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first post in a while...

M

Markus

Guest
I know I have not been a participating member lately I have been just reading and trying to catch up with the new trends of care for CF and read as much as possible.  On Monday it was my first trip back to the CF clinic in three years (been seeing a reg doc for the past three)  Any how after doing my lung functions and doing all the fun exciting test that we all have to go through the doc was less then thrilled with the development of my lungs.  Since I was last seen my lung functions have dropped nearly 50% going from around <70% down to 38-41% predicted.  I guess the only good thing if you can call it that was that my O2 stats were still around 94-95% so I dont need to go on O2. But now the doc is wanting to take a more aggressive approach with this and once my culture comes back he wants me back on a IV's for a few weeks and possible again in October to try and get me back up to where I was.  Since I have been in the hospital 3 times with phemonia (sp? spelling sucks I know) hes not sure if this is to be my new base line or not, but wants to try and get it back up.  I found myself thinking how great it would be to be at 70% again not only for me but for my kids and my wife to be.  For now I hate the extra time on the vest and making myself walk to the point of my chest hurting but I keep thinking of what could be,  and hope it to be. 
Anyways dont know why I felt like sharing but did anyways 
Cheers!
 
 
M

Markus

Guest
I know I have not been a participating member lately I have been just reading and trying to catch up with the new trends of care for CF and read as much as possible. On Monday it was my first trip back to the CF clinic in three years (been seeing a reg doc for the past three) Any how after doing my lung functions and doing all the fun exciting test that we all have to go through the doc was less then thrilled with the development of my lungs. Since I was last seen my lung functions have dropped nearly 50% going from around <70% down to 38-41% predicted. I guess the only good thing if you can call it that was that my O2 stats were still around 94-95% so I dont need to go on O2. But now the doc is wanting to takea more aggressive approach with this and once my culture comes back he wants me back on a IV's for a few weeks and possible again in October to try and get me back up to where I was. Since I have been in the hospital 3 times with phemonia (sp? spelling sucks I know) hes not sure if this is to be my new base line ornot, butwants to try and get it back up.I found myself thinking how great it would be to be at 70% again not only for me but for my kids and my wife to be. For now I hate the extra time on the vest and making myself walk to the point of my chest hurting but I keep thinking of what could be, and hope it to be.
Anywaysdont know why I felt like sharing but did anyways
Cheers!
 
M

Markus

Guest
<p>I know I have not been a participating member lately I have been just reading and trying to catch up with the new trends of care for CF and read as much as possible. On Monday it was my first trip back to the CF clinic in three years (been seeing a reg doc for the past three) Any how after doing my lung functions and doing all the fun exciting test that we all have to go through the doc was less then thrilled with the development of my lungs. Since I was last seen my lung functions have dropped nearly 50% going from around <70% down to 38-41% predicted. I guess the only good thing if you can call it that was that my O2 stats were still around 94-95% so I dont need to go on O2. But now the doc is wanting to takea more aggressive approach with this and once my culture comes back he wants me back on a IV's for a few weeks and possible again in October to try and get me back up to where I was. Since I have been in the hospital 3 times with phemonia (sp? spelling sucks I know) hes not sure if this is to be my new base line ornot, butwants to try and get it back up.I found myself thinking how great it would be to be at 70% again not only for me but for my kids and my wife to be. For now I hate the extra time on the vest and making myself walk to the point of my chest hurting but I keep thinking of what could be, and hope it to be.
<p>Anywaysdont know why I felt like sharing but did anyways
<p>Cheers!
<p>
 
J

JORDYSMOM

New member
It's great that you are feeling motivated to improve your health.  I hope your doc can help you get back where you'd like to be. 
Glad you stopped by.  Keep us posted on your progress.
Stacey
 
J

JORDYSMOM

New member
It's great that you are feeling motivated to improve your health. I hope your doc can help you get back where you'd like to be.
Glad you stopped by. Keep us posted on your progress.
Stacey
 
J

JORDYSMOM

New member
<p>It's great that you are feeling motivated to improve your health. I hope your doc can help you get back where you'd like to be.
<p>Glad you stopped by. Keep us posted on your progress.
<p>Stacey
 
M

Markus

Guest
a bit of good news is my culture came back and I guess it showed that the bugs I am growing are really sensitive to everything. So with that, the doc said i could skip the PICC line this time. I didnt even try to get out of getting a picc line like I normally do <img src="i/expressions/face-icon-small-smile.gif" border="0"> So to say the least I was quite happy about that. Going on my normal Cipro and a new one I have never tried sulfamethoxazole TMP and of course keep taking my tobi and pulmozyme and azithro.

Anyways it was a bit of good news they just want me to come back every week while I am on to make sure I am making some progress.
 
M

Markus

Guest
a bit of good news is my culture came back and I guess it showed that the bugs I am growing are really sensitive to everything. So with that, the doc said i could skip the PICC line this time. I didnt even try to get out of getting a picc line like I normally do <img src="i/expressions/face-icon-small-smile.gif" border="0"> So to say the least I was quite happy about that. Going on my normal Cipro and a new one I have never tried sulfamethoxazole TMP and of course keep taking my tobi and pulmozyme and azithro.

Anyways it was a bit of good news they just want me to come back every week while I am on to make sure I am making some progress.
 
M

Markus

Guest
a bit of good news is my culture came back and I guess it showed that the bugs I am growing are really sensitive to everything. So with that, the doc said i could skip the PICC line this time. I didnt even try to get out of getting a picc line like I normally do <img src="i/expressions/face-icon-small-smile.gif" border="0"> So to say the least I was quite happy about that. Going on my normal Cipro and a new one I have never tried sulfamethoxazole TMP and of course keep taking my tobi and pulmozyme and azithro.
<br />
<br />Anyways it was a bit of good news they just want me to come back every week while I am on to make sure I am making some progress.
 
S

SarahProcter

Guest
if you are engaged to a wonderful person then I am extra glad that you are working to get your health to the best it can be! congratulations <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SarahProcter

Guest
if you are engaged to a wonderful person then I am extra glad that you are working to get your health to the best it can be! congratulations <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SarahProcter

Guest
if you are engaged to a wonderful person then I am extra glad that you are working to get your health to the best it can be! congratulations <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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