How long will i live? :(

[Nelly]

I've had a lung tx and then now I got psudamonas (sp) of two different strains. I always thought Id live for 10+ years after tx but this isnt good news.

Im on colomycin nebulizers but am coughinig up green phlem alot.

I know second txs are an option eventually - at the moment my pfts are still good. Has anyone anything to add or advise to give? Im very worried <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Nelly]

I've had a lung tx and then now I got psudamonas (sp) of two different strains. I always thought Id live for 10+ years after tx but this isnt good news.

Im on colomycin nebulizers but am coughinig up green phlem alot.

I know second txs are an option eventually - at the moment my pfts are still good. Has anyone anything to add or advise to give? Im very worried <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Nelly]

I've had a lung tx and then now I got psudamonas (sp) of two different strains. I always thought Id live for 10+ years after tx but this isnt good news.

Im on colomycin nebulizers but am coughinig up green phlem alot.

I know second txs are an option eventually - at the moment my pfts are still good. Has anyone anything to add or advise to give? Im very worried <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Nelly]

I've had a lung tx and then now I got psudamonas (sp) of two different strains. I always thought Id live for 10+ years after tx but this isnt good news.

Im on colomycin nebulizers but am coughinig up green phlem alot.

I know second txs are an option eventually - at the moment my pfts are still good. Has anyone anything to add or advise to give? Im very worried <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[Nelly]

I've had a lung tx and then now I got psudamonas (sp) of two different strains. I always thought Id live for 10+ years after tx but this isnt good news.

Im on colomycin nebulizers but am coughinig up green phlem alot.

I know second txs are an option eventually - at the moment my pfts are still good. Has anyone anything to add or advise to give? Im very worried <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[EnergyGal]

All cf patients eventually get their bugs from their sinuses into their transplanted lungs. THis is very Normal. If you get an infection then they treat you. It all depends on the bacteroa; load that is present in your sinuses and lungs. Sounds like you are going to be fine. What do your doctors say? Take care of yourself and make sure you ask specific questions to your transplant team so you can learn all about tx life.
Congratulations on your Transplant!

 

[EnergyGal]

All cf patients eventually get their bugs from their sinuses into their transplanted lungs. THis is very Normal. If you get an infection then they treat you. It all depends on the bacteroa; load that is present in your sinuses and lungs. Sounds like you are going to be fine. What do your doctors say? Take care of yourself and make sure you ask specific questions to your transplant team so you can learn all about tx life.
Congratulations on your Transplant!

 

[EnergyGal]

All cf patients eventually get their bugs from their sinuses into their transplanted lungs. THis is very Normal. If you get an infection then they treat you. It all depends on the bacteroa; load that is present in your sinuses and lungs. Sounds like you are going to be fine. What do your doctors say? Take care of yourself and make sure you ask specific questions to your transplant team so you can learn all about tx life.
Congratulations on your Transplant!

 

[EnergyGal]

All cf patients eventually get their bugs from their sinuses into their transplanted lungs. THis is very Normal. If you get an infection then they treat you. It all depends on the bacteroa; load that is present in your sinuses and lungs. Sounds like you are going to be fine. What do your doctors say? Take care of yourself and make sure you ask specific questions to your transplant team so you can learn all about tx life.
Congratulations on your Transplant!

 

[EnergyGal]

All cf patients eventually get their bugs from their sinuses into their transplanted lungs. THis is very Normal. If you get an infection then they treat you. It all depends on the bacteroa; load that is present in your sinuses and lungs. Sounds like you are going to be fine. What do your doctors say? Take care of yourself and make sure you ask specific questions to your transplant team so you can learn all about tx life.
Congratulations on your Transplant!

 

[Aspiemom]

Try not to worry, Nelly, as worrying and stress never help your health or the situation. I know that's easier said than done, too!

How long has it been since your tx? I'm just wondering if you've been enjoying that relief and freedom from the usual problems for a while and this may have thrown you a loop. Your PFT's are still good, it sounds like they just need to treat the Pseudomonis and you'll be fine for quite a while. I have 3 types of Pseud. My FEV1 is in the low 40% range. What are yours?

I'm wondering, too, what your doctors say? Talk to your tx team so you know what to expect and DON'T WORRY! You're probably going to be just fine! Maybe the other Tx people here can advise some.

 

[Aspiemom]

Try not to worry, Nelly, as worrying and stress never help your health or the situation. I know that's easier said than done, too!

How long has it been since your tx? I'm just wondering if you've been enjoying that relief and freedom from the usual problems for a while and this may have thrown you a loop. Your PFT's are still good, it sounds like they just need to treat the Pseudomonis and you'll be fine for quite a while. I have 3 types of Pseud. My FEV1 is in the low 40% range. What are yours?

