SORRY FOR THE CAPS MY PHONE IS ACTING WEIRD?..SO ANYWAYS I HAVE BEEN IN HOSPITAL FOR A WEEK AND AM NOW GOING ON MY THIRD WEEK FOR IV'S...I WENT TO MY DOC YESTERDAY EXPECTING TO GET MY PICC PULLED BUT I WAS WRONG AND HAD BAD NEWS..NOT ONLY HAD MY FEV DROPPED BY 9% sINCE LEFT HOSPITAL BUT MY OXYGEN WAS 92 THEY WERE CONCERNED AND ASKING ME IF I FELT ANY DIFFERENT AND TO BE HONEST I BEEN OK JUST TIRED BUT FEELING BETTER SINCE HOSPITAL <img src="i/expressions/face-icon-small-smile.gif" border="0">...NOW IM COMPLETELY BAFFLED THOUGH TO WHY MY FEV HAS DROPPED SO MUCH <img src="i/expressions/face-icon-small-sad.gif" border="0">!..IVE BEEN EXERCISING MORE AND DOING EVERYTHING IM SUPPOSED TO...I ACTUALLY BROKE DOWN CRYING WHEN I HEARD MY FEV DROPPED..BUT I GO BACK THURSDAY TO SEE IF ANY IMPROVEMENT IF NOT IM SURE ILL BE GOING BACK IN AND IM SURE THEYLL BE DISCUSSING EVALUATION FOR TRANSPLANT AS IM 29% ...ONLY THINGS I CAN MENTION THAT ARE DIFFERENT IS MY BLOOD SUGARS HAVE BEEN LOW ALOT MORE LATELY WHICH IS CRAZY CAUSE THERE WERE SUPER HIGH IN HOSPITAL (392)!..AND MY MENSTRUAL CYCLE HAS BEEN MESSED UP I HAD TWO PERIODS LAST MONTH ...SO ANYONE KNOW WHAT COULD CAUSE MY FEV TO SHOOT DOWN?..IM WORRIED AND OVIOSLY AM DISCUSSING THIS WITH DOCTORS BUT DIDNT KNOW IF ANYBODY HAS BEEN IN SAME BOAT AS ME <img src="i/expressions/face-icon-small-smile.gif" border="0">
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Lung function Fev1% dropped 9% in 2weeks!?
- Thread starter carly23
- Start date
SORRY FOR THE CAPS MY PHONE IS ACTING WEIRD?..SO ANYWAYS I HAVE BEEN IN HOSPITAL FOR A WEEK AND AM NOW GOING ON MY THIRD WEEK FOR IV'S...I WENT TO MY DOC YESTERDAY EXPECTING TO GET MY PICC PULLED BUT I WAS WRONG AND HAD BAD NEWS..NOT ONLY HAD MY FEV DROPPED BY 9% sINCE LEFT HOSPITAL BUT MY OXYGEN WAS 92 THEY WERE CONCERNED AND ASKING ME IF I FELT ANY DIFFERENT AND TO BE HONEST I BEEN OK JUST TIRED BUT FEELING BETTER SINCE HOSPITAL <img src="i/expressions/face-icon-small-smile.gif" border="0">...NOW IM COMPLETELY BAFFLED THOUGH TO WHY MY FEV HAS DROPPED SO MUCH <img src="i/expressions/face-icon-small-sad.gif" border="0">!..IVE BEEN EXERCISING MORE AND DOING EVERYTHING IM SUPPOSED TO...I ACTUALLY BROKE DOWN CRYING WHEN I HEARD MY FEV DROPPED..BUT I GO BACK THURSDAY TO SEE IF ANY IMPROVEMENT IF NOT IM SURE ILL BE GOING BACK IN AND IM SURE THEYLL BE DISCUSSING EVALUATION FOR TRANSPLANT AS IM 29% ...ONLY THINGS I CAN MENTION THAT ARE DIFFERENT IS MY BLOOD SUGARS HAVE BEEN LOW ALOT MORE LATELY WHICH IS CRAZY CAUSE THERE WERE SUPER HIGH IN HOSPITAL (392)!..AND MY MENSTRUAL CYCLE HAS BEEN MESSED UP I HAD TWO PERIODS LAST MONTH ...SO ANYONE KNOW WHAT COULD CAUSE MY FEV TO SHOOT DOWN?..IM WORRIED AND OVIOSLY AM DISCUSSING THIS WITH DOCTORS BUT DIDNT KNOW IF ANYBODY HAS BEEN IN SAME BOAT AS ME <img src="i/expressions/face-icon-small-smile.gif" border="0">
<p>SORRY FOR THE CAPS MY PHONE IS ACTING WEIRD?..SO ANYWAYS I HAVE BEEN IN HOSPITAL FOR A WEEK AND AM NOW GOING ON MY THIRD WEEK FOR IV'S...I WENT TO MY DOC YESTERDAY EXPECTING TO GET MY PICC PULLED BUT I WAS WRONG AND HAD BAD NEWS..NOT ONLY HAD MY FEV DROPPED BY 9% sINCE LEFT HOSPITAL BUT MY OXYGEN WAS 92 THEY WERE CONCERNED AND ASKING ME IF I FELT ANY DIFFERENT AND TO BE HONEST I BEEN OK JUST TIRED BUT FEELING BETTER SINCE HOSPITAL <img src="i/expressions/face-icon-small-smile.gif" border="0">...NOW IM COMPLETELY BAFFLED THOUGH TO WHY MY FEV HAS DROPPED SO MUCH <img src="i/expressions/face-icon-small-sad.gif" border="0">!..IVE BEEN EXERCISING MORE AND DOING EVERYTHING IM SUPPOSED TO...I ACTUALLY BROKE DOWN CRYING WHEN I HEARD MY FEV DROPPED..BUT I GO BACK THURSDAY TO SEE IF ANY IMPROVEMENT IF NOT IM SURE ILL BE GOING BACK IN AND IM SURE THEYLL BE DISCUSSING EVALUATION FOR TRANSPLANT AS IM 29% ...ONLY THINGS I CAN MENTION THAT ARE DIFFERENT IS MY BLOOD SUGARS HAVE BEEN LOW ALOT MORE LATELY WHICH IS CRAZY CAUSE THERE WERE SUPER HIGH IN HOSPITAL (392)!..AND MY MENSTRUAL CYCLE HAS BEEN MESSED UP I HAD TWO PERIODS LAST MONTH ...SO ANYONE KNOW WHAT COULD CAUSE MY FEV TO SHOOT DOWN?..IM WORRIED AND OVIOSLY AM DISCUSSING THIS WITH DOCTORS BUT DIDNT KNOW IF ANYBODY HAS BEEN IN SAME BOAT AS ME <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallymookcf
