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5 weeks post Nissen still having a lot of breathing issues

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Posted 3/30/2009 11:30 PM (GMT 0)
It will be five weeks on Wednesday that I had my Nissen surgery.  I still am having a lot of breathing issues.  Chest tightness, shortness of breath, cough.  I was told it could take a few months to see results on breathing.  Is there anyone who it took that long and they did see improvement?  I had this surgery hoping it would be the answer after suffering for two years. I keep on trying to stay positive, but it is hard when you have trouble breathing.  If anyone can help, it would be apreciated.

Thanks,

Wendi

Posted 3/31/2009 12:17 AM (GMT 0)
Hi Wendi! I was wondering how you were doing. I totally understand your frustration. I ended up getting ten shots (where the sun don't shine) of rocephin for the lung infection that I was fighting. The amoxicillin didn't work...it was resistant. I couldn't take any other antibiotic by mouth (Every one I've tried has caused me to have gastritis BADLY, and when I had reflux, it refluxed into my esophagus and kick up my asthma.)

Anyway, the rocephin worked, but the area where the infection was, had asthma pretty badly. Tight, wheeze, mucous...asthma in that area--but not the rest of my lungs. Just that area.

So I kept trying to deal with it with just albuterol, serevent, and flovent. I was trying to avoid the nebulizer, since I lived with that for over a year--nebulizing at least twice a day. Most of my lungs were fine, but I kept coughing and coughing--constantly. Feeling tight. It was so frustrating. I totally know how you're feeling.

Finally, Friday, I just gave up and decided to use the nebulizer (with xopenex). That was the best decision I ever made. Over the weekend I nebulized three times a day, and my lungs cleared up tremendously.

For hours between nebulizing, my lungs felt great. The wheeze went away, the coughing stopped...day and night. (For hours longer than the nebulizing meds would work...it was more long lasting.)

I think the nebulizer allowed the serevent and flovent to finally get into the problem areas. What a difference. I am hardly coughing at all now.
So...although I'm nebulizing twice a day, it's well worth it. I believe it's really helping my lungs improve, now that the other inhaled meds can get where they need to go.

If you're struggling that much, Wendi, you need to get to an asthma doc, or whoever you see, and get some meds. It's exhausting to keep coughing and coughing, and you can't help but worry about its effect on the wrap/hernia repair.

I can only tell you that, although I'd rather not have to take any meds for my athma, the protocol I'm following now has really changed my post nissen life! Hopefully the meds will heal the area that is inflamed, and my lungs will improve to the point where I'm not needing to nebulize. (Just two times a day today...I was back at school, but I still did well all day...hardly any coughing at all.)

So...that's what I'd advise...get to a doctor who can evaluate your lungs, and prescribe the things you need to get feeling better.

Now I know your lungs are giving you fits, but how is your wrap/stomach and eating going? If I remember right, you'll be going back to school after six weeks, and that's getting close! I started today...just did running records for reading levels, and my sub stayed in the classroom. Tomorrow I'll be back in the classroom in full swing. It'll be interesting! It feels good to be back.

I'm glad you posted. I was wondering how you were doing. I hope you can get some relief for your lung problems. I'm not saying I'm cured, but it's day and night. keep in touch, Wendi!
Get feeling better. I definitely know how you're feeling!
Denise
Posted 3/31/2009 1:09 AM (GMT 0)
Wendi,

Denise sure has some great feedback. I don't have any experience with the surgery, but my LPR does stir up shortness of breath a lot, so I understand the difficulty in staying positive.

Just wanted to let you know that I understand how that affects your moods, even though I can't offer any more than that.

percycat
Posted 3/31/2009 12:41 PM (GMT 0)

Denise,

Thanks for writing back.  I am glad things are going well for you.  I did go to the ashma Dr. and he said he wanted to try me on Advair again after I get back from vacation.  I am going to New Mexico to see my son and his family over Easter.  He was afraid to put me on something that may have a bad effect.  I am getting frustrated with the Dr.s.  They don't seem to understand how hard it is to not be able to breath.  Not once have they told me to use a nebulizer.  I have made an appointment for early June for a a new Pulmonologist.  I am hoping to get some questions answered about my lungs.  My allergist said I do have ashma, but it may be something along with it.  Well I would like to know what that something iis.  I am only 46 and feel I am constantly worried about being able to breath.  I keep telling myself to "Let go, let God." but it gets scary.  Two years ago I didn't have problems like these.  I would just like to feel somewhat normal again.  I will try to keep you updated.

As far as the wrap goes.  It is going well.  Sometimes I feel my breathing is worse though. 

