sick w/FEV1 @ 17%

J

j121361

New member
Hi Everyone,
I'm new to Blogging, but have been looking at this site for awhile now, and now I need to talk to others about whats going on and what I should expect physically and emotionally from him, and emotionally from me.

My son Joshua's PFT's have been declining fairly rapidly in the last 2 years, from about 60% down to 40% as of last december.
feb.4th this year,he went in and pft's we're down to 30%, had almost 3wks.iv antibiotics til feb 24th,pft's went to 33%.
on march 11th, went into hospital march 13th with 17% functions and ALOT of very thick and green mucus.

we wont know pft's til the 24th.

His Dr. has told us if we cant get them up to at least 25% by Monday,then he's going to send him for his Tx eval.

2 questions:
#1- to CF'ers w/Tx's, how can I help him through this?
#2- to parents, how did you deal w/the barrage of different emotions?

any help is greatly appreciated<img src="i/expressions/rose.gif" border="0">

Thank You,
Jamie
 
J

j121361

New member
Hi Everyone,
I'm new to Blogging, but have been looking at this site for awhile now, and now I need to talk to others about whats going on and what I should expect physically and emotionally from him, and emotionally from me.

My son Joshua's PFT's have been declining fairly rapidly in the last 2 years, from about 60% down to 40% as of last december.
feb.4th this year,he went in and pft's we're down to 30%, had almost 3wks.iv antibiotics til feb 24th,pft's went to 33%.
on march 11th, went into hospital march 13th with 17% functions and ALOT of very thick and green mucus.

we wont know pft's til the 24th.

His Dr. has told us if we cant get them up to at least 25% by Monday,then he's going to send him for his Tx eval.

2 questions:
#1- to CF'ers w/Tx's, how can I help him through this?
#2- to parents, how did you deal w/the barrage of different emotions?

any help is greatly appreciated<img src="i/expressions/rose.gif" border="0">

Thank You,
Jamie
 
J

j121361

New member
Hi Everyone,
I'm new to Blogging, but have been looking at this site for awhile now, and now I need to talk to others about whats going on and what I should expect physically and emotionally from him, and emotionally from me.

My son Joshua's PFT's have been declining fairly rapidly in the last 2 years, from about 60% down to 40% as of last december.
feb.4th this year,he went in and pft's we're down to 30%, had almost 3wks.iv antibiotics til feb 24th,pft's went to 33%.
on march 11th, went into hospital march 13th with 17% functions and ALOT of very thick and green mucus.

we wont know pft's til the 24th.

His Dr. has told us if we cant get them up to at least 25% by Monday,then he's going to send him for his Tx eval.

2 questions:
#1- to CF'ers w/Tx's, how can I help him through this?
#2- to parents, how did you deal w/the barrage of different emotions?

any help is greatly appreciated<img src="i/expressions/rose.gif" border="0">

Thank You,
Jamie
 
J

j121361

New member
Hi Everyone,
I'm new to Blogging, but have been looking at this site for awhile now, and now I need to talk to others about whats going on and what I should expect physically and emotionally from him, and emotionally from me.

My son Joshua's PFT's have been declining fairly rapidly in the last 2 years, from about 60% down to 40% as of last december.
feb.4th this year,he went in and pft's we're down to 30%, had almost 3wks.iv antibiotics til feb 24th,pft's went to 33%.
on march 11th, went into hospital march 13th with 17% functions and ALOT of very thick and green mucus.

we wont know pft's til the 24th.

His Dr. has told us if we cant get them up to at least 25% by Monday,then he's going to send him for his Tx eval.

2 questions:
#1- to CF'ers w/Tx's, how can I help him through this?
#2- to parents, how did you deal w/the barrage of different emotions?

