Nissen Fundoplication

TwistedTanya · May 31, 2009

Thanks for your replies!
I did get the Ph test done and the results were pretty bad so that is one reason why they want it done. I believe Duke still does it with all TX. My friend was the guinea pig there 11 years ago and he has always said that I should get it done regardless b/c it made a huge difference in his health. I have read studies that say it is linked to some chronic rejection for SOME people. My friend couldn't even tell he had the problem b/c he had no feeling from it mostly due to numbness from TX. So you could have it and not know. I know they are still researching it but like anything else, research and proving beyond a doubt and being accepted by all the TX docs takes time. I take Prilosec which has worked for the acid reflux but not the regurgitation and frequent belching. They are putting me on Reglan and Nexium for the time being. I have done a lot of research myself but I want to hear personal experiences b/c those mean a lot too.

TwistedTanya · May 31, 2009

Thanks for your replies!
I did get the Ph test done and the results were pretty bad so that is one reason why they want it done. I believe Duke still does it with all TX. My friend was the guinea pig there 11 years ago and he has always said that I should get it done regardless b/c it made a huge difference in his health. I have read studies that say it is linked to some chronic rejection for SOME people. My friend couldn't even tell he had the problem b/c he had no feeling from it mostly due to numbness from TX. So you could have it and not know. I know they are still researching it but like anything else, research and proving beyond a doubt and being accepted by all the TX docs takes time. I take Prilosec which has worked for the acid reflux but not the regurgitation and frequent belching. They are putting me on Reglan and Nexium for the time being. I have done a lot of research myself but I want to hear personal experiences b/c those mean a lot too.

TwistedTanya · May 31, 2009

Thanks for your replies!
I did get the Ph test done and the results were pretty bad so that is one reason why they want it done. I believe Duke still does it with all TX. My friend was the guinea pig there 11 years ago and he has always said that I should get it done regardless b/c it made a huge difference in his health. I have read studies that say it is linked to some chronic rejection for SOME people. My friend couldn't even tell he had the problem b/c he had no feeling from it mostly due to numbness from TX. So you could have it and not know. I know they are still researching it but like anything else, research and proving beyond a doubt and being accepted by all the TX docs takes time. I take Prilosec which has worked for the acid reflux but not the regurgitation and frequent belching. They are putting me on Reglan and Nexium for the time being. I have done a lot of research myself but I want to hear personal experiences b/c those mean a lot too.

TwistedTanya · May 31, 2009

Thanks for your replies!
I did get the Ph test done and the results were pretty bad so that is one reason why they want it done. I believe Duke still does it with all TX. My friend was the guinea pig there 11 years ago and he has always said that I should get it done regardless b/c it made a huge difference in his health. I have read studies that say it is linked to some chronic rejection for SOME people. My friend couldn't even tell he had the problem b/c he had no feeling from it mostly due to numbness from TX. So you could have it and not know. I know they are still researching it but like anything else, research and proving beyond a doubt and being accepted by all the TX docs takes time. I take Prilosec which has worked for the acid reflux but not the regurgitation and frequent belching. They are putting me on Reglan and Nexium for the time being. I have done a lot of research myself but I want to hear personal experiences b/c those mean a lot too.

TwistedTanya · May 31, 2009

Thanks for your replies!
 I did get the Ph test done and the results were pretty bad so that is one reason why they want it done. I believe Duke still does it with all TX. My friend was the guinea pig there 11 years ago and he has always said that I should get it done regardless b/c it made a huge difference in his health. I have read studies that say it is linked to some chronic rejection for SOME people. My friend couldn't even tell he had the problem b/c he had no feeling from it mostly due to numbness from TX. So you could have it and not know. I know they are still researching it but like anything else, research and proving beyond a doubt and being accepted by all the TX docs takes time. I take Prilosec which has worked for the acid reflux but not the regurgitation and frequent belching. They are putting me on Reglan and Nexium for the time being. I have done a lot of research myself but I want to hear personal experiences b/c those mean a lot too.

Skye · May 31, 2009

I have done a lot of research on this. I have had the PhProbe done and it was in the normal range with Nexium. The key really is to find out what you are refluxing that is acidic as well as NOT acidic. There is a new test that some centers use called Impedence testing. It is a 24 hour test that is done during an overnight stay in the hospital. You can be refluxing at night or other times of day and not know it. So even if the Nexium is controlling your symptoms....that nonacidic reflux still has bacteria that can aggravate your lungs.

Knowing all of that, I am still hesitant to have this Nissan Fundo done. The centers seem to like it and recommend it for a lot of the patients......but, woweee wow.....I can't bring myself to think that something like that could be good for me. The potential to lose weight...possibly needing a feeding tube for a while, not being able to burp or vomit. That just sounds so difficult to me. They make light of it; but, I think that is hard for me to want to do.

