey there. I noticed no one mentioned the guilt factor. I'm 36yrs old suffering with CF and I heard and hear my parents to this day apologize for "giving me CF". I keep telling them, "guys, its a gene defect, thats like saying you had a part in selecting the deformation and then inserting it into the gene pool". Sorry, you guys aren't THAT powerful. But, its easy to accept the responsibility as being the owner of the illness since you hear "one of the genes comes from you". Makes it sound like your the one who infected them. Not so. Its like you check your best friend's mail for them and in this mail they have a letter of bad news. Blaming you for delivering it would be foolish, but we humans tend to do that. Its not like you are the originator of the bad news, just the carrier of it. Some people might feel shame with this guilt. I would let them know this isn't their fault. That its ok that this has happened. Sometimes this illness helps me to keep from taken the little things for granted. Like breathing, how trivial that is until its taken away, or worked hard for. Now, just taking a deep breath without coughing is a luxury, or laying on my back for ten minutes without a cough.
To those who get the "well, they don't LOOK sick" I'd say...."Why, thank you, we work so hard to keep them healthy". Trust me, if they can't "see" the illness that means your doing your job right, and the illness doesn't have that person, but THEY have it. I wear an oxygen mask all the time, I am 5'9 at 105lbs so I LOOK sick and am sick. So parents, GPs if those hecklers out there don't believe you, then don't look to them for support. They won't help you anyway. Look to those who see the good work you've done. Also know, I was diagnosed at 3mts old, and back then, there wasn't much hope. I had to stay in a Mist Tent when I was small, and the CPT involved an inverted table. Not good if you just finished breakfast. Now theres this vest, Pulmozyme, TOBI, and Hypertonic Saline? Don't sweat the small stuff, your young people have so much medical technology on their side they stand a great chance of living a very long fruitful life.
The biggest threat is untreated lung infections. Treating these early will avoid lung scarring. Lung scarring leads to decreased immune response. Which will lead to decreased lung capacity if my memory serves me right. Best weapon to fight CF is loving your CF loved one enough to help with them with their treatments, supporting them when they feel down. (please don't lecture them or remind them they have to do this or that....if they're old enough, they are constantly reminded of it.) And help them get as many calories as possible, the more energy they have, the better their immune response is.
Sorry I'm so long winded, but with 35yrs of experience, I want to at least do SOMEthing with it. If I can help in any way please let me know. I hope this helped?

James, dx@3mts, CF, CFRD, Scedosporium, Aspergillus, Mycobacterium

 

[SlymJym]

Hey there. I noticed no one mentioned the guilt factor. I'm 36yrs old suffering with CF and I heard and hear my parents to this day apologize for "giving me CF". I keep telling them, "guys, its a gene defect, thats like saying you had a part in selecting the deformation and then inserting it into the gene pool". Sorry, you guys aren't THAT powerful. But, its easy to accept the responsibility as being the owner of the illness since you hear "one of the genes comes from you". Makes it sound like your the one who infected them. Not so. Its like you check your best friend's mail for them and in this mail they have a letter of bad news. Blaming you for delivering it would be foolish, but we humans tend to do that. Its not like you are the originator of the bad news, just the carrier of it. Some people might feel shame with this guilt. I would let them know this isn't their fault. That its ok that this has happened. Sometimes this illness helps me to keep from taken the little things for granted. Like breathing, how trivial that is until its taken away, or worked hard for. Now, just taking a deep breath without coughing is a luxury, or laying on my back for ten minutes without a cough.
To those who get the "well, they don't LOOK sick" I'd say...."Why, thank you, we work so hard to keep them healthy". Trust me, if they can't "see" the illness that means your doing your job right, and the illness doesn't have that person, but THEY have it. I wear an oxygen mask all the time, I am 5'9 at 105lbs so I LOOK sick and am sick. So parents, GPs if those hecklers out there don't believe you, then don't look to them for support. They won't help you anyway. Look to those who see the good work you've done. Also know, I was diagnosed at 3mts old, and back then, there wasn't much hope. I had to stay in a Mist Tent when I was small, and the CPT involved an inverted table. Not good if you just finished breakfast. Now theres this vest, Pulmozyme, TOBI, and Hypertonic Saline? Don't sweat the small stuff, your young people have so much medical technology on their side they stand a great chance of living a very long fruitful life.
The biggest threat is untreated lung infections. Treating these early will avoid lung scarring. Lung scarring leads to decreased immune response. Which will lead to decreased lung capacity if my memory serves me right. Best weapon to fight CF is loving your CF loved one enough to help with them with their treatments, supporting them when they feel down. (please don't lecture them or remind them they have to do this or that....if they're old enough, they are constantly reminded of it.) And help them get as many calories as possible, the more energy they have, the better their immune response is.
Sorry I'm so long winded, but with 35yrs of experience, I want to at least do SOMEthing with it. If I can help in any way please let me know. I hope this helped?

