Pseudomonas

[lovemygirl]

I am sure this has been discussed in the past but I never read these postings because I thought I had a few years to go before our daughter cultured it...she is 4 yrs old. We got the call today that she has cultured pseudomonas and I am scared, upset and emotionally drained.
Can anyone tell me what this means for her. I tried calling our CF nurse but she had left for the weekend and now I am left wondering until Monday. We are going next week to learn about the nebulizer because we have never used it before, but I don't know what medication will be used.

Thanks for any input.

 

[lovemygirl]

I am sure this has been discussed in the past but I never read these postings because I thought I had a few years to go before our daughter cultured it...she is 4 yrs old. We got the call today that she has cultured pseudomonas and I am scared, upset and emotionally drained.
Can anyone tell me what this means for her. I tried calling our CF nurse but she had left for the weekend and now I am left wondering until Monday. We are going next week to learn about the nebulizer because we have never used it before, but I don't know what medication will be used.

Thanks for any input.

 

[Emily65Roses]

Every CFer gets pseudomonas at some point. It may seem scary, but it's not the end of the world. Nebulized meds are a huge help, I personally am on Pulmozyme. I've got about 3 or 4 different strains of pseudomonas, and I'm still a fulltime student and all that good type stuff. Of course meds and what have you are important, but I don't think it's as bad as it seems. I'm sure it's scary for the first time, but generally it doesn't mean anything too major. I don't want to play it down to where it means nothing, because it does make some changes, but it's really not as bad as I'm sure it seems.

 

[Emily65Roses]

Every CFer gets pseudomonas at some point. It may seem scary, but it's not the end of the world. Nebulized meds are a huge help, I personally am on Pulmozyme. I've got about 3 or 4 different strains of pseudomonas, and I'm still a fulltime student and all that good type stuff. Of course meds and what have you are important, but I don't think it's as bad as it seems. I'm sure it's scary for the first time, but generally it doesn't mean anything too major. I don't want to play it down to where it means nothing, because it does make some changes, but it's really not as bad as I'm sure it seems.

 

[anonymous]

Hi there,

I remember when my son was first dx with pseudomonas...it felt almost like finding out about his cf again. I guess it just made everything seem more "real." From what I understand, culturing it is inevidable and can be erradicated much easier than in the past. That's good news that your child has cultured it at 4 - it could have been much sooner. I'm not trying to downplay what you feel, but just to reassure you that her cultures are very normal and very treatable! My son is doing just fantasic. He was put on inhaled TOBI and hasn't cultured psedo in over 2 years (knock on wood...)! Hang in there - things will get better. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[anonymous]

Hi there,

I remember when my son was first dx with pseudomonas...it felt almost like finding out about his cf again. I guess it just made everything seem more "real." From what I understand, culturing it is inevidable and can be erradicated much easier than in the past. That's good news that your child has cultured it at 4 - it could have been much sooner. I'm not trying to downplay what you feel, but just to reassure you that her cultures are very normal and very treatable! My son is doing just fantasic. He was put on inhaled TOBI and hasn't cultured psedo in over 2 years (knock on wood...)! Hang in there - things will get better. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey

 

[anonymous]

I cultured pseudomonas when I was 7 years old, I'm now 38. It is scary, but can be managed<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I cultured pseudomonas when I was 7 years old, I'm now 38. It is scary, but can be managed<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jaime]

I first cultured pseudomonas when I was pretty young too. Since then I have always continued to have it--it just never goes away with any treatment. I am now 26, I work 32 hours a week, I went to college and have an active full life. Sure I do alot of treatments, cough alot and need to take time off for IV meds and stuff, but I dont mind. I know every patient responds different to treatment, so just try to think positive. It may take a while and a few changes but you and your doctors will figure out what works best for your daughter.
Best of wishes to you!!

 

[jaime]

I first cultured pseudomonas when I was pretty young too. Since then I have always continued to have it--it just never goes away with any treatment. I am now 26, I work 32 hours a week, I went to college and have an active full life. Sure I do alot of treatments, cough alot and need to take time off for IV meds and stuff, but I dont mind. I know every patient responds different to treatment, so just try to think positive. It may take a while and a few changes but you and your doctors will figure out what works best for your daughter.
Best of wishes to you!!

