CF Clinic visits

[anonymous]

Here is something that I think will freak you guys out... After all it freaked me out.

I used to go to the Phoenix Childrens Hospital until it was discovered that I received Pseudomonas aeruginosa from the FEV testing.

I am currently in the process of filing a class action lawsuit against the clinic on the grounds that while they would replace the round paper tube that I blew into, the clinic never properly cleaned out the main tube or the attaching filter, allowing for Pseudomonas to culture and grow inside the main tubing of the machine. So, when I or another CF patient breathed in and out before blowing out, we were inhaling Pseudomonas and possibly B. Cepacia.

I will be doing an interview with a local TV station next week and hopefully this issue will go national and warn other CF patients on the dangers of attending CF clinics.

 

[anonymous]

Here is something that I think will freak you guys out... After all it freaked me out.

I used to go to the Phoenix Childrens Hospital until it was discovered that I received Pseudomonas aeruginosa from the FEV testing.

I am currently in the process of filing a class action lawsuit against the clinic on the grounds that while they would replace the round paper tube that I blew into, the clinic never properly cleaned out the main tube or the attaching filter, allowing for Pseudomonas to culture and grow inside the main tubing of the machine. So, when I or another CF patient breathed in and out before blowing out, we were inhaling Pseudomonas and possibly B. Cepacia.

I will be doing an interview with a local TV station next week and hopefully this issue will go national and warn other CF patients on the dangers of attending CF clinics.

 

[anonymous]

To respond to Holly that is who I am seeing 2morrow, Dr. Rosenblatt. I have a funny feeling I will be going into the hospital but I have been to that hospital before so not a big deal.

 

[anonymous]

To respond to Holly that is who I am seeing 2morrow, Dr. Rosenblatt. I have a funny feeling I will be going into the hospital but I have been to that hospital before so not a big deal.

 

[kybert]

can you actually prove you caught it from the machinery? no hospital cleans out the machinery after every patient.

 

[kybert]

can you actually prove you caught it from the machinery? no hospital cleans out the machinery after every patient.

 

[anonymous]

I have to agree w/ Kylie here. Pseudomonas is everywhere (i.e. swim pools, water fountains, possibly your home shower, etc) and frankly, it's just a matter of time before all of us CFers get it. I've had it' since I was 7. I think that will be hard for you to prove, just my opinion, good luck.
I have a suspicion that I got MRSA from the CF Clinic, but it's hard to prove that. I could have got it at the dentist from their tools, possibly from someone that coughed in front of or on me at the grocery store, etc, etc, etc. I just can't prove it, so all I can do is speculate.
Also, if I remember right, I asked once at the CF Clinic if they throw out those plastic mouth pieces after each use & they said that they sterilize them, which I had heard from another respiratory therapist is not recommended because of the paper filter inside and this RT said they throw them out after each use at the clinic he was at?? I'm sure each clinic has different practices on this.
I do agree, though, that some awareness should be done to force the CF Clinics to comply w/ more strict regulations then they have now, so hopefully this will help. Let us know how it comes out.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I have to agree w/ Kylie here. Pseudomonas is everywhere (i.e. swim pools, water fountains, possibly your home shower, etc) and frankly, it's just a matter of time before all of us CFers get it. I've had it' since I was 7. I think that will be hard for you to prove, just my opinion, good luck.
I have a suspicion that I got MRSA from the CF Clinic, but it's hard to prove that. I could have got it at the dentist from their tools, possibly from someone that coughed in front of or on me at the grocery store, etc, etc, etc. I just can't prove it, so all I can do is speculate.
Also, if I remember right, I asked once at the CF Clinic if they throw out those plastic mouth pieces after each use & they said that they sterilize them, which I had heard from another respiratory therapist is not recommended because of the paper filter inside and this RT said they throw them out after each use at the clinic he was at?? I'm sure each clinic has different practices on this.
I do agree, though, that some awareness should be done to force the CF Clinics to comply w/ more strict regulations then they have now, so hopefully this will help. Let us know how it comes out.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

i have always been given strict instructions never to breathe in through a piece of machinery, for that very reason of risk.

 

[anonymous]

i have always been given strict instructions never to breathe in through a piece of machinery, for that very reason of risk.

 

[Emeraldmirror]

Because I live in Ontario, and the clinic I go to is in Toronto, now everytime I go we HAVE to disinfect our hands and they make you fill out a SARS screening form. Before and after our PFT's the nurse wipes the chair and the machine down, she makes you wash your hands before and after you're done and she wears a mask. The whole SARS thing sucked. I couldn't go to the CF clinic for a year. The good thing is I was doing a study drug in a near by city and they took sputum samples and did PFT's once a week for a month, and I had plenty of extra prescriptions. But basically the hospital I go to now has really cracked down on sanitizing everything since SARS.