James, dx@3mts, CF, CFRD, Scedosporium, Aspergillus, Mycobacterium

 

[SlymJym]

Hey there. I noticed no one mentioned the guilt factor. I'm 36yrs old suffering with CF and I heard and hear my parents to this day apologize for "giving me CF". I keep telling them, "guys, its a gene defect, thats like saying you had a part in selecting the deformation and then inserting it into the gene pool". Sorry, you guys aren't THAT powerful. But, its easy to accept the responsibility as being the owner of the illness since you hear "one of the genes comes from you". Makes it sound like your the one who infected them. Not so. Its like you check your best friend's mail for them and in this mail they have a letter of bad news. Blaming you for delivering it would be foolish, but we humans tend to do that. Its not like you are the originator of the bad news, just the carrier of it. Some people might feel shame with this guilt. I would let them know this isn't their fault. That its ok that this has happened. Sometimes this illness helps me to keep from taken the little things for granted. Like breathing, how trivial that is until its taken away, or worked hard for. Now, just taking a deep breath without coughing is a luxury, or laying on my back for ten minutes without a cough.
To those who get the "well, they don't LOOK sick" I'd say...."Why, thank you, we work so hard to keep them healthy". Trust me, if they can't "see" the illness that means your doing your job right, and the illness doesn't have that person, but THEY have it. I wear an oxygen mask all the time, I am 5'9 at 105lbs so I LOOK sick and am sick. So parents, GPs if those hecklers out there don't believe you, then don't look to them for support. They won't help you anyway. Look to those who see the good work you've done. Also know, I was diagnosed at 3mts old, and back then, there wasn't much hope. I had to stay in a Mist Tent when I was small, and the CPT involved an inverted table. Not good if you just finished breakfast. Now theres this vest, Pulmozyme, TOBI, and Hypertonic Saline? Don't sweat the small stuff, your young people have so much medical technology on their side they stand a great chance of living a very long fruitful life.
The biggest threat is untreated lung infections. Treating these early will avoid lung scarring. Lung scarring leads to decreased immune response. Which will lead to decreased lung capacity if my memory serves me right. Best weapon to fight CF is loving your CF loved one enough to help with them with their treatments, supporting them when they feel down. (please don't lecture them or remind them they have to do this or that....if they're old enough, they are constantly reminded of it.) And help them get as many calories as possible, the more energy they have, the better their immune response is.
Sorry I'm so long winded, but with 35yrs of experience, I want to at least do SOMEthing with it. If I can help in any way please let me know. I hope this helped?

James, dx@3mts, CF, CFRD, Scedosporium, Aspergillus, Mycobacterium

 

[LThorpe]

Thank you to everyone who responded. You have all definitely given me new insights. If love really helps, then my granddaughter already is ahead of the game. I will continue to try and encourage my DIL to check the forum, but so far she has resisted. She says she is not ready, so I will just be there for her as much as she will let me.
Love and prayers to all of you. Thanks for being there.

 

[LThorpe]

Thank you to everyone who responded. You have all definitely given me new insights. If love really helps, then my granddaughter already is ahead of the game. I will continue to try and encourage my DIL to check the forum, but so far she has resisted. She says she is not ready, so I will just be there for her as much as she will let me.
Love and prayers to all of you. Thanks for being there.

