Disappointing news from the doc.

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princessjdc

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>princessjdc</b></i> Dont feel bad
you can always bring them up. I knew which one they looked at, but
I can see how it can be confusing, because there is soo many
numbers.</end quote></div>





How can you bring them up? I exercise, but is there any other way?
(That I can realistically fit into my day.)</end quote></div>

Do you take Hypertonic Saline? Thats how I got mine up. I use the 7% tho.
 
P

princessjdc

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>princessjdc</b></i> Dont feel bad
you can always bring them up. I knew which one they looked at, but
I can see how it can be confusing, because there is soo many
numbers.</end quote></div>





How can you bring them up? I exercise, but is there any other way?
(That I can realistically fit into my day.)</end quote></div>

Do you take Hypertonic Saline? Thats how I got mine up. I use the 7% tho.
 
C

chantelfox

New member
Thanks for all the responses you guys...I really appreciate
them.<br>
<br>
Sonia- My weight is fine...I think.  Right now it is about 105
and I am 5'3". Doc didn't say anything about it really. If I
get sick it can go down to 100 and then they jump on me.<br>
<br>
<br>
Steph- I guess the 53% is baseline since I have been there for
about 2 years.<br>
<br>
Jennifer- I have been trying for months to get on that stuff! I am
so irritated that MOnday when I went to the doc ( takes me 2 hours
one way to get there) they kept me in a room by myself for 2 hours,
because they were so busy and when the doc finally came in he said
he was too busy to let me try it (since they wont give it to me
unless I try it in the office first) when that was the WHOLE reason
I went there. I asked months ago to let me try it at my next visit,
which would have been last MOnday. ERRGG!!  Well, congrats on
your numbers! Is that all you really did to make them go up? Did
you exercise more? or do more treatments/ therapies?
 
C

chantelfox

New member
Thanks for all the responses you guys...I really appreciate
them.<br>
<br>
Sonia- My weight is fine...I think.  Right now it is about 105
and I am 5'3". Doc didn't say anything about it really. If I
get sick it can go down to 100 and then they jump on me.<br>
<br>
<br>
Steph- I guess the 53% is baseline since I have been there for
about 2 years.<br>
<br>
Jennifer- I have been trying for months to get on that stuff! I am
so irritated that MOnday when I went to the doc ( takes me 2 hours
one way to get there) they kept me in a room by myself for 2 hours,
because they were so busy and when the doc finally came in he said
he was too busy to let me try it (since they wont give it to me
unless I try it in the office first) when that was the WHOLE reason
I went there. I asked months ago to let me try it at my next visit,
which would have been last MOnday. ERRGG!!  Well, congrats on
your numbers! Is that all you really did to make them go up? Did
you exercise more? or do more treatments/ therapies?
 
C

chantelfox

New member
Thanks for all the responses you guys...I really appreciate
them.<br>
<br>
Sonia- My weight is fine...I think.  Right now it is about 105
and I am 5'3". Doc didn't say anything about it really. If I
get sick it can go down to 100 and then they jump on me.<br>
<br>
<br>
Steph- I guess the 53% is baseline since I have been there for
about 2 years.<br>
<br>
Jennifer- I have been trying for months to get on that stuff! I am
so irritated that MOnday when I went to the doc ( takes me 2 hours
one way to get there) they kept me in a room by myself for 2 hours,
because they were so busy and when the doc finally came in he said
he was too busy to let me try it (since they wont give it to me
unless I try it in the office first) when that was the WHOLE reason
I went there. I asked months ago to let me try it at my next visit,
which would have been last MOnday. ERRGG!!  Well, congrats on
your numbers! Is that all you really did to make them go up? Did
you exercise more? or do more treatments/ therapies?
 
K

katyf13

New member
Don't wait too long to think about transplant. Mike never came back up after he hit 30% and he TRIED. I am glad he got listed when he did (11 months ago) because in the past year or two he has gone from high 20's to at one time 13. He is now back up to 24 with the constant aid of oxygen and bipap at night. And he's in the hopsital. I am NOT trying to sound negative. I love hearing stories about people getting their pft's back up!! I am just saying don't wait too long to get evaluated. It's good to get the evaluation doen with just in case!
 
