m. abscessus and fevers

[theLostMiler]

Oh and just really saw the CFRD on your signature... is that well controlled? DCould that be exacerbating your symptoms too? I dont have that so I am not sure how that would affect (but I feel like high blood sugars would weaken your body and let the M.A. do even more bad).

 

[theLostMiler]

I reread yoour original message and I am not super great with some of it... the working part...

I tried an internship (there is no way I can work and do school I stopped that my junior year when m.a. first kicked my butt) and luckily my boss was suuuuuper flexible (had a nephew w/ cf who died b/c he didnt take care of himself though). I ended up not learning a lot b/c I was only part time, like 3-6 hours a day, half of the time with a fever, or leaving to do my ivs/treatments in the middle of a project so I just wasnt present enough to really get a lot out of it.

I ended up keeping with school, I figured I had gotten that far, by golly I was getting my degree b/c even if I dont use it right away, either I will get better or I will get a transplant and get better... so in the future I will be able to use it. (or not, sometimes I just want to up and change, b/c a doggy rescue is my dream now actually haha)

My degree was civil engineering.

I feel like the 8 hour clinicals UNTIL you get the right combo of meds is either a) not going to happen or b) just make you worse

So I feel like not pushing that aspect of things. Are you on SSD so you get some income w/o working? and/or medicare so you have a primary or secondary insurance? I am able to stay on my parents insurance indefinitely b/c in Nevada a disabled dependent (though I am declared by the gov't) by law can stay on parents insurance past age 23 or 25 or 26 or after full time student status has stopped. So i have my dad as primary (but he is still working) and medicare as secondary (It has made a TREMENDOUS difference in my med bills).

So do you have to do 8 hours of lab? Or if you are part time (which is what I did when I found out about not having to be full time) is that possible w/ your major?

Again, you probably have already thought of all this stuff, but in case you didnt <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[theLostMiler]

I reread yoour original message and I am not super great with some of it... the working part...

I tried an internship (there is no way I can work and do school I stopped that my junior year when m.a. first kicked my butt) and luckily my boss was suuuuuper flexible (had a nephew w/ cf who died b/c he didnt take care of himself though). I ended up not learning a lot b/c I was only part time, like 3-6 hours a day, half of the time with a fever, or leaving to do my ivs/treatments in the middle of a project so I just wasnt present enough to really get a lot out of it.

I ended up keeping with school, I figured I had gotten that far, by golly I was getting my degree b/c even if I dont use it right away, either I will get better or I will get a transplant and get better... so in the future I will be able to use it. (or not, sometimes I just want to up and change, b/c a doggy rescue is my dream now actually haha)

My degree was civil engineering.

I feel like the 8 hour clinicals UNTIL you get the right combo of meds is either a) not going to happen or b) just make you worse

So I feel like not pushing that aspect of things. Are you on SSD so you get some income w/o working? and/or medicare so you have a primary or secondary insurance? I am able to stay on my parents insurance indefinitely b/c in Nevada a disabled dependent (though I am declared by the gov't) by law can stay on parents insurance past age 23 or 25 or 26 or after full time student status has stopped. So i have my dad as primary (but he is still working) and medicare as secondary (It has made a TREMENDOUS difference in my med bills).

So do you have to do 8 hours of lab? Or if you are part time (which is what I did when I found out about not having to be full time) is that possible w/ your major?

Again, you probably have already thought of all this stuff, but in case you didnt <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[theLostMiler]

I reread yoour original message and I am not super great with some of it... the working part...
<br />
<br />I tried an internship (there is no way I can work and do school I stopped that my junior year when m.a. first kicked my butt) and luckily my boss was suuuuuper flexible (had a nephew w/ cf who died b/c he didnt take care of himself though). I ended up not learning a lot b/c I was only part time, like 3-6 hours a day, half of the time with a fever, or leaving to do my ivs/treatments in the middle of a project so I just wasnt present enough to really get a lot out of it.
<br />
<br />I ended up keeping with school, I figured I had gotten that far, by golly I was getting my degree b/c even if I dont use it right away, either I will get better or I will get a transplant and get better... so in the future I will be able to use it. (or not, sometimes I just want to up and change, b/c a doggy rescue is my dream now actually haha)
<br />
<br />My degree was civil engineering.
<br />
<br />I feel like the 8 hour clinicals UNTIL you get the right combo of meds is either a) not going to happen or b) just make you worse
<br />
<br />So I feel like not pushing that aspect of things. Are you on SSD so you get some income w/o working? and/or medicare so you have a primary or secondary insurance? I am able to stay on my parents insurance indefinitely b/c in Nevada a disabled dependent (though I am declared by the gov't) by law can stay on parents insurance past age 23 or 25 or 26 or after full time student status has stopped. So i have my dad as primary (but he is still working) and medicare as secondary (It has made a TREMENDOUS difference in my med bills).
<br />
<br />So do you have to do 8 hours of lab? Or if you are part time (which is what I did when I found out about not having to be full time) is that possible w/ your major?
<br />
<br />Again, you probably have already thought of all this stuff, but in case you didnt <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[theLostMiler]

Umm so I thought of 1 more thing haha

For a while I tried out that fizzy NAC, I figured if nothing else it might help with fevers b/c of that fact it reduces inflammation.

I felt noticeable clearer when on it (I suck at life and have the injection mcuomyst now I can shoot it through my g-tube but its like so much extra steps that I dont do it now where as before you plop the tablet in some OJ and suck her down) so as another idea, have you thought aobut giving that a go?

 

[theLostMiler]

Umm so I thought of 1 more thing haha

For a while I tried out that fizzy NAC, I figured if nothing else it might help with fevers b/c of that fact it reduces inflammation.

