Monday, November 19, 2012

Our clinic visit went....

GREAT! Everything looks good. Drew is growing great, sounds clear, looks good. Our culture results came back clean so all around things were really good!

A couple of weeks ago, just after the NACFC, I had emailed Drew's doctor a bunch of questions. They were just things that I'd heard at the conference that I was curious about or whatever. We talked about some of it a little bit while we were in the office, and what I learned was that there weren't really cut and dry answers to most of it. Here's what I wanted to know:

I went to the Infection Control session at the NACFC. There was an interesting presentation on patient to patient spread of bacteria as identified by genotyping. They were suggesting that droplets can remain in the air for anywhere from 45min - 2hrs after a patient has left the room. In the past, when Drew has cultured pseudomonas, I go a little nuts -  trying to clean things differently and throwing out bath toys that may be grosser than they should, clorox wiping every surface before anything touches it  - then after 24hrs I realize that i'm being nuts and go back to being reasonable. I will admit that I have often wondered if he could be picking something up in clinic. As much as I realize the value of having him there every 3 months as well as when he is sick, I can't help but get nervous as he plays on the floor and touches everything he can reach. But he's two and I have to balance letting him be a kid with my nerves and need to keep him healthy. Anyway, my point/questions is whether you guys every genotype the different bacteria that patients culture to determine if the same strain is being passed between patients who may have shared a room? I'm sure that the rooms are cleaned between patients, but does that include everything from the floors to the light switches and everything in between? Is there ever any measure taken to clean the air between patients? The presenter suggested that there was a significantly increased risk of acquiring a pathogen if you are in the same room after a patient who is colonized with something like pseudomonas or burkholderia cepacia. Just wanted to see what you thought about that. 
The next question is about neb care and breathing treatments. I've asked this to Ginger before but I still don't totally understand it so maybe someone else might. It is suggested that after sterilizing your nebs, you rinse them with sterile water. Aren't they already sterile? Also, I think that we use more neb cups in a day than average and here is why. Once we use a neb, it is damp. We set it aside until its time for our next treatment. For us, the place we keep it is with the nebulizer machine which is on the bottom shelf of a table where we keep all of Drew's meds and equiptment. So now the damp neb is in a dark place. He was just breathing into it - if he has got some bacteria in his airways and is coughing into the mask/cup, couldn't this neb just be growing bacteria only to be inhaled again during our next treatment? I feel like I'm paranoid that he's going to re-colonize himself with whatever bacteria he has so I end up using new nebs almost every time. I swear I'm not totally neurotic, just trying to figure out the best way to do things to keep Drew as healthy as possible.Also on the neb front, I notice when Drew was in-patient in CHOP this summer that the Drew was coughing a ton during his vest and breathing treatments, even more so than when he was at home and sick before we were admitted. I felt like it was the most productive airway clearance we had every done. I asked a bunch of questions (i know, hard to believe) and realized that they are administering the medications at 50psi and the machines at home only run at 30psi. So at the conference I found Pari and asked them and they didn't really have a good answer for me. So I asked Genentech and Novartis and both told me that the indications were for medications to be administered at 30psi - that's what all their medications were tested at and to ensure proper dosage and absorption into the airways. No one knows why the hospitals run at 50psi but Pari, Novartis and Genentech all seemed shocked to learn that the medications were being given differently than indicated by the pharmaceutical companies. Do you know why this is or have thoughts about this discrepancy? 
I saw a presentation on Gallium in eradicating psuedomonas. (Symposium 13). My two questions are 1) Do you think that this could be an option for Drew since he shows an intolerance to inhaled antibiotics and 2) Can bacteria become resistant to it? It was really interesting to listen to the presentation. Its already approved by the FDA. It looks like its been mostly used in adults, but it just sparked my interest as Drew seems to continue to grow pseudomonas. 
My last question is about the use of intranasal DNase to help keep sinus disease under control (Workshop 28). Is this something that you're at all familiar with? I can't tell if this was just a study or if its being used in some patients. Whenever we see Dr. E, he tells us that he doesn't usually see CF patients with as advanced sinus disease as Drew has until they are about 7 or 8 and that Drew is the youngest patient he has ever done surgery on. I thought that if the intranasal DNase therapy was available, it might be beneficial for us to at least try it.

I think they were all pretty good questions. The Gallium presentation was specifically of interest as we seem to be intolerant to inhaled antibiotics, at least for now. The presentation led you to believe that pseudomonas is never really truly eradicated, just hidden way far down in the lower airways and not always causing a problem. If something like Gallium can really eradicate it, I'm definitely down for giving it a try. We currently aren't culturing it, but if we do again I will probably resurface this question.

One other thing I wanted to share tonight about the CFF that is pretty incredible. They have now partnered with Pfizer on a Drug Discovery program for the Delta F 508 mutation (one of Drews!) over the next 6 years. I think people underestimate how close we are to a cure for this disease. Its funding that's keeping us from curing this - that is it. The more money, the more research and the cure will be found. Talking with the top scientists and researchers, the cure is there...we are so.stinkin.close. This is just an amazing opportunity for the CF Community. Read the article by clicking here.

Happy Thanksgiving, y'all. Hoping I have some time over this break to get some thoughts down and get some good posting done here!

1 comment:

  1. Hi there Erin! Nice to "meet" you and Drew. I am adding your blog to the CF blogroll now! I thought your questions for the doctor were fascinating - especially about cross-contamination. I'd be interested to know what the response is!