Surgery

A

Alexandria

New member
Okay, so I posted this in a blog but everyone told me to post a forum and I would probably get more reponses, as I am doing right now.

When I was hospitalized March 2007 my doctors found a small scarring spot on my right lower lobe, we didn't think much of it and just decided to keep an eye on it. As you probably guessed, it started spreading over the years. For the past couple doctor visits we were considering getting the lower lobe of my right lung removed because the spreading will eventually get alot worse if it's not taken care of sooner or later. I was just wondering probably what most people would wanna know about this surgery, plus I already tried talking to my doctors about the questions I had and none of them really got answered, so I figured I would turn to you guys who have actulley experienced it or known someone who has.
Heres some questions..
how long is the surgery?
how old were you when you got it done?
were you happy with the results?
how was recovery?
I also heard you had to get a chest tube, is that true?
and any other possible information any one can send my way!

Thanks alot everyone :)
Take Care,
Alexandria
 
A

Alexandria

New member
Okay, so I posted this in a blog but everyone told me to post a forum and I would probably get more reponses, as I am doing right now.

When I was hospitalized March 2007 my doctors found a small scarring spot on my right lower lobe, we didn't think much of it and just decided to keep an eye on it. As you probably guessed, it started spreading over the years. For the past couple doctor visits we were considering getting the lower lobe of my right lung removed because the spreading will eventually get alot worse if it's not taken care of sooner or later. I was just wondering probably what most people would wanna know about this surgery, plus I already tried talking to my doctors about the questions I had and none of them really got answered, so I figured I would turn to you guys who have actulley experienced it or known someone who has.
Heres some questions..
how long is the surgery?
how old were you when you got it done?
were you happy with the results?
how was recovery?
I also heard you had to get a chest tube, is that true?
and any other possible information any one can send my way!

Thanks alot everyone :)
Take Care,
Alexandria
 
A

Alexandria

New member
Okay, so I posted this in a blog but everyone told me to post a forum and I would probably get more reponses, as I am doing right now.

When I was hospitalized March 2007 my doctors found a small scarring spot on my right lower lobe, we didn't think much of it and just decided to keep an eye on it. As you probably guessed, it started spreading over the years. For the past couple doctor visits we were considering getting the lower lobe of my right lung removed because the spreading will eventually get alot worse if it's not taken care of sooner or later. I was just wondering probably what most people would wanna know about this surgery, plus I already tried talking to my doctors about the questions I had and none of them really got answered, so I figured I would turn to you guys who have actulley experienced it or known someone who has.
Heres some questions..
how long is the surgery?
how old were you when you got it done?
were you happy with the results?
how was recovery?
I also heard you had to get a chest tube, is that true?
and any other possible information any one can send my way!

Thanks alot everyone :)
Take Care,
Alexandria
 
A

Alexandria

New member
Okay, so I posted this in a blog but everyone told me to post a forum and I would probably get more reponses, as I am doing right now.

When I was hospitalized March 2007 my doctors found a small scarring spot on my right lower lobe, we didn't think much of it and just decided to keep an eye on it. As you probably guessed, it started spreading over the years. For the past couple doctor visits we were considering getting the lower lobe of my right lung removed because the spreading will eventually get alot worse if it's not taken care of sooner or later. I was just wondering probably what most people would wanna know about this surgery, plus I already tried talking to my doctors about the questions I had and none of them really got answered, so I figured I would turn to you guys who have actulley experienced it or known someone who has.
Heres some questions..
how long is the surgery?
how old were you when you got it done?
were you happy with the results?
how was recovery?
I also heard you had to get a chest tube, is that true?
and any other possible information any one can send my way!

