hiatal hernia repair

[Diane]

This may not be helpful but i will throw it out there anyway.
My mom had surgery for her hiatal hernia twice. She waited years and years because she was told the surgery was risky etc. and the hiatal hernia was not that big. She suffered years with heartburn reflux etc. Then many years later developed pulmonary fibrosis because of it.
She finally got to a point where they had to do the surgery 2 years ago. The surgery went well, but things didnt improve completely so she had to have another a year later (last Dec.)
She had a feeding tube right after surgery which they never used but wanted it there just in case it would be needed. After a month they removed it.

I can certainly understand your haste in wanting this surgery done because the reflux can definitely do some harm to the lungs over time.

They gave my mom one of those things you have to take a deep breath in and keep the little thing in between the lines to keep her lungs clear after surgery. Then after some therapy she was back to normal. My mom is 70 years old when she had this surgery with pulmonary fibrosis, and a constant cough. The surgery was hard on her but surprisingly she recovered pretty well and quickly.

 

[Diane]

This may not be helpful but i will throw it out there anyway.
My mom had surgery for her hiatal hernia twice. She waited years and years because she was told the surgery was risky etc. and the hiatal hernia was not that big. She suffered years with heartburn reflux etc. Then many years later developed pulmonary fibrosis because of it.
She finally got to a point where they had to do the surgery 2 years ago. The surgery went well, but things didnt improve completely so she had to have another a year later (last Dec.)
She had a feeding tube right after surgery which they never used but wanted it there just in case it would be needed. After a month they removed it.

I can certainly understand your haste in wanting this surgery done because the reflux can definitely do some harm to the lungs over time.

They gave my mom one of those things you have to take a deep breath in and keep the little thing in between the lines to keep her lungs clear after surgery. Then after some therapy she was back to normal. My mom is 70 years old when she had this surgery with pulmonary fibrosis, and a constant cough. The surgery was hard on her but surprisingly she recovered pretty well and quickly.

 

[Diane]

This may not be helpful but i will throw it out there anyway.
My mom had surgery for her hiatal hernia twice. She waited years and years because she was told the surgery was risky etc. and the hiatal hernia was not that big. She suffered years with heartburn reflux etc. Then many years later developed pulmonary fibrosis because of it.
She finally got to a point where they had to do the surgery 2 years ago. The surgery went well, but things didnt improve completely so she had to have another a year later (last Dec.)
She had a feeding tube right after surgery which they never used but wanted it there just in case it would be needed. After a month they removed it.

I can certainly understand your haste in wanting this surgery done because the reflux can definitely do some harm to the lungs over time.

They gave my mom one of those things you have to take a deep breath in and keep the little thing in between the lines to keep her lungs clear after surgery. Then after some therapy she was back to normal. My mom is 70 years old when she had this surgery with pulmonary fibrosis, and a constant cough. The surgery was hard on her but surprisingly she recovered pretty well and quickly.

 

[Diane]

This may not be helpful but i will throw it out there anyway.
My mom had surgery for her hiatal hernia twice. She waited years and years because she was told the surgery was risky etc. and the hiatal hernia was not that big. She suffered years with heartburn reflux etc. Then many years later developed pulmonary fibrosis because of it.
She finally got to a point where they had to do the surgery 2 years ago. The surgery went well, but things didnt improve completely so she had to have another a year later (last Dec.)
She had a feeding tube right after surgery which they never used but wanted it there just in case it would be needed. After a month they removed it.

I can certainly understand your haste in wanting this surgery done because the reflux can definitely do some harm to the lungs over time.

They gave my mom one of those things you have to take a deep breath in and keep the little thing in between the lines to keep her lungs clear after surgery. Then after some therapy she was back to normal. My mom is 70 years old when she had this surgery with pulmonary fibrosis, and a constant cough. The surgery was hard on her but surprisingly she recovered pretty well and quickly.

 

[Diane]

This may not be helpful but i will throw it out there anyway.
<br /> My mom had surgery for her hiatal hernia twice. She waited years and years because she was told the surgery was risky etc. and the hiatal hernia was not that big. She suffered years with heartburn reflux etc. Then many years later developed pulmonary fibrosis because of it.
<br />She finally got to a point where they had to do the surgery 2 years ago. The surgery went well, but things didnt improve completely so she had to have another a year later (last Dec.)
<br /> She had a feeding tube right after surgery which they never used but wanted it there just in case it would be needed. After a month they removed it.
<br />
<br /> I can certainly understand your haste in wanting this surgery done because the reflux can definitely do some harm to the lungs over time.
<br />
<br /> They gave my mom one of those things you have to take a deep breath in and keep the little thing in between the lines to keep her lungs clear after surgery. Then after some therapy she was back to normal. My mom is 70 years old when she had this surgery with pulmonary fibrosis, and a constant cough. The surgery was hard on her but surprisingly she recovered pretty well and quickly.
<br />

 

[ladybug]

Thanks for sharing your story, Diane!

