hiatal hernia repair

[Skye]

I would like to hear about any adult experiences with having this done. I know a lot of kids get it; but, i want to hear from any of you older cfers. Mine is mild; but, I am being told that if I ever want to consider a tx it will have to be fixed. The thinking is to fix it now when I am relatively healthy. My GERD is seemingly very well controlled with nexium and diet. It does not give me problems. Here are my concerns: being OFF nexium to do the PhProbe...i have to repeat this test but that is another story, losing a lot of weight....i can stand to lose about 5 pounds but don't want to lose much more. My biggest fear of all is not being able to exercise or do CPT for a long time. I don't like the thought of that at all. How long did you all have to wait and how did you keep your lungs clear. I am also very scared of the thought of not being able to burp or vommit...that would just be awful to me. Please help me sort through these tough decisions. Any advice or words of wisdom would be greatly appreciated.

 

[Skye]

I would like to hear about any adult experiences with having this done. I know a lot of kids get it; but, i want to hear from any of you older cfers. Mine is mild; but, I am being told that if I ever want to consider a tx it will have to be fixed. The thinking is to fix it now when I am relatively healthy. My GERD is seemingly very well controlled with nexium and diet. It does not give me problems. Here are my concerns: being OFF nexium to do the PhProbe...i have to repeat this test but that is another story, losing a lot of weight....i can stand to lose about 5 pounds but don't want to lose much more. My biggest fear of all is not being able to exercise or do CPT for a long time. I don't like the thought of that at all. How long did you all have to wait and how did you keep your lungs clear. I am also very scared of the thought of not being able to burp or vommit...that would just be awful to me. Please help me sort through these tough decisions. Any advice or words of wisdom would be greatly appreciated.

 

[Skye]

I would like to hear about any adult experiences with having this done. I know a lot of kids get it; but, i want to hear from any of you older cfers. Mine is mild; but, I am being told that if I ever want to consider a tx it will have to be fixed. The thinking is to fix it now when I am relatively healthy. My GERD is seemingly very well controlled with nexium and diet. It does not give me problems. Here are my concerns: being OFF nexium to do the PhProbe...i have to repeat this test but that is another story, losing a lot of weight....i can stand to lose about 5 pounds but don't want to lose much more. My biggest fear of all is not being able to exercise or do CPT for a long time. I don't like the thought of that at all. How long did you all have to wait and how did you keep your lungs clear. I am also very scared of the thought of not being able to burp or vommit...that would just be awful to me. Please help me sort through these tough decisions. Any advice or words of wisdom would be greatly appreciated.

 

[Skye]

I would like to hear about any adult experiences with having this done. I know a lot of kids get it; but, i want to hear from any of you older cfers. Mine is mild; but, I am being told that if I ever want to consider a tx it will have to be fixed. The thinking is to fix it now when I am relatively healthy. My GERD is seemingly very well controlled with nexium and diet. It does not give me problems. Here are my concerns: being OFF nexium to do the PhProbe...i have to repeat this test but that is another story, losing a lot of weight....i can stand to lose about 5 pounds but don't want to lose much more. My biggest fear of all is not being able to exercise or do CPT for a long time. I don't like the thought of that at all. How long did you all have to wait and how did you keep your lungs clear. I am also very scared of the thought of not being able to burp or vommit...that would just be awful to me. Please help me sort through these tough decisions. Any advice or words of wisdom would be greatly appreciated.

 

[Skye]

I would like to hear about any adult experiences with having this done. I know a lot of kids get it; but, i want to hear from any of you older cfers. Mine is mild; but, I am being told that if I ever want to consider a tx it will have to be fixed. The thinking is to fix it now when I am relatively healthy. My GERD is seemingly very well controlled with nexium and diet. It does not give me problems. Here are my concerns: being OFF nexium to do the PhProbe...i have to repeat this test but that is another story, losing a lot of weight....i can stand to lose about 5 pounds but don't want to lose much more. My biggest fear of all is not being able to exercise or do CPT for a long time. I don't like the thought of that at all. How long did you all have to wait and how did you keep your lungs clear. I am also very scared of the thought of not being able to burp or vommit...that would just be awful to me. Please help me sort through these tough decisions. Any advice or words of wisdom would be greatly appreciated.

 

[ladybug]

Hello.

I had recently been dx'd with hiatal hernia that was considered fairly mild in nature and is pretty much controlled by diet and lots of Rx antacid. I was NOT told I'd have to get anything done for tx or future purposes. So, this is interesting to me. Was it your CF doc that said this about tx?

I was basically told by my doc doing the barium that it is tough to find a doc that has done enough repairs for this, so to be very very careful if/when I'd ever choose surgery. He said often many people don't get the surgery because it is more risky than just living with the hernia. However, he was NOT a CF doc, just the doc overseeing my barium swallow.

I'm happy you posted this as hopefully others with this issue will be able to shed some light on what they've done. I was just assuming I'd do nothing until you brought up the issue of tx. If that is something that will HAVE TO be fixed prior to future tx, this should be visited early rather than late, IMO.

