update

rubyroselee

New member
Hi again,

I had my clinic appt on Tues. Things weren't so great. My PFTs are down 25% (from 90% to 65%) and my weight is down 17 lbs since prior to being pregnant.

My doctor wasn't too concerned being that he sees a lot of his CF mothers lose some lung function after having a baby and it rebounds. He wants me to followup in a month and see where my PFTs are then.

I remember a few of you having problems with decreased PFTs after having a baby. Any advice?

I'm really worried about having to do that with the babies because that means we'll have to be out of work even longer. Financially we need to be going back to work, but I guess we have to do what we have to do. I will stay out of work longer if I have to because I know my boss will be completely understanding if I need more time. It will definitely be hard once DW goes back to work in a couple weeks.

Gavin is still colicky...he was up crying for several hours last night and we couldn't get to sleep because of it.

I know it will get better though...I'm just hanging in there...
 

rubyroselee

New member
Hi again,

I had my clinic appt on Tues. Things weren't so great. My PFTs are down 25% (from 90% to 65%) and my weight is down 17 lbs since prior to being pregnant.

My doctor wasn't too concerned being that he sees a lot of his CF mothers lose some lung function after having a baby and it rebounds. He wants me to followup in a month and see where my PFTs are then.

I remember a few of you having problems with decreased PFTs after having a baby. Any advice?

I'm really worried about having to do that with the babies because that means we'll have to be out of work even longer. Financially we need to be going back to work, but I guess we have to do what we have to do. I will stay out of work longer if I have to because I know my boss will be completely understanding if I need more time. It will definitely be hard once DW goes back to work in a couple weeks.

Gavin is still colicky...he was up crying for several hours last night and we couldn't get to sleep because of it.

I know it will get better though...I'm just hanging in there...
 

rubyroselee

New member
Hi again,

I had my clinic appt on Tues. Things weren't so great. My PFTs are down 25% (from 90% to 65%) and my weight is down 17 lbs since prior to being pregnant.

My doctor wasn't too concerned being that he sees a lot of his CF mothers lose some lung function after having a baby and it rebounds. He wants me to followup in a month and see where my PFTs are then.

I remember a few of you having problems with decreased PFTs after having a baby. Any advice?

I'm really worried about having to do that with the babies because that means we'll have to be out of work even longer. Financially we need to be going back to work, but I guess we have to do what we have to do. I will stay out of work longer if I have to because I know my boss will be completely understanding if I need more time. It will definitely be hard once DW goes back to work in a couple weeks.

Gavin is still colicky...he was up crying for several hours last night and we couldn't get to sleep because of it.

I know it will get better though...I'm just hanging in there...
 

rubyroselee

New member
Hi again,

I had my clinic appt on Tues. Things weren't so great. My PFTs are down 25% (from 90% to 65%) and my weight is down 17 lbs since prior to being pregnant.

My doctor wasn't too concerned being that he sees a lot of his CF mothers lose some lung function after having a baby and it rebounds. He wants me to followup in a month and see where my PFTs are then.

I remember a few of you having problems with decreased PFTs after having a baby. Any advice?

I'm really worried about having to do that with the babies because that means we'll have to be out of work even longer. Financially we need to be going back to work, but I guess we have to do what we have to do. I will stay out of work longer if I have to because I know my boss will be completely understanding if I need more time. It will definitely be hard once DW goes back to work in a couple weeks.

Gavin is still colicky...he was up crying for several hours last night and we couldn't get to sleep because of it.

I know it will get better though...I'm just hanging in there...
 

rubyroselee

New member
Hi again,
<br />
<br />I had my clinic appt on Tues. Things weren't so great. My PFTs are down 25% (from 90% to 65%) and my weight is down 17 lbs since prior to being pregnant.
<br />
<br />My doctor wasn't too concerned being that he sees a lot of his CF mothers lose some lung function after having a baby and it rebounds. He wants me to followup in a month and see where my PFTs are then.
<br />
<br />I remember a few of you having problems with decreased PFTs after having a baby. Any advice?
<br />
<br />I'm really worried about having to do that with the babies because that means we'll have to be out of work even longer. Financially we need to be going back to work, but I guess we have to do what we have to do. I will stay out of work longer if I have to because I know my boss will be completely understanding if I need more time. It will definitely be hard once DW goes back to work in a couple weeks.
<br />
<br />Gavin is still colicky...he was up crying for several hours last night and we couldn't get to sleep because of it.
<br />
<br />I know it will get better though...I'm just hanging in there...
 