I'm wondering, too, what your doctors say? Talk to your tx team so you know what to expect and DON'T WORRY! You're probably going to be just fine! Maybe the other Tx people here can advise some.

 

[Aspiemom]

Try not to worry, Nelly, as worrying and stress never help your health or the situation. I know that's easier said than done, too!

How long has it been since your tx? I'm just wondering if you've been enjoying that relief and freedom from the usual problems for a while and this may have thrown you a loop. Your PFT's are still good, it sounds like they just need to treat the Pseudomonis and you'll be fine for quite a while. I have 3 types of Pseud. My FEV1 is in the low 40% range. What are yours?

I'm wondering, too, what your doctors say? Talk to your tx team so you know what to expect and DON'T WORRY! You're probably going to be just fine! Maybe the other Tx people here can advise some.

 

[Aspiemom]

Try not to worry, Nelly, as worrying and stress never help your health or the situation. I know that's easier said than done, too!

How long has it been since your tx? I'm just wondering if you've been enjoying that relief and freedom from the usual problems for a while and this may have thrown you a loop. Your PFT's are still good, it sounds like they just need to treat the Pseudomonis and you'll be fine for quite a while. I have 3 types of Pseud. My FEV1 is in the low 40% range. What are yours?

I'm wondering, too, what your doctors say? Talk to your tx team so you know what to expect and DON'T WORRY! You're probably going to be just fine! Maybe the other Tx people here can advise some.

 

[Aspiemom]

Try not to worry, Nelly, as worrying and stress never help your health or the situation. I know that's easier said than done, too!

How long has it been since your tx? I'm just wondering if you've been enjoying that relief and freedom from the usual problems for a while and this may have thrown you a loop. Your PFT's are still good, it sounds like they just need to treat the Pseudomonis and you'll be fine for quite a while. I have 3 types of Pseud. My FEV1 is in the low 40% range. What are yours?

I'm wondering, too, what your doctors say? Talk to your tx team so you know what to expect and DON'T WORRY! You're probably going to be just fine! Maybe the other Tx people here can advise some.

 

[coltsfan715]

I would be cautious but not terrified of impending death. I was transplanted a few months ago and had issues with culturing the bacteria I used to culture before transplant for several weeks. I have not had the issue since the second month post transplant but I do sinus rinses daily about 4 saline sinus rinse and 2 antibiotic sinse rinses a day.

My Tx docs have told me that often times lung patients can start to culture the bugs they had before transplant because you aren't able to replace EVERYTHING within the respiratory system so there is still some residual gunk there.

I think that getting some treatment is a good thing for you right now, but just know that it doesn't mean that the clock is now ticking down because of the psuedomonas. I DO understand the fear. As when the doc told me I was still culturing the Pseudo when I was in the hospital i started sobbing cause I thought great! already this crap has started again. Then 3 weeks later I was having completely clear cultures after taking some IVs post transplant and doing Colistin for a week or 10 days.

I hope that the meds help you out and that you are able to bounce back from this blow both mentally and physically.

Also to add when I was having issues shortly after surgery with the cultures coming back I did my vest a few days. I did it 15 minutes at night for like 3-4 nights to see if I could get up anything that might be stickig down there and it helped some. I got up a few things - literally I maybe coughed 1 time each session but I got some stuff up. The next bronch I had the culture came back clear.

SO point being if you have a vest and want to give it a try it may help you out. It is annoying maybe but it is a tool that we are fortunate enough to have at our disposal so we may as well use it if we need too or if it will benefit us ya know what I mean.

Good Luck.
Lindsey

 

[coltsfan715]

I would be cautious but not terrified of impending death. I was transplanted a few months ago and had issues with culturing the bacteria I used to culture before transplant for several weeks. I have not had the issue since the second month post transplant but I do sinus rinses daily about 4 saline sinus rinse and 2 antibiotic sinse rinses a day.

My Tx docs have told me that often times lung patients can start to culture the bugs they had before transplant because you aren't able to replace EVERYTHING within the respiratory system so there is still some residual gunk there.

I think that getting some treatment is a good thing for you right now, but just know that it doesn't mean that the clock is now ticking down because of the psuedomonas. I DO understand the fear. As when the doc told me I was still culturing the Pseudo when I was in the hospital i started sobbing cause I thought great! already this crap has started again. Then 3 weeks later I was having completely clear cultures after taking some IVs post transplant and doing Colistin for a week or 10 days.

I hope that the meds help you out and that you are able to bounce back from this blow both mentally and physically.

Also to add when I was having issues shortly after surgery with the cultures coming back I did my vest a few days. I did it 15 minutes at night for like 3-4 nights to see if I could get up anything that might be stickig down there and it helped some. I got up a few things - literally I maybe coughed 1 time each session but I got some stuff up. The next bronch I had the culture came back clear.