And thanks for the further info. on your situation, Skye.

I guess my biggest thing is kinda what you're referring to and struggling with. A surgery in and of itself introduces bacteria and risk of infection. Not only the issues a non-CFer would deal with with regard to recovery, finding a good surgeon, etc., but with us CFers, generally (in my experience) the consensus is to not do invasive things unless absolutely necessary (i.e. not doing lots of bronchs which would introduce infection and unneccessary risks unless its really warranted). So, I personally think that if reflux, etc. is controlled with Rx'd meds, diet, etc. I wouldn't risk a surgery just for the sake of doing it and being proactive. That is just me though.

The fact is, you may do the surgery and truly regret it if you loose lung function, etc. And, if that were the case, and your health suffers because of it (possibley placing you on a tx list much sooner than it would have been), was it really worth it? However, you may recover nicely from it and find that it was a great thing to do and when you do have to go on the tx list, like you mentioned, you'll have had this done long ago and wouldn't need another invasive thing to "check off" before the tx. Again, I'm hoping someone posts on here who has needed a lung tx and has been told they had to have this surgery first. I've just never heard of that.

I consider myself pretty proactive. I am OCD about my treatments and exercise, etc. However, I won't subject myself to surgeries, etc. (where they're literally risking my lungs and severe infection) unless its absolutely necessary. But, that is just me. Everyone is different.

And, I know this wasn't really the point of your post, so I'll let others respond now who have had more experience with this surgery and perhaps they can shed some light on it.

I am interested to know how many CFers (since GERD is soooo common with CF) have actually been told to have this done or have chosen to do so on their own. This is an intriguing topic! I hope you get some experiences from the hundreds on here. I know we're not the only CFers to suffer hiatal hernias (it sounds like this is a fairly common thing in the general population from what i've read).

 

[ladybug]

Thanks for sharing your story, Diane!

And thanks for the further info. on your situation, Skye.

I guess my biggest thing is kinda what you're referring to and struggling with. A surgery in and of itself introduces bacteria and risk of infection. Not only the issues a non-CFer would deal with with regard to recovery, finding a good surgeon, etc., but with us CFers, generally (in my experience) the consensus is to not do invasive things unless absolutely necessary (i.e. not doing lots of bronchs which would introduce infection and unneccessary risks unless its really warranted). So, I personally think that if reflux, etc. is controlled with Rx'd meds, diet, etc. I wouldn't risk a surgery just for the sake of doing it and being proactive. That is just me though.

The fact is, you may do the surgery and truly regret it if you loose lung function, etc. And, if that were the case, and your health suffers because of it (possibley placing you on a tx list much sooner than it would have been), was it really worth it? However, you may recover nicely from it and find that it was a great thing to do and when you do have to go on the tx list, like you mentioned, you'll have had this done long ago and wouldn't need another invasive thing to "check off" before the tx. Again, I'm hoping someone posts on here who has needed a lung tx and has been told they had to have this surgery first. I've just never heard of that.

I consider myself pretty proactive. I am OCD about my treatments and exercise, etc. However, I won't subject myself to surgeries, etc. (where they're literally risking my lungs and severe infection) unless its absolutely necessary. But, that is just me. Everyone is different.

And, I know this wasn't really the point of your post, so I'll let others respond now who have had more experience with this surgery and perhaps they can shed some light on it.

I am interested to know how many CFers (since GERD is soooo common with CF) have actually been told to have this done or have chosen to do so on their own. This is an intriguing topic! I hope you get some experiences from the hundreds on here. I know we're not the only CFers to suffer hiatal hernias (it sounds like this is a fairly common thing in the general population from what i've read).

 

[ladybug]

Thanks for sharing your story, Diane!

And thanks for the further info. on your situation, Skye.

I guess my biggest thing is kinda what you're referring to and struggling with. A surgery in and of itself introduces bacteria and risk of infection. Not only the issues a non-CFer would deal with with regard to recovery, finding a good surgeon, etc., but with us CFers, generally (in my experience) the consensus is to not do invasive things unless absolutely necessary (i.e. not doing lots of bronchs which would introduce infection and unneccessary risks unless its really warranted). So, I personally think that if reflux, etc. is controlled with Rx'd meds, diet, etc. I wouldn't risk a surgery just for the sake of doing it and being proactive. That is just me though.

