To IV or Not to IV...

Lilith · Aug 6, 2006

Alright, I come seeking advice from the almighty experts...lol.
I'm having a dilemma. I can't decide if my recent
decline in health has been due to infection or exhaustion. I
was pretty active yesterday, more so than usual, and now I just
have zero energy and a fever to boot. I've been battling with
a staph infection for the past 2 months or so. I've been on
three or four oral antibiotics. The next step is for me to
demand IV's, but I can't tell if that's what I need or if I just
need to rest. Here's a rundown of what I did yesterday before
I started feeling like crap... 
 
1) I worked out. I normally don't exercise as I should,
but I decided to kick myself in the butt and get moving. I
walked on the treadmill for 30 min. nonstop, anywhere between 2.0
and 3.5 mph. 
 
2) After that I took a dip in the pool to cool off and did
some arm exercises to build up resistance. 
 
3) I went to dinner with my boyfriend Rick, and did a small bit of
shopping before coming home. 
 
4) Rick and I had some 'one-on-one' time, if you get my gist.
That, too, wore me out a bit. 
 
By the end of the day, I was pretty tired. Before going to
bed, I was freezing cold. I figured a fever was coming on.
Sure enough, I woke up at 4 AM with a 101.4 temperature,
sweating like crazy. Today, I haven't had a fever yet, but I
feel dead to the world. Like I could fall asleep at any
moment. My sinuses have been giving me a bit of trouble (been
sneezing since Friday), but other than that there's nothing to
write home about. And my lungs seem pretty clear, because
when I did my HS that morning I hardly coughed up anything, though
what I did get up was almost orange in color, which I've heard
signals staph... 
 
So my question to you all is this; should I call my doc in the
morning demanding IV's, or should I wait it out a bit and see if I
just overexerted myself? I'm leaning more towards IV's, but I
wanted a second opinion. 
 
What do you think?

JennifersHope · Aug 6, 2006

Hmm I am in the same situation.. To IV or Not to IV, though if my doctor knew I was still sick, it would be for sure to IV.

It is so hard to know what the right choice is, I always always wait for IVS, which I know is not the right choice, so for you, I say better to nip it in the bud before it gets to bad and the infection is bad. FOr me, NO way man.. No IvS for me....THough I know I really could stand them and every day at work the infectious disease doctor keeps saying to me that she thinks I might need some extra help.....

Hope you feel better,

Jennifer

NoExcuses · Aug 7, 2006

This is the hardest question for me as a CFer. I hate the hospital and i hate IV's.

But if you have been on 3 or 4 different orals....and now you have a temp..... you need IV's.

there is no sense at all in battling a staph infection for 2 months. This bacteria is eating away at your lungs and the faster you get an antibiotics the more lung function you will be able to preserve.

Hospitals and IV's suck. Loosing lung function sucks even more.

Keep us posted.

Lilith · Aug 7, 2006

Thank you, Jennifer and Amy. I tend to agree, its probably
time for another round of IV's. I've gone 6 months without
them, which is a bit of a record for me, so its probably about
time. I don't think I'll be hospitalized, though. I'll
probably just go on home IV's. But I'm totally sick of
feeling like crap, so whatever I have to do, you know?

NoExcuses · Aug 7, 2006

I just want to add that your'e awesome for working out. <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> Especially when you're battling infection. Good for you~!!!!!!

Lilith · Aug 7, 2006

Aw, thank you for saying so, Amy! I wish I were more
religious about it, though ^_^;

EnergyGal · Aug 7, 2006

I think it is time for an IV treatment too.

Many years ago when my doctors told me I needed an IV I said to them give me two more weeks and if you still think I need an IV I will gladly do it. Most times not always I just went home and did three to four CPT therapies (the vest was not to be heard of then) and it worked. I cleared up my lungs.

Now if I had an infection like Staph that I never had before, in the hospital I would go or I would do an IV treatment at home and still did the three therapies a day.

Scarlett81 · Aug 7, 2006

I would definately do the IVs!

It sucks, it hurts, we hate it. But, if you have a fever that could be a sign of infection brewing somewhere. Have you ever tried having the PICC put in, and going home with it? I always do home IVs.

vestgirl · Aug 7, 2006

I would get IV's. I know we hate it. I get all emotional when I
have to get IV's. I actually just ended up getting IV's on Aug.
2nd. We should make a club. We are in the same boat. I went for 8
months and I thought well its about time I should give in and just
do it. Let me know what you decided to do. I'm homebound with a
PICC just eating, sleeping, IV's, meds, and being a computer nerd.
So if you want to talk, message me. Hope you feel
better!

Lilith · Aug 8, 2006

Hi, everyone, and thanks for your replies and advice! 
 
Well, I called my doc this morning and as soon as I mentioned
orange sputum, he immediately knew it was staph. 
 
