What do you culture??? and CF adult clinic in NJ

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JenniferNJ

New member
Hi,

I am just wondering if everyone on here with CF always has something in their culture.. I have only cultured Psedumonas a few times and most of the time my cultures come back negative.. with only normal flora or normal bacteria in it.. I understand I am really lucky.. though my doctor thinks I just am not giving good samples.. but when I am not sick I hardly cough anything up....which I understand is unusual as well... and since I started the steroids my breathing is so much better..

Anyway being that I am only a few years into this I was just wondering if their was anyone else on here who doesn't always culture something ??.


ALso I am really excited, I know that sounds dumb but one of my doctors just hooked me up with a local CF adult clinic real close to my house.. I have heard some really good things about this guy his name is Dr Stanely Fiel.. He is out of Morristown Memorial Hospital and he has a 20 plus year experience working with CFers in Philly. I talked to his nurse Paula and she sounds so wonderful and knowledgable... I had just started at a CF clinic in March but it was so far from home that it was not practical and the few times I went I never saw an RT or a nutrionest or CF nurse of Social worker and they said this time when I go to see Dr Fiel, I will see all these ppl...


My question is has anyone had any experience with him either in PA or in NJ??? and also about the sputum ??

Thanks so much for any help
 
A

anonymous

New member
Hi Jennifer,
I don't have any experience in NJ or PA, but I can tell you that many times when I was younger I did only grow out 'normal flora' in my sputum cultures. Like you, I was diagnosed late and when I was well didn't produce much sputum. I would say that lasted well into my 30s. In the past couple years I have found I am more productive on a daily basis and when I am cultured, there is always something in there. I hope you continue to do well for a long time! Good luck with your new clinic.

Kim
4 w/cf
 
A

anonymous

New member
Hi Jennifer,

I too was diagnosed late (age 31) and since the diagnoses, I have only cultured Pseudo once, and Candida a couple times, but I have cultured stenotrophomonas consistently for a year and a half (now but nothing else). Also, on a daily basis when I am not sick, I don't really cough up a whole lot of junk either.

Jen 35 w/cf
 
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anonymous

New member
OOPS...I meant to say "for a year and a half now (but nothing else)" <img src="i/expressions/face-icon-small-wink.gif" border="0">

Jen 35 w/cf
 
D

Diane

New member
Jennifer,
WOW!! Dr. Feil was my doctor and Paula was my nurse when they were still in phila. YOU WILL LOVE THEM!!!! I miss them so much and was so sad when they told us they were leaving. I so want to go there to visit them and will someday. I have Paulas email and we email back and forth here and there. When i find something out that helps that isnt conventional ill email her and let her know. They are VERY open to new things which is a great thing since some doctors are all about only standard therpies. You will love them !!
 
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anonymous

New member
Oh Yippie.. I am so, so, so happy to hear that. Paula sounded so nice on the phone and she sent me a letter, I can't wait to go and see them...
I will tell them that they are missed in Philly, but I am not sending them back...


Thanks so much for replying to me.. I really appreciate it..

I am also so thankful to find out that I am not the only one with CF that doesn't culture anything all the time.. For Jenn who doesn't bring a lot of stuff up what do you do then when they want a culture?? I am having a hard time producing on demand? Also are your PFTS pretty good? My lung xrays only show nodules which I don't even know what that means.. but I know my x rays have improved so much since I started the steroids...

Thanks again guys,

Jennifer
 
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anonymous

New member
Dr. Fiel is nice. I go to Hanneman in Philly, like Diane. Dr. Fiel left shortly after I came there, but he has a great reputation with CF and seemed like a nice guy. I liked Paula also.
 
C

Cutecurlz

Guest
Hello Jennifer....I've been told that I grow the Staff bacteria. I too never ever never ever cough anything up, when I go to clinic they usually gag me with a very large Q- Tip to get their sample.
 
C

Cutecurlz

Guest
Ooooops forgot...I was diagnosed with CF at the young age of 3.....now 37 yrs young and my brother was diagnosed young too....he's now 27, my sister(28) lucked out and never got CF....oh well suckx to be her, if she only knew what she's missin'. haha
 
J

jleigh

New member
Hi Jennifer,

Wanted to answer your question about producing sputum on demand. I am actually always able to do it after my spirometry...gets things really loosened up after all that blowing!

Also, on my chest x-ray/CT's I have bronchiectasis in both my upper left and right lobes and in my left lower lobe.

PFT's are still very good too <img src="i/expressions/face-icon-small-wink.gif" border="0">

Jen 35 w/cf
 
A

anonymous

New member
Beowolf here.

I culture Staff resistant and psudomonias resistant bacteria. I knew I had one of the resistant strains, but not until recently did I learn that I have both.

I kinda makes me worried.

33/CF
 
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anonymous

New member
Hi, I am the mother of a 14 month old daughter with cf. She has never tested positive for anything. She has actually done very well. We stopped all of her breathing treatments in May, just had to start them back last weekend because she started coughing. Is this good? I'm just very concerned and don't know whats best. She was diagnosed at 4 months. I' m also thinking about putting her back in daycare, so I can go back to school, to get my RN. She has been to daycare only twice since diagnosed. She did really good. I also think she needs interaction with other kids. This is a in home daycare, where her 4 yr old brother (w/o cf) goes. Please help!
 
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