K

katyf13

New member
Don't wait too long to think about transplant. Mike never came back up after he hit 30% and he TRIED. I am glad he got listed when he did (11 months ago) because in the past year or two he has gone from high 20's to at one time 13. He is now back up to 24 with the constant aid of oxygen and bipap at night. And he's in the hopsital. I am NOT trying to sound negative. I love hearing stories about people getting their pft's back up!! I am just saying don't wait too long to get evaluated. It's good to get the evaluation doen with just in case!
 
K

katyf13

New member
Don't wait too long to think about transplant. Mike never came back up after he hit 30% and he TRIED. I am glad he got listed when he did (11 months ago) because in the past year or two he has gone from high 20's to at one time 13. He is now back up to 24 with the constant aid of oxygen and bipap at night. And he's in the hopsital. I am NOT trying to sound negative. I love hearing stories about people getting their pft's back up!! I am just saying don't wait too long to get evaluated. It's good to get the evaluation doen with just in case!
 
L

Landy

New member
Thank you, everyone for the clarification. I had asked my doctor this once & he said to Google pulmonary function tests & I would find a wealth of information on how to interpret the tests on line and I think I did this way back then, but it was pages & pages so I don't think I took the time to read it all.

Chantel,
Does your doctor not see patients at another office on the days he doesn't have CF Clinic? Quite often I schedule appointments with my doctor at his other clinic as he seems more relaxed & has more time to devote to me there. Possibly your doctor would have more time to have you try the HS at his other office?? Just an idea....
 
L

Landy

New member
Thank you, everyone for the clarification. I had asked my doctor this once & he said to Google pulmonary function tests & I would find a wealth of information on how to interpret the tests on line and I think I did this way back then, but it was pages & pages so I don't think I took the time to read it all.

Chantel,
Does your doctor not see patients at another office on the days he doesn't have CF Clinic? Quite often I schedule appointments with my doctor at his other clinic as he seems more relaxed & has more time to devote to me there. Possibly your doctor would have more time to have you try the HS at his other office?? Just an idea....
 
L

Landy

New member
Thank you, everyone for the clarification. I had asked my doctor this once & he said to Google pulmonary function tests & I would find a wealth of information on how to interpret the tests on line and I think I did this way back then, but it was pages & pages so I don't think I took the time to read it all.

Chantel,
Does your doctor not see patients at another office on the days he doesn't have CF Clinic? Quite often I schedule appointments with my doctor at his other clinic as he seems more relaxed & has more time to devote to me there. Possibly your doctor would have more time to have you try the HS at his other office?? Just an idea....
 
P

princessjdc

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

Jennifer- I have been trying for months to get on that stuff! I am
so irritated that MOnday when I went to the doc ( takes me 2 hours
one way to get there) they kept me in a room by myself for 2 hours,
because they were so busy and when the doc finally came in he said
he was too busy to let me try it (since they wont give it to me
unless I try it in the office first) when that was the WHOLE reason
I went there. I asked months ago to let me try it at my next visit,
which would have been last MOnday. ERRGG!! Well, congrats on
your numbers! Is that all you really did to make them go up? Did
you exercise more? or do more treatments/ therapies?</end quote></div>


That is all I did was take the hypertonic saline, I do treatments 2x a day , in the evening I do the hypertonic saline and the vest and when im on tobi I do that, oh and the 2 inhalers I do them 2x a day also. I didnt excersize any more then what I did, but Im sure if I did then it would proably help bring them up more, and I do deep breathing exercises once in a blue moon, if I feel congested. Dont be too discouraged about the doc making you wait until you take it, because my doc did the same thing I asked I think in December of last year and he told me to wait until next time I saw him which was in February, and then he made a prescription for me, (at my clinic we dont have to try it there before taking it, he just prescribes it and if it doesnt work then next time he would stop it, thats how they do it here). Before the Hypertonic saline I did everything I mentioned above 2x a day, so all I did was add the Hypertonic Saline. Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it.
 