New member
maybe the IV meds they have had you on need to be changed... or maybe you are having airway restriction from asthma/bronchiactasis like symptoms, and may need to be on prednisone/steroids. i just got off 3 weeks of ivs my self and my pfts had not improved hardly at all and i was still feeling horrible. my doc put me on prednisone and i feel so much better. i am goin back for pfts again soon to see if they have improved. Did they check to see if you cultured anything new in your sputum? i also noticed you said you had 2 periods in one month...i read an article not long ago about how they are finding out new links between estrogen levels and infection rate among cystic fibrosis women. they were explaining how more women during thier cycle are more likely to have infection or feel worse lung wise. there definitly needs to be more researched about estrogen effecting the lungs...bc it also can cause lung bleeds/hemoptysis. lots of women on here, including me, have hemoptysis during thier periods. i hope you can figure out what has caused the dropping of your pfts. Just thinking out loud..hope this helps!
God Bless
Mallory
God Bless
Mallory
Mallymookcf
New member
maybe the IV meds they have had you on need to be changed... or maybe you are having airway restriction from asthma/bronchiactasis likesymptoms, and may need to be on prednisone/steroids. i just got off 3 weeks of ivs my self and my pfts had not improved hardly at all and i was still feeling horrible. my doc put me on prednisone and i feel so much better. i am goin back for pfts again soon to see if they have improved. Did they check to see if youcultured anything new in your sputum? i also noticed you said you had 2 periods in one month...i read an article not long ago about how they are finding out new links between estrogen levels and infection rate among cystic fibrosis women. they were explaining how more women during thier cycle are more likely to have infection or feel worse lung wise. there definitly needs to be more researched about estrogen effecting the lungs...bc it also can cause lung bleeds/hemoptysis.lots of women on here, including me, have hemoptysis during thier periods. i hope you can figure out what has caused the dropping of your pfts. Just thinking out loud..hope this helps!
God Bless
Mallory
God Bless
Mallory
Mallymookcf
New member
<p>maybe the IV meds they have had you on need to be changed... or maybe you are having airway restriction from asthma/bronchiactasis likesymptoms, and may need to be on prednisone/steroids. i just got off 3 weeks of ivs my self and my pfts had not improved hardly at all and i was still feeling horrible. my doc put me on prednisone and i feel so much better. i am goin back for pfts again soon to see if they have improved. Did they check to see if youcultured anything new in your sputum? i also noticed you said you had 2 periods in one month...i read an article not long ago about how they are finding out new links between estrogen levels and infection rate among cystic fibrosis women. they were explaining how more women during thier cycle are more likely to have infection or feel worse lung wise. there definitly needs to be more researched about estrogen effecting the lungs...bc it also can cause lung bleeds/hemoptysis.lots of women on here, including me, have hemoptysis during thier periods. i hope you can figure out what has caused the dropping of your pfts. Just thinking out loud..hope this helps!