I would like to see some of the research that supports doing this kind of thing to protect the life of CF lungs or tx'd lungs. If the research is not out there, I am not game.

Here is some interesting reading:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.columbialungtransplant.org/news_ger.html
">http://www.columbialungtransplant.org/news_ger.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.chestjournal.org/content/118/4/1214.full">http://www.chestjournal.org/content/118/4/1214.full</a>

Skye · May 31, 2009

I have done a lot of research on this. I have had the PhProbe done and it was in the normal range with Nexium. The key really is to find out what you are refluxing that is acidic as well as NOT acidic. There is a new test that some centers use called Impedence testing. It is a 24 hour test that is done during an overnight stay in the hospital. You can be refluxing at night or other times of day and not know it. So even if the Nexium is controlling your symptoms....that nonacidic reflux still has bacteria that can aggravate your lungs.

Knowing all of that, I am still hesitant to have this Nissan Fundo done. The centers seem to like it and recommend it for a lot of the patients......but, woweee wow.....I can't bring myself to think that something like that could be good for me. The potential to lose weight...possibly needing a feeding tube for a while, not being able to burp or vomit. That just sounds so difficult to me. They make light of it; but, I think that is hard for me to want to do.

I would like to see some of the research that supports doing this kind of thing to protect the life of CF lungs or tx'd lungs. If the research is not out there, I am not game.

Here is some interesting reading:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.columbialungtransplant.org/news_ger.html
">http://www.columbialungtransplant.org/news_ger.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.chestjournal.org/content/118/4/1214.full">http://www.chestjournal.org/content/118/4/1214.full</a>

Skye · May 31, 2009

I have done a lot of research on this. I have had the PhProbe done and it was in the normal range with Nexium. The key really is to find out what you are refluxing that is acidic as well as NOT acidic. There is a new test that some centers use called Impedence testing. It is a 24 hour test that is done during an overnight stay in the hospital. You can be refluxing at night or other times of day and not know it. So even if the Nexium is controlling your symptoms....that nonacidic reflux still has bacteria that can aggravate your lungs.

Knowing all of that, I am still hesitant to have this Nissan Fundo done. The centers seem to like it and recommend it for a lot of the patients......but, woweee wow.....I can't bring myself to think that something like that could be good for me. The potential to lose weight...possibly needing a feeding tube for a while, not being able to burp or vomit. That just sounds so difficult to me. They make light of it; but, I think that is hard for me to want to do.

I would like to see some of the research that supports doing this kind of thing to protect the life of CF lungs or tx'd lungs. If the research is not out there, I am not game.

Here is some interesting reading:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.columbialungtransplant.org/news_ger.html
">http://www.columbialungtransplant.org/news_ger.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.chestjournal.org/content/118/4/1214.full">http://www.chestjournal.org/content/118/4/1214.full</a>

Skye · May 31, 2009

I have done a lot of research on this. I have had the PhProbe done and it was in the normal range with Nexium. The key really is to find out what you are refluxing that is acidic as well as NOT acidic. There is a new test that some centers use called Impedence testing. It is a 24 hour test that is done during an overnight stay in the hospital. You can be refluxing at night or other times of day and not know it. So even if the Nexium is controlling your symptoms....that nonacidic reflux still has bacteria that can aggravate your lungs.

Knowing all of that, I am still hesitant to have this Nissan Fundo done. The centers seem to like it and recommend it for a lot of the patients......but, woweee wow.....I can't bring myself to think that something like that could be good for me. The potential to lose weight...possibly needing a feeding tube for a while, not being able to burp or vomit. That just sounds so difficult to me. They make light of it; but, I think that is hard for me to want to do.

I would like to see some of the research that supports doing this kind of thing to protect the life of CF lungs or tx'd lungs. If the research is not out there, I am not game.

Here is some interesting reading:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.columbialungtransplant.org/news_ger.html
">http://www.columbialungtransplant.org/news_ger.html
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.chestjournal.org/content/118/4/1214.full">http://www.chestjournal.org/content/118/4/1214.full</a>

Skye · May 31, 2009

I have done a lot of research on this. I have had the PhProbe done and it was in the normal range with Nexium. The key really is to find out what you are refluxing that is acidic as well as NOT acidic. There is a new test that some centers use called Impedence testing. It is a 24 hour test that is done during an overnight stay in the hospital. You can be refluxing at night or other times of day and not know it. So even if the Nexium is controlling your symptoms....that nonacidic reflux still has bacteria that can aggravate your lungs.
 
 Knowing all of that, I am still hesitant to have this Nissan Fundo done. The centers seem to like it and recommend it for a lot of the patients......but, woweee wow.....I can't bring myself to think that something like that could be good for me. The potential to lose weight...possibly needing a feeding tube for a while, not being able to burp or vomit. That just sounds so difficult to me. They make light of it; but, I think that is hard for me to want to do.
 