any help is greatly appreciated<img src="i/expressions/rose.gif" border="0">

Thank You,
Jamie
 
J

j121361

New member
Hi Everyone,
<br />I'm new to Blogging, but have been looking at this site for awhile now, and now I need to talk to others about whats going on and what I should expect physically and emotionally from him, and emotionally from me.
<br />
<br />My son Joshua's PFT's have been declining fairly rapidly in the last 2 years, from about 60% down to 40% as of last december.
<br />feb.4th this year,he went in and pft's we're down to 30%, had almost 3wks.iv antibiotics til feb 24th,pft's went to 33%.
<br />on march 11th, went into hospital march 13th with 17% functions and ALOT of very thick and green mucus.
<br />
<br />we wont know pft's til the 24th.
<br />
<br />His Dr. has told us if we cant get them up to at least 25% by Monday,then he's going to send him for his Tx eval.
<br />
<br />2 questions:
<br />#1- to CF'ers w/Tx's, how can I help him through this?
<br />#2- to parents, how did you deal w/the barrage of different emotions?
<br />
<br />any help is greatly appreciated<img src="i/expressions/rose.gif" border="0">
<br />
<br />Thank You,
<br />Jamie
 
L

Liza

New member
Oh Jamie, I'm so sorry your son is not doing so well. I am a mom of two girls with CF/CFRD. I have one that's 17 and doing really well and one that 20 and had a double lung transplant on July 25th last year. Anna, the 20yr old, had a rapid decline her sophomore year in hs but then did well the rest of her hs years. She went off to college in Aug. 05 and by labor day weekend she was in the hospital with pft's around 21%. They were very worried but she came back after a few weeks and was released to go back to school only to be back in before her follow-up, in for a couple of weeks, out, then right back in a few weeks later. Never making it to her follow-up. By Thanksgiving week we had to withdraw her from school and bring her home. She tried. They did the normal thing, worry that college life had taken it's toll and she wasn't doing things properly. It didn't make much of a difference though, she was in and out of the hospital still but her pft.s would dip into the 30's then pop back up to the 40-50 but not for long. UP/DOWN. I"m sure you know. She wanted to try school again in the fall of 06. So back she went. No difference, it happened again, IN/OUT. By Thanksgiving week once again, we withdrew her from school and brought her home. By this time she'd already started looking into transplant and where she'd want to go when it came time. She was already scheduled for an eval. at Stanford,(she went to school in NE we live in TX). Her pft's were around 32 then. At her eval. she'd just and I mean JUST finished a round of IV antibiotics and her pfts were up to 42. Too healthy they said. Not ready yet. They looked at quality of life, repeated hospitalizations, doctors notes etc. So home we went with an appt. scheduled for March for a re-eval. This was the week after Thanksgiving, by Christmas she was feeling badly again, and in hospital on New Year's Day. This time her pfts. wouldn't get any higher than 27, after 3wks of IV in hospital. Stanford said for her to come back ASAP. She was listed on Feb. 17th.

I described what went on with her because when we look back it seems like it happened so fast, yet it didn't really. It took her first two years of college before she was ready for tx. Emotionally Jaimie it's hard to see your child suffer, you know that. But you have to be strong for them, at least in front of them. I think they have so many emotions going on themselves that lettting them see your pain too much would make matters harder for them. I don't know whether you are a religious person or not but for me, praying. I admit, I don't go to church every single week but I try. I didn't want you to think I was someone who is going to preach to you. I'm not. But I do believe that prayer helps. I "talked" to HIM. ALOT! Repeatedly sometimes it seemed. That is what helped me through the waiting. Even before she was even listed. I'd hear her coughing upstairs and while I waited sometimes to see if it was going to calm down or if I needed to get up I'd pray. It helped keep me from crying. While she and I waited in CA, I did ALOT more. At night when she was sleeping. I had left my husband and other daughter back home and it was just her and I, alone. You will need something, someone to lean on. It can be a long road.

This is the most wonderful place to come to. If it weren't for this forum I'm not so sure I"d have made it through. Please do come back and share with us. Keep us posted on how your son is doing, how you are doing. I notice you are in Missouri, I hope you are keeping dry and are in no danger from the flooding.

I hope I didn't ramble on too much. I can do that sometimes.
 