 

[LThorpe]

Thank you to everyone who responded. You have all definitely given me new insights. If love really helps, then my granddaughter already is ahead of the game. I will continue to try and encourage my DIL to check the forum, but so far she has resisted. She says she is not ready, so I will just be there for her as much as she will let me.
Love and prayers to all of you. Thanks for being there.

 

[LThorpe]

Thank you to everyone who responded. You have all definitely given me new insights. If love really helps, then my granddaughter already is ahead of the game. I will continue to try and encourage my DIL to check the forum, but so far she has resisted. She says she is not ready, so I will just be there for her as much as she will let me.
Love and prayers to all of you. Thanks for being there.

 

[LThorpe]

Thank you to everyone who responded. You have all definitely given me new insights. If love really helps, then my granddaughter already is ahead of the game. I will continue to try and encourage my DIL to check the forum, but so far she has resisted. She says she is not ready, so I will just be there for her as much as she will let me.
Love and prayers to all of you. Thanks for being there.

 

[Ratatosk]

When Ds was diagnosed, a couple parents with teens, college aged kids contacted me. One had a daughter going off to college. She was in the hospital having sinus surgery and it was nice to see a normal kid, who seemed to be doing well. Another person who contacted me was soooo depressed and told me horror story after horror story about how terrible the first two year were, in and out of the hospital. Stuff I really didn't want to hear after DS had just spent 6 weeks in the NICU. Her son was doing fine, was also in college and living in the dorms, but talking to her scared the heck out of me. Kept thinking, is this what's going to happen? So I can understand why your DIL would be a little apprehensive about joining. I lurked for a long time before finally joining.

 

[Ratatosk]

When Ds was diagnosed, a couple parents with teens, college aged kids contacted me. One had a daughter going off to college. She was in the hospital having sinus surgery and it was nice to see a normal kid, who seemed to be doing well. Another person who contacted me was soooo depressed and told me horror story after horror story about how terrible the first two year were, in and out of the hospital. Stuff I really didn't want to hear after DS had just spent 6 weeks in the NICU. Her son was doing fine, was also in college and living in the dorms, but talking to her scared the heck out of me. Kept thinking, is this what's going to happen? So I can understand why your DIL would be a little apprehensive about joining. I lurked for a long time before finally joining.

 

[Ratatosk]

When Ds was diagnosed, a couple parents with teens, college aged kids contacted me. One had a daughter going off to college. She was in the hospital having sinus surgery and it was nice to see a normal kid, who seemed to be doing well. Another person who contacted me was soooo depressed and told me horror story after horror story about how terrible the first two year were, in and out of the hospital. Stuff I really didn't want to hear after DS had just spent 6 weeks in the NICU. Her son was doing fine, was also in college and living in the dorms, but talking to her scared the heck out of me. Kept thinking, is this what's going to happen? So I can understand why your DIL would be a little apprehensive about joining. I lurked for a long time before finally joining.

 

[Ratatosk]

When Ds was diagnosed, a couple parents with teens, college aged kids contacted me. One had a daughter going off to college. She was in the hospital having sinus surgery and it was nice to see a normal kid, who seemed to be doing well. Another person who contacted me was soooo depressed and told me horror story after horror story about how terrible the first two year were, in and out of the hospital. Stuff I really didn't want to hear after DS had just spent 6 weeks in the NICU. Her son was doing fine, was also in college and living in the dorms, but talking to her scared the heck out of me. Kept thinking, is this what's going to happen? So I can understand why your DIL would be a little apprehensive about joining. I lurked for a long time before finally joining.

 

[Ratatosk]

When Ds was diagnosed, a couple parents with teens, college aged kids contacted me. One had a daughter going off to college. She was in the hospital having sinus surgery and it was nice to see a normal kid, who seemed to be doing well. Another person who contacted me was soooo depressed and told me horror story after horror story about how terrible the first two year were, in and out of the hospital. Stuff I really didn't want to hear after DS had just spent 6 weeks in the NICU. Her son was doing fine, was also in college and living in the dorms, but talking to her scared the heck out of me. Kept thinking, is this what's going to happen? So I can understand why your DIL would be a little apprehensive about joining. I lurked for a long time before finally joining.