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is it time to think about getting new lungs?

N

nu65

New member
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!
 
N

nu65

New member
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!
 
N

nu65

New member
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!
 
N

nu65

New member
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.

Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!
 
N

nu65

New member
I think you should definitly be searching for a close transplant center so they can look at your medical history and how your quality of life is now. Just because you see them for a consult doesn't mean you need lungs right now. I have been seeing my transplant center for almost 5 years now and have only been listed for 6 months. They can help you decide if its the right time for transplant and if it is the right choice for you.
<br />
<br />Until then, I wonder what IV drugs you're on. Are you resistant to a lot of drugs? What are you culturing? I'd ask your docs about what antibiotics you're on to take care of whatever strains of bacteria you've got. I hope things go alright for you, i know how it is to struggle with just walking, and I'm on 2 liters of O2 most of the time. Good luck to you!
 
C

cfprincess09

New member
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley
 
C

cfprincess09

New member
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley
 
C

cfprincess09

New member
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley
 
C

cfprincess09

New member
hey oxgirl220
i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk

sincerly ashley
 
C

cfprincess09

New member
hey oxgirl220
<br />i have been asked to do transplant twice and i said no both times and i got better twice i was asked when i was seven and i got better sick months later and they asked me at 12 and it took me 6 months to get better and it all depends on how bad your cf is !! mine is the wierdst and well your cf sounds pretty bad and i would think if it is worth them putting you on the table and cutting you open and being in pain for a few months after surgrey but it sounds your already in pain !!! so i think you should do it if you think its best for you !!! dont do it for anybody else but you !! thx for the talk
<br />
<br />sincerly ashley
 
J

JustDucky

New member
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn
 
J

JustDucky

New member
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn
 
J

JustDucky

New member
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn
 
J

JustDucky

New member
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
Hugs, Jenn
 
J

JustDucky

New member
I would wonder why you had such a rapid decline, did they do a bronchoscopy and get good samples that way? Have they looked for MAC too? Just some thoughts. I am sorry things have been so rough for you. I would look into centers now for tx evaluation. Maybe they will have a different opinion or even a better treatment plan. Who knows...I am thinking of you and will keep you in my prayers.
<br />Hugs, Jenn
 
C

crystalina0814

New member
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.
 
C

crystalina0814

New member
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.
 
C

crystalina0814

New member
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.
 
C

crystalina0814

New member
I am so sorry to hear about your struggles. I will be praying for you.

I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.

And....welcome! This place is amazing for ideas and support.
 
C

crystalina0814

New member
I am so sorry to hear about your struggles. I will be praying for you.
<br />
<br />I didn't see you mention anything about trying Asthma treatments. Have you been on anything for it? My lung function droppend significantly- not as much as yours, but about 20% over a months time- and a combo of prednisone boost, upping my albuterol, adding singulair, claritin and prilosec (for aspiration of gastric juices) has brought me back to base (for me). I would get a second opinion. I am sorry you were told that there is nothing they can do for you, there HAS to be a reason for such a drop so quickly.
<br />
<br />And....welcome! This place is amazing for ideas and support.
 
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