L

Liza

New member
Oh Jamie, I'm so sorry your son is not doing so well. I am a mom of two girls with CF/CFRD. I have one that's 17 and doing really well and one that 20 and had a double lung transplant on July 25th last year. Anna, the 20yr old, had a rapid decline her sophomore year in hs but then did well the rest of her hs years. She went off to college in Aug. 05 and by labor day weekend she was in the hospital with pft's around 21%. They were very worried but she came back after a few weeks and was released to go back to school only to be back in before her follow-up, in for a couple of weeks, out, then right back in a few weeks later. Never making it to her follow-up. By Thanksgiving week we had to withdraw her from school and bring her home. She tried. They did the normal thing, worry that college life had taken it's toll and she wasn't doing things properly. It didn't make much of a difference though, she was in and out of the hospital still but her pft.s would dip into the 30's then pop back up to the 40-50 but not for long. UP/DOWN. I"m sure you know. She wanted to try school again in the fall of 06. So back she went. No difference, it happened again, IN/OUT. By Thanksgiving week once again, we withdrew her from school and brought her home. By this time she'd already started looking into transplant and where she'd want to go when it came time. She was already scheduled for an eval. at Stanford,(she went to school in NE we live in TX). Her pft's were around 32 then. At her eval. she'd just and I mean JUST finished a round of IV antibiotics and her pfts were up to 42. Too healthy they said. Not ready yet. They looked at quality of life, repeated hospitalizations, doctors notes etc. So home we went with an appt. scheduled for March for a re-eval. This was the week after Thanksgiving, by Christmas she was feeling badly again, and in hospital on New Year's Day. This time her pfts. wouldn't get any higher than 27, after 3wks of IV in hospital. Stanford said for her to come back ASAP. She was listed on Feb. 17th.

I described what went on with her because when we look back it seems like it happened so fast, yet it didn't really. It took her first two years of college before she was ready for tx. Emotionally Jaimie it's hard to see your child suffer, you know that. But you have to be strong for them, at least in front of them. I think they have so many emotions going on themselves that lettting them see your pain too much would make matters harder for them. I don't know whether you are a religious person or not but for me, praying. I admit, I don't go to church every single week but I try. I didn't want you to think I was someone who is going to preach to you. I'm not. But I do believe that prayer helps. I "talked" to HIM. ALOT! Repeatedly sometimes it seemed. That is what helped me through the waiting. Even before she was even listed. I'd hear her coughing upstairs and while I waited sometimes to see if it was going to calm down or if I needed to get up I'd pray. It helped keep me from crying. While she and I waited in CA, I did ALOT more. At night when she was sleeping. I had left my husband and other daughter back home and it was just her and I, alone. You will need something, someone to lean on. It can be a long road.

This is the most wonderful place to come to. If it weren't for this forum I'm not so sure I"d have made it through. Please do come back and share with us. Keep us posted on how your son is doing, how you are doing. I notice you are in Missouri, I hope you are keeping dry and are in no danger from the flooding.

I hope I didn't ramble on too much. I can do that sometimes.
 
L

Liza

New member
Oh Jamie, I'm so sorry your son is not doing so well. I am a mom of two girls with CF/CFRD. I have one that's 17 and doing really well and one that 20 and had a double lung transplant on July 25th last year. Anna, the 20yr old, had a rapid decline her sophomore year in hs but then did well the rest of her hs years. She went off to college in Aug. 05 and by labor day weekend she was in the hospital with pft's around 21%. They were very worried but she came back after a few weeks and was released to go back to school only to be back in before her follow-up, in for a couple of weeks, out, then right back in a few weeks later. Never making it to her follow-up. By Thanksgiving week we had to withdraw her from school and bring her home. She tried. They did the normal thing, worry that college life had taken it's toll and she wasn't doing things properly. It didn't make much of a difference though, she was in and out of the hospital still but her pft.s would dip into the 30's then pop back up to the 40-50 but not for long. UP/DOWN. I"m sure you know. She wanted to try school again in the fall of 06. So back she went. No difference, it happened again, IN/OUT. By Thanksgiving week once again, we withdrew her from school and brought her home. By this time she'd already started looking into transplant and where she'd want to go when it came time. She was already scheduled for an eval. at Stanford,(she went to school in NE we live in TX). Her pft's were around 32 then. At her eval. she'd just and I mean JUST finished a round of IV antibiotics and her pfts were up to 42. Too healthy they said. Not ready yet. They looked at quality of life, repeated hospitalizations, doctors notes etc. So home we went with an appt. scheduled for March for a re-eval. This was the week after Thanksgiving, by Christmas she was feeling badly again, and in hospital on New Year's Day. This time her pfts. wouldn't get any higher than 27, after 3wks of IV in hospital. Stanford said for her to come back ASAP. She was listed on Feb. 17th.