<p>God Bless
<p>Mallory
<p>God Bless
<p>Mallory
Thanks for your reply <img src="i/expressions/face-icon-small-smile.gif" border="0"> ..thing is though im on the exact same medicenes i was on in hospital
as i am at home right now...and lung wise im not feeling any worse like short of breath and sick..im just alot more tired im sleeping alot lately...i dont know my clinic told me about the periods and stuff that i needed to see my gyno..so il be making an appointment..im thinking i need to have bloodwork done to check on my thyroid?..i see also that thats something common to thats being noticed with Cf..i hope i get it figured out to!..one thing i also wanted to mention with the menstrual cycle thing is its painful to have a bowel movement like i get sharp pains not sure if thats normal?..but figured id throw it out there <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol ..i did some research and i see diabetes can be an explanation for sudden drop in pft's...ive not been diagnosed with it and all my tests came back good but like when i was in hospital on prednisone my sugars were very high which i know can happen..but since ive been home ive been the complete opposite im having alot of lows like 60..hopefuly ill get some more info cause its def a worry for me
as i am at home right now...and lung wise im not feeling any worse like short of breath and sick..im just alot more tired im sleeping alot lately...i dont know my clinic told me about the periods and stuff that i needed to see my gyno..so il be making an appointment..im thinking i need to have bloodwork done to check on my thyroid?..i see also that thats something common to thats being noticed with Cf..i hope i get it figured out to!..one thing i also wanted to mention with the menstrual cycle thing is its painful to have a bowel movement like i get sharp pains not sure if thats normal?..but figured id throw it out there <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol ..i did some research and i see diabetes can be an explanation for sudden drop in pft's...ive not been diagnosed with it and all my tests came back good but like when i was in hospital on prednisone my sugars were very high which i know can happen..but since ive been home ive been the complete opposite im having alot of lows like 60..hopefuly ill get some more info cause its def a worry for me
Thanks for your reply <img src="i/expressions/face-icon-small-smile.gif" border="0"> ..thing is though im on the exact same medicenes i was on in hospital
as i am at home right now...and lung wise im not feeling any worse like short of breath and sick..im just alot more tired im sleeping alot lately...i dont know my clinic told me about the periods and stuff that i needed to see my gyno..so il be making an appointment..im thinking i need to have bloodwork done to check on my thyroid?..i see also that thats something common to thats being noticed with Cf..i hope i get it figured out to!..one thing i also wanted to mention with the menstrual cycle thing is its painful to have a bowel movement like i get sharp pains not sure if thats normal?..but figured id throw it out there <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol ..i did some research and i see diabetes can be an explanation for sudden drop in pft's...ive not been diagnosed with it and all my tests came back good but like when i was in hospital on prednisone my sugars were very high which i know can happen..but since ive been home ive been the complete opposite im having alot of lows like 60..hopefuly ill get some more info cause its def a worry for me
as i am at home right now...and lung wise im not feeling any worse like short of breath and sick..im just alot more tired im sleeping alot lately...i dont know my clinic told me about the periods and stuff that i needed to see my gyno..so il be making an appointment..im thinking i need to have bloodwork done to check on my thyroid?..i see also that thats something common to thats being noticed with Cf..i hope i get it figured out to!..one thing i also wanted to mention with the menstrual cycle thing is its painful to have a bowel movement like i get sharp pains not sure if thats normal?..but figured id throw it out there <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol ..i did some research and i see diabetes can be an explanation for sudden drop in pft's...ive not been diagnosed with it and all my tests came back good but like when i was in hospital on prednisone my sugars were very high which i know can happen..but since ive been home ive been the complete opposite im having alot of lows like 60..hopefuly ill get some more info cause its def a worry for me
Thanks for your reply <img src="i/expressions/face-icon-small-smile.gif" border="0"> ..thing is though im on the exact same medicenes i was on in hospital
