New member Need Help Bad with concerns

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opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/24/2011 1:57 PM (GMT -6)   
Please welcome our new member Need Help Bad-

My husband has been suffering horribly with reflux. It is all the way up in his throat 100% of the time now. He has a scheduled 24 hour ph test on Tuesday to see if he should have surgery.
His tongue and lips are burning now it has gotten that bad. He has had a sore throat for several years, and now has a hard time breathing. He has been wheezing and can't get a deep breath. He just wants to live. He has lost 30 pounds and is having a hard time putting any weight back on. He has had an upper endoscapy which showed some abnormal tissue in the esophugus, but luckily was benign. I am so afraid for him. He hasn't had a life for so long. He is just existing and it is a painful and sad exidstance.  He is unable to smile or laugh anymore and is having a hard time seeing a future without this horror that has become his life. we will find out if he is a candidate for the surgery after tests, but if he is not, what then? And if the surgery isn't successful? It is so hard to know what to do. Helpless and hopeless
 
Edit:  I am sorry but we are not allowed to talk of suicide ideation. Thank you for your understanding.  Kitt

Post Edited By Moderator (stkitt) : 11/25/2011 8:14:30 AM (GMT-7)


opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/24/2011 1:59 PM (GMT -6)   
MMM posted:

Needhelpbad, I'm sorry to hear of your husband's state of health. How old is he? GERD can contribute to respiratory problems for sure. Keep pushing for the test results after Tuesday's tests. Can you schedule an appointment with the consultant the same day?

If he is very unwell perhaps he should be in hospital between now and when they do the test? Please do not hesitate to take him to the ER, if his physical or mental state becomes unmanageable at home over the weekend.

I'm sure other members will be online to comment, but meanwhile please hang in there. This is a tough time for you both and you should remember to look after yourself too, and seek support to help you both through this. Do not be afraid to tell your primary carer if you feel either of you is not coping.

Keep us informed - and welcome to Healingwell.

MMM
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

opnwhl4
Veteran Member


Date Joined Dec 2008
Total Posts : 4961
   Posted 11/24/2011 1:59 PM (GMT -6)   
needhelpbad-

We have a few members who had the surgery to specifically stop their respiratory problems. Does he take anything for the reflux now?

Along with the Ph study be sure to get a manometry to make sure his esophagus is functioning properly. This will also let the surgeon know if he/she can do a full wrap or a partial wrap.
Does he see a pulmonary doctor also? Stick with us and please feel free to ask any questions you have.

Some of our members get good temporary relief from gaviscon liquid.

I am going to start a new thread for you so more members will see it.

Take care,
Bill devil
opnwhl4
Moderator: GERD/Heartburn
Nissen 6/06 and 5/09
#3 on 8/24/11

mock turtle
Regular Member


Date Joined Mar 2011
Total Posts : 467
   Posted 11/24/2011 3:01 PM (GMT -6)   
need help bad

you and your husband are not alone

many of us here have wondered during very dark times if,,, how,,, we can possibly go on

but there is hope

my reflux too was coming all the way up into my mouth an at night into my lungs

at first the docs completely mis-diagnosed me and thought i might have lung cancer...teror

by all means go forward with diagnostic tests asap

but here are two things that can be one right away to help

sleep almost upright in a slightly reclining upholstered chair and eat nothing 4 hours before bed time.

have your husband eat a morning meal that is just 4 ounces of cooked brown rice

an then wait 2 hours to see if he can keep that down

it took me almost a week of eating small small meals like that...6 of these small small meals a day before i stopped refluxing all the way to the top of my throat

i call these meals "recovery portions" or recovery meals

some of my recovery meals were two squares of tofu the size of a small matchbox..1 inch by two inch by 1/4 inch thick

some of my earliest recovery meals were 4 spears of asparagus

avoid any and all fruit, vegetables that are acidic...no vinegar saladresings condiments etc

my body never had problems with olive-oil based light mayonnaise...just use a little for flavor

another that worked for me was 4 ounces (by volume not weight) of cantaloupe Mellon

or a small (small!) turkey or chicken burger (white meat only) on one slice of gluten free bread (wheat is hard for some people to digest...he might want to try going wheat free...(gluten free)...as an experiment)
(no ketchup...tomatoes sometimes trigger reflux

do these two things...small small bland meals and sleeping in an upholstered chair (not leaning back more than 30 degrees

and i bet he will feel improvement in one week.

i know this is awful especially on loved ones...my wife suffered right along with me

im doing better now, not perfect but better...it takes time...and get those doctors to do the tests

hang in there...things will get better
mock turtle

dencha
Forum Moderator


Date Joined Feb 2009
Total Posts : 7188
   Posted 11/24/2011 8:30 PM (GMT -6)   
Hi Need Help Bad,
Sorry I haven't responded to your post all day.  We were busy with family and I didn't get on the computer. 
 