Thanks alot everyone :)
Take Care,
Alexandria
 
A

Alexandria

New member
Okay, so I posted this in a blog but everyone told me to post a forum and I would probably get more reponses, as I am doing right now.
<br />
<br />When I was hospitalized March 2007 my doctors found a small scarring spot on my right lower lobe, we didn't think much of it and just decided to keep an eye on it. As you probably guessed, it started spreading over the years. For the past couple doctor visits we were considering getting the lower lobe of my right lung removed because the spreading will eventually get alot worse if it's not taken care of sooner or later. I was just wondering probably what most people would wanna know about this surgery, plus I already tried talking to my doctors about the questions I had and none of them really got answered, so I figured I would turn to you guys who have actulley experienced it or known someone who has.
<br />Heres some questions..
<br />how long is the surgery?
<br />how old were you when you got it done?
<br />were you happy with the results?
<br />how was recovery?
<br />I also heard you had to get a chest tube, is that true?
<br />and any other possible information any one can send my way!
<br />
<br />Thanks alot everyone :)
<br />Take Care,
<br />Alexandria
 
L

LouLou

New member
Lobectomies are done very rarely in the cf community. And not usually because of fear of the spread of damged tissue (is this what you mean by scarring spot?). I believe they are more likely done when the lobe is considered shot. Meaning it is bleeding or collapsing uncontrollablely. They are done when the other lobes are considered still with some life in them or when the person is either inelgible or not opting for a lung transplant. All of this info is based on what I've learned over 3 years a part of htis site. There used to be someone w screenname Jem I believe who was a healthy older cfer who had lobe removed early on (20s I think).

Any doctor or surgeon or hospital for that matter that didn't answer my questions well I would not have perform the service or surgery. You want an expert!
 
L

LouLou

New member
Lobectomies are done very rarely in the cf community. And not usually because of fear of the spread of damged tissue (is this what you mean by scarring spot?). I believe they are more likely done when the lobe is considered shot. Meaning it is bleeding or collapsing uncontrollablely. They are done when the other lobes are considered still with some life in them or when the person is either inelgible or not opting for a lung transplant. All of this info is based on what I've learned over 3 years a part of htis site. There used to be someone w screenname Jem I believe who was a healthy older cfer who had lobe removed early on (20s I think).

Any doctor or surgeon or hospital for that matter that didn't answer my questions well I would not have perform the service or surgery. You want an expert!
 
L

LouLou

New member
Lobectomies are done very rarely in the cf community. And not usually because of fear of the spread of damged tissue (is this what you mean by scarring spot?). I believe they are more likely done when the lobe is considered shot. Meaning it is bleeding or collapsing uncontrollablely. They are done when the other lobes are considered still with some life in them or when the person is either inelgible or not opting for a lung transplant. All of this info is based on what I've learned over 3 years a part of htis site. There used to be someone w screenname Jem I believe who was a healthy older cfer who had lobe removed early on (20s I think).

Any doctor or surgeon or hospital for that matter that didn't answer my questions well I would not have perform the service or surgery. You want an expert!
 
L

LouLou

New member
Lobectomies are done very rarely in the cf community. And not usually because of fear of the spread of damged tissue (is this what you mean by scarring spot?). I believe they are more likely done when the lobe is considered shot. Meaning it is bleeding or collapsing uncontrollablely. They are done when the other lobes are considered still with some life in them or when the person is either inelgible or not opting for a lung transplant. All of this info is based on what I've learned over 3 years a part of htis site. There used to be someone w screenname Jem I believe who was a healthy older cfer who had lobe removed early on (20s I think).

Any doctor or surgeon or hospital for that matter that didn't answer my questions well I would not have perform the service or surgery. You want an expert!
 
L

LouLou

New member
Lobectomies are done very rarely in the cf community. And not usually because of fear of the spread of damged tissue (is this what you mean by scarring spot?). I believe they are more likely done when the lobe is considered shot. Meaning it is bleeding or collapsing uncontrollablely. They are done when the other lobes are considered still with some life in them or when the person is either inelgible or not opting for a lung transplant. All of this info is based on what I've learned over 3 years a part of htis site. There used to be someone w screenname Jem I believe who was a healthy older cfer who had lobe removed early on (20s I think).
<br />
<br />Any doctor or surgeon or hospital for that matter that didn't answer my questions well I would not have perform the service or surgery. You want an expert!
 
