What to do?

[thefrogprincess]

Hey all, most of you are more experienced with IV antibiotics than me (I've NEVER had to do it) so I knew this would be the place to ask. I don't produce much sputum and they always have a hard time getting a sample from me at clinic, they usually have to swab me and we all know that swabs aren't the most accurate. My problem is this: My PFTS have gone down about 10% in the last six months, but since they can't get a good sample they don't know if I even need antibiotics let alone what kind. Obviously I am reluctant to proceed with antibiotics not knowing if it will help. But of course I don't want to cause damage to my lungs by not doing anything. What do you guys think?

My next question is this: I've been told that you should do your polmozyme in the morning, they don't want stuff settling in your lungs while you sleep. But I'm SO not a morning person and I forget to do it about 3 days a week, especially on the days I have to open at work because I'm not awake yet when I leave the house. Obviously you don't want to do the polmozyme right before bed but what about in the evening when I get home from work? On the days that I open I'm usually home for about 5 or 6 hours before I go to bed, so would it really be bad to do it then?

 

[blindhearted]

If I couldnt get a culture at all and my PFTs were dropping, I would take some kind of antibiotics. I know there is a chance of resistance that way, but lung damage is worse. I usually request antibiotics while I'm waiting for a culture to come back just as a precaution. But I can usually tell if its something more than a drop in PFTs. When I get sick I usually dont want to eat, I sleep a lot (like 16 hrs or multiple naps a day). My PFTs have dropped before by 2 - 3 % when I was feeling good, so it could be natural progession. But I would suggest talking to your doctor about taking an oral antibiotic for two weeks or so and see if you start improving.

As far a pulozyme, I take it twice a day, and I am not a morning person either. I usually take the first at 5am (half awake), then go back to sleep until I have to get up at 9am and do another albuterol treatment before work. At night I take it between 8 - 10 pm and go to bed about 11pm or 12am, if not later (as u can see by the timing of this post) and of course do another treatment if I feel the need when I stay up really late. I have never heard about them not wanting the stuff to settle in your lungs, and my doctors know my sleep pattern. I just know as long as there are no less than 9 hours (they prefer 12 hrs) between the first dose and second you should be okay.

Hope this helps. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[DebbieC]

I would try a few weeks of agressive pulmonary therapy without IVs, and see what happens. IVs aren't all bad, but if you're feeling alright, why deal with it unless you have to? Exercise, do your therapy twice a day, pulmozyme religiously, and ask about TOBI if you're not on it yet. If they are talking about sending you in for a tune up, what you benifit most from is the agressive therapy, and it's a chance for the docs to get a bunch of stats on you (the antibiotics are really a secondary defense).

 

[anonymous]

If you're not coughing up a lot, PFTs have gone down and you're reluctant to use antibiotics . . .

Hypertonic Saline! If you've already tried or ruled out this route you may as well ignore my reply. It's worked for me and some others. Here's a discussion that I think you may have even replied to. <a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=2863">Hypertonic Saline</a> I'm sure no drug works for everyone (which is why I'm not on Pulmozyme) but I hope something helps you get your numbers back up!

Jason 30 w/cf

 

[HollyCatheryn]

I'd first try stepping up my exercise. By that I mean concerted excertion. I know for me, if I am not actually exercising my PFTs drop even though there isn't an infection (need for antibiotics) going on. I'd also take the Pulmozyme whenever you can take it if it helps you. Take it in the AM as often as you can do it and the other times, just take it when you can. I think being consistent about taking it daily is the most important thing more than time of day. But, like I said, I'd start with exercise. It always makes a big difference for me. I know it is super hard when you work and when your work schedule is variable. But, it is SO important.