IV's

[anonymous]

A lot you say you go in for iv's once a year or even more. How do you or the doctors make that decision. I've only been in the hospital once in the last 18 years, in Jan., and it was pretty much my decision. I'm wondering if I should have had Iv's sooner. I've been off iv's for a couple months but I still don't feel that great. Basically I'm wondering what the criteria is for going on IV's antibiotics. My pft's have dropped by half in the last 7 years and only once did the doc suggest iv's. Should something have been done sooner?

 

[Scarlett81]

tough call.

Depends alot on your particular cf team of doctors. Some are very strict. Others let the patient decide everything. I've had both. I had a doc once that was not agressive at all, and didn't address any issues I brought up seriously. That didn't work for me. But I've heard of a few cfers that want to make the decisions themselves.
I prefer more aggresive doctors. Mine can even go overboard I think. But that's what I want.
Going on IVs should depend mostly on your PFTs, if you are culturing anything in your sputum, which should be tested every 4 months-and how you feel. If you're tired and not doing things you once were, maybe you need Ivs.
I also recently decided to do "tune-ups". I used to wait until I was sick enough-(had a raging infection)- and then start IVs. But now, if I even start to feel like ones starting- Or if I have a big event coming up in life, I do a 2 week tune up. That way-Ivs are also easier for me. I'm not so sick to the point where I'm totally miserable. I can still function and do IVs at home.

 

[thelizardqueen]

I haven't been on an IV for over 10 years now, and that was the one and only time I ever had an IV. It was simply for persistant plugs that made me short of breath, not an active infection. My doc won't put me on IVs (and I completly agree with him on this) unless oral antibiotics and inhaled antibiotics won't do the trick. So far I haven't had to worry. my FEV1 from a year ago was 87%, and for the most part I feel great unless I'm sick. I guess it all depends on the care your doctor shows, how you feel, what does and doesn't work for you, and your PFTs.

 

[JustDucky]

I am lucky to have a very good doc, she knows me better than I do at this point LOL! She usually goes by what is growing out in my sputum, how I feel, how my lungs sound and looks closely at my symptoms..am I running fevers, is my sputum starting to crawl out of my trach again, etc.... I am on IV's about every other month, this last stretch hopefully ending this Wed.,(after 6 weeks but who's counting????) my sputum looks alot better, my lungs don't hurt as much..I still am running low grade temps, but I am not too concerned. I just want off LOL! Needing SLEEP!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
My PFT's aren't monitored anymore, they really can't do them since I reside on a vent 24/7...prior to that, believe it or not, I had mostly restrictive lungs...the PFT's did suck though. Since my PFT's don't get measured anymore (at most, the docs see what I can pull in tidal volume on my own, which is pathetic....I think a newborn does better than I!LOL!) the docs rely heavily on my symptoms and cultures as I have mentioned before.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JazzysMom]

I use to go on iv's when I let myself get so sick that nothing else would work. Now we monitor me closely both with me actually paying attention to the little things that use to slip past me as well as regular sputum cultures, xrays & checkups. My doctor never throws me into iv's without trying to handle it with oral &/or a step up on treatments etc. She knows the iv's (hospital or home) take a lot out of me. We definitely work as a team, but yet if I am in a denial state she will step up & give me a reality check!

 

[coltsfan715]

When I was younger - 11 and below - my doc put all of his patients in for tune-ups on occasion. For me that was about once a year. I went in whether I really needed it or not, just to keep me at my best. When that doc passed away I obviously had to go to a new office.

At the new office they functioned with the thought that the longer I went without going in the hospital the better. I ended up going 3 years without IVs, but I was at the doc every month and every month they were putting me on a 2 week run of an oral antibiotic. I did that for almost a year til I finally broke down and begged them to put me in the hospital because I was only continuing to get worse. After that they started putting me in about once a year. They would do a run of orals and if that didn't work I would go on IVs. They did PFTs, cultures and judged my weight or weight loss and how I felt as to whether or not to put me on IVs.

Now it is pretty much the same. I usually take orals first then if my xrays, PFTs, cultures don't improve or I continue to feel bad/worse I go on IVs. There have been occasions that oral antibiotics are completely skipped, but that has only happened a few times when I have felt so sick I told the doc just give me the "good stuff" (IVs) cause I didn't think orals would do anything.

It is hard to say whether or not you should go in the hospital. It seems to be pretty different for each person. I would talk to your doc about how you are feeling physically and ask him/her how they make the decision of whether to put you on IVs or not.

Good Luck and hope you start feeling better,
Lindsey