E

erock77

Member
True I haven't really heard of anyone getting a lobe removed, except me of course.
I had my upper right removed when I was 11, 1988. My understanding was the it was this one lobe that kept getting infected and sending me back in the hospital several times per year. First thing is to make sure you and your parents understand why it's being recommended, I assume you're at a reputable CF center. As for your questions:

The surgery is 1 day, probably several hours.
I was 11, I guess I'm happy with the results because I'm alive 21 years later. I went in the hospital considerably less after the surgery, sometimes going 2-3 years without an exacerbation so it did work out well.
The recovery sucked, I didn't really know how it would go since I was so young. I just knew I'd get cool gifts to cheer me up. I'll recount what I recall for the benefit of you know what you're getting yourself into:
I was in the ICU for at least several days, the first couple days I was mostly unconscious under sedation and had a very uncomfortable breathing tube jammed down my throat. I moved to the regular floor and I remember talk of a lung collapsing but all turned out well apparently. I had two chest tubes for drainage. It did hurt, you gotta take it easy for a little while, don't lift anything heavy for months. You'll feel it, but in the end you get a gnarly scar and hopefully longer life.
Some of this stuff may have gotten easier in the past 21 years, but this is what I can share. The physical effects to you will probably be similar. Let me know if you have any more questions.
 
E

erock77

Member
True I haven't really heard of anyone getting a lobe removed, except me of course.
I had my upper right removed when I was 11, 1988. My understanding was the it was this one lobe that kept getting infected and sending me back in the hospital several times per year. First thing is to make sure you and your parents understand why it's being recommended, I assume you're at a reputable CF center. As for your questions:

The surgery is 1 day, probably several hours.
I was 11, I guess I'm happy with the results because I'm alive 21 years later. I went in the hospital considerably less after the surgery, sometimes going 2-3 years without an exacerbation so it did work out well.
The recovery sucked, I didn't really know how it would go since I was so young. I just knew I'd get cool gifts to cheer me up. I'll recount what I recall for the benefit of you know what you're getting yourself into:
I was in the ICU for at least several days, the first couple days I was mostly unconscious under sedation and had a very uncomfortable breathing tube jammed down my throat. I moved to the regular floor and I remember talk of a lung collapsing but all turned out well apparently. I had two chest tubes for drainage. It did hurt, you gotta take it easy for a little while, don't lift anything heavy for months. You'll feel it, but in the end you get a gnarly scar and hopefully longer life.
Some of this stuff may have gotten easier in the past 21 years, but this is what I can share. The physical effects to you will probably be similar. Let me know if you have any more questions.
 
E

erock77

Member
True I haven't really heard of anyone getting a lobe removed, except me of course.
I had my upper right removed when I was 11, 1988. My understanding was the it was this one lobe that kept getting infected and sending me back in the hospital several times per year. First thing is to make sure you and your parents understand why it's being recommended, I assume you're at a reputable CF center. As for your questions:

The surgery is 1 day, probably several hours.
I was 11, I guess I'm happy with the results because I'm alive 21 years later. I went in the hospital considerably less after the surgery, sometimes going 2-3 years without an exacerbation so it did work out well.
The recovery sucked, I didn't really know how it would go since I was so young. I just knew I'd get cool gifts to cheer me up. I'll recount what I recall for the benefit of you know what you're getting yourself into:
I was in the ICU for at least several days, the first couple days I was mostly unconscious under sedation and had a very uncomfortable breathing tube jammed down my throat. I moved to the regular floor and I remember talk of a lung collapsing but all turned out well apparently. I had two chest tubes for drainage. It did hurt, you gotta take it easy for a little while, don't lift anything heavy for months. You'll feel it, but in the end you get a gnarly scar and hopefully longer life.
Some of this stuff may have gotten easier in the past 21 years, but this is what I can share. The physical effects to you will probably be similar. Let me know if you have any more questions.
 
