GERD + respiratory problems...Help!!!

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horse crazy
Regular Member


Date Joined Feb 2010
Total Posts : 199
   Posted 9/12/2010 3:40 AM (GMT -6)   
I am new to this forum,however been on the bi-polar board for quite awhile.  I am 62, and right now very frustrated.  Being Bi-polar has taken a back seat to what is going on now.  I have taken prilosec for a couple years now for acid reflux...and I was doing so well, I quit taking the prilosec last March.  In May i developed an upper respiratory infection that was resistant to antibiotics, and it has been downhill since.  I have seen my family doc, a lung doc, infectious disease doc and a stomach doc...all say it is due to GERD. And I was put on twice as much prilosec 40 mg a day, and steriods, inhaler and some other drug for the breathing problems.  Now just to remind you, the respiratory issues started in May...I used to have a very impressive cough (that has improved), but now I am left with shortness  of breath, I can't walk fast or ride my horse without almost falling over from wheezing and gasping for breath.  When I talk, my sentences trail off and I run out of air to finish a sentence, which makes work a bit of a challenge since I am a marriage counselor and I earn my living by talking. Oh yeah...my acid reflux I do not notice at all , but apparently it is being very busy causing havoc in my lungs.  I am very discouraged and a bit (OK, alot) scared that this stomach acid is going to continue to attack my lungs....and I honestly, don't know how I am going to deal with this.  Has anyone else experienced this and did it ever get resolved??  Is there anything I can do, besides the GERD diet, prilosec, sleeping at a 30 degree angle, losing some weight, but none of this improves the respiratory issues that all docs say is due to the acid reflux.  I would appreciate any feedback.  Thanks
Gaely

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 9/12/2010 9:23 AM (GMT -6)   
Hi Gaely,
I am one of the people who, like you, have had my lungs badly effected by GERD. My reflux was very unimpressive when tested. My asthma and family doctor were both convinced that my asthma was being made uncontrollable by reflux. I had had reflux for probably twenty years and it had gotten progressively worse. At the time my lungs were out of control, I was taking 40mg Protonix twice a day, and 300mg Zantac at night, to no avail.

about five years ago I was hospitalized for asthma caused by a stomach/reflux episode caused by an antibiotic that inflamed my stomach lining. While I was hospitalized my GI team did absolutely nothing to help me. They didn't even deal with my diet--I was receiving spaghetti as a dinner entree.

I was coughing, wheezing, nebulizing, taking inhalers, using high doses of inhaled steroid with intermittent (ineffective) prednosone. Nothing worked. I stupidly spent four years like that. Don't make that choice.

I changed GI docs, and my second doctor did a 24hour PH monitor test to see how bad my reflux was. The test showed an extremely low result--4. He also did a manometry that showed my swallowing was normal, but there was a weakness in the less. That said, he told me with confidence, that my reflux was not causing my asthma. I had already had an endoscopy that showed no inflammation in my esophagus.

That said, my family doc and asthma doc were still convinced that my reflux was the problem. (I also have allergies that do affect my lungs, but NOTHING like the way they were at this point.) They both thought that I needed a Nissen Fundoplication to close stomach valve that was allowing acid to reach my lungs.

I continued to struggle for a couple more years, and finally my family doctor got so frustrated that he sent me to a surgeon he worked closely with. The surgeon did another endoscopy and a barium swallow, confirming my hiatus hernia (small) and slightly open LES. He said that I was a good candidate for a Nissen and said I should schedule the surgery. He trusted my family doctor and the information he had been given regarding my out of control asthma.

I wasn't ready to go have someone do surgery without more information. Also, I'd learned here and other places that without a good surgeon (extremely skilled and successful with Nissens in particular) the results could be devastating.

So...I went back to my GI doc, armed with the new information. He did another 24hr PH monitor, and the results were 14--a very unimpressive number. At this point, though, with all the communication and frustration of my family and asthma docs, he admitted that it wouldn't take many acid reflux episodes to create problems, so the reflux could indeed be causing my problems. He told me I could either continue on meds to treat it, or go talk to a surgeon he recommends for the procedure.