<br />as i am at home right now...and lung wise im not feeling any worse like short of breath and sick..im just alot more tired im sleeping alot lately...i dont know my clinic told me about the periods and stuff that i needed to see my gyno..so il be making an appointment..im thinking i need to have bloodwork done to check on my thyroid?..i see also that thats something common to thats being noticed with Cf..i hope i get it figured out to!..one thing i also wanted to mention with the menstrual cycle thing is its painful to have a bowel movement like i get sharp pains not sure if thats normal?..but figured id throw it out there <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol ..i did some research and i see diabetes can be an explanation for sudden drop in pft's...ive not been diagnosed with it and all my tests came back good but like when i was in hospital on prednisone my sugars were very high which i know can happen..but since ive been home ive been the complete opposite im having alot of lows like 60..hopefuly ill get some more info cause its def a worry for me
<br />as i am at home right now...and lung wise im not feeling any worse like short of breath and sick..im just alot more tired im sleeping alot lately...i dont know my clinic told me about the periods and stuff that i needed to see my gyno..so il be making an appointment..im thinking i need to have bloodwork done to check on my thyroid?..i see also that thats something common to thats being noticed with Cf..i hope i get it figured out to!..one thing i also wanted to mention with the menstrual cycle thing is its painful to have a bowel movement like i get sharp pains not sure if thats normal?..but figured id throw it out there <img src="i/expressions/face-icon-small-smile.gif" border="0"> lol ..i did some research and i see diabetes can be an explanation for sudden drop in pft's...ive not been diagnosed with it and all my tests came back good but like when i was in hospital on prednisone my sugars were very high which i know can happen..but since ive been home ive been the complete opposite im having alot of lows like 60..hopefuly ill get some more info cause its def a worry for me
theLostMiler
New member
I have a reply too but last night the site was being a pain... Even tried a PM. I'm on my iPod so I don't want to fettle it out but i will a little later when I'm on my regular computer.
theLostMiler
New member
I have a reply too but last night the site was being a pain... Even tried a PM. I'm on my iPod so I don't want to fettle it out but i will a little later when I'm on my regular computer.
theLostMiler
New member
I have a reply too but last night the site was being a pain... Even tried a PM. I'm on my iPod so I don't want to fettle it out but i will a little later when I'm on my regular computer.
musclemania70
New member
I am pretty much the same boat. I will be finishing 2 1/2 weeks of IV's and my pfts didn't budge. I feel worse than I did before I started. I am doing predisone for 5 days. This is my 3rd day of steroids. I feel a little better but still very short of breath and I wake up super congested.
They rechecked my sensitivities and I am sensitive to both Iv anbx. STRANGE. this is the first it has ever happened that I have not responded to IV's.
What else can be done after that? I'm not sure. I've already had my tx eval and in Dec I was 'too healthy' still. So all I can do is try to survive one day at a time. that sounds depressing! ha
They rechecked my sensitivities and I am sensitive to both Iv anbx. STRANGE. this is the first it has ever happened that I have not responded to IV's.
What else can be done after that? I'm not sure. I've already had my tx eval and in Dec I was 'too healthy' still. So all I can do is try to survive one day at a time. that sounds depressing! ha
musclemania70
New member
I am pretty much the same boat. I will be finishing 2 1/2 weeks of IV's and my pfts didn't budge. I feel worse than I did before I started. I am doing predisone for 5 days. This is my 3rd day of steroids. I feel a little better but still very short of breath and I wake up super congested.
They rechecked my sensitivities and I am sensitive to both Iv anbx. STRANGE. this is the first it has ever happened that I have not responded to IV's.
What else can be done after that? I'm not sure. I've already had my tx eval and in Dec I was 'too healthy' still. So all I can do is try to survive one day at a time. that sounds depressing! ha
They rechecked my sensitivities and I am sensitive to both Iv anbx. STRANGE. this is the first it has ever happened that I have not responded to IV's.
What else can be done after that? I'm not sure. I've already had my tx eval and in Dec I was 'too healthy' still. So all I can do is try to survive one day at a time. that sounds depressing! ha
musclemania70
New member
<p>I am pretty much the same boat. I will be finishing 2 1/2 weeks of IV's and my pfts didn't budge. I feel worse than I did before I started. I am doing predisone for 5 days. This is my 3rd day of steroids. I feel a little better but still very short of breath and I wake up super congested.
<p>They rechecked my sensitivities and I am sensitive to both Iv anbx. STRANGE. this is the first it has ever happened that I have not responded to IV's.
<p><br /><br />What else can be done after that? I'm not sure. I've already had my tx eval and in Dec I was 'too healthy' still. So all I can do is try to survive one day at a time. that sounds depressing! ha
<p>They rechecked my sensitivities and I am sensitive to both Iv anbx. STRANGE. this is the first it has ever happened that I have not responded to IV's.
<p><br /><br />What else can be done after that? I'm not sure. I've already had my tx eval and in Dec I was 'too healthy' still. So all I can do is try to survive one day at a time. that sounds depressing! ha