I also had severe lung issues due to reflux.  My reflux wasn't anywhere even near the severity you're describing.  It takes very little reflux to really inflame the lungs. 
 
Does your husband have any inhalers or a nebulizer for his lungs?  If he is not seeing an asthma doctor or pulmonologist, he should.  He will need all the help he can get to start clearing his lungs.  These specialists have medications that can help him with his breathing.
 
That said, if he's anything like me, even those meds will not be enough.
I know you are looking ahead and wondering what he will do if it's determined he's not a good candidate for surgery.  Don't go there yet!  The description you've given certainly leads me to believe he'll be the perfect candidate. 
 
If, once the testing is complete, your husband is deemed a good candidate for surgery, you need to be sure to find a top-notch surgeon who specializes in Nissen surgeries.  Some wonderful surgeons, who would do a great job on almost any surgery, may not be experienced enough with the Nissen procedure.  You'll want to find someone who had done many, many successful Nissens.  A rule of thumb is 300+ in a small city, and 1000+ in a large city.
 
Like your husband, I suffered with severe breathing problems due to reflux.  After waiting far too long, I finally had the surgery in February 2009.  I didn't know if the surgery would clear my lungs, but nothing else was working, so I had to try.  After 2 and a half months, my lungs finally cleared, and have been better ever since.  I just wish I'd had the surgery sooner.
 
MMM and Mock Turtle have offered you some excellent advice.  I'm glad you've joined us, and be sure to stick around.  We'll do whatever we can to help you through this rough patch.  Hang in there...things will get better.  We're here for you!
 
Take care,
Denise

bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 11/24/2011 10:52 PM (GMT -6)   
So sorry to read of your husband's difficulties.  I can certainly empathize with how awful this condition can make someone's life...
 
You described some of your husband's symptoms, but not any of the behavior and diet modifications that help, and are a patient's first course of action.  Has he done any of the "standard" things?
 
I mirror what others have already said.  But I would like to add that, since he's already going through the trouble to have a pH probe implanted (I'm assuming the Bravo wireless one), extend the test to 48 hours.  24 hours, while sufficient for a diagnosis, doesn't provide the additional comparative data that a two-day test will.  One of the reasons this could be important is because it could help the doctor zero-in on perhaps a certain time-of-day when episodes are worst, and, along with your husband's daily diary, find a trigger food or event.
 
There is no cost difference, so do the 48-hour test.
 
Best wishes.
 
-Bruce

stkitt
Elite Member


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/25/2011 10:33 AM (GMT -6)   
Need Help Bad-
Welcome to HealingWell and I am so sorry to read of your husband's illness.  I can understand why you are so worried.
 
You have received great advice from the great members here in the forum.
 
I would like to touch on his mental status................
 

Depression is one of the most common complications of chronic illness. A chronic illness can be stressful and cause a certain amount of despair or sadness that is normal.

In some cases, having a chronic illness can trigger clinically significant depression, a potentially serious but treatable illness itself. The challenge for the doctor and the patient is to decide whether symptoms of depression are just a normal reaction to the stress of having a chronic medical condition, or so intense or disabling that they require additional specific antidepressant treatment.

From reading your post I suspect that your husband would benefit from talking to his Dr. about treating the depression that he is going through. It feels to me that he has components of clinical depression and I would feel better knowing his Dr. was addressing the whole picture, not just his medical sx.

I admire you for being his best advocate and I am glad you have each other to lean on.

I hope you keep coming here as the support and caring will help you as you support your husband at this difficult time.

Blessings,

Kitt 



~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.

www.healingwell.com

"only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be"

orange17
Regular Member


Date Joined Aug 2011
Total Posts : 28
   Posted 11/25/2011 4:31 PM (GMT -6)   
Dear Need help bad:

I am truly sorry to hear of your husbands health issues. Like him I too suffered from reflux-GERD that was aspirating into my lungs and causing me to get pneumonia 3 to 4 times per year with each episode becoming worse. My primary care doctor sent me to a pulmonologist, this is important because those guys can really help with the breathing issues so if you haven't been there you need to seek that help. My pulmonologist suggested a procedure called TIF, it is someowhat new and you can search for with a simple google search, there may or may not be any surgeons in your area who are certified to do this procedure but first and foremost make sure that the surgeon has done a lot of these, I like the 200 or 300+ mark myself, if not get a surgeon who has done 300+ Nissen procedures. Do not mess around with a surgeon who is under qulified to do that procedure. I did and I am very sorry for it so take it from one who knows.
Lastly get some help for the depression, there is nothing to be ashamed of or scared of. It is so easy to get depressed with these illnesses that just do not go away and seems that no help can be found.
Sam
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