I described what went on with her because when we look back it seems like it happened so fast, yet it didn't really. It took her first two years of college before she was ready for tx. Emotionally Jaimie it's hard to see your child suffer, you know that. But you have to be strong for them, at least in front of them. I think they have so many emotions going on themselves that lettting them see your pain too much would make matters harder for them. I don't know whether you are a religious person or not but for me, praying. I admit, I don't go to church every single week but I try. I didn't want you to think I was someone who is going to preach to you. I'm not. But I do believe that prayer helps. I "talked" to HIM. ALOT! Repeatedly sometimes it seemed. That is what helped me through the waiting. Even before she was even listed. I'd hear her coughing upstairs and while I waited sometimes to see if it was going to calm down or if I needed to get up I'd pray. It helped keep me from crying. While she and I waited in CA, I did ALOT more. At night when she was sleeping. I had left my husband and other daughter back home and it was just her and I, alone. You will need something, someone to lean on. It can be a long road.

This is the most wonderful place to come to. If it weren't for this forum I'm not so sure I"d have made it through. Please do come back and share with us. Keep us posted on how your son is doing, how you are doing. I notice you are in Missouri, I hope you are keeping dry and are in no danger from the flooding.

I hope I didn't ramble on too much. I can do that sometimes.
 
L

Liza

New member
Oh Jamie, I'm so sorry your son is not doing so well. I am a mom of two girls with CF/CFRD. I have one that's 17 and doing really well and one that 20 and had a double lung transplant on July 25th last year. Anna, the 20yr old, had a rapid decline her sophomore year in hs but then did well the rest of her hs years. She went off to college in Aug. 05 and by labor day weekend she was in the hospital with pft's around 21%. They were very worried but she came back after a few weeks and was released to go back to school only to be back in before her follow-up, in for a couple of weeks, out, then right back in a few weeks later. Never making it to her follow-up. By Thanksgiving week we had to withdraw her from school and bring her home. She tried. They did the normal thing, worry that college life had taken it's toll and she wasn't doing things properly. It didn't make much of a difference though, she was in and out of the hospital still but her pft.s would dip into the 30's then pop back up to the 40-50 but not for long. UP/DOWN. I"m sure you know. She wanted to try school again in the fall of 06. So back she went. No difference, it happened again, IN/OUT. By Thanksgiving week once again, we withdrew her from school and brought her home. By this time she'd already started looking into transplant and where she'd want to go when it came time. She was already scheduled for an eval. at Stanford,(she went to school in NE we live in TX). Her pft's were around 32 then. At her eval. she'd just and I mean JUST finished a round of IV antibiotics and her pfts were up to 42. Too healthy they said. Not ready yet. They looked at quality of life, repeated hospitalizations, doctors notes etc. So home we went with an appt. scheduled for March for a re-eval. This was the week after Thanksgiving, by Christmas she was feeling badly again, and in hospital on New Year's Day. This time her pfts. wouldn't get any higher than 27, after 3wks of IV in hospital. Stanford said for her to come back ASAP. She was listed on Feb. 17th.

I described what went on with her because when we look back it seems like it happened so fast, yet it didn't really. It took her first two years of college before she was ready for tx. Emotionally Jaimie it's hard to see your child suffer, you know that. But you have to be strong for them, at least in front of them. I think they have so many emotions going on themselves that lettting them see your pain too much would make matters harder for them. I don't know whether you are a religious person or not but for me, praying. I admit, I don't go to church every single week but I try. I didn't want you to think I was someone who is going to preach to you. I'm not. But I do believe that prayer helps. I "talked" to HIM. ALOT! Repeatedly sometimes it seemed. That is what helped me through the waiting. Even before she was even listed. I'd hear her coughing upstairs and while I waited sometimes to see if it was going to calm down or if I needed to get up I'd pray. It helped keep me from crying. While she and I waited in CA, I did ALOT more. At night when she was sleeping. I had left my husband and other daughter back home and it was just her and I, alone. You will need something, someone to lean on. It can be a long road.

This is the most wonderful place to come to. If it weren't for this forum I'm not so sure I"d have made it through. Please do come back and share with us. Keep us posted on how your son is doing, how you are doing. I notice you are in Missouri, I hope you are keeping dry and are in no danger from the flooding.

I hope I didn't ramble on too much. I can do that sometimes.
 
