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My clinic appointment

LouLou

New member
Well I met my personal goal of getting my FVC up over 3 liters and my FEV1 over 2. Percentage wise I'm at FVC 82% and FEV1 67%. I'm sooo excited!!

My FVC hasn't been over 3.0 since September 2002 that's 4 and half years ago and my FEV1 hasn't been this since 2003. My FEF 25-75 has shown a small decrease since November. I average 45% for this number. In November I was 50% and now I am 41%. The doctor told me we'll have to watch this number as it could be indicative of a downward trend just starting due to pregnancy. He reminded me that even non-cfers lose 1/3 of their lung capacity towards the end of pregnancy so a drop is to be expected and the FEF is the first that will be effected since it measures the smallest of the airways.

He wants me to work extra hard at clearance. He reminds me constantly that the Vest just shakes and loosens things up but without huff coughing and getting out mucus I'm not doing any good. In fact, he thinks if I don't get it out I'm actually making a worse situation because he says the mucus breaks free and moves to the lower lobes (gravity?) that in me aren't very effected by cf.

Now for me it never seems a clinic visit can be all good news. For the first time in my life I am going to have to start eating more than I desire. I've been a little more hungry during pregnancy but not much at all. I had gained 6 lbs. as of last week (I'm at 18 weeks) but when they weighed me at clinic it only reflected 4 lbs. up. They felt this was unacceptable and I'm on orders to gain 1.5 lbs. per week from here out with the pregnancy. They gave me all these tips and also had me meet with the nutritionist who pushed Carnation VHC - - yuck! The cf community is coming to a conclusion that the reason cf mom's deliver 5-6 weeks early isn't usually to do with respiratory issues but rather due to nutrition problems. As my doc says my body has had 25+ years to get used to this lung thing but this parasite that's taking the majority of the small amount of nutrition I get out of my food is new and the body if not properly cared for will get rid of the parasite. Of course, I don't want this so hence I must eat, eat, eat. Any suggestions of great snacks I can make in advance that keep for a few days and can be packed up to take to work with me would be appreciated.
All I can say is I'm glad I started at 127 lbs. (5'3") because at least I wasn't underweight with that added weight on my shoulders.

Happy Friday!
 

LouLou

New member
Well I met my personal goal of getting my FVC up over 3 liters and my FEV1 over 2. Percentage wise I'm at FVC 82% and FEV1 67%. I'm sooo excited!!

My FVC hasn't been over 3.0 since September 2002 that's 4 and half years ago and my FEV1 hasn't been this since 2003. My FEF 25-75 has shown a small decrease since November. I average 45% for this number. In November I was 50% and now I am 41%. The doctor told me we'll have to watch this number as it could be indicative of a downward trend just starting due to pregnancy. He reminded me that even non-cfers lose 1/3 of their lung capacity towards the end of pregnancy so a drop is to be expected and the FEF is the first that will be effected since it measures the smallest of the airways.

He wants me to work extra hard at clearance. He reminds me constantly that the Vest just shakes and loosens things up but without huff coughing and getting out mucus I'm not doing any good. In fact, he thinks if I don't get it out I'm actually making a worse situation because he says the mucus breaks free and moves to the lower lobes (gravity?) that in me aren't very effected by cf.

Now for me it never seems a clinic visit can be all good news. For the first time in my life I am going to have to start eating more than I desire. I've been a little more hungry during pregnancy but not much at all. I had gained 6 lbs. as of last week (I'm at 18 weeks) but when they weighed me at clinic it only reflected 4 lbs. up. They felt this was unacceptable and I'm on orders to gain 1.5 lbs. per week from here out with the pregnancy. They gave me all these tips and also had me meet with the nutritionist who pushed Carnation VHC - - yuck! The cf community is coming to a conclusion that the reason cf mom's deliver 5-6 weeks early isn't usually to do with respiratory issues but rather due to nutrition problems. As my doc says my body has had 25+ years to get used to this lung thing but this parasite that's taking the majority of the small amount of nutrition I get out of my food is new and the body if not properly cared for will get rid of the parasite. Of course, I don't want this so hence I must eat, eat, eat. Any suggestions of great snacks I can make in advance that keep for a few days and can be packed up to take to work with me would be appreciated.
All I can say is I'm glad I started at 127 lbs. (5'3") because at least I wasn't underweight with that added weight on my shoulders.

