Sad and Totally Confused

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bgchastain

New member
OK, it's taken me a week to get to the point that I can talk about this, so here it goes.
I went to my clinic visit last wed, Feb 1, and my FEV1 is down to 45% from 48%. But here's the confusing and sad part. I have been working so hard these past 2 months to get them back up to around 50%, which is my base line. They've been running low for about 6 months now. Anyways, on top of the antibiotics I had been on I started getting up every morning and walking on my treadmill, doing the inhaled essential oils with the facial sauna, and I had been on oregano oil but ran out and now it's on back order. I haven't felt this good in a year and I thought I was going to just blow them away. And then my FEV's were LOWER!! I did gain 4 pound which they we're happy about but I just so wasn't expecting that. The only thing I can think of was that I had to get up a 4:30 AM to get to my appt. at 10:00AM (it's a 5 hr drive) and I was on my period (your welcome guys) I have talked to some other women who swear they're chest gets tighter during that time of the month. My last check up was in Dec. and I had been on the oregano oil only and my FEVs had come up to 48% from 43%, maybe I just need to wait until I get the oregano oil back in. I go back up( my dr. are in Atlanta) in March.
Sorry it's so long, but now it's so hard to get motivated to get up and do all the treatments and exersice when I'm not seeing any results.
Thanks for listening!!
 
B

bgchastain

New member
OK, it's taken me a week to get to the point that I can talk about this, so here it goes.
I went to my clinic visit last wed, Feb 1, and my FEV1 is down to 45% from 48%. But here's the confusing and sad part. I have been working so hard these past 2 months to get them back up to around 50%, which is my base line. They've been running low for about 6 months now. Anyways, on top of the antibiotics I had been on I started getting up every morning and walking on my treadmill, doing the inhaled essential oils with the facial sauna, and I had been on oregano oil but ran out and now it's on back order. I haven't felt this good in a year and I thought I was going to just blow them away. And then my FEV's were LOWER!! I did gain 4 pound which they we're happy about but I just so wasn't expecting that. The only thing I can think of was that I had to get up a 4:30 AM to get to my appt. at 10:00AM (it's a 5 hr drive) and I was on my period (your welcome guys) I have talked to some other women who swear they're chest gets tighter during that time of the month. My last check up was in Dec. and I had been on the oregano oil only and my FEVs had come up to 48% from 43%, maybe I just need to wait until I get the oregano oil back in. I go back up( my dr. are in Atlanta) in March.
Sorry it's so long, but now it's so hard to get motivated to get up and do all the treatments and exersice when I'm not seeing any results.
Thanks for listening!!
 
S

smbriggs

New member
I hate when that happens. There are times when I have be so regular with my exercise and I go in and my FEV1 are down. I think sometimes we try so hard to clear out our lungs that we over do it. I think there is a very fine line of doing what we are suppose to and over doing it. Does anyone else agree?
 
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smbriggs

New member
I hate when that happens. There are times when I have be so regular with my exercise and I go in and my FEV1 are down. I think sometimes we try so hard to clear out our lungs that we over do it. I think there is a very fine line of doing what we are suppose to and over doing it. Does anyone else agree?
 
L

LouLou

New member
Bonnie, I feel for you. I'm sure you're very frustrated and a bit scared. I am in the same situation in that I have pulled out pretty much all stops on getting my PFT's up (in 60/70's hope to get them in the 80's). Your doctor probably requested that you come in again in a few weeks to a month. I would try to relax and keep doing what you are doing. Next time you go in go a week before or a week after your period as I personally have unexplained tightness / increased congestion that miraculously clears up when it leaves. Tightness can really reak havic on the tests. Also, work on huff coughing this next few weeks instead of coughing in the traditional way. This will help to decrease inflammation in the airways as well as bring many other benefits. Finally, when you do go in to do the tests work on relaxing during the tests. I recently found out that I was over exerting myself in blow mode, that I was actually constricting my airways. My doctor walked by as I was doing the test and later quote said, "You'd do better if you didn't try so hard!" It took balls for him to say that to me but I'm really glad he did. The way to make sure you do this is don't blow 100% rather 95% of your capability and keep your shoulders down and relaxed. Ask the pft administrator for their help by telling you whether you are relaxing your neck and shoulder muscles from their perspective. Worth a shot. Also, maybe you should schedule an afternoon appt. since getting up at 4:30 had to mess up your regular AM routine. It's important I think to be evaluated under 'normal' circumstances in order to get the best results.
 
