Worried about resistance

P

PinkPigg

New member
Hey guys. Just got out of the hospital today after 8 days recovering from an exacerbation. The good news is I went in early enough that it wasn't a horribly hard stay. The bad news is I had some discouraging sputum culture results.

I grow a few PA strains. One is a bit resistant and is the larger colonization of the two. However, there is a second smaller colony (1+) that is popping up. The smaller one is still sensitive to Colistin and Gentamycin but that's about it.

My big fear is having this knock me out of transplant. I'm down to FEV1 25% and on O2 at night only. From a lifestyle standpoint I'm doing OK but the resistance is freaking me out totally.

I was evaluated at Duke last fall and am currently on hold due to a cancer free waiting period. My local oncologist has given me a cancer free waiver for the center here in Indy but they are out of network. I had chemo/rad & radical surgery with clean nodes. So I'm going to look into what Duke would need to consider an exception to the two year wait there. FYI Duke was OK with my resistance issues in August which did include a report from Dec 09 with the bad PA.

Does anyone have any good healing stories or input on this? I feel like I'm coming to a crossroads and am a little scared about missing the opportunity for transplant.

Thanks so much!!!

Steph

P.S. Feeling great today <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
P

PinkPigg

New member
Hey guys. Just got out of the hospital today after 8 days recovering from an exacerbation. The good news is I went in early enough that it wasn't a horribly hard stay. The bad news is I had some discouraging sputum culture results.

I grow a few PA strains. One is a bit resistant and is the larger colonization of the two. However, there is a second smaller colony (1+) that is popping up. The smaller one is still sensitive to Colistin and Gentamycin but that's about it.

My big fear is having this knock me out of transplant. I'm down to FEV1 25% and on O2 at night only. From a lifestyle standpoint I'm doing OK but the resistance is freaking me out totally.

I was evaluated at Duke last fall and am currently on hold due to a cancer free waiting period. My local oncologist has given me a cancer free waiver for the center here in Indy but they are out of network. I had chemo/rad & radical surgery with clean nodes. So I'm going to look into what Duke would need to consider an exception to the two year wait there. FYI Duke was OK with my resistance issues in August which did include a report from Dec 09 with the bad PA.

Does anyone have any good healing stories or input on this? I feel like I'm coming to a crossroads and am a little scared about missing the opportunity for transplant.

Thanks so much!!!

Steph

P.S. Feeling great today <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
P

PinkPigg

New member
Hey guys. Just got out of the hospital today after 8 days recovering from an exacerbation. The good news is I went in early enough that it wasn't a horribly hard stay. The bad news is I had some discouraging sputum culture results.
<br />
<br />I grow a few PA strains. One is a bit resistant and is the larger colonization of the two. However, there is a second smaller colony (1+) that is popping up. The smaller one is still sensitive to Colistin and Gentamycin but that's about it.
<br />
<br />My big fear is having this knock me out of transplant. I'm down to FEV1 25% and on O2 at night only. From a lifestyle standpoint I'm doing OK but the resistance is freaking me out totally.
<br />
<br />I was evaluated at Duke last fall and am currently on hold due to a cancer free waiting period. My local oncologist has given me a cancer free waiver for the center here in Indy but they are out of network. I had chemo/rad & radical surgery with clean nodes. So I'm going to look into what Duke would need to consider an exception to the two year wait there. FYI Duke was OK with my resistance issues in August which did include a report from Dec 09 with the bad PA.
<br />
<br />Does anyone have any good healing stories or input on this? I feel like I'm coming to a crossroads and am a little scared about missing the opportunity for transplant.
<br />
<br />Thanks so much!!!
<br />
<br />Steph
<br />
<br />P.S. Feeling great today <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

CountryGirl

New member
I cant speak on how this might affect your situation because of the cancer but if you had never had cancer then resistance shouldnt really matter when it comes to being listed.

They list people with B. Cepacia and MRSA all the time and they obviously have many resistances. Normally it wouldnt cause any problems...they just might have you do inhaled antibiotics for a while post tx to help kill the bacteria thats left in your native airways.

But like I said, it might be different because of your history with cancer.
 
C

CountryGirl

New member
I cant speak on how this might affect your situation because of the cancer but if you had never had cancer then resistance shouldnt really matter when it comes to being listed.

They list people with B. Cepacia and MRSA all the time and they obviously have many resistances. Normally it wouldnt cause any problems...they just might have you do inhaled antibiotics for a while post tx to help kill the bacteria thats left in your native airways.

But like I said, it might be different because of your history with cancer.
 
C

CountryGirl

New member
I cant speak on how this might affect your situation because of the cancer but if you had never had cancer then resistance shouldnt really matter when it comes to being listed.
<br />
<br />They list people with B. Cepacia and MRSA all the time and they obviously have many resistances. Normally it wouldnt cause any problems...they just might have you do inhaled antibiotics for a while post tx to help kill the bacteria thats left in your native airways.
<br />
<br />But like I said, it might be different because of your history with cancer.
 
J

jfarel

New member
I agree with Anna, with CF, resistance is pretty par for the course. B. Cepacia, is really the only one that some transplant programs will refuse.
 
J

jfarel

New member
I agree with Anna, with CF, resistance is pretty par for the course. B. Cepacia, is really the only one that some transplant programs will refuse.
 
J

jfarel

New member
I agree with Anna, with CF, resistance is pretty par for the course. B. Cepacia, is really the only one that some transplant programs will refuse.
 
P

PinkPigg

New member
Thanks guys! Really needed to hear some positives <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
P

PinkPigg

New member
Thanks guys! Really needed to hear some positives <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
P

PinkPigg

New member
Thanks guys! Really needed to hear some positives <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

musclemania70

New member
Well, keep fighting. Its going to be a tough road but you have the power to stay positive.

I went to my tx evaluation and there was a man there who had multiple transplants, cancer, hip replacements, drug complications, ect. Anyway, he had an amazing story (60 plus years old!)and its so great to hear people say they NEVER GIVE UP no matter what the diagnosis. And, his fight for survival has kept him going. He is a walking miracle, and I have no doubts if he can pull through the obstacles he has endured there is hope for all of us!!
 
M

musclemania70

New member
Well, keep fighting. Its going to be a tough road but you have the power to stay positive.

I went to my tx evaluation and there was a man there who had multiple transplants, cancer, hip replacements, drug complications, ect. Anyway, he had an amazing story (60 plus years old!)and its so great to hear people say they NEVER GIVE UP no matter what the diagnosis. And, his fight for survival has kept him going. He is a walking miracle, and I have no doubts if he can pull through the obstacles he has endured there is hope for all of us!!
 
M

musclemania70

New member
Well, keep fighting. Its going to be a tough road but you have the power to stay positive.
<br />
<br />I went to my tx evaluation and there was a man there who had multiple transplants, cancer, hip replacements, drug complications, ect. Anyway, he had an amazing story (60 plus years old!)and its so great to hear people say they NEVER GIVE UP no matter what the diagnosis. And, his fight for survival has kept him going. He is a walking miracle, and I have no doubts if he can pull through the obstacles he has endured there is hope for all of us!!
 
N

nu65

New member
I think Duke would perform a tx even if you were resistant to everything. They are THAT serious about getting people lungs. So if it came to the point where there was practically no drug that seems to help your exacerbations, then that just means its time for transplant, in my opinion.
 
N

nu65

New member
I think Duke would perform a tx even if you were resistant to everything. They are THAT serious about getting people lungs. So if it came to the point where there was practically no drug that seems to help your exacerbations, then that just means its time for transplant, in my opinion.
 
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