L

Liza

New member
Oh Jamie, I'm so sorry your son is not doing so well. I am a mom of two girls with CF/CFRD. I have one that's 17 and doing really well and one that 20 and had a double lung transplant on July 25th last year. Anna, the 20yr old, had a rapid decline her sophomore year in hs but then did well the rest of her hs years. She went off to college in Aug. 05 and by labor day weekend she was in the hospital with pft's around 21%. They were very worried but she came back after a few weeks and was released to go back to school only to be back in before her follow-up, in for a couple of weeks, out, then right back in a few weeks later. Never making it to her follow-up. By Thanksgiving week we had to withdraw her from school and bring her home. She tried. They did the normal thing, worry that college life had taken it's toll and she wasn't doing things properly. It didn't make much of a difference though, she was in and out of the hospital still but her pft.s would dip into the 30's then pop back up to the 40-50 but not for long. UP/DOWN. I"m sure you know. She wanted to try school again in the fall of 06. So back she went. No difference, it happened again, IN/OUT. By Thanksgiving week once again, we withdrew her from school and brought her home. By this time she'd already started looking into transplant and where she'd want to go when it came time. She was already scheduled for an eval. at Stanford,(she went to school in NE we live in TX). Her pft's were around 32 then. At her eval. she'd just and I mean JUST finished a round of IV antibiotics and her pfts were up to 42. Too healthy they said. Not ready yet. They looked at quality of life, repeated hospitalizations, doctors notes etc. So home we went with an appt. scheduled for March for a re-eval. This was the week after Thanksgiving, by Christmas she was feeling badly again, and in hospital on New Year's Day. This time her pfts. wouldn't get any higher than 27, after 3wks of IV in hospital. Stanford said for her to come back ASAP. She was listed on Feb. 17th.
<br />
<br />I described what went on with her because when we look back it seems like it happened so fast, yet it didn't really. It took her first two years of college before she was ready for tx. Emotionally Jaimie it's hard to see your child suffer, you know that. But you have to be strong for them, at least in front of them. I think they have so many emotions going on themselves that lettting them see your pain too much would make matters harder for them. I don't know whether you are a religious person or not but for me, praying. I admit, I don't go to church every single week but I try. I didn't want you to think I was someone who is going to preach to you. I'm not. But I do believe that prayer helps. I "talked" to HIM. ALOT! Repeatedly sometimes it seemed. That is what helped me through the waiting. Even before she was even listed. I'd hear her coughing upstairs and while I waited sometimes to see if it was going to calm down or if I needed to get up I'd pray. It helped keep me from crying. While she and I waited in CA, I did ALOT more. At night when she was sleeping. I had left my husband and other daughter back home and it was just her and I, alone. You will need something, someone to lean on. It can be a long road.
<br />
<br />This is the most wonderful place to come to. If it weren't for this forum I'm not so sure I"d have made it through. Please do come back and share with us. Keep us posted on how your son is doing, how you are doing. I notice you are in Missouri, I hope you are keeping dry and are in no danger from the flooding.
<br />
<br />I hope I didn't ramble on too much. I can do that sometimes.
<br />
<br />
<br />
<br />
 
B

bittyhorse23

New member
I don't have any advice either but I wanted to tell you I will keep you and your family in my thoughts and prayers.

(((HUGS)))

<img src="i/expressions/heart.gif" border="0">
 
B

bittyhorse23

New member
I don't have any advice either but I wanted to tell you I will keep you and your family in my thoughts and prayers.

(((HUGS)))

<img src="i/expressions/heart.gif" border="0">
 
B

bittyhorse23

New member
I don't have any advice either but I wanted to tell you I will keep you and your family in my thoughts and prayers.

(((HUGS)))

<img src="i/expressions/heart.gif" border="0">
 
B

bittyhorse23

New member
I don't have any advice either but I wanted to tell you I will keep you and your family in my thoughts and prayers.

(((HUGS)))

<img src="i/expressions/heart.gif" border="0">
 
B

bittyhorse23

New member
I don't have any advice either but I wanted to tell you I will keep you and your family in my thoughts and prayers.
<br />
<br />(((HUGS)))
<br />
<br /><img src="i/expressions/heart.gif" border="0">
 
You must log in or register to reply here.
Top