The fact is, you may do the surgery and truly regret it if you loose lung function, etc. And, if that were the case, and your health suffers because of it (possibley placing you on a tx list much sooner than it would have been), was it really worth it? However, you may recover nicely from it and find that it was a great thing to do and when you do have to go on the tx list, like you mentioned, you'll have had this done long ago and wouldn't need another invasive thing to "check off" before the tx. Again, I'm hoping someone posts on here who has needed a lung tx and has been told they had to have this surgery first. I've just never heard of that.

I consider myself pretty proactive. I am OCD about my treatments and exercise, etc. However, I won't subject myself to surgeries, etc. (where they're literally risking my lungs and severe infection) unless its absolutely necessary. But, that is just me. Everyone is different.

And, I know this wasn't really the point of your post, so I'll let others respond now who have had more experience with this surgery and perhaps they can shed some light on it.

I am interested to know how many CFers (since GERD is soooo common with CF) have actually been told to have this done or have chosen to do so on their own. This is an intriguing topic! I hope you get some experiences from the hundreds on here. I know we're not the only CFers to suffer hiatal hernias (it sounds like this is a fairly common thing in the general population from what i've read).

 

[ladybug]

Thanks for sharing your story, Diane!

And thanks for the further info. on your situation, Skye.

I guess my biggest thing is kinda what you're referring to and struggling with. A surgery in and of itself introduces bacteria and risk of infection. Not only the issues a non-CFer would deal with with regard to recovery, finding a good surgeon, etc., but with us CFers, generally (in my experience) the consensus is to not do invasive things unless absolutely necessary (i.e. not doing lots of bronchs which would introduce infection and unneccessary risks unless its really warranted). So, I personally think that if reflux, etc. is controlled with Rx'd meds, diet, etc. I wouldn't risk a surgery just for the sake of doing it and being proactive. That is just me though.

The fact is, you may do the surgery and truly regret it if you loose lung function, etc. And, if that were the case, and your health suffers because of it (possibley placing you on a tx list much sooner than it would have been), was it really worth it? However, you may recover nicely from it and find that it was a great thing to do and when you do have to go on the tx list, like you mentioned, you'll have had this done long ago and wouldn't need another invasive thing to "check off" before the tx. Again, I'm hoping someone posts on here who has needed a lung tx and has been told they had to have this surgery first. I've just never heard of that.

I consider myself pretty proactive. I am OCD about my treatments and exercise, etc. However, I won't subject myself to surgeries, etc. (where they're literally risking my lungs and severe infection) unless its absolutely necessary. But, that is just me. Everyone is different.

And, I know this wasn't really the point of your post, so I'll let others respond now who have had more experience with this surgery and perhaps they can shed some light on it.

I am interested to know how many CFers (since GERD is soooo common with CF) have actually been told to have this done or have chosen to do so on their own. This is an intriguing topic! I hope you get some experiences from the hundreds on here. I know we're not the only CFers to suffer hiatal hernias (it sounds like this is a fairly common thing in the general population from what i've read).

 

[ladybug]

Thanks for sharing your story, Diane!
<br />
<br />And thanks for the further info. on your situation, Skye.
<br />
<br />I guess my biggest thing is kinda what you're referring to and struggling with. A surgery in and of itself introduces bacteria and risk of infection. Not only the issues a non-CFer would deal with with regard to recovery, finding a good surgeon, etc., but with us CFers, generally (in my experience) the consensus is to not do invasive things unless absolutely necessary (i.e. not doing lots of bronchs which would introduce infection and unneccessary risks unless its really warranted). So, I personally think that if reflux, etc. is controlled with Rx'd meds, diet, etc. I wouldn't risk a surgery just for the sake of doing it and being proactive. That is just me though.
<br />
<br />The fact is, you may do the surgery and truly regret it if you loose lung function, etc. And, if that were the case, and your health suffers because of it (possibley placing you on a tx list much sooner than it would have been), was it really worth it? However, you may recover nicely from it and find that it was a great thing to do and when you do have to go on the tx list, like you mentioned, you'll have had this done long ago and wouldn't need another invasive thing to "check off" before the tx. Again, I'm hoping someone posts on here who has needed a lung tx and has been told they had to have this surgery first. I've just never heard of that.
<br />
<br />I consider myself pretty proactive. I am OCD about my treatments and exercise, etc. However, I won't subject myself to surgeries, etc. (where they're literally risking my lungs and severe infection) unless its absolutely necessary. But, that is just me. Everyone is different.
<br />
<br />And, I know this wasn't really the point of your post, so I'll let others respond now who have had more experience with this surgery and perhaps they can shed some light on it.
<br />
<br />I am interested to know how many CFers (since GERD is soooo common with CF) have actually been told to have this done or have chosen to do so on their own. This is an intriguing topic! I hope you get some experiences from the hundreds on here. I know we're not the only CFers to suffer hiatal hernias (it sounds like this is a fairly common thing in the general population from what i've read).
<br />
<br />