hbollotte

New member
i was at 79% before having morgan and i dipped way down to 47%. i stopped breastfeeding and had a round of iv's, that brought it right back up. since that its gone down to 57% but i brough that back up with oral antibiotics.

things will work out. right now dh and i are having a hard time because his prescription insurance is horrible. we are having to pay $1200 out of pocket because his insurance ony pays 70%. we applied for patient asstistance so hopefully they help out.
 

hbollotte

New member
i was at 79% before having morgan and i dipped way down to 47%. i stopped breastfeeding and had a round of iv's, that brought it right back up. since that its gone down to 57% but i brough that back up with oral antibiotics.

things will work out. right now dh and i are having a hard time because his prescription insurance is horrible. we are having to pay $1200 out of pocket because his insurance ony pays 70%. we applied for patient asstistance so hopefully they help out.
 

hbollotte

New member
i was at 79% before having morgan and i dipped way down to 47%. i stopped breastfeeding and had a round of iv's, that brought it right back up. since that its gone down to 57% but i brough that back up with oral antibiotics.

things will work out. right now dh and i are having a hard time because his prescription insurance is horrible. we are having to pay $1200 out of pocket because his insurance ony pays 70%. we applied for patient asstistance so hopefully they help out.
 

hbollotte

New member
i was at 79% before having morgan and i dipped way down to 47%. i stopped breastfeeding and had a round of iv's, that brought it right back up. since that its gone down to 57% but i brough that back up with oral antibiotics.

things will work out. right now dh and i are having a hard time because his prescription insurance is horrible. we are having to pay $1200 out of pocket because his insurance ony pays 70%. we applied for patient asstistance so hopefully they help out.
 

hbollotte

New member
i was at 79% before having morgan and i dipped way down to 47%. i stopped breastfeeding and had a round of iv's, that brought it right back up. since that its gone down to 57% but i brough that back up with oral antibiotics.
<br />
<br />things will work out. right now dh and i are having a hard time because his prescription insurance is horrible. we are having to pay $1200 out of pocket because his insurance ony pays 70%. we applied for patient asstistance so hopefully they help out.
 

tinamarie4685

New member
I'm really thinking I might need a round of IV's .. I'm on oral meds still, and everytime I stop them I get sick. I just stopped prednisone (20mg) because I wasnt "tight" or short of breath anymore... but I am still on Zyvox + Cipro because I cultured out PA & MRSA.. well I ran out of Zyvox and haven't had any for 3 days (waiting for stupid prior authorization from insurance) and I'm coughing my brains out everynight and my sputum is disgusting. Last night I was up from 3am until 7am coughing, doing albuterol which didnt help AT ALL, and then I finally fell asleep around 7:15 i think and Brianna woke at 8am to start her day while Kenny worked 7am-7pm. It's SOOOOOOOOOO hard feeling like sh*t, being tired from coughing fits, and raising a 3 month old baby getting over colic and still has acid reflux.

Going to the ENT tomorrow also because my sinuses are all messed up - polyps, all that lovely stuff.. so I will be finding out when I am going to be getting sinus surgery.

I know I am so lucky to have been able to have a baby, get pregnant with no problems, but c'mon.... can't I get a freakin' break?! I was sick throughout my pregnancy and for ONCE i would just like to feel "okay".. I wish we could all just feel good. I really, really can't stand CF.. I was in tears today reading a book to Brianna (Love You Forever) because it was about how the mommy grew to be old and got sick and how her "baby" grew to be a grown man and then took care of his mommy. I'm sure some of you know this book <img src="i/expressions/face-icon-small-smile.gif" border="0"> But anyways, I just lost it and started hysterical crying and Brianna was looking at me like I was nuts (she has never seen me cry). Damn hormones (i think) .. but it just made me so sad to think that I might not live to be an old lady.... okay this post is getting way too long and I'm all emotional, so off to bed I go.

That was my vent for the night!

Leah - just try to hang in there and like I am doing, take all the help you can get!! I hope you start getting better soon.. really, I know how you feel. My PFT's went down now too, and Brianna JUST reached her 3 month mark and is still colicky, with acid reflux... I FEEL YOUR PAIN.

You can e-mail me at tina12707@yahoo.com or send me a private message anytime if you need any advice on colic, Kenny & I have a few tricks we have discovered throughout the months!!

