I just got listed

[Joanne]

You need to talk to a center that does not see this as a problem. I had Psuedo pre tx and nothing worked to get rid of it, but my center did not seem concered that I had to get rid of it. I got the new lungs and that was 10 years ago.

What center did you go to?

Joanne Schum
luckylungsforjo@aol.com

 

[Joanne]

You need to talk to a center that does not see this as a problem. I had Psuedo pre tx and nothing worked to get rid of it, but my center did not seem concered that I had to get rid of it. I got the new lungs and that was 10 years ago.

What center did you go to?

Joanne Schum
luckylungsforjo@aol.com

 

[Joanne]

You need to talk to a center that does not see this as a problem. I had Psuedo pre tx and nothing worked to get rid of it, but my center did not seem concered that I had to get rid of it. I got the new lungs and that was 10 years ago.

What center did you go to?

Joanne Schum
luckylungsforjo@aol.com

 

[Joanne]

You need to talk to a center that does not see this as a problem. I had Psuedo pre tx and nothing worked to get rid of it, but my center did not seem concered that I had to get rid of it. I got the new lungs and that was 10 years ago.

What center did you go to?

Joanne Schum
luckylungsforjo@aol.com

 

[Joanne]

You need to talk to a center that does not see this as a problem. I had Psuedo pre tx and nothing worked to get rid of it, but my center did not seem concered that I had to get rid of it. I got the new lungs and that was 10 years ago.

What center did you go to?

Joanne Schum
luckylungsforjo@aol.com

 

[kbquincy]

HI Joann, thanks for much for the reply. I went to Barnes, St. Louis. They told me that as long as I have one drug that I am sensitive to, they would transplant me. So far, I have always been sensitive to Colistin IV and I am hoping it continues before I am TX. It hasn't worked that well lately.
Did your pseudo show any sputum drug sensitivities before TX? You have done so well that it is encouraging to hear. Whenever I do a sputum culture, nothing comes back as sensitive. Thank you, Kim

 

[kbquincy]

HI Joann, thanks for much for the reply. I went to Barnes, St. Louis. They told me that as long as I have one drug that I am sensitive to, they would transplant me. So far, I have always been sensitive to Colistin IV and I am hoping it continues before I am TX. It hasn't worked that well lately.
Did your pseudo show any sputum drug sensitivities before TX? You have done so well that it is encouraging to hear. Whenever I do a sputum culture, nothing comes back as sensitive. Thank you, Kim

 

[kbquincy]

HI Joann, thanks for much for the reply. I went to Barnes, St. Louis. They told me that as long as I have one drug that I am sensitive to, they would transplant me. So far, I have always been sensitive to Colistin IV and I am hoping it continues before I am TX. It hasn't worked that well lately.
Did your pseudo show any sputum drug sensitivities before TX? You have done so well that it is encouraging to hear. Whenever I do a sputum culture, nothing comes back as sensitive. Thank you, Kim

 

[kbquincy]

HI Joann, thanks for much for the reply. I went to Barnes, St. Louis. They told me that as long as I have one drug that I am sensitive to, they would transplant me. So far, I have always been sensitive to Colistin IV and I am hoping it continues before I am TX. It hasn't worked that well lately.
Did your pseudo show any sputum drug sensitivities before TX? You have done so well that it is encouraging to hear. Whenever I do a sputum culture, nothing comes back as sensitive. Thank you, Kim

 

[kbquincy]

HI Joann, thanks for much for the reply. I went to Barnes, St. Louis. They told me that as long as I have one drug that I am sensitive to, they would transplant me. So far, I have always been sensitive to Colistin IV and I am hoping it continues before I am TX. It hasn't worked that well lately.
Did your pseudo show any sputum drug sensitivities before TX? You have done so well that it is encouraging to hear. Whenever I do a sputum culture, nothing comes back as sensitive. Thank you, Kim

 

[Joanne]

Hi Kim,

Yes, my sputum was not sensitive to many drugs by the time I got lungs. I think many of the CF patients at UNC have some resistant germs, but UNC does not get scared by it. It has never presented a problem for me. I do recall that pre tx I was not able to take, for example, cipro, as it no longer worked for me. Well post tx, and to this day, cipro works great! Just like Extra Strength Tylenol pre tx, I would have to take 2 or 3 to get relief of any kind. Now give me one and it knocks me out.

The bugs I had pre tx, I no longer have ( they are someone else's lungs afterall) and so using the old drugs that no longer worked for me, now work. Maybe this is not true for everyone, but so far for me it has.

Joanne Schum

 

[Joanne]

Hi Kim,

Yes, my sputum was not sensitive to many drugs by the time I got lungs. I think many of the CF patients at UNC have some resistant germs, but UNC does not get scared by it. It has never presented a problem for me. I do recall that pre tx I was not able to take, for example, cipro, as it no longer worked for me. Well post tx, and to this day, cipro works great! Just like Extra Strength Tylenol pre tx, I would have to take 2 or 3 to get relief of any kind. Now give me one and it knocks me out.

The bugs I had pre tx, I no longer have ( they are someone else's lungs afterall) and so using the old drugs that no longer worked for me, now work. Maybe this is not true for everyone, but so far for me it has.