 I would like to see some of the research that supports doing this kind of thing to protect the life of CF lungs or tx'd lungs. If the research is not out there, I am not game.
 
 Here is some interesting reading:
 
 <a target=_blank class=ftalternatingbarlinklarge href="http://www.columbialungtransplant.org/news_ger.html
">http://www.columbialungtransplant.org/news_ger.html
</a> <a target=_blank class=ftalternatingbarlinklarge href="http://www.chestjournal.org/content/118/4/1214.full">http://www.chestjournal.org/content/118/4/1214.full</a>

TwistedTanya · May 31, 2009

Thanks for the links! I just got off the phone with my CF friend who has had his lung TX for 11 years and had the Nissen surgery. He said he can still burp and throw up if needed. It was about a year and half after his TX that he had the surgery. He said he didn't have to do any tube feeding either. He said the only thing he experienced was that he got very full easily for the first few months but that went away. The fact that he is 11 years post TX makes me think it may be a good idea to get the surgery. Still I knwo everyone is different so that's why I wanted to hear other experiences.

TwistedTanya · May 31, 2009

Thanks for the links! I just got off the phone with my CF friend who has had his lung TX for 11 years and had the Nissen surgery. He said he can still burp and throw up if needed. It was about a year and half after his TX that he had the surgery. He said he didn't have to do any tube feeding either. He said the only thing he experienced was that he got very full easily for the first few months but that went away. The fact that he is 11 years post TX makes me think it may be a good idea to get the surgery. Still I knwo everyone is different so that's why I wanted to hear other experiences.

TwistedTanya · May 31, 2009

Thanks for the links! I just got off the phone with my CF friend who has had his lung TX for 11 years and had the Nissen surgery. He said he can still burp and throw up if needed. It was about a year and half after his TX that he had the surgery. He said he didn't have to do any tube feeding either. He said the only thing he experienced was that he got very full easily for the first few months but that went away. The fact that he is 11 years post TX makes me think it may be a good idea to get the surgery. Still I knwo everyone is different so that's why I wanted to hear other experiences.

TwistedTanya · May 31, 2009

Thanks for the links! I just got off the phone with my CF friend who has had his lung TX for 11 years and had the Nissen surgery. He said he can still burp and throw up if needed. It was about a year and half after his TX that he had the surgery. He said he didn't have to do any tube feeding either. He said the only thing he experienced was that he got very full easily for the first few months but that went away. The fact that he is 11 years post TX makes me think it may be a good idea to get the surgery. Still I knwo everyone is different so that's why I wanted to hear other experiences.

TwistedTanya · May 31, 2009

Thanks for the links! I just got off the phone with my CF friend who has had his lung TX for 11 years and had the Nissen surgery. He said he can still burp and throw up if needed. It was about a year and half after his TX that he had the surgery. He said he didn't have to do any tube feeding either. He said the only thing he experienced was that he got very full easily for the first few months but that went away. The fact that he is 11 years post TX makes me think it may be a good idea to get the surgery. Still I knwo everyone is different so that's why I wanted to hear other experiences.

ali76 · Jun 15, 2009

Hi everyone!
I had the Nissen Fundoplication surgery in December, 4 years after my double lung transplant. I had a lot of reflux following my transplant and my doctor felt that it was in my best interest since my Fev's are slowly declining. I personally had a lot of trouble right after the Fundo surgery. Gas pain, bloating, and most of all trouble keeping food down. When I was given the green light to try regular food a couple of weeks after, it was a nightmare. Some food would get through and into my stomach, and the rest would reverse. It was trial and error with which foods I could eat and not eat and a lot of the time it was so painful to get through a meal. Not fun. I lost some weight by February and voiced my concerns with my Tx docs. They advised me to eat smaller, more frequent meals and drink plenty of water with food. I tried that but was still having pain when eating and still regurgitating. I had a Baruim swallow test and it showed that the opening was small at my surgery site. In April they did a second surgery and ballooned open the area a tiny bit and it has helped.
I can now eat (for the most part) without much pain but still have the gas issues and once in awhile the regurgitation. And I'm still down 9 lbs. My PFT's haven't improved since December and the Fundo, but they have not dropped either. I for one wish I hadn't had it done and had stayed on the Protonix.
Yes I can now burp, like a champ! <img src="i/expressions/face-icon-small-smile.gif" border="0">