Ashley 20 w/CF

 

[Emeraldmirror]

Because I live in Ontario, and the clinic I go to is in Toronto, now everytime I go we HAVE to disinfect our hands and they make you fill out a SARS screening form. Before and after our PFT's the nurse wipes the chair and the machine down, she makes you wash your hands before and after you're done and she wears a mask. The whole SARS thing sucked. I couldn't go to the CF clinic for a year. The good thing is I was doing a study drug in a near by city and they took sputum samples and did PFT's once a week for a month, and I had plenty of extra prescriptions. But basically the hospital I go to now has really cracked down on sanitizing everything since SARS.


Ashley 20 w/CF

 

[HollyCatheryn]

I've seen MRSA talked about several times on here, but don't know what it is. Can somebody tell me what MRSA stands for and what that is?

 

[HollyCatheryn]

I've seen MRSA talked about several times on here, but don't know what it is. Can somebody tell me what MRSA stands for and what that is?

 

[ladybug]

Hi again. Interesting (and scary) stuff ya'll have been posting! I wanted to mention that even though my clinic maybe doesn't practice the best infection control, I think they're a GREAT clinic with great docs! They've kept me healthier than I ever was before coming here! I believe that there should be some sort of infection control process that is consistant across every center, but until then, we'll just have to grin and bear it and do our best. One thing I always do is keep antibacterial with me so I can pour some on my hands after contact with each doctor. I feel better that way. I must say though, that I really enjoy my clinic and they're an AWESOME group of people. I think I feel the way I do about the infection control being so disorganized there because the other clinic I went to disinfected EVERYTHING and we wore masks and gloves, etc. and I felt so good about that.
Anyway, thanks for letting me rant. I still do think I'll be going to a different clinic in the future however because we're moving and I think if I were to stay here I'd keep with the one I'm at and maybe just mention the hand washing and stuff to them (especially about the techs!)
Take care!

 

[ladybug]

Hi again. Interesting (and scary) stuff ya'll have been posting! I wanted to mention that even though my clinic maybe doesn't practice the best infection control, I think they're a GREAT clinic with great docs! They've kept me healthier than I ever was before coming here! I believe that there should be some sort of infection control process that is consistant across every center, but until then, we'll just have to grin and bear it and do our best. One thing I always do is keep antibacterial with me so I can pour some on my hands after contact with each doctor. I feel better that way. I must say though, that I really enjoy my clinic and they're an AWESOME group of people. I think I feel the way I do about the infection control being so disorganized there because the other clinic I went to disinfected EVERYTHING and we wore masks and gloves, etc. and I felt so good about that.
Anyway, thanks for letting me rant. I still do think I'll be going to a different clinic in the future however because we're moving and I think if I were to stay here I'd keep with the one I'm at and maybe just mention the hand washing and stuff to them (especially about the techs!)
Take care!

 

[jaime]

To the poster asking about Childrens in Boston, thats where I go. Its great, I have gone there all my life and have always been very happy with my experiences in clinic and the hospital. When I go to clinic EVERYONE that comes in contact with CF patients wears a gown and gloves. CF patients are brought into the exam room immediately and the PFT machine is brought into the exam room so we dont go to two rooms. The patients with cepacia are seen on different clinic days from the rest of us with different clinic area and equipment and everything so any contact is minimal.

I hope you enjoy Boston!!

 

[jaime]

To the poster asking about Childrens in Boston, thats where I go. Its great, I have gone there all my life and have always been very happy with my experiences in clinic and the hospital. When I go to clinic EVERYONE that comes in contact with CF patients wears a gown and gloves. CF patients are brought into the exam room immediately and the PFT machine is brought into the exam room so we dont go to two rooms. The patients with cepacia are seen on different clinic days from the rest of us with different clinic area and equipment and everything so any contact is minimal.

I hope you enjoy Boston!!

 

[ClashPunk82]

hey Jaime, I go to Children's in Boston too. I really like it there been goin all my llife! I just don't like staying there for a cleanout, BLAH! Who is your doc? If you dont mind me asking, I probably know them. Mine is Dr. Donovan, she is really nice. Yes they are very careful about contamination and I'm so glad. I don't need any other bugs or bacterias, I have enough for now!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Nicole 22 CF

 

[ClashPunk82]

hey Jaime, I go to Children's in Boston too. I really like it there been goin all my llife! I just don't like staying there for a cleanout, BLAH! Who is your doc? If you dont mind me asking, I probably know them. Mine is Dr. Donovan, she is really nice. Yes they are very careful about contamination and I'm so glad. I don't need any other bugs or bacterias, I have enough for now!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Nicole 22 CF