IVs and when?

[thelizardqueen]

With a few people on here going off to the hospital, it made me start to think. I haven't been in hospital for a chest infection in about 10 years. For all you guys who go in on a regular basis, at what age did you start going in regularly, and what was it that made you decide that you needed the IV more then an oral or inhaled drug?

I've always thought that regular stays at the hospital means that you're at somewhat of a decline, that your health isn't as good as it used to be. Am I wrong in this thought?

 

[Emily65Roses]

I started going in somewhat regularly when I was 16, almost 17. So back in 01. Since then, it's been twice a year, give or take. There was two years where I was only on like once, and then there was a year that I was on them three times. My most recent has been September. So so far so good for me. Course, usually it seems I go on IVs during the summer or at the end of it. So I could be in for another round sometime in July/August for all I know. I feel pretty okay though.

They started in on IVs because I've got lots of pseudomonas hanging around, throwing toga parties, and my doc was like "Effff this!" *ruins all the bacterial kegger fun*

Oral meds started getting less helpful. Cipro, for me, doesn't work at all anymore. It gives me AWFUL diarrhea for two weeks, and doesn't even do the work it's supposed to. So I don't do it anymore.

I just started Colistin month on/month off in February, and it's doing pretty good things. I'm not 100% stable and fantastic, but I feel generally overall better than I have in a few years. Of course, that won't last forever. Who knows how long, but the Colistin will start being less effective somewhere along the way. And then, likely, we'll go back to the IVs.

Basically I go on them when the doc says, "Okay, let's try IVs." In September I wasn't feeling TOO awful, but I had lost a bunch of weight, and wasn't <b>fantastic</b>, so he ordered a round of IVs.

My health has gone downhill since I started doing IVs, but not rapidly. It's not like "Oh no, here comes IVs!" *rolls over and croaks* Before I got MRSA at 16, my PFTs were always 90-100%. Since then (so in the past 5 years), I've gone down to where I hover around 65-70%. So that's, at most, about 30% loss in 5 years. Not too bad, I think. *shrug*

 

[Lilith]

Well, its funny, because I was just fine until I turned 12. That's when I had my first hospital stay (since I was diagnosed). I would usually go in every 4 months after that, though I did manage to go 9 months one time without an infection. Then it slowly declined to about every 3 months until I transferred to the adult CF program. Now I'm only admitted when I have a bad infection, which is usually only once a year in February, and the usual 3-month infection gets treated at home.

The only reason they bring me in is if I'm so short of breath that I can barely walk, or if I'm dehydrated. Even then I only stay for a few days and then go home on IV's.

As for oral vs. IV, a lot of oral meds don't work that well for me. My doc mostly always gives me a pill first, and if that doesn't work, then we move to the bigger guns. It really depends on which bug is giving me the issue as to whether or not I go on IV's.

I think you're pretty much right in your theory, that going to the hospital more frequently signals a decline, but I think it also depends heavily on your doctor. My old one preferred a hospital stay for each infection to monitor it. My new doc doesn't want me to be in the hospital (or germ pool, as he calls it) any longer than I have to be for risk of catching something else.

 

[littledebbie]

My first real hospitalization was at 8. Then I went once or twice a year as needed until I was about 19. Then it sort of slowed down. I think I have been on home iv's about twice since then.<br><br>

My peds doc told me her observations once ( I'm not saying this is fact or anything just saying what she had noted and shared). It seemed to her that females had a harder time earlier on and had a somewhat slow progression and then they tend to plateau. While males stayed overall healthier longer and then they take more of a quick dive. Like I said this was just her observation and she wasn't saying it was true across the board, but over the years i have noticed a similar tendency...sort of interesting don't you think?

 

[thelizardqueen]

The reason I ask, is because back in January I got a really bad chest infection - I was in emergeny because I couldn't breath, I could barley get around due to no energy, I was always blowing into a paper bag trying to get my breathing under control, and I could hardly sleep due to trouble breathing. My doc put me on 3 weeks of Cipro, and it hardly made a dent in my infection. I then got sick again and was sick pretty much through to March. I've been on Tobra one month now, and I'll start my one month off, but I notice myself getting kind of junky if I miss a treatment due to be tired. I just wonder if IVs are in my near future or if I should start considering them. I hate the idea of going on them, as I've only been on them once, so I guess you could say I'm terrified that I may be getting worse, and am trying to hold off until the last minute. My doc hasn't brought them up yet, but I'm just wondering for everyone else out there how they knew they needed them, and how long its been that they've been on IVs on a regular basis. Thanks guys!