Happy Friday!
 

LouLou

New member
Well I met my personal goal of getting my FVC up over 3 liters and my FEV1 over 2. Percentage wise I'm at FVC 82% and FEV1 67%. I'm sooo excited!!

My FVC hasn't been over 3.0 since September 2002 that's 4 and half years ago and my FEV1 hasn't been this since 2003. My FEF 25-75 has shown a small decrease since November. I average 45% for this number. In November I was 50% and now I am 41%. The doctor told me we'll have to watch this number as it could be indicative of a downward trend just starting due to pregnancy. He reminded me that even non-cfers lose 1/3 of their lung capacity towards the end of pregnancy so a drop is to be expected and the FEF is the first that will be effected since it measures the smallest of the airways.

He wants me to work extra hard at clearance. He reminds me constantly that the Vest just shakes and loosens things up but without huff coughing and getting out mucus I'm not doing any good. In fact, he thinks if I don't get it out I'm actually making a worse situation because he says the mucus breaks free and moves to the lower lobes (gravity?) that in me aren't very effected by cf.

Now for me it never seems a clinic visit can be all good news. For the first time in my life I am going to have to start eating more than I desire. I've been a little more hungry during pregnancy but not much at all. I had gained 6 lbs. as of last week (I'm at 18 weeks) but when they weighed me at clinic it only reflected 4 lbs. up. They felt this was unacceptable and I'm on orders to gain 1.5 lbs. per week from here out with the pregnancy. They gave me all these tips and also had me meet with the nutritionist who pushed Carnation VHC - - yuck! The cf community is coming to a conclusion that the reason cf mom's deliver 5-6 weeks early isn't usually to do with respiratory issues but rather due to nutrition problems. As my doc says my body has had 25+ years to get used to this lung thing but this parasite that's taking the majority of the small amount of nutrition I get out of my food is new and the body if not properly cared for will get rid of the parasite. Of course, I don't want this so hence I must eat, eat, eat. Any suggestions of great snacks I can make in advance that keep for a few days and can be packed up to take to work with me would be appreciated.
All I can say is I'm glad I started at 127 lbs. (5'3") because at least I wasn't underweight with that added weight on my shoulders.

Happy Friday!
 

NoExcuses

New member
That's a great weight, by the way... 5'3 127. that's really a great weight!

I'll tell you what I told you last night - get a Venti Frappuccino from starbucks if you're willing to take the sugar ..... they are <b> 800 calorie BOMBS </b>

Good luck. And congrats on your PFT's getting higher...that's a huge accomplishment!
 

NoExcuses

New member
That's a great weight, by the way... 5'3 127. that's really a great weight!

I'll tell you what I told you last night - get a Venti Frappuccino from starbucks if you're willing to take the sugar ..... they are <b> 800 calorie BOMBS </b>

Good luck. And congrats on your PFT's getting higher...that's a huge accomplishment!
 

NoExcuses

New member
That's a great weight, by the way... 5'3 127. that's really a great weight!

I'll tell you what I told you last night - get a Venti Frappuccino from starbucks if you're willing to take the sugar ..... they are <b> 800 calorie BOMBS </b>

Good luck. And congrats on your PFT's getting higher...that's a huge accomplishment!
 

Ratatosk

Administrator
Staff member
I don't have CF, but during my pregnancy, I ate a lot of yogurt and drank yogurt smoothies.

Trail mix. I've gotten some wonderful stuff at Trader Joes -- nuts, chocolate, coconut. I've mixed up my own before with craisins, nuts, chocolate/peanut butter/vanilla chips...

What about instant oatmeal or cereal. They have handy individual sizes with bowls. If that's not handy, there are some pretty tasty oatmeal squares and breakfast bars.

To me regular carnation instant breakfast tastes like melted ice cream. Could you bring a smoothie/drink shaker to work and some milk and mix it up?
 

Ratatosk

Administrator
Staff member
I don't have CF, but during my pregnancy, I ate a lot of yogurt and drank yogurt smoothies.

Trail mix. I've gotten some wonderful stuff at Trader Joes -- nuts, chocolate, coconut. I've mixed up my own before with craisins, nuts, chocolate/peanut butter/vanilla chips...