Joanne Schum

 

[Joanne]

Hi Kim,

Yes, my sputum was not sensitive to many drugs by the time I got lungs. I think many of the CF patients at UNC have some resistant germs, but UNC does not get scared by it. It has never presented a problem for me. I do recall that pre tx I was not able to take, for example, cipro, as it no longer worked for me. Well post tx, and to this day, cipro works great! Just like Extra Strength Tylenol pre tx, I would have to take 2 or 3 to get relief of any kind. Now give me one and it knocks me out.

The bugs I had pre tx, I no longer have ( they are someone else's lungs afterall) and so using the old drugs that no longer worked for me, now work. Maybe this is not true for everyone, but so far for me it has.

Joanne Schum

 

[Joanne]

Hi Kim,

Yes, my sputum was not sensitive to many drugs by the time I got lungs. I think many of the CF patients at UNC have some resistant germs, but UNC does not get scared by it. It has never presented a problem for me. I do recall that pre tx I was not able to take, for example, cipro, as it no longer worked for me. Well post tx, and to this day, cipro works great! Just like Extra Strength Tylenol pre tx, I would have to take 2 or 3 to get relief of any kind. Now give me one and it knocks me out.

The bugs I had pre tx, I no longer have ( they are someone else's lungs afterall) and so using the old drugs that no longer worked for me, now work. Maybe this is not true for everyone, but so far for me it has.

Joanne Schum

 

[Joanne]

Hi Kim,

Yes, my sputum was not sensitive to many drugs by the time I got lungs. I think many of the CF patients at UNC have some resistant germs, but UNC does not get scared by it. It has never presented a problem for me. I do recall that pre tx I was not able to take, for example, cipro, as it no longer worked for me. Well post tx, and to this day, cipro works great! Just like Extra Strength Tylenol pre tx, I would have to take 2 or 3 to get relief of any kind. Now give me one and it knocks me out.

The bugs I had pre tx, I no longer have ( they are someone else's lungs afterall) and so using the old drugs that no longer worked for me, now work. Maybe this is not true for everyone, but so far for me it has.

Joanne Schum

 

[kbquincy]

Joanne, you don't know how comforting your responses are! Thank you! My sensitivities are so low that when I go on IV's, they give me 3 or 4 different drugs. The triple synergy testing done in Canada showed some triple combinations that might work. I guess I'm just nervous about the pseudo in my sinuses that will go into the new lungs. But it sounds like you have not had many problems. Do you flush your sinuses every day? By the way, I bought your book and I am so grateful to have it. It usually is read in the middle of the night when I can't sleep. It helps me get back to sleep. Thank you for compiling all the stories. They truly are inspirational. Thank you again for taking the time to respond to my emails. Kim

 

[kbquincy]

Joanne, you don't know how comforting your responses are! Thank you! My sensitivities are so low that when I go on IV's, they give me 3 or 4 different drugs. The triple synergy testing done in Canada showed some triple combinations that might work. I guess I'm just nervous about the pseudo in my sinuses that will go into the new lungs. But it sounds like you have not had many problems. Do you flush your sinuses every day? By the way, I bought your book and I am so grateful to have it. It usually is read in the middle of the night when I can't sleep. It helps me get back to sleep. Thank you for compiling all the stories. They truly are inspirational. Thank you again for taking the time to respond to my emails. Kim

 

[kbquincy]

Joanne, you don't know how comforting your responses are! Thank you! My sensitivities are so low that when I go on IV's, they give me 3 or 4 different drugs. The triple synergy testing done in Canada showed some triple combinations that might work. I guess I'm just nervous about the pseudo in my sinuses that will go into the new lungs. But it sounds like you have not had many problems. Do you flush your sinuses every day? By the way, I bought your book and I am so grateful to have it. It usually is read in the middle of the night when I can't sleep. It helps me get back to sleep. Thank you for compiling all the stories. They truly are inspirational. Thank you again for taking the time to respond to my emails. Kim

 

[kbquincy]

Joanne, you don't know how comforting your responses are! Thank you! My sensitivities are so low that when I go on IV's, they give me 3 or 4 different drugs. The triple synergy testing done in Canada showed some triple combinations that might work. I guess I'm just nervous about the pseudo in my sinuses that will go into the new lungs. But it sounds like you have not had many problems. Do you flush your sinuses every day? By the way, I bought your book and I am so grateful to have it. It usually is read in the middle of the night when I can't sleep. It helps me get back to sleep. Thank you for compiling all the stories. They truly are inspirational. Thank you again for taking the time to respond to my emails. Kim

 

[kbquincy]

Joanne, you don't know how comforting your responses are! Thank you! My sensitivities are so low that when I go on IV's, they give me 3 or 4 different drugs. The triple synergy testing done in Canada showed some triple combinations that might work. I guess I'm just nervous about the pseudo in my sinuses that will go into the new lungs. But it sounds like you have not had many problems. Do you flush your sinuses every day? By the way, I bought your book and I am so grateful to have it. It usually is read in the middle of the night when I can't sleep. It helps me get back to sleep. Thank you for compiling all the stories. They truly are inspirational. Thank you again for taking the time to respond to my emails. Kim