 

[ladybug]

This is on a side note, but it would be great if things like this were studied more with regard to CF. I think asthma and reflux and allergies, etc. play a MUCH larger part in our symptoms than docs even realize. It would be great if there were more studies on topics such as this so we'd have some concrete evidence one way or the other. Its always nice when you can go to a study (even a longitudinal one) to see what affects our rate of decline BESIDES just infection.

 

[ladybug]

This is on a side note, but it would be great if things like this were studied more with regard to CF. I think asthma and reflux and allergies, etc. play a MUCH larger part in our symptoms than docs even realize. It would be great if there were more studies on topics such as this so we'd have some concrete evidence one way or the other. Its always nice when you can go to a study (even a longitudinal one) to see what affects our rate of decline BESIDES just infection.

 

[ladybug]

This is on a side note, but it would be great if things like this were studied more with regard to CF. I think asthma and reflux and allergies, etc. play a MUCH larger part in our symptoms than docs even realize. It would be great if there were more studies on topics such as this so we'd have some concrete evidence one way or the other. Its always nice when you can go to a study (even a longitudinal one) to see what affects our rate of decline BESIDES just infection.

 

[ladybug]

This is on a side note, but it would be great if things like this were studied more with regard to CF. I think asthma and reflux and allergies, etc. play a MUCH larger part in our symptoms than docs even realize. It would be great if there were more studies on topics such as this so we'd have some concrete evidence one way or the other. Its always nice when you can go to a study (even a longitudinal one) to see what affects our rate of decline BESIDES just infection.

 

[ladybug]

This is on a side note, but it would be great if things like this were studied more with regard to CF. I think asthma and reflux and allergies, etc. play a MUCH larger part in our symptoms than docs even realize. It would be great if there were more studies on topics such as this so we'd have some concrete evidence one way or the other. Its always nice when you can go to a study (even a longitudinal one) to see what affects our rate of decline BESIDES just infection.

 

[Skye]

I am just wondering if I am getting advice re: Nissan Fundo from some of the "trailblaizers" for lack of a better word. For example, my center in Columbus first recommended something called Impedance testing. Their GI specialists regularly recommend this form of PhProbe. It is more accurate than a regular PhProbe because it looks at acidic as well as non-acidic reflux. I could not find it anywhere in the literature and my insurance would not pay for it because they considered it experimental....ughh! Anyway, they do this test regularly on CFers experiencing asthma-like symptoms. They also OFTEN recommend Nissan Fundo in a lot of their younger CFers to protect their lungs over a lifetime. I also know that NOT ALL tx centers do stomach wraps as they are called. I think it is just some of the bigger centers who are getting on board to recommend this...again to protect the lungs, in that case against rejection. I know that Duke and the Cleveland Clinic recommend it. I would be interested to know if others out there do.

Sonia....I DO tend to agree with you about the risky surgery, ughh! I am leaning toward a more wait and see stand. My real fear I guess is being afraid to do something that might protect the lungs I have NOW. I DON'T KNOW if some of the "mini-exacerbations" that I experience now and then may be related to some kind of night-time reflux. I have yet to find really one adult who has had this done PRE TX. Though it seems odd to me that MANY children with CF have had it done. I really hope more respond.

 

[Skye]

I am just wondering if I am getting advice re: Nissan Fundo from some of the "trailblaizers" for lack of a better word. For example, my center in Columbus first recommended something called Impedance testing. Their GI specialists regularly recommend this form of PhProbe. It is more accurate than a regular PhProbe because it looks at acidic as well as non-acidic reflux. I could not find it anywhere in the literature and my insurance would not pay for it because they considered it experimental....ughh! Anyway, they do this test regularly on CFers experiencing asthma-like symptoms. They also OFTEN recommend Nissan Fundo in a lot of their younger CFers to protect their lungs over a lifetime. I also know that NOT ALL tx centers do stomach wraps as they are called. I think it is just some of the bigger centers who are getting on board to recommend this...again to protect the lungs, in that case against rejection. I know that Duke and the Cleveland Clinic recommend it. I would be interested to know if others out there do.