What about instant oatmeal or cereal. They have handy individual sizes with bowls. If that's not handy, there are some pretty tasty oatmeal squares and breakfast bars.

To me regular carnation instant breakfast tastes like melted ice cream. Could you bring a smoothie/drink shaker to work and some milk and mix it up?
 

Ratatosk

Administrator
Staff member
I don't have CF, but during my pregnancy, I ate a lot of yogurt and drank yogurt smoothies.

Trail mix. I've gotten some wonderful stuff at Trader Joes -- nuts, chocolate, coconut. I've mixed up my own before with craisins, nuts, chocolate/peanut butter/vanilla chips...

What about instant oatmeal or cereal. They have handy individual sizes with bowls. If that's not handy, there are some pretty tasty oatmeal squares and breakfast bars.

To me regular carnation instant breakfast tastes like melted ice cream. Could you bring a smoothie/drink shaker to work and some milk and mix it up?
 

princessjdc

New member
Congrats on your pfts!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It always feels good to bring them suckers up. I would suggest lots and lots of twinkies, my favorite is the zingers, my husband says that, that is why Im fat because I eat too much twinkies. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Im only 137 and 5ft so I agree I feel fat but dont really look it unless you see my big fat stomach and its rolls <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

princessjdc

New member
Congrats on your pfts!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It always feels good to bring them suckers up. I would suggest lots and lots of twinkies, my favorite is the zingers, my husband says that, that is why Im fat because I eat too much twinkies. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Im only 137 and 5ft so I agree I feel fat but dont really look it unless you see my big fat stomach and its rolls <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

princessjdc

New member
Congrats on your pfts!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> It always feels good to bring them suckers up. I would suggest lots and lots of twinkies, my favorite is the zingers, my husband says that, that is why Im fat because I eat too much twinkies. <img src="i/expressions/face-icon-small-wink.gif" border="0"> Im only 137 and 5ft so I agree I feel fat but dont really look it unless you see my big fat stomach and its rolls <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

The cf community is coming to a conclusion that the reason cf mom's deliver 5-6 weeks early isn't usually to do with respiratory issues but rather due to nutrition problems. As my doc says my body has had 25+ years to get used to this lung thing but this parasite that's taking the majority of the small amount of nutrition I get out of my food is new and the body if not properly cared for will get rid of the parasite. </end quote></div>

Interesting to read this, as it was sort of my own theory as well - since both my babes came early and at almost exaclty the same size - as if that was all my body could handle feeding. Makes me think about another one and how if I ate more effectively I might keep it in longer (I only gained 24lbs with my son and 20 with my daughter).

Glad to hear your PFTS are good!
 

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

The cf community is coming to a conclusion that the reason cf mom's deliver 5-6 weeks early isn't usually to do with respiratory issues but rather due to nutrition problems. As my doc says my body has had 25+ years to get used to this lung thing but this parasite that's taking the majority of the small amount of nutrition I get out of my food is new and the body if not properly cared for will get rid of the parasite. </end quote></div>

Interesting to read this, as it was sort of my own theory as well - since both my babes came early and at almost exaclty the same size - as if that was all my body could handle feeding. Makes me think about another one and how if I ate more effectively I might keep it in longer (I only gained 24lbs with my son and 20 with my daughter).

Glad to hear your PFTS are good!
 

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i>

The cf community is coming to a conclusion that the reason cf mom's deliver 5-6 weeks early isn't usually to do with respiratory issues but rather due to nutrition problems. As my doc says my body has had 25+ years to get used to this lung thing but this parasite that's taking the majority of the small amount of nutrition I get out of my food is new and the body if not properly cared for will get rid of the parasite. </end quote></div>

Interesting to read this, as it was sort of my own theory as well - since both my babes came early and at almost exaclty the same size - as if that was all my body could handle feeding. Makes me think about another one and how if I ate more effectively I might keep it in longer (I only gained 24lbs with my son and 20 with my daughter).

Glad to hear your PFTS are good!
 

Diane

New member
Congrats on the pft's ! Thats awesome ! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Diane

New member
Congrats on the pft's ! Thats awesome ! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Diane

New member
Congrats on the pft's ! Thats awesome ! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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