 

[ladybug]

Hello.

I had recently been dx'd with hiatal hernia that was considered fairly mild in nature and is pretty much controlled by diet and lots of Rx antacid. I was NOT told I'd have to get anything done for tx or future purposes. So, this is interesting to me. Was it your CF doc that said this about tx?

I was basically told by my doc doing the barium that it is tough to find a doc that has done enough repairs for this, so to be very very careful if/when I'd ever choose surgery. He said often many people don't get the surgery because it is more risky than just living with the hernia. However, he was NOT a CF doc, just the doc overseeing my barium swallow.

I'm happy you posted this as hopefully others with this issue will be able to shed some light on what they've done. I was just assuming I'd do nothing until you brought up the issue of tx. If that is something that will HAVE TO be fixed prior to future tx, this should be visited early rather than late, IMO.

 

[ladybug]

Hello.

I had recently been dx'd with hiatal hernia that was considered fairly mild in nature and is pretty much controlled by diet and lots of Rx antacid. I was NOT told I'd have to get anything done for tx or future purposes. So, this is interesting to me. Was it your CF doc that said this about tx?

I was basically told by my doc doing the barium that it is tough to find a doc that has done enough repairs for this, so to be very very careful if/when I'd ever choose surgery. He said often many people don't get the surgery because it is more risky than just living with the hernia. However, he was NOT a CF doc, just the doc overseeing my barium swallow.

I'm happy you posted this as hopefully others with this issue will be able to shed some light on what they've done. I was just assuming I'd do nothing until you brought up the issue of tx. If that is something that will HAVE TO be fixed prior to future tx, this should be visited early rather than late, IMO.

 

[ladybug]

Hello.

I had recently been dx'd with hiatal hernia that was considered fairly mild in nature and is pretty much controlled by diet and lots of Rx antacid. I was NOT told I'd have to get anything done for tx or future purposes. So, this is interesting to me. Was it your CF doc that said this about tx?

I was basically told by my doc doing the barium that it is tough to find a doc that has done enough repairs for this, so to be very very careful if/when I'd ever choose surgery. He said often many people don't get the surgery because it is more risky than just living with the hernia. However, he was NOT a CF doc, just the doc overseeing my barium swallow.

I'm happy you posted this as hopefully others with this issue will be able to shed some light on what they've done. I was just assuming I'd do nothing until you brought up the issue of tx. If that is something that will HAVE TO be fixed prior to future tx, this should be visited early rather than late, IMO.

 

[ladybug]

Hello.
<br />
<br />I had recently been dx'd with hiatal hernia that was considered fairly mild in nature and is pretty much controlled by diet and lots of Rx antacid. I was NOT told I'd have to get anything done for tx or future purposes. So, this is interesting to me. Was it your CF doc that said this about tx?
<br />
<br />I was basically told by my doc doing the barium that it is tough to find a doc that has done enough repairs for this, so to be very very careful if/when I'd ever choose surgery. He said often many people don't get the surgery because it is more risky than just living with the hernia. However, he was NOT a CF doc, just the doc overseeing my barium swallow.
<br />
<br />I'm happy you posted this as hopefully others with this issue will be able to shed some light on what they've done. I was just assuming I'd do nothing until you brought up the issue of tx. If that is something that will HAVE TO be fixed prior to future tx, this should be visited early rather than late, IMO.
<br />
<br />

 

[Skye]

Sonia....I have been around and around about this particular issue for months. If I was not a "proactive" personality, this issue would have never come up. I have just read and heard soooo much about silent reflux being the cause of many exacerbations. For many years, many tx patients who experienced rejection were actually experiencing aspiration pneumonia. Sooo I wanted to make sure all of my bases were covered. My PhProbe came back normal cuz the test was done wrong...long story so I will leave that part out. Sooo all is fine from tx team standpoint and even the surgeon in my city said to leave it alone unless I get closer to tx.

Well, that didn't make sense to me. I said...why would I wait until I am very ILL to have a risky surgery done? He basically said because it is a risky surgery and you don't want to have it unless you have to and your symptoms are well controlled. I said well why would I not want to take steps to protect the life of MY lungs now. So...he called the Cleveland Clinic and they basically said what I had been saying all along. Repeat the PhProbe and do it right and if it is high than get it fixed while she is healthy. I am starting to regret pushing the issue though cuz the surgery is sounding very scarey and risky to me, ughhhh! Wish I was less involved sometimes. Plus, I am not comfortable with this surgeon cuz he has only done less than 100 of these. I would have to fight with my insurance to go out of network to have it done. I know a brilliant team a couple of hours away. I just don't want to lose lung function by having a risky surgery that I thought might help my lungs, ughhh!

 

[Skye]

Sonia....I have been around and around about this particular issue for months. If I was not a "proactive" personality, this issue would have never come up. I have just read and heard soooo much about silent reflux being the cause of many exacerbations. For many years, many tx patients who experienced rejection were actually experiencing aspiration pneumonia. Sooo I wanted to make sure all of my bases were covered. My PhProbe came back normal cuz the test was done wrong...long story so I will leave that part out. Sooo all is fine from tx team standpoint and even the surgeon in my city said to leave it alone unless I get closer to tx.

