IVs

[sue35]

Has anyone ever refused getting IVs? Can you even do that?

I am scheduled to get IVs on July 12th because my lung function is down (45 down from 52) and I am hopefully going to teach in the fall. This was all before I started HS and exercising and I am already feeling A LOT better. Normally I wouldn't care too much about IVs but I am in so much pain from shingles right now that I can't take more pain mentally or physically. Once I get over shingles to go straight to IVs is too much for me.

I feel that if I can get all the junk up (and IVs have never done that, so far on HS is) then I would feel so much better.

Any thoughts on refusing?

Su 24w/CF

 

[smoothdave]

ME PERSONALLY I HAVE NEVER REFUSED THEM, I AM ONLY ON THEM ONCE OR TWICE A YEAR SO I JUST REALLY TAKE IT FOR GRANTED AND GO ON THEM, AT THE END OF THE IV'S I AM ALWAYS FEELING A LOT BETTER AND REALLY THINK IT WAS WORTH GOING ON THEM,.... ( MY PERSONALY OPINION) BUT I AM NOT SURE IF I WOULD EVER REFUSE THEM? IF I WAS ILL THEY ARE PUTTING YOU ON THEM TO MAKE THINGS BETTER,(OR THATS THE WAY I C IT..!)

DAVE

 

[anonymous]

I would usually agree (minus that I am losing faith in my doctors) but I acually don't feel better with IVs. My lung function doesn't go up or anything. I can honestly say that the HS is what is making such a difference, I actually look forward to doing it. But you are right...maybe I am just being stupid for thinking about refusing them<img src="i/expressions/face-icon-small-sad.gif" border="0">

I just hate going on them when I know they won't help again

Whoops, forgot to log in<img src="i/expressions/face-icon-small-smile.gif" border="0">
Sue 24w/CF

 

[NoExcuses]

i have pushed for a delay. i often "bargain" with my doc. give me another month of exercising and doing meds vigorously. if my PFT's don't improve (or if my white blood ell count doesn't go down) by then, then i'll agree to IV's.

for the most part, the human immune system cannot fight PA on its own. so if you have flare up, nothing but antibiotics will treat it.

some parts of europe have been aggressively using antibiotics for years - some countries even requiring IV tune up's twice a year regardless of health status. clinical outcomes have been slightly better than our less-than-agressive treatment here in the US. I know my doc, for one, is less likely to "bargain" with me than in the past because he is determined to preserve my lung function.

the longer you let PA grow out of control, the more lung tissue that you will lose - and you will never get it back.

 

[JazzysMom]

I have "bargained" with my Doctor over the years & she has worked with me well because she knows how hard the admission are for me being so far from home. I have also learned over time when I TRULY can bargain & when I am just trying to fool myself. ONLY you knows for sure if you are fooling yourself by thinking the HS is enough or if you are delaying the inevitable!

 

[MCPappy]

I would say keep using your meds and if you are feeling good tell your doctor that you want to see if your PFTs have improve and see if you still need them. Doctors may know your PFT scores and cultures and things like that but no one else knows how you are feeling and if you feel like you cant handle being on them right now or feel better and dont need them then that is your decision to make. I hope that things work out for you =)

 

[thelizardqueen]

I've always had to push to GET IVs, not the other way around. All I can say is that I don't think they can actually force you to get them, short of tieing you up.

 

[chantelfox]

I hear ya Sue!  I think you were the one who responded to me
last week when I was debating whether or not to go in and get IV's
(if not, your dilemma is a weird coincidence).  Anyway, I
ended up going in and  I just got home from the hospital a few
hours ago.<br>
 I have done the bargaining thing and I agree with Melissa
that only you know if you are prolonging the inevitable. I have
refused many times only to make matters worse. This time my
bargaining chip was to get in, get my PICC put it, be out within 3
days, and do home IV's. I have always done home IV"s, but
since this is a new clinic for me they wanted me to stay in the
hospital for 2 weeks. I was like "heck no!", because I
usually go in to get my PICC line and get out in one day. So this
"out within 3 days thing" was the compromise.<br>
<br>
I hate IV's and refuse EVERY time when they first suggest it. This
time my PFTs were actually HIGHER than normal. I went up and was
better than I have been in a couple of years. But, since I am
beginning my first year teaching next year, like you, the docs
thought that it would be a good idea to get my lungs in as best
shape as possible. I thought it was dumb at first, but when I was
honest with myself I knew my lungs were not as good as they
could be ( my mucus was thicker, greener and more persistent than
usual, even though my PFTs were better...) The docs said that even
though my PFTs were up, they could tell by the crackles in my lungs
and the looks of my mucus that the psuedomonas was " getting
ready for an attack".  They said one good bug that I
could be exposed to by my students could land me in the hospital.
That's definately not something I think I could handle my first
year of teaching. So, I decided to give myself a running start and
try to make it through this coming year as healthy as possible. I
figure I will give it a shot, because schools are right up there
with hospitals in the amount of germs they harbor. Actually, I
heard that schools have more.<br>
<br>
In the end, it is your choice and you know yourself the best. IF
you think that you truly cannot handle IVs, then try it your way,
beef up your treatments and therapies and see if you can fix things
on your own. If you think that you are refusing because you just
don't feel like having IVS, but you know that they may help you
have a better chance at staying well this coming school year, then
I would get them out of the way.<br>
<br>
I hope you do get better and stay healthy this coming year!
 Take care!

 

[sue35]

Thanks you all for the info.

Chantel it is scary how much alike we are. Hearing your PFTs were actually higher makes me think that maybe it would be the smart thing for me to get them. I REALLY don't want to but know that it would be tough to do a whole year teaching without them. I wish you all weren't right!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Well I have a little over a week more so I guess i will see how I feel but now I think I might be fooling myself. Well, a summer of shingles and IVs...how fun!<img src="i/expressions/face-icon-small-sad.gif" border="0">

Thanks!

Sue 24w/CF