E

erock77

Member
True I haven't really heard of anyone getting a lobe removed, except me of course.
I had my upper right removed when I was 11, 1988. My understanding was the it was this one lobe that kept getting infected and sending me back in the hospital several times per year. First thing is to make sure you and your parents understand why it's being recommended, I assume you're at a reputable CF center. As for your questions:

The surgery is 1 day, probably several hours.
I was 11, I guess I'm happy with the results because I'm alive 21 years later. I went in the hospital considerably less after the surgery, sometimes going 2-3 years without an exacerbation so it did work out well.
The recovery sucked, I didn't really know how it would go since I was so young. I just knew I'd get cool gifts to cheer me up. I'll recount what I recall for the benefit of you know what you're getting yourself into:
I was in the ICU for at least several days, the first couple days I was mostly unconscious under sedation and had a very uncomfortable breathing tube jammed down my throat. I moved to the regular floor and I remember talk of a lung collapsing but all turned out well apparently. I had two chest tubes for drainage. It did hurt, you gotta take it easy for a little while, don't lift anything heavy for months. You'll feel it, but in the end you get a gnarly scar and hopefully longer life.
Some of this stuff may have gotten easier in the past 21 years, but this is what I can share. The physical effects to you will probably be similar. Let me know if you have any more questions.
 
E

erock77

Member
True I haven't really heard of anyone getting a lobe removed, except me of course.
<br />I had my upper right removed when I was 11, 1988. My understanding was the it was this one lobe that kept getting infected and sending me back in the hospital several times per year. First thing is to make sure you and your parents understand why it's being recommended, I assume you're at a reputable CF center. As for your questions:
<br />
<br />The surgery is 1 day, probably several hours.
<br />I was 11, I guess I'm happy with the results because I'm alive 21 years later. I went in the hospital considerably less after the surgery, sometimes going 2-3 years without an exacerbation so it did work out well.
<br />The recovery sucked, I didn't really know how it would go since I was so young. I just knew I'd get cool gifts to cheer me up. I'll recount what I recall for the benefit of you know what you're getting yourself into:
<br />I was in the ICU for at least several days, the first couple days I was mostly unconscious under sedation and had a very uncomfortable breathing tube jammed down my throat. I moved to the regular floor and I remember talk of a lung collapsing but all turned out well apparently. I had two chest tubes for drainage. It did hurt, you gotta take it easy for a little while, don't lift anything heavy for months. You'll feel it, but in the end you get a gnarly scar and hopefully longer life.
<br />Some of this stuff may have gotten easier in the past 21 years, but this is what I can share. The physical effects to you will probably be similar. Let me know if you have any more questions.
 
J

JazzysMom

New member
My understanding is that its usually done when that area is making the rest of the lung "toxic".

We have a few members who have had lobes or whole lungs removed for this reason.

Of course, for the life of me I cant recall names LOL!

I am glad to see you were able to post Alex!

I hope you get lots of feedback!

HUGS
 
J

JazzysMom

New member
My understanding is that its usually done when that area is making the rest of the lung "toxic".

We have a few members who have had lobes or whole lungs removed for this reason.

Of course, for the life of me I cant recall names LOL!

I am glad to see you were able to post Alex!

I hope you get lots of feedback!

HUGS
 
J

JazzysMom

New member
My understanding is that its usually done when that area is making the rest of the lung "toxic".

We have a few members who have had lobes or whole lungs removed for this reason.

Of course, for the life of me I cant recall names LOL!

I am glad to see you were able to post Alex!

I hope you get lots of feedback!

HUGS
 
J

JazzysMom

New member
My understanding is that its usually done when that area is making the rest of the lung "toxic".

We have a few members who have had lobes or whole lungs removed for this reason.

Of course, for the life of me I cant recall names LOL!

I am glad to see you were able to post Alex!

I hope you get lots of feedback!

HUGS
 
J

JazzysMom

New member
My understanding is that its usually done when that area is making the rest of the lung "toxic".
<br />
<br />We have a few members who have had lobes or whole lungs removed for this reason.
<br />
<br />Of course, for the life of me I cant recall names LOL!
<br />
<br />I am glad to see you were able to post Alex!
<br />
<br />I hope you get lots of feedback!
<br />
<br />HUGS
 
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