Well, that didn't make sense to me. I said...why would I wait until I am very ILL to have a risky surgery done? He basically said because it is a risky surgery and you don't want to have it unless you have to and your symptoms are well controlled. I said well why would I not want to take steps to protect the life of MY lungs now. So...he called the Cleveland Clinic and they basically said what I had been saying all along. Repeat the PhProbe and do it right and if it is high than get it fixed while she is healthy. I am starting to regret pushing the issue though cuz the surgery is sounding very scarey and risky to me, ughhhh! Wish I was less involved sometimes. Plus, I am not comfortable with this surgeon cuz he has only done less than 100 of these. I would have to fight with my insurance to go out of network to have it done. I know a brilliant team a couple of hours away. I just don't want to lose lung function by having a risky surgery that I thought might help my lungs, ughhh!

 

[Skye]

Sonia....I have been around and around about this particular issue for months. If I was not a "proactive" personality, this issue would have never come up. I have just read and heard soooo much about silent reflux being the cause of many exacerbations. For many years, many tx patients who experienced rejection were actually experiencing aspiration pneumonia. Sooo I wanted to make sure all of my bases were covered. My PhProbe came back normal cuz the test was done wrong...long story so I will leave that part out. Sooo all is fine from tx team standpoint and even the surgeon in my city said to leave it alone unless I get closer to tx.

Well, that didn't make sense to me. I said...why would I wait until I am very ILL to have a risky surgery done? He basically said because it is a risky surgery and you don't want to have it unless you have to and your symptoms are well controlled. I said well why would I not want to take steps to protect the life of MY lungs now. So...he called the Cleveland Clinic and they basically said what I had been saying all along. Repeat the PhProbe and do it right and if it is high than get it fixed while she is healthy. I am starting to regret pushing the issue though cuz the surgery is sounding very scarey and risky to me, ughhhh! Wish I was less involved sometimes. Plus, I am not comfortable with this surgeon cuz he has only done less than 100 of these. I would have to fight with my insurance to go out of network to have it done. I know a brilliant team a couple of hours away. I just don't want to lose lung function by having a risky surgery that I thought might help my lungs, ughhh!

 

[Skye]

Sonia....I have been around and around about this particular issue for months. If I was not a "proactive" personality, this issue would have never come up. I have just read and heard soooo much about silent reflux being the cause of many exacerbations. For many years, many tx patients who experienced rejection were actually experiencing aspiration pneumonia. Sooo I wanted to make sure all of my bases were covered. My PhProbe came back normal cuz the test was done wrong...long story so I will leave that part out. Sooo all is fine from tx team standpoint and even the surgeon in my city said to leave it alone unless I get closer to tx.

Well, that didn't make sense to me. I said...why would I wait until I am very ILL to have a risky surgery done? He basically said because it is a risky surgery and you don't want to have it unless you have to and your symptoms are well controlled. I said well why would I not want to take steps to protect the life of MY lungs now. So...he called the Cleveland Clinic and they basically said what I had been saying all along. Repeat the PhProbe and do it right and if it is high than get it fixed while she is healthy. I am starting to regret pushing the issue though cuz the surgery is sounding very scarey and risky to me, ughhhh! Wish I was less involved sometimes. Plus, I am not comfortable with this surgeon cuz he has only done less than 100 of these. I would have to fight with my insurance to go out of network to have it done. I know a brilliant team a couple of hours away. I just don't want to lose lung function by having a risky surgery that I thought might help my lungs, ughhh!

 

[Skye]

Sonia....I have been around and around about this particular issue for months. If I was not a "proactive" personality, this issue would have never come up. I have just read and heard soooo much about silent reflux being the cause of many exacerbations. For many years, many tx patients who experienced rejection were actually experiencing aspiration pneumonia. Sooo I wanted to make sure all of my bases were covered. My PhProbe came back normal cuz the test was done wrong...long story so I will leave that part out. Sooo all is fine from tx team standpoint and even the surgeon in my city said to leave it alone unless I get closer to tx.
<br />
<br />Well, that didn't make sense to me. I said...why would I wait until I am very ILL to have a risky surgery done? He basically said because it is a risky surgery and you don't want to have it unless you have to and your symptoms are well controlled. I said well why would I not want to take steps to protect the life of MY lungs now. So...he called the Cleveland Clinic and they basically said what I had been saying all along. Repeat the PhProbe and do it right and if it is high than get it fixed while she is healthy. I am starting to regret pushing the issue though cuz the surgery is sounding very scarey and risky to me, ughhhh! Wish I was less involved sometimes. Plus, I am not comfortable with this surgeon cuz he has only done less than 100 of these. I would have to fight with my insurance to go out of network to have it done. I know a brilliant team a couple of hours away. I just don't want to lose lung function by having a risky surgery that I thought might help my lungs, ughhh!

 

[Skye]

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[Skye]

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[Skye]

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[Skye]

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[Skye]

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