I felt noticeable clearer when on it (I suck at life and have the injection mcuomyst now I can shoot it through my g-tube but its like so much extra steps that I dont do it now where as before you plop the tablet in some OJ and suck her down) so as another idea, have you thought aobut giving that a go?

 

[theLostMiler]

Umm so I thought of 1 more thing haha
<br />
<br />For a while I tried out that fizzy NAC, I figured if nothing else it might help with fevers b/c of that fact it reduces inflammation.
<br />
<br />I felt noticeable clearer when on it (I suck at life and have the injection mcuomyst now I can shoot it through my g-tube but its like so much extra steps that I dont do it now where as before you plop the tablet in some OJ and suck her down) so as another idea, have you thought aobut giving that a go?

 

[beleache]

Hi Erin,

I am sorry that you are going through so much. It sucks ! I also culture m. abcessus .. I did have fevers & lots of night sweats (i still dont know if the sweats were the m.abcessus or me going though my changes lol) You can check out my blog to see what my journey has been like..

It is tough for sure but can be controlled w/ the right meds ( i believe ) Maybe you can take a break ?? Have you thought of applying for ssdi ?

I remember when I was first dxd w/ it how scared I was.. I thank God for the ppl at this site, they really helped clam my fears.. If you would like to talk to me about anything pm me & I will give you my phone # ..

Hang in there & God Bless you <img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hi Erin,

I am sorry that you are going through so much. It sucks ! I also culture m. abcessus .. I did have fevers & lots of night sweats (i still dont know if the sweats were the m.abcessus or me going though my changes lol) You can check out my blog to see what my journey has been like..

It is tough for sure but can be controlled w/ the right meds ( i believe ) Maybe you can take a break ?? Have you thought of applying for ssdi ?

I remember when I was first dxd w/ it how scared I was.. I thank God for the ppl at this site, they really helped clam my fears.. If you would like to talk to me about anything pm me & I will give you my phone # ..

Hang in there & God Bless you <img src="i/expressions/heart.gif" border="0"> joni

 

[beleache]

Hi Erin,
<br />
<br /> I am sorry that you are going through so much. It sucks ! I also culture m. abcessus .. I did have fevers & lots of night sweats (i still dont know if the sweats were the m.abcessus or me going though my changes lol) You can check out my blog to see what my journey has been like..
<br />
<br /> It is tough for sure but can be controlled w/ the right meds ( i believe ) Maybe you can take a break ?? Have you thought of applying for ssdi ?
<br />
<br /> I remember when I was first dxd w/ it how scared I was.. I thank God for the ppl at this site, they really helped clam my fears.. If you would like to talk to me about anything pm me & I will give you my phone # ..
<br />
<br />Hang in there & God Bless you <img src="i/expressions/heart.gif" border="0"> joni

 

[Deb]

I just cultured abscessus for the first time in February. Before they figured out what it was I was on 3 IV meds for three weeks but had fevers the whole time. The fevers and night sweats actually stopped when I finished the IV's. Then they discovered the abscessus which was sent to Denver. Denver now has me on 8 weeks of Primaxin (which I have never taken before). They are still waiting on final sensitivities so this may change.
I also cultured Nocardia. I think this one is easily treated with Bactrim but I hate the thought that I now have to battle abscessus in addition to pseudamonas. Especially since I only have one lung and it was supposed to be the "healthy lung" that gets me through the rest of my life.
I highly recommend National Jewish in Denver. Even if you don't go there, you can send a sputum sample and they will work with your local doctor.

 

[Deb]

I just cultured abscessus for the first time in February. Before they figured out what it was I was on 3 IV meds for three weeks but had fevers the whole time. The fevers and night sweats actually stopped when I finished the IV's. Then they discovered the abscessus which was sent to Denver. Denver now has me on 8 weeks of Primaxin (which I have never taken before). They are still waiting on final sensitivities so this may change.
I also cultured Nocardia. I think this one is easily treated with Bactrim but I hate the thought that I now have to battle abscessus in addition to pseudamonas. Especially since I only have one lung and it was supposed to be the "healthy lung" that gets me through the rest of my life.
I highly recommend National Jewish in Denver. Even if you don't go there, you can send a sputum sample and they will work with your local doctor.

 

[Deb]

I just cultured abscessus for the first time in February. Before they figured out what it was I was on 3 IV meds for three weeks but had fevers the whole time. The fevers and night sweats actually stopped when I finished the IV's. Then they discovered the abscessus which was sent to Denver. Denver now has me on 8 weeks of Primaxin (which I have never taken before). They are still waiting on final sensitivities so this may change.
<br />I also cultured Nocardia. I think this one is easily treated with Bactrim but I hate the thought that I now have to battle abscessus in addition to pseudamonas. Especially since I only have one lung and it was supposed to be the "healthy lung" that gets me through the rest of my life.
<br />I highly recommend National Jewish in Denver. Even if you don't go there, you can send a sputum sample and they will work with your local doctor.

 

[ej0820]

thanks for the replies all!

Working is what is really getting me. It is so hard to work and be sick. I do get SSDI, but unfortunately it's not enough for me to live off of by itself. That's another reason why I'm so hesitant to stop working or take time off of school.

Ugh, this bug is so crappy!

 

[ej0820]

thanks for the replies all!

Working is what is really getting me. It is so hard to work and be sick. I do get SSDI, but unfortunately it's not enough for me to live off of by itself. That's another reason why I'm so hesitant to stop working or take time off of school.

Ugh, this bug is so crappy!

 

[ej0820]

thanks for the replies all!
<br />
<br />Working is what is really getting me. It is so hard to work and be sick. I do get SSDI, but unfortunately it's not enough for me to live off of by itself. That's another reason why I'm so hesitant to stop working or take time off of school.
<br />
<br />Ugh, this bug is so crappy!