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LouLou

New member
Bonnie, I feel for you. I'm sure you're very frustrated and a bit scared. I am in the same situation in that I have pulled out pretty much all stops on getting my PFT's up (in 60/70's hope to get them in the 80's). Your doctor probably requested that you come in again in a few weeks to a month. I would try to relax and keep doing what you are doing. Next time you go in go a week before or a week after your period as I personally have unexplained tightness / increased congestion that miraculously clears up when it leaves. Tightness can really reak havic on the tests. Also, work on huff coughing this next few weeks instead of coughing in the traditional way. This will help to decrease inflammation in the airways as well as bring many other benefits. Finally, when you do go in to do the tests work on relaxing during the tests. I recently found out that I was over exerting myself in blow mode, that I was actually constricting my airways. My doctor walked by as I was doing the test and later quote said, "You'd do better if you didn't try so hard!" It took balls for him to say that to me but I'm really glad he did. The way to make sure you do this is don't blow 100% rather 95% of your capability and keep your shoulders down and relaxed. Ask the pft administrator for their help by telling you whether you are relaxing your neck and shoulder muscles from their perspective. Worth a shot. Also, maybe you should schedule an afternoon appt. since getting up at 4:30 had to mess up your regular AM routine. It's important I think to be evaluated under 'normal' circumstances in order to get the best results.
 
A

anonymous

New member
I have read in more than one place that when it's our 'time of month' that our PFT's can be lower.
I definitely notice that I am shorter of breath and draggy during my time of month.
One other tip, I know it will make for a long day, but I have also read that PFT's are at their best in early afternoon, so if you can schedule next appt. for early afternoon, and at another time of the month, I think things will look better for you.
Hang in there. It is discouraging when you think you're doing all you can and to no avail!
 
A

anonymous

New member
I have read in more than one place that when it's our 'time of month' that our PFT's can be lower.
I definitely notice that I am shorter of breath and draggy during my time of month.
One other tip, I know it will make for a long day, but I have also read that PFT's are at their best in early afternoon, so if you can schedule next appt. for early afternoon, and at another time of the month, I think things will look better for you.
Hang in there. It is discouraging when you think you're doing all you can and to no avail!
 
B

bgchastain

New member
Thanks for your replies and support. I appreciate it! My next appt. is on March 22 @1:00PM so hopefully it will go better next month. Thanks!!
 
B

bgchastain

New member
Thanks for your replies and support. I appreciate it! My next appt. is on March 22 @1:00PM so hopefully it will go better next month. Thanks!!
 
J

JazzysMom

New member
I really recommend rescheduling the appointment if possible when its your period time. For me it makes a world of difference. Physically it is hard for me to blow for the PFT & hormonally I am out of whack. It just knocks everything haywire. I just hate to see you get down/confused over something that could be directly related to having your period. Good Luck next time!
 
J

JazzysMom

New member
I really recommend rescheduling the appointment if possible when its your period time. For me it makes a world of difference. Physically it is hard for me to blow for the PFT & hormonally I am out of whack. It just knocks everything haywire. I just hate to see you get down/confused over something that could be directly related to having your period. Good Luck next time!
 
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bgchastain

New member
Thanks guys!
I'll keep you updated and keep up withall of my treatments and everything. I got the oregano oil in last night- ironic huh?
Hope that is what was missing this last visit.
 
B

bgchastain

New member
Thanks guys!
I'll keep you updated and keep up withall of my treatments and everything. I got the oregano oil in last night- ironic huh?
Hope that is what was missing this last visit.
 