 

[JoAnn]

Hi Jamie - I understand how you are feeling. My son who is 6 1/2 now was diag. with cf at 18 mos of age. At that time, he also cultured pseudo. It was an extremely high colinization at that time and inhaled TOBI and IV meds took care of it. He did not culture it again for a couple of years. Ea. time he did, he went on a cycle(s) of TOBI. Since then, he has cultured a cousin to pseud 2 times. It is never very high and the TOBI keeps it under control. This is his first year of doing the TOBI regimin of 28 days on and 28 days off. Every time we get culture results, I feel like I am reliving the diagnosis all over again. I think as parents, we find a place in our heads and our hearts to keep all of the realities of this disease. That way, we have the strength to go through our daily routines. When we get test results like you have, we are forced to face the disease head on again. Time will allow you to regroup and refocus. It is a part of the chronic illness roller coaster. Best wishes and I hope the pseud. retreats quickly. Take care! Jo Ann

 

[JoAnn]

Hi Jamie - I understand how you are feeling. My son who is 6 1/2 now was diag. with cf at 18 mos of age. At that time, he also cultured pseudo. It was an extremely high colinization at that time and inhaled TOBI and IV meds took care of it. He did not culture it again for a couple of years. Ea. time he did, he went on a cycle(s) of TOBI. Since then, he has cultured a cousin to pseud 2 times. It is never very high and the TOBI keeps it under control. This is his first year of doing the TOBI regimin of 28 days on and 28 days off. Every time we get culture results, I feel like I am reliving the diagnosis all over again. I think as parents, we find a place in our heads and our hearts to keep all of the realities of this disease. That way, we have the strength to go through our daily routines. When we get test results like you have, we are forced to face the disease head on again. Time will allow you to regroup and refocus. It is a part of the chronic illness roller coaster. Best wishes and I hope the pseud. retreats quickly. Take care! Jo Ann

 

[lovemygirl]

Thank you all for replying. You nailed it on the head, because it is just like living the diagnosis again, only this time you are almost anticipating it and at diagnosis you don't even see it coming. We are going back to the hospital this week to see how the nebulizer works and find out what meds she will be using.
Thanks for the replies

 

[lovemygirl]

Thank you all for replying. You nailed it on the head, because it is just like living the diagnosis again, only this time you are almost anticipating it and at diagnosis you don't even see it coming. We are going back to the hospital this week to see how the nebulizer works and find out what meds she will be using.
Thanks for the replies

 

[anonymous]

Jamie,

Just wanted to add with everyone else that Pseudomonas can be managed. My daughter Rachel cultured it when she was 2 and she always has it but the Tobi keeps it at bay. From what I have been told from the docs that you can have Pseudomonas and live a very full life. I always thought of it as a death sentence and that they would do worse but that is just not the case.

Good Luck

Teri

 

[anonymous]

Jamie,

Just wanted to add with everyone else that Pseudomonas can be managed. My daughter Rachel cultured it when she was 2 and she always has it but the Tobi keeps it at bay. From what I have been told from the docs that you can have Pseudomonas and live a very full life. I always thought of it as a death sentence and that they would do worse but that is just not the case.

Good Luck

Teri

 

[NoDayButToday]

I've cultured pseudomonas for about 11 years now. My mom says it was a huge emotional shock for her, and the nebulizers were an adjustment. Pseudomonas isn't the death sentence it used to be, it's just another part of CF- a manageable part. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[NoDayButToday]

I've cultured pseudomonas for about 11 years now. My mom says it was a huge emotional shock for her, and the nebulizers were an adjustment. Pseudomonas isn't the death sentence it used to be, it's just another part of CF- a manageable part. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Emily65Roses]

Yeah my mom used to tell me that... Years ago, when a CF child cultured pseudomonas, it basically meant the parents had to start preparing the funeral. It was pretty much a death sentence. Now it's a pain in the ass, sure, but it's not going to make your child drop dead. Heh. It's inevitable for CFers and there are certainly ways to live and work around it. <img src="i/expressions/rose.gif" border="0">

 

[Emily65Roses]

Yeah my mom used to tell me that... Years ago, when a CF child cultured pseudomonas, it basically meant the parents had to start preparing the funeral. It was pretty much a death sentence. Now it's a pain in the ass, sure, but it's not going to make your child drop dead. Heh. It's inevitable for CFers and there are certainly ways to live and work around it. <img src="i/expressions/rose.gif" border="0">