But, he DID NOT put me on IV's!! 
 
I'm not sure if I should be happy or upset about this. I've
been through three orals already (Ceftin, Zyozin (sp?), and one
other I can't even remember), and now I'm on another one!
This time its Keflex, which the last time I was on it kicked
butt and took names, so I'm hoping it will do it again this time.
If not, I'm going to wring my doctor's neck screaming,
"I told you so!!" I understand him trying to keep
me off of IV meds as long as possible to decrease the chance of
resistance, but ugh! I'm not sure how much more I can
take! 
 
I AM still tired today, though, so I guess it is the staph and not
my activity level that's kicking my butt *sigh* Anyway,
that's the update. Hopefully this will work! 
 
Oh, and for Christian and Jen, I have a port, so getting stuck
isn't a huge deal for me. I always do home IV's thanks to it.
And Jen, feel free to message me if you're bored. I'm
usually on here just surfing and drawing anyway ^_^. 
 
Thanks again, guys! ^_~

NoExcuses · Aug 8, 2006

<div class="FTQUOTE"><begin quote>Originally posted by: Lilith
I understand him trying to keep
me off of IV meds as long as possible to decrease the chance of
resistance, but ugh! </end quote></div>

Well, this isn't exactly true. Oral meds can cause resistance too.

So if you take Zyvox orally a bunch of times, u could develop resistance just as you could if you took Zyvox in IV form. IV's are known to work better because systemic absorption is higher.

Ceftin and Keflex can be in IV form as well. So being on PO meds (oral) won't keep you away from resistance.

I'm shocked that your doc is puting you on another oral. If I were you, I would insist on IV meds still.....

Lilith · Aug 8, 2006

Oh, I know orals have just as much of a chance of resistance, but
since the IV's are more effective, I guess he's just trying not to
burn too many bridges or something. I don't know... The
Keflex has worked before, though, so maybe it will have some
effect. The problem is that most of the oral meds will
suppress the staph, but as soon as I come off of them the staph
flares right back up. So I won't know if it actually works
until a few days after I'm done with the med, which is a two-week
course... 
 
I look at it this way, though. If it doesn't work, and
something like this happens again, I can always say, "Well,
doc, take a look at what you did so-and-so years ago and you tell
me if it worked or not..."

vestgirl · Aug 8, 2006

Hey LIsa, 
 
I'm shocked that he did not put you on IV's too. After battling a
staph infection for about two months now I would think that the
path that your doctor would have taken is IV's. Hope the oral
antibiotics that he just put you on works. If you don't start
seeing a difference in how you feel I would say to tell the
doc IV time, even though we hate it so much. Because you don't
want to wait too long with the infection because it can cause lung
damage and scaring. I went through a time where my doctors kept on
giving me oral antibiotics and I switched back and forth between
different oral medications and I have a lung cavity due to scaring
from the infection. If I would have just been like give me
IV's, I think it would have helped prevent that cavity like
bubble that is now there. I always become stubborn and think oh my
body can fight it and I fight getting IV's but I've realized that
sometimes its the best answer. If only the doctors could just shake
us upside down for awhile to get all of the goodies out hehe...You
mentioned that you have a port. Do you find IV's to be easier
because you have a port? My veins are not that good so a port in
the future is an option for me to consider.

Lilith · Aug 8, 2006

Hello, Jen! 
 
Yes, I find IV's to be pretty much a breeze with the port. I
don't have to worry about a PICC infiltrating or not being able to
move my arm for a week. The meds can also flow much quicker
because of the size vein the port is in. So much nicer...
The port does have to be flushed with heparin once a month
(to prevent blood clotting the line), but in 6 years I've never had
a problem with mine. 
 
If your veins are bad (like mine were), I highly suggest getting
one ASAP. It makes life just a little easier, and IV's much
less intimidating.

vestgirl · Aug 8, 2006

Yea when I get the PICC put in I have to get it with floroscopy in
angio( I think thats how you spell it). I won't do the PICC any
other way because when I do it that way, they can see my veins and
where they lead it to when they are putting it in. It is actually
neat because I can see my lungs, the vein in which the doctor uses,
and my heart. Makes things a lot easier. Without using the
floroscopy in angio there is a lot of pricking and its not
fun. I'm glad you like the port. If I was to get the port the
doctor mentioned a couple of places that they could put it.
What do you think the best placement of the port would be? And if I
get the port would I be able to get it wet? That is great
that in 6 years you have never had a problem with it. <img src="i/expressions/face-icon-small-smile.gif" border="0"> For
anyone else reading this that has a port, let me know how the port
works for you, both pro's and con's. Talk to you later Lisa!

Lilith · Aug 8, 2006

Hi, Jen! 
 