P

princessjdc

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

Jennifer- I have been trying for months to get on that stuff! I am
so irritated that MOnday when I went to the doc ( takes me 2 hours
one way to get there) they kept me in a room by myself for 2 hours,
because they were so busy and when the doc finally came in he said
he was too busy to let me try it (since they wont give it to me
unless I try it in the office first) when that was the WHOLE reason
I went there. I asked months ago to let me try it at my next visit,
which would have been last MOnday. ERRGG!! Well, congrats on
your numbers! Is that all you really did to make them go up? Did
you exercise more? or do more treatments/ therapies?</end quote></div>


That is all I did was take the hypertonic saline, I do treatments 2x a day , in the evening I do the hypertonic saline and the vest and when im on tobi I do that, oh and the 2 inhalers I do them 2x a day also. I didnt excersize any more then what I did, but Im sure if I did then it would proably help bring them up more, and I do deep breathing exercises once in a blue moon, if I feel congested. Dont be too discouraged about the doc making you wait until you take it, because my doc did the same thing I asked I think in December of last year and he told me to wait until next time I saw him which was in February, and then he made a prescription for me, (at my clinic we dont have to try it there before taking it, he just prescribes it and if it doesnt work then next time he would stop it, thats how they do it here). Before the Hypertonic saline I did everything I mentioned above 2x a day, so all I did was add the Hypertonic Saline. Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it.
 
P

princessjdc

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

Jennifer- I have been trying for months to get on that stuff! I am
so irritated that MOnday when I went to the doc ( takes me 2 hours
one way to get there) they kept me in a room by myself for 2 hours,
because they were so busy and when the doc finally came in he said
he was too busy to let me try it (since they wont give it to me
unless I try it in the office first) when that was the WHOLE reason
I went there. I asked months ago to let me try it at my next visit,
which would have been last MOnday. ERRGG!! Well, congrats on
your numbers! Is that all you really did to make them go up? Did
you exercise more? or do more treatments/ therapies?</end quote></div>


That is all I did was take the hypertonic saline, I do treatments 2x a day , in the evening I do the hypertonic saline and the vest and when im on tobi I do that, oh and the 2 inhalers I do them 2x a day also. I didnt excersize any more then what I did, but Im sure if I did then it would proably help bring them up more, and I do deep breathing exercises once in a blue moon, if I feel congested. Dont be too discouraged about the doc making you wait until you take it, because my doc did the same thing I asked I think in December of last year and he told me to wait until next time I saw him which was in February, and then he made a prescription for me, (at my clinic we dont have to try it there before taking it, he just prescribes it and if it doesnt work then next time he would stop it, thats how they do it here). Before the Hypertonic saline I did everything I mentioned above 2x a day, so all I did was add the Hypertonic Saline. Oh one thing about Hypertonic Saline you may not know is, it makes you cough at first and youll do that until you get use to it, thats what happened to me I dont cough anymore with it.
 
I

IG

Guest
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Pulmonary_function_test">http://en.wikipedia.org/wiki/Pulmonary_function_test</a> pretty good explaination of PFT's and what they mean.
 
I

IG

Guest
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Pulmonary_function_test">http://en.wikipedia.org/wiki/Pulmonary_function_test</a> pretty good explaination of PFT's and what they mean.
 
I

IG

Guest
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Pulmonary_function_test">http://en.wikipedia.org/wiki/Pulmonary_function_test</a> pretty good explaination of PFT's and what they mean.
 
C

catboogie

New member
don't worry, 53% isn't bad at all, as long as its not a huge drop for you...it's all relative really. for me, i am always trying to get my numbers to go up by being compliant with therapy and exercising. it is possible! but no, your number is not terribly low...there is a long way to go between 53% and 25%.

good luck.
 
C

catboogie

New member
don't worry, 53% isn't bad at all, as long as its not a huge drop for you...it's all relative really. for me, i am always trying to get my numbers to go up by being compliant with therapy and exercising. it is possible! but no, your number is not terribly low...there is a long way to go between 53% and 25%.

good luck.
 
C

catboogie

New member
don't worry, 53% isn't bad at all, as long as its not a huge drop for you...it's all relative really. for me, i am always trying to get my numbers to go up by being compliant with therapy and exercising. it is possible! but no, your number is not terribly low...there is a long way to go between 53% and 25%.

good luck.
 
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