Hi Sonia,
<br /> The original post about what was going on is here.....
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<br />I wasnt able to login for some odd reason so i had Landy post it on my behalf.
<br /> I got off of iv's a week ago today. i was on them 3 weeks.
<br />What was happening was ....usually when i get off iv's my numbers gradually go up with each visit to the Dr. Well i was in the hospital for pneumonia and pleurisy in April. It was the sickest i had ever been and needed oxygen for the first time. The day i left the hospital they did a pft.... I was feeling better but certainly no where near back to baseline and my fev1 was only 30%. I am usually in the mid 40's. I had to see my Dr. each week to make sure i was making progress and each time i went my numbers would be higher till they finally got to 41%. Great i thought i was finally out of the woods.
<br /> Then in JUNE, i get sick again ( fevers , shortness of breath)and land back in the hospital but this time i went before i got too sick. Once again ,the day i was discharged they did a pft and it was 33%. Well to make a ong story short, it only went up to 39% within a month, after 8 weeks on iv's. Then with each visit ( every 2 weeks) my numbers started going down 1 point each time ( although i felt pretty ok) Then in Oct. i was back on iv's again ( fevers minimal shortness of breath) after 2 weeks of iv's i expected to see numbers much better but they were a point down again 36% ( this is when i got frustrated and very upset and asked my Dr. what's going on here , this isn't normal) My Dr. said we need to start thinking outside the box and start looking to see if something else is going on here. They did the sedrate test and my numbers were quite high. Today my pft's were 37%, but i feel so much better than 37%, but then again if i have too much inflammation in my body as the sedrate suggests that may very well be the reason for the lowered numbers. He took another sedrate test today to see if it may have been caused by too many iv's so close together ( which could cause serum sickness). If that test is much lower than the last one, then it just might be the culprit. I know you have been having problems with getting your numbers back up also, so i know you certainly understand my frustration. I forgot to mention that pretty much all this time i have been running low grade fevers even when i feel pretty good, which is what made my Dr. suspect it may be more than just cf causing this trend. Thanks so much for any prayers you have to offer because i can certainly use them. This has been quite stressful on me.
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