I've heard you can have the port in many different places, but I
chose my chest, just above my left breast. Its convenient and
because of the breast tissue you can hardly see the bump where the
port is. One thing, though, if you're going to have it put
there. Make sure and tell the surgeon that you want the port
clear out of the way of your bra strap. otherwise it can rub
against it and irritate it. The only other thing about the
port (at least for me) is that using the vest irritated it because
the vest strap was right across the port. They gave me some
little donut ring made out of foam to try and put over the port to
act as a cushion but it still bothered me. One of the reasons
I stopped the vest and went with the acapella. 
 
And yes, because the port is placed underneath the skin, there's
nothing sticking out, so you can get it wet. When it is
accessed for IV's, all I do is tape a plastic bag over the needle
to protect it and I'm good to go, at least as far as showering.
I don't recommend swimming while the needle is in. All
you have after surgery is the small bump where the port is
underneath your skin, and a scar line above it. It fades a
lot over time (at least mine did), so I can still wear a bikini if
I want. Cosmetically it isn't a bit deal. Mine is
pretty durable, too. I've smacked the thing into god knows
how many things, including the edge of my desk from leaning over,
and it still works beautifully (hurts like hell, though!) 
 
If you have any more questions, feel free to ask!

anonymous · Aug 8, 2006

I did not feel well since May, so I took Ciprobay for 3 weeks and inhaled Colistin. As I didn´t feel better, I had IVs for 2,5 weeks. My CRP was ok then, but a CT of the lungs wasn´t so good, so I started oral Cipro and inhaled Colistin again. A week later I had fevers and my CRP was up at 12, so I stayed in the hospital for 2 weeks with IVs with different medicines and cortisone tablets and continued that for one more week at home. I stopped the IVs and the cortisone last Friday and felt well. Yesterday evening I noticed more coughing and a little headache while coughing and today I have fevers again and feel tired and bad....
I had Ivs for over 5 weeks now, so I really don´t know, what to do now...

Uli,44,Germany

vestgirl · Aug 8, 2006

Thanks Lisa for letting me know more about the port. As for the
scar it is just another to add to the ones on my body already. I
had an econium ileus ( I think thats how you spell it) when I was
born so I have a huge pink line going across my stomach. Gives
me personality right and I tend to joke around and make at first
stories out of the scar hehe. LIke oh yes there was a shark or
I got into a fight just to see peoples reactions. And then I tell
them the truth. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just ended up getting the acapella
recently so I know what you are talking about. I like that so much
better then the flutter. It is great using it when I travel and
drive. If I have any more questions I will let you know. 
And Uli I'm sorry that you are not feeling good. Try having your
sputum cultured and blood work to see what exactly is growing in
your lungs. Also check your vitamin levels and see if you are
absorbing vitamin D. I've been told that having a good source of
vitamin D helps prevent infections. Possibly the IV's that you
were on did not kill all of the infection that was growing in your
lungs. Also you might want to see if you are resistant to Cipro
because you are running a fever and that means you might be back to
having an infection <img src="i/expressions/face-icon-small-sad.gif" border="0">. Hope this helps. Feel better.

vestgirl · Aug 8, 2006

Thanks Lisa for letting me know more about the port. As for the
scar it is just another to add to the ones on my body already. I
had an econium ileus ( I think thats how you spell it) when I was
born so I have a huge pink line going across my stomach. Gives
me personality right and I tend to joke around and make at first
stories out of the scar hehe. LIke oh yes there was a shark or
I got into a fight just to see peoples reactions. And then I tell
them the truth. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I just ended up getting the acapella
recently so I know what you are talking about. I like that so much
better then the flutter. It is great using it when I travel and
drive. If I have any more questions I will let you know. 
And Uli I'm sorry that you are not feeling good. Try having your
sputum cultured and blood work to see what exactly is growing in
your lungs. Also check your vitamin levels and see if you are
absorbing vitamin D. I've been told that having a good source of
vitamin D helps prevent infections. Possibly the IV's that you
were on did not kill all of the infection that was growing in your
lungs. Also you might want to see if you are resistant to Cipro
because you are running a fever and that means you might be back to
having an infection <img src="i/expressions/face-icon-small-sad.gif" border="0">. Hope this helps. Feel better.

Lilith · Aug 9, 2006

Jen, I'm glad I could help you out <img src="i/expressions/face-icon-small-smile.gif" border="0"> Feel free to PM me
anytime. 
 
Uli, I would certainly back Jen's advice on getting a culture done.
You may have a new bug (I hope not, but...) that needs a new
'battle plan'. Also, make sure you're eating right/keeping
yourself hydrated, and get your required amount of sleep.
This will certainly help you fight whatever's going on until
your docs can figure it out. Hopefully they just didn't have
you on the right antibiotic combo, but I'm sorry you've had to be
on them for so long! Keep us updated!

To IV or Not to IV...

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