L

littledebbie

New member
Okay, see here is my frustration with this. Do you feel good? If yes, then that's the main thing. I have always thought it was somewhat ludicrous to worry about things in such small incriments as 1-2 lbs or 2-3%s. who knows what would make the difference, 1lb, could be water, 2% could be technique etc. who knows, if you feel good, then good. if you see a drastic change or you notice a real progression (declining steadly) then maybe it's time to evaluate what your doing/if you could do more.

The other unhappy fact of our disease is lung damage. Sometimes no matter how hard we work or what we do there's just no undoing the damage that's done, I have switched to trying to focus on how I FEEL and use that as my scale. I know my body, I know when I'm sick, starting to get sick, getting a cold or going down for the count. I know when I can help myself on my own and when I need to call the Dr. So if you feel good and you've been doing all you can, then high fives to you and ask for a copy of your PFT's so you can burn it in the ritual bonfire ceremony of "PFT's can bite my bum".

That's just my lame opinion, then again my PFT's are so low I don't really do them anymore...depressing who needs it. I FEEL good (for me anyway) and i'm doing everything I can. Why set myself up to get what feels like a grade F when I feel "good" and I'm working so hard? So my opinion is admittadley bias. Just felt I should include that discalimer.
 
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littledebbie

New member
Okay, see here is my frustration with this. Do you feel good? If yes, then that's the main thing. I have always thought it was somewhat ludicrous to worry about things in such small incriments as 1-2 lbs or 2-3%s. who knows what would make the difference, 1lb, could be water, 2% could be technique etc. who knows, if you feel good, then good. if you see a drastic change or you notice a real progression (declining steadly) then maybe it's time to evaluate what your doing/if you could do more.

The other unhappy fact of our disease is lung damage. Sometimes no matter how hard we work or what we do there's just no undoing the damage that's done, I have switched to trying to focus on how I FEEL and use that as my scale. I know my body, I know when I'm sick, starting to get sick, getting a cold or going down for the count. I know when I can help myself on my own and when I need to call the Dr. So if you feel good and you've been doing all you can, then high fives to you and ask for a copy of your PFT's so you can burn it in the ritual bonfire ceremony of "PFT's can bite my bum".

That's just my lame opinion, then again my PFT's are so low I don't really do them anymore...depressing who needs it. I FEEL good (for me anyway) and i'm doing everything I can. Why set myself up to get what feels like a grade F when I feel "good" and I'm working so hard? So my opinion is admittadley bias. Just felt I should include that discalimer.
 
C

CowTown

New member
I can definitely relate. My FEV1s started to go down in the last one to two years (from in the 70's to the 60's now in the 40's!), and I could feel the difference. Last time I went in the hospital I had a 2 week tune-up and always did much better by the end. This time, my FEV1 was lower than when I went in two weeks prior. No one was very excited about this, and the docs were confused. They rescheduled me for another test later in the month which was the same low number. Apparently, this was a sign to them that something else might be going on. I've had MAC (some bacteria) for a long time and this might be how it's finally showing it's ugly head. Because of my FEV1s not staying where they should, they might start treating me for this MAC. It might be the MAC bringing me down (not the normal psuedomonas). If that's the case then I'm happy to start treating it if it will help get control and bring my #s back up. It sucks and is very scary to see low numbers! I don't like it at all either.
 
C

CowTown

New member
I can definitely relate. My FEV1s started to go down in the last one to two years (from in the 70's to the 60's now in the 40's!), and I could feel the difference. Last time I went in the hospital I had a 2 week tune-up and always did much better by the end. This time, my FEV1 was lower than when I went in two weeks prior. No one was very excited about this, and the docs were confused. They rescheduled me for another test later in the month which was the same low number. Apparently, this was a sign to them that something else might be going on. I've had MAC (some bacteria) for a long time and this might be how it's finally showing it's ugly head. Because of my FEV1s not staying where they should, they might start treating me for this MAC. It might be the MAC bringing me down (not the normal psuedomonas). If that's the case then I'm happy to start treating it if it will help get control and bring my #s back up. It sucks and is very scary to see low numbers! I don't like it at all either.
 
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