ali76 · Jun 15, 2009

Hi everyone!
I had the Nissen Fundoplication surgery in December, 4 years after my double lung transplant. I had a lot of reflux following my transplant and my doctor felt that it was in my best interest since my Fev's are slowly declining. I personally had a lot of trouble right after the Fundo surgery. Gas pain, bloating, and most of all trouble keeping food down. When I was given the green light to try regular food a couple of weeks after, it was a nightmare. Some food would get through and into my stomach, and the rest would reverse. It was trial and error with which foods I could eat and not eat and a lot of the time it was so painful to get through a meal. Not fun. I lost some weight by February and voiced my concerns with my Tx docs. They advised me to eat smaller, more frequent meals and drink plenty of water with food. I tried that but was still having pain when eating and still regurgitating. I had a Baruim swallow test and it showed that the opening was small at my surgery site. In April they did a second surgery and ballooned open the area a tiny bit and it has helped.
I can now eat (for the most part) without much pain but still have the gas issues and once in awhile the regurgitation. And I'm still down 9 lbs. My PFT's haven't improved since December and the Fundo, but they have not dropped either. I for one wish I hadn't had it done and had stayed on the Protonix.
Yes I can now burp, like a champ! <img src="i/expressions/face-icon-small-smile.gif" border="0">

ali76 · Jun 15, 2009

Hi everyone!
I had the Nissen Fundoplication surgery in December, 4 years after my double lung transplant. I had a lot of reflux following my transplant and my doctor felt that it was in my best interest since my Fev's are slowly declining. I personally had a lot of trouble right after the Fundo surgery. Gas pain, bloating, and most of all trouble keeping food down. When I was given the green light to try regular food a couple of weeks after, it was a nightmare. Some food would get through and into my stomach, and the rest would reverse. It was trial and error with which foods I could eat and not eat and a lot of the time it was so painful to get through a meal. Not fun. I lost some weight by February and voiced my concerns with my Tx docs. They advised me to eat smaller, more frequent meals and drink plenty of water with food. I tried that but was still having pain when eating and still regurgitating. I had a Baruim swallow test and it showed that the opening was small at my surgery site. In April they did a second surgery and ballooned open the area a tiny bit and it has helped.
I can now eat (for the most part) without much pain but still have the gas issues and once in awhile the regurgitation. And I'm still down 9 lbs. My PFT's haven't improved since December and the Fundo, but they have not dropped either. I for one wish I hadn't had it done and had stayed on the Protonix.
Yes I can now burp, like a champ! <img src="i/expressions/face-icon-small-smile.gif" border="0">

ali76 · Jun 15, 2009

Hi everyone!
I had the Nissen Fundoplication surgery in December, 4 years after my double lung transplant. I had a lot of reflux following my transplant and my doctor felt that it was in my best interest since my Fev's are slowly declining. I personally had a lot of trouble right after the Fundo surgery. Gas pain, bloating, and most of all trouble keeping food down. When I was given the green light to try regular food a couple of weeks after, it was a nightmare. Some food would get through and into my stomach, and the rest would reverse. It was trial and error with which foods I could eat and not eat and a lot of the time it was so painful to get through a meal. Not fun. I lost some weight by February and voiced my concerns with my Tx docs. They advised me to eat smaller, more frequent meals and drink plenty of water with food. I tried that but was still having pain when eating and still regurgitating. I had a Baruim swallow test and it showed that the opening was small at my surgery site. In April they did a second surgery and ballooned open the area a tiny bit and it has helped.
I can now eat (for the most part) without much pain but still have the gas issues and once in awhile the regurgitation. And I'm still down 9 lbs. My PFT's haven't improved since December and the Fundo, but they have not dropped either. I for one wish I hadn't had it done and had stayed on the Protonix.
Yes I can now burp, like a champ! <img src="i/expressions/face-icon-small-smile.gif" border="0">

ali76 · Jun 15, 2009

Hi everyone!
 I had the Nissen Fundoplication surgery in December, 4 years after my double lung transplant. I had a lot of reflux following my transplant and my doctor felt that it was in my best interest since my Fev's are slowly declining. I personally had a lot of trouble right after the Fundo surgery. Gas pain, bloating, and most of all trouble keeping food down. When I was given the green light to try regular food a couple of weeks after, it was a nightmare. Some food would get through and into my stomach, and the rest would reverse. It was trial and error with which foods I could eat and not eat and a lot of the time it was so painful to get through a meal. Not fun. I lost some weight by February and voiced my concerns with my Tx docs. They advised me to eat smaller, more frequent meals and drink plenty of water with food. I tried that but was still having pain when eating and still regurgitating. I had a Baruim swallow test and it showed that the opening was small at my surgery site. In April they did a second surgery and ballooned open the area a tiny bit and it has helped.
 I can now eat (for the most part) without much pain but still have the gas issues and once in awhile the regurgitation. And I'm still down 9 lbs. My PFT's haven't improved since December and the Fundo, but they have not dropped either. I for one wish I hadn't had it done and had stayed on the Protonix.
 Yes I can now burp, like a champ! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Nissen Fundoplication

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