Goodnight ladies... you all are my heroes. Seriously. Thanks for letting me vent!!!!!!!!!
 

tinamarie4685

New member
I'm really thinking I might need a round of IV's .. I'm on oral meds still, and everytime I stop them I get sick. I just stopped prednisone (20mg) because I wasnt "tight" or short of breath anymore... but I am still on Zyvox + Cipro because I cultured out PA & MRSA.. well I ran out of Zyvox and haven't had any for 3 days (waiting for stupid prior authorization from insurance) and I'm coughing my brains out everynight and my sputum is disgusting. Last night I was up from 3am until 7am coughing, doing albuterol which didnt help AT ALL, and then I finally fell asleep around 7:15 i think and Brianna woke at 8am to start her day while Kenny worked 7am-7pm. It's SOOOOOOOOOO hard feeling like sh*t, being tired from coughing fits, and raising a 3 month old baby getting over colic and still has acid reflux.

Going to the ENT tomorrow also because my sinuses are all messed up - polyps, all that lovely stuff.. so I will be finding out when I am going to be getting sinus surgery.

I know I am so lucky to have been able to have a baby, get pregnant with no problems, but c'mon.... can't I get a freakin' break?! I was sick throughout my pregnancy and for ONCE i would just like to feel "okay".. I wish we could all just feel good. I really, really can't stand CF.. I was in tears today reading a book to Brianna (Love You Forever) because it was about how the mommy grew to be old and got sick and how her "baby" grew to be a grown man and then took care of his mommy. I'm sure some of you know this book <img src="i/expressions/face-icon-small-smile.gif" border="0"> But anyways, I just lost it and started hysterical crying and Brianna was looking at me like I was nuts (she has never seen me cry). Damn hormones (i think) .. but it just made me so sad to think that I might not live to be an old lady.... okay this post is getting way too long and I'm all emotional, so off to bed I go.

That was my vent for the night!

Leah - just try to hang in there and like I am doing, take all the help you can get!! I hope you start getting better soon.. really, I know how you feel. My PFT's went down now too, and Brianna JUST reached her 3 month mark and is still colicky, with acid reflux... I FEEL YOUR PAIN.

You can e-mail me at tina12707@yahoo.com or send me a private message anytime if you need any advice on colic, Kenny & I have a few tricks we have discovered throughout the months!!

Goodnight ladies... you all are my heroes. Seriously. Thanks for letting me vent!!!!!!!!!
 

tinamarie4685

New member
I'm really thinking I might need a round of IV's .. I'm on oral meds still, and everytime I stop them I get sick. I just stopped prednisone (20mg) because I wasnt "tight" or short of breath anymore... but I am still on Zyvox + Cipro because I cultured out PA & MRSA.. well I ran out of Zyvox and haven't had any for 3 days (waiting for stupid prior authorization from insurance) and I'm coughing my brains out everynight and my sputum is disgusting. Last night I was up from 3am until 7am coughing, doing albuterol which didnt help AT ALL, and then I finally fell asleep around 7:15 i think and Brianna woke at 8am to start her day while Kenny worked 7am-7pm. It's SOOOOOOOOOO hard feeling like sh*t, being tired from coughing fits, and raising a 3 month old baby getting over colic and still has acid reflux.

Going to the ENT tomorrow also because my sinuses are all messed up - polyps, all that lovely stuff.. so I will be finding out when I am going to be getting sinus surgery.

I know I am so lucky to have been able to have a baby, get pregnant with no problems, but c'mon.... can't I get a freakin' break?! I was sick throughout my pregnancy and for ONCE i would just like to feel "okay".. I wish we could all just feel good. I really, really can't stand CF.. I was in tears today reading a book to Brianna (Love You Forever) because it was about how the mommy grew to be old and got sick and how her "baby" grew to be a grown man and then took care of his mommy. I'm sure some of you know this book <img src="i/expressions/face-icon-small-smile.gif" border="0"> But anyways, I just lost it and started hysterical crying and Brianna was looking at me like I was nuts (she has never seen me cry). Damn hormones (i think) .. but it just made me so sad to think that I might not live to be an old lady.... okay this post is getting way too long and I'm all emotional, so off to bed I go.

That was my vent for the night!

Leah - just try to hang in there and like I am doing, take all the help you can get!! I hope you start getting better soon.. really, I know how you feel. My PFT's went down now too, and Brianna JUST reached her 3 month mark and is still colicky, with acid reflux... I FEEL YOUR PAIN.

You can e-mail me at tina12707@yahoo.com or send me a private message anytime if you need any advice on colic, Kenny & I have a few tricks we have discovered throughout the months!!