SO point being if you have a vest and want to give it a try it may help you out. It is annoying maybe but it is a tool that we are fortunate enough to have at our disposal so we may as well use it if we need too or if it will benefit us ya know what I mean.

Good Luck.
Lindsey

 

[coltsfan715]

I would be cautious but not terrified of impending death. I was transplanted a few months ago and had issues with culturing the bacteria I used to culture before transplant for several weeks. I have not had the issue since the second month post transplant but I do sinus rinses daily about 4 saline sinus rinse and 2 antibiotic sinse rinses a day.

My Tx docs have told me that often times lung patients can start to culture the bugs they had before transplant because you aren't able to replace EVERYTHING within the respiratory system so there is still some residual gunk there.

I think that getting some treatment is a good thing for you right now, but just know that it doesn't mean that the clock is now ticking down because of the psuedomonas. I DO understand the fear. As when the doc told me I was still culturing the Pseudo when I was in the hospital i started sobbing cause I thought great! already this crap has started again. Then 3 weeks later I was having completely clear cultures after taking some IVs post transplant and doing Colistin for a week or 10 days.

I hope that the meds help you out and that you are able to bounce back from this blow both mentally and physically.

Also to add when I was having issues shortly after surgery with the cultures coming back I did my vest a few days. I did it 15 minutes at night for like 3-4 nights to see if I could get up anything that might be stickig down there and it helped some. I got up a few things - literally I maybe coughed 1 time each session but I got some stuff up. The next bronch I had the culture came back clear.

SO point being if you have a vest and want to give it a try it may help you out. It is annoying maybe but it is a tool that we are fortunate enough to have at our disposal so we may as well use it if we need too or if it will benefit us ya know what I mean.

Good Luck.
Lindsey

 

[coltsfan715]

I would be cautious but not terrified of impending death. I was transplanted a few months ago and had issues with culturing the bacteria I used to culture before transplant for several weeks. I have not had the issue since the second month post transplant but I do sinus rinses daily about 4 saline sinus rinse and 2 antibiotic sinse rinses a day.

My Tx docs have told me that often times lung patients can start to culture the bugs they had before transplant because you aren't able to replace EVERYTHING within the respiratory system so there is still some residual gunk there.

I think that getting some treatment is a good thing for you right now, but just know that it doesn't mean that the clock is now ticking down because of the psuedomonas. I DO understand the fear. As when the doc told me I was still culturing the Pseudo when I was in the hospital i started sobbing cause I thought great! already this crap has started again. Then 3 weeks later I was having completely clear cultures after taking some IVs post transplant and doing Colistin for a week or 10 days.

I hope that the meds help you out and that you are able to bounce back from this blow both mentally and physically.

Also to add when I was having issues shortly after surgery with the cultures coming back I did my vest a few days. I did it 15 minutes at night for like 3-4 nights to see if I could get up anything that might be stickig down there and it helped some. I got up a few things - literally I maybe coughed 1 time each session but I got some stuff up. The next bronch I had the culture came back clear.

SO point being if you have a vest and want to give it a try it may help you out. It is annoying maybe but it is a tool that we are fortunate enough to have at our disposal so we may as well use it if we need too or if it will benefit us ya know what I mean.

Good Luck.
Lindsey

 

[coltsfan715]

I would be cautious but not terrified of impending death. I was transplanted a few months ago and had issues with culturing the bacteria I used to culture before transplant for several weeks. I have not had the issue since the second month post transplant but I do sinus rinses daily about 4 saline sinus rinse and 2 antibiotic sinse rinses a day.

My Tx docs have told me that often times lung patients can start to culture the bugs they had before transplant because you aren't able to replace EVERYTHING within the respiratory system so there is still some residual gunk there.

I think that getting some treatment is a good thing for you right now, but just know that it doesn't mean that the clock is now ticking down because of the psuedomonas. I DO understand the fear. As when the doc told me I was still culturing the Pseudo when I was in the hospital i started sobbing cause I thought great! already this crap has started again. Then 3 weeks later I was having completely clear cultures after taking some IVs post transplant and doing Colistin for a week or 10 days.

I hope that the meds help you out and that you are able to bounce back from this blow both mentally and physically.

Also to add when I was having issues shortly after surgery with the cultures coming back I did my vest a few days. I did it 15 minutes at night for like 3-4 nights to see if I could get up anything that might be stickig down there and it helped some. I got up a few things - literally I maybe coughed 1 time each session but I got some stuff up. The next bronch I had the culture came back clear.

SO point being if you have a vest and want to give it a try it may help you out. It is annoying maybe but it is a tool that we are fortunate enough to have at our disposal so we may as well use it if we need too or if it will benefit us ya know what I mean.

Good Luck.
Lindsey