 

[Lilith]

Hmmm...if you've been sick for that long, I hate to say it, but you should consider just getting on the IV's and getting it over with. You're right, IV's suck, but its better than suffering with an infection that's constantly dragging you down. Plus, if you let it go for too long without the propper treatment, it'll take you longer to bounce back. Usually, if I feel crappy for more than 1 week (i.e. joint pain flares up, can't sleep though I'm exhausted, can't even make it to the kitchen without catching my breath), I call the doc. If in 4 days of an oral med I'm not starting to feel better, I take it up a notch to the IV's.

 

[thelizardqueen]

Hmm...I'm not sure if its an active infection I have though. I cough periodically througout the day, but I only get kind of junky when missing a treatment. My energy levels are pretty good right now. I'm definitly a lot better then back in March. I just find that I've got a lingering cough so to speak. My last culture only showed minor traces of pseudo (level 1 I think compared to my usual +3 or 4). I think my big concern right now is that oral isn't working as well as it used to, and inhaled Tobra is working, but taking a while to work. I'll have to talk to my doc about this on thursday, see when he usually admits patients I guess.

 

[Tess]

I actually prefer to be on IV antibiotics rather than an oral, for the simple fact that I can see great improvement with the Iv drugs and oral ones seem to only work while I'm taking them.

IV drugs seem to get rid of the infection. And give more time before the next one.

Oral drugs work while takking them and I might be alright for a weekend after I finish them, then I can feel the infection back again.

I actually just finished two IV antibiotics on the 12 of April and still feel pretty good ...

So personally I feel the IV drug go to the infection and kick it the ^%$* out. Much better than suffering for weeks to have the oral meds work for a week-end.

 

[JazzysMom]

All of my life I had periodic admissions. It usually came when things could no longer be handled at home. The same goes now. The only difference is the oral antibiotics now are more powerful so if they dont work then I need the extra CPT & IV's until stable then I come home on iv's. I use to average 7 years in between admits then 5 then 3 then 2 then 18 months now I seem to be at once a year. When I require that its a real slammer that hits me hard & fast. All Winter I weathered fairly well & then BOOM! I also know that last year & this year are not my "normal" CF problems. If it was just congestion I think I could handle it, but when the airways close down......I learned not to mess around!

 

[RoyalPrince]

the way i see it is if you are feeling bad (out of ordinary) you should prolly have something done because with each infection comes a little more decline and posible irreversible damage to our sensitive lungs... yeah it sucks but better to have the infection cleaned up with antibiotics than deny their is a prob and let it go and get worse...

just my thoughts, but everyone and their respective bodies are different...

 

[thelizardqueen]

I guess I just wonder, because I see these people going for "tuneups", etc. And its never occured to me about tuneups. I don't think I need it, but I was just wondering about everyone else. I know that my Tobra is working - it just takes a bit to kick in.

 

[JazzysMom]

I use to consider tune ups as admissisons before anything is really wrong. The same meds & treatments would be done, but the idea was to avoid things going haywire. It didnt work for me. I still got sick & ended up in the hospital so I dont bother unless I am in need. In addition I think with all the resistance to antibiotics why put the meds in me until I need them!

 

[anonymous]

I never had "tune ups" either until I turned 25. I never went into the hospital until I was 23. The IVs SUCK, but I feel SO much better after I have them that I see the benefit. It scared me to death the first time I had to have one. I waited WAY too long. I lost 20 pounds and felt horrible. I was sleeping ALL the time. Now, I know the signs and I call my doctor and let them know things aren't right. Tobra is great and does help, but sometimes it's best to get a boost from the IVs.

 

[NoExcuses]

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[anonymous]

Actually, here in Europe, just to make the point, its only if you have a chronic infection, (like chronic pseudomonas), that you go in every 3 months (or 6), whether you are sick with it or not. If you have no chronic bacteria in your lungs (which is rarer the older you are, obviously) then there is no need to go in for IVs.

Essentially, its not prophylaxis though, as you are actually treating an infection that already exists.

 

[Diane]

I started my first "tune up" when i was 32, because thats when i got cepacia. I had been in the hospital before that, but that was mostly for diabetic issues. My real problems with my lungs didnt actually start till i got cepacia............................ Then the fun began <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

 

[Jane]

My son went in for IVs the first time when he was nine. His pfts dropped a little and his doctor thought it was a good idea. For two years both boys went every summer, but then when they found that weird bacteria, its been twice a year.
They also have IV antibiotics following sinus surgery- they're each had two.