I'd tried meds. They didn't work. So I went to the surgeon to talk about my issues, and consider surgery as an option.

I had feared the surgery...if you look around the internet, you'll find lots of very unhappy people who had the surgery and will warn against it. If I hadn't found this forum, I probably would still be suffering with asthma. People here had a much more realistic and helpful attitude. Because they basically saved my life (my family doc said my condition was life-threatening) I stay around here and do what I can to help others in search of answers. Many people on this forum have become my long-distance friends!

My surgeon said that his only concern was that the number (14) was very borderline. He told me that the surgery would help my asthma if that reflux was causing the problem. He was willing to go ahead with the surgery even with the low number, based on the input from my doctors.

I'd had it at this point. While I was not thrilled to have surgery, I knew that I had to give it a try. If it didn't work, then the reflux cause would be ruled out. I really didn't have a choice. I couldn't go on living like I was. The amount of steroids I was taking was very unhealthy.

I had the surgery in February 2009. I was in the middle of a lung infection when I had the surgery. They couldn't wait for my lungs to get better to do it, since they were always bad.

It took about two and a half months post surgery to heal my very unhealthy lungs. Since the surgery, my lungs have been great. As I said, I do have asthma-related lung flare-ups, but nothing at all like they were before surgery.

Keep in mind that it took me four years to come to the decision to have surgery. Hindsight is 20-20, and I wish I'd done it years earlier. I have long term damage from steroids.

That's not to say that my asthma is perfect now. I'm in the middle of allergy season--ragweed is bad for me--and I've got a little mucous in my lungs I'm dealing with (sinus issues, too). I do not have any wheezing--even with my normal asthma issues, they are NOTHING like before surgery.

I'm not telling you you need surgery. I'm just sharing my own experience with reflux and asthma.
I hope you find an answer to your problem soon.
If you have any additional questions, feel free to ask.
Good luck!
Denise

turn

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/12/2010 9:37 AM (GMT -6)   
I'm also a person that acid had messed with my lungs. I was diagnosed with gerd about ten years ago. I was able to handle it with medication for six years. about four years ago I started constantly coughing. Nothing I did stopped it. I had many doctors scratching their heads in wonder. Finally one doctor said, "I think it's GERD affecting your lungs."
Last year in December I had the surgery. It's been smooth sailing since then.

Have your GI run these tests:
Barium swallow
manometry
EGD
Ph test or BRAVO


They will tell exactly what's happening.
Joy

horse crazy
Regular Member


Date Joined Feb 2010
Total Posts : 199
   Posted 9/12/2010 10:06 AM (GMT -6)   
Denice and Joy..
Wow!!  When the stomach doc told me the reflux was messing up my lungs and my family doc confirmed it, I found it totally hard to believe.  I really appreciate your replies.  Denice, you helped me realize I cannot drag this out (because I would probably go for years like you did).  This is effecting my whole way of life.  It's kind of ironic that in the spring I decided that being bi-polar was really messing things up.  Now bi-polar is on the back burner and seems small compared to this.  Not being able to breathe is horrible.  I see I need to be aggressive about this and it is not magically going to go away.  Thank you so much for your input.  I will probably be visiting this board regularly.
Gaely

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 9/12/2010 5:22 PM (GMT -6)   
Hi Gaely,
I'm glad you've joined us. You're most certainly in the right place. Your docs were right...as hard as it is to believe (especially when you (like me) have unimpressive levels of reflux) that lungs can be so severely effected. Obviously, they can.

It's amazing how one big problem can make another seems smaller. I think you're right that you need to attack this problem aggressively. Judging from how you sound, your condition is similar to the one I was living with. I let it go way, way too long. As I said, it was only after I found this site that I had the courage to more forward with surgery, which I badly needed.

Hey, maybe once you're back on PPI's and your docs are aggressively treating your reflux with meds, you will recover and not need anything else.

Be sure to check in regularly and let us know how things are going with your search for answers. If you have any other questions, or want to run what the doctors have told you past someone, post away, and we'll answer what we can. This is a very active forum--not like some where you post and wait forever for an answer.

Hang in there. Things will get better.
Take care and keep posting.
Deniseturn
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