Goodnight ladies... you all are my heroes. Seriously. Thanks for letting me vent!!!!!!!!!
 

tinamarie4685

New member
I'm really thinking I might need a round of IV's .. I'm on oral meds still, and everytime I stop them I get sick. I just stopped prednisone (20mg) because I wasnt "tight" or short of breath anymore... but I am still on Zyvox + Cipro because I cultured out PA & MRSA.. well I ran out of Zyvox and haven't had any for 3 days (waiting for stupid prior authorization from insurance) and I'm coughing my brains out everynight and my sputum is disgusting. Last night I was up from 3am until 7am coughing, doing albuterol which didnt help AT ALL, and then I finally fell asleep around 7:15 i think and Brianna woke at 8am to start her day while Kenny worked 7am-7pm. It's SOOOOOOOOOO hard feeling like sh*t, being tired from coughing fits, and raising a 3 month old baby getting over colic and still has acid reflux.

Going to the ENT tomorrow also because my sinuses are all messed up - polyps, all that lovely stuff.. so I will be finding out when I am going to be getting sinus surgery.

I know I am so lucky to have been able to have a baby, get pregnant with no problems, but c'mon.... can't I get a freakin' break?! I was sick throughout my pregnancy and for ONCE i would just like to feel "okay".. I wish we could all just feel good. I really, really can't stand CF.. I was in tears today reading a book to Brianna (Love You Forever) because it was about how the mommy grew to be old and got sick and how her "baby" grew to be a grown man and then took care of his mommy. I'm sure some of you know this book <img src="i/expressions/face-icon-small-smile.gif" border="0"> But anyways, I just lost it and started hysterical crying and Brianna was looking at me like I was nuts (she has never seen me cry). Damn hormones (i think) .. but it just made me so sad to think that I might not live to be an old lady.... okay this post is getting way too long and I'm all emotional, so off to bed I go.

That was my vent for the night!

Leah - just try to hang in there and like I am doing, take all the help you can get!! I hope you start getting better soon.. really, I know how you feel. My PFT's went down now too, and Brianna JUST reached her 3 month mark and is still colicky, with acid reflux... I FEEL YOUR PAIN.

You can e-mail me at tina12707@yahoo.com or send me a private message anytime if you need any advice on colic, Kenny & I have a few tricks we have discovered throughout the months!!

Goodnight ladies... you all are my heroes. Seriously. Thanks for letting me vent!!!!!!!!!
 

tinamarie4685

New member
I'm really thinking I might need a round of IV's .. I'm on oral meds still, and everytime I stop them I get sick. I just stopped prednisone (20mg) because I wasnt "tight" or short of breath anymore... but I am still on Zyvox + Cipro because I cultured out PA & MRSA.. well I ran out of Zyvox and haven't had any for 3 days (waiting for stupid prior authorization from insurance) and I'm coughing my brains out everynight and my sputum is disgusting. Last night I was up from 3am until 7am coughing, doing albuterol which didnt help AT ALL, and then I finally fell asleep around 7:15 i think and Brianna woke at 8am to start her day while Kenny worked 7am-7pm. It's SOOOOOOOOOO hard feeling like sh*t, being tired from coughing fits, and raising a 3 month old baby getting over colic and still has acid reflux.
<br />
<br />Going to the ENT tomorrow also because my sinuses are all messed up - polyps, all that lovely stuff.. so I will be finding out when I am going to be getting sinus surgery.
<br />
<br />I know I am so lucky to have been able to have a baby, get pregnant with no problems, but c'mon.... can't I get a freakin' break?! I was sick throughout my pregnancy and for ONCE i would just like to feel "okay".. I wish we could all just feel good. I really, really can't stand CF.. I was in tears today reading a book to Brianna (Love You Forever) because it was about how the mommy grew to be old and got sick and how her "baby" grew to be a grown man and then took care of his mommy. I'm sure some of you know this book <img src="i/expressions/face-icon-small-smile.gif" border="0"> But anyways, I just lost it and started hysterical crying and Brianna was looking at me like I was nuts (she has never seen me cry). Damn hormones (i think) .. but it just made me so sad to think that I might not live to be an old lady.... okay this post is getting way too long and I'm all emotional, so off to bed I go.
<br />
<br />That was my vent for the night!
<br />
<br />Leah - just try to hang in there and like I am doing, take all the help you can get!! I hope you start getting better soon.. really, I know how you feel. My PFT's went down now too, and Brianna JUST reached her 3 month mark and is still colicky, with acid reflux... I FEEL YOUR PAIN.
<br />
<br />You can e-mail me at tina12707@yahoo.com or send me a private message anytime if you need any advice on colic, Kenny & I have a few tricks we have discovered throughout the months!!
<br />
<br />Goodnight ladies... you all are my heroes. Seriously. Thanks for letting me vent!!!!!!!!!
 
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