Sonia....I DO tend to agree with you about the risky surgery, ughh! I am leaning toward a more wait and see stand. My real fear I guess is being afraid to do something that might protect the lungs I have NOW. I DON'T KNOW if some of the "mini-exacerbations" that I experience now and then may be related to some kind of night-time reflux. I have yet to find really one adult who has had this done PRE TX. Though it seems odd to me that MANY children with CF have had it done. I really hope more respond.

 

[Skye]

I am just wondering if I am getting advice re: Nissan Fundo from some of the "trailblaizers" for lack of a better word. For example, my center in Columbus first recommended something called Impedance testing. Their GI specialists regularly recommend this form of PhProbe. It is more accurate than a regular PhProbe because it looks at acidic as well as non-acidic reflux. I could not find it anywhere in the literature and my insurance would not pay for it because they considered it experimental....ughh! Anyway, they do this test regularly on CFers experiencing asthma-like symptoms. They also OFTEN recommend Nissan Fundo in a lot of their younger CFers to protect their lungs over a lifetime. I also know that NOT ALL tx centers do stomach wraps as they are called. I think it is just some of the bigger centers who are getting on board to recommend this...again to protect the lungs, in that case against rejection. I know that Duke and the Cleveland Clinic recommend it. I would be interested to know if others out there do.

Sonia....I DO tend to agree with you about the risky surgery, ughh! I am leaning toward a more wait and see stand. My real fear I guess is being afraid to do something that might protect the lungs I have NOW. I DON'T KNOW if some of the "mini-exacerbations" that I experience now and then may be related to some kind of night-time reflux. I have yet to find really one adult who has had this done PRE TX. Though it seems odd to me that MANY children with CF have had it done. I really hope more respond.

 

[Skye]

I am just wondering if I am getting advice re: Nissan Fundo from some of the "trailblaizers" for lack of a better word. For example, my center in Columbus first recommended something called Impedance testing. Their GI specialists regularly recommend this form of PhProbe. It is more accurate than a regular PhProbe because it looks at acidic as well as non-acidic reflux. I could not find it anywhere in the literature and my insurance would not pay for it because they considered it experimental....ughh! Anyway, they do this test regularly on CFers experiencing asthma-like symptoms. They also OFTEN recommend Nissan Fundo in a lot of their younger CFers to protect their lungs over a lifetime. I also know that NOT ALL tx centers do stomach wraps as they are called. I think it is just some of the bigger centers who are getting on board to recommend this...again to protect the lungs, in that case against rejection. I know that Duke and the Cleveland Clinic recommend it. I would be interested to know if others out there do.

Sonia....I DO tend to agree with you about the risky surgery, ughh! I am leaning toward a more wait and see stand. My real fear I guess is being afraid to do something that might protect the lungs I have NOW. I DON'T KNOW if some of the "mini-exacerbations" that I experience now and then may be related to some kind of night-time reflux. I have yet to find really one adult who has had this done PRE TX. Though it seems odd to me that MANY children with CF have had it done. I really hope more respond.

 

[Skye]

I am just wondering if I am getting advice re: Nissan Fundo from some of the "trailblaizers" for lack of a better word. For example, my center in Columbus first recommended something called Impedance testing. Their GI specialists regularly recommend this form of PhProbe. It is more accurate than a regular PhProbe because it looks at acidic as well as non-acidic reflux. I could not find it anywhere in the literature and my insurance would not pay for it because they considered it experimental....ughh! Anyway, they do this test regularly on CFers experiencing asthma-like symptoms. They also OFTEN recommend Nissan Fundo in a lot of their younger CFers to protect their lungs over a lifetime. I also know that NOT ALL tx centers do stomach wraps as they are called. I think it is just some of the bigger centers who are getting on board to recommend this...again to protect the lungs, in that case against rejection. I know that Duke and the Cleveland Clinic recommend it. I would be interested to know if others out there do.
<br />
<br />Sonia....I DO tend to agree with you about the risky surgery, ughh! I am leaning toward a more wait and see stand. My real fear I guess is being afraid to do something that might protect the lungs I have NOW. I DON'T KNOW if some of the "mini-exacerbations" that I experience now and then may be related to some kind of night-time reflux. I have yet to find really one adult who has had this done PRE TX. Though it seems odd to me that MANY children with CF have had it done. I really hope more respond.