Do you know anyone who has tried Xolair injections?  My allergist had wanted me to try this.  I am a little leary of the side effects.  I am a cancer survivor and there is a possiblity it can cause cancer so that scares me.  I looked it up though and there are a lot of success stories. 

Take Care,  Wendi

                                                                                                                                                                                                 

              

Posted 4/1/2009 1:23 AM (GMT 0)
Hi Wendi,
Do you have a nebulizer? Would you ask your asthma doc if you could at least try a script for xopenex to see if it relieves you at all? It would be worth a try. It would be nice to know if it would give you some immediate relief. Waiting for Advir and waiting until June to see another doc, doesn't solve your problem now. I know how frustrated you feel.

I also have felt that I could deal with the surgical recovery so easily if I didn't have lung problems. I'm not saying my lungs are cured...they are definitely much better than they were pre-surgery, but they still have a way to go. (Obviously, if I'm back on the nebulizer.) At least I can breathe freely, and I'm not wheezing and coughing all the time.

My asthma doctor was recommending Xolair for me as well. He even gave me a script for the bloodwork required. I also had the same worry about cancer. I asked my family doctor to look into it for me, and his response after researching it, was to go the route of the fundo first, and if that didn't work, the Xolair would be something I might want to try.

My allergies last spring were the worst in my entire life. I take allergy shots (have for years and years), and they didn't do anything for me. I had to stay indoors with windows shut (no air conditioning) from April through June. I hope it's not going to be like that this year. Obviously Xolair would be a possibility for me, if my allergies remain that bad from now on. I have heard that climate change has made the pollen much worse.

I'm so sorry I can't help you with your breathing problems. I'm frustrated for you!
If you feel comfortable, maybe you can push your asthma doc about trying the neb.
I just hope you get feeling better soon.
Glad the wrap is feeling better.
I'm thinking of you, Wendi.
Have a great time visiting your son and his family!
Denise
Posted 4/1/2009 2:31 AM (GMT 0)
Denise,

I had another horrible day today.  Went to my regular MD.  Told her how frustrated I was.  She did a Spirometer on me, gave me symbicort and did the Spirometer again.  I only improved by 2 percent.  I am hoping this isn't something more then ashma.  She did give me a script for a portable nebulizer and told me I could use it.  I will be using Albuterol but will let her know about xopenex.  She also wants me to get back to a Pulmonologist to diagnose me.  She said it seems like it could be bronchitis or emphysema but it is not showing up that way.  My pulmonologist I went to at University of Michigan just said I had mild obstruction.

I had the blood test for Xolair and it did show my level was somewhat high.  If you get more information, let me know.  If it would take care of this, it would almost be worth the risk.  I read a lot of positive feedback from people online.

Thanks Denise for being such a great supporter.  It makes the road much easier when it is not traveled alone.

I will keep you in my prayers.

Wendi

Posted 4/1/2009 2:41 AM (GMT 0)
I'm so glad you found a doctor that listened to you. I've used albuterol in the nebulizer...my asthma doc/family doc both feel that xopenex is more effective, with fewer side effects (shaking, etc.) If you haven't taken albuterol for a while, you can expect to have the shakes badly at first, but it will go away once your body gets used to it.

I'll look forward to hearing if it helps. Hopefully!

My asthma doctor gave me a video to watch about the xolair, but the same video is online. Do you have severe allergies that aren't responding to traditional treatment? The xolair is really about stopping histamine from being produced. If your allergies are really, really bad, then maybe that's a good option.

The pulmonologist should give you some answers. My husband is always after me to go see a pulmonologist, but so far I've stuck with my asthma doc.

Let me know how things go. Are you still planning on going back to school soon?
Take care and breathe easier!
Off to bed...I am back at school, and need my rest!
Denise
Posted 4/1/2009 12:39 PM (GMT 0)

So far the symbicort and albuterol inhaler have made things a little better.  Will try the nebulizer today.

I did watch the video on xolair.  I had the blood test that showed my allergen level somewhat high.  I am just desperate to stop coughing and feel better.  Do you do spirometers at your ashma Dr?  Do you numbers improve a lot with meds?  I know my did in the past but not lately.  It is so discouraging.

How is it to be back at school?  I forgot to ask.  Hope it is going well.  It is probably wipes you out. 

Talk to you soon, Wendi

Posted 4/1/2009 6:06 PM (GMT 0)

Wendi

 

Sorry to hear you are having so many problems..........please know

I have you in my prayers.

 

Kitt

 

Posted 4/1/2009 9:10 PM (GMT 0)
I hope the nebulizer really helps. Glad to hear the other meds are helping some. No, when I do the spirometry, it doesn't change much when I take the two puffs of albuterol and wait ten minutes. I don't change much at all from visit to visit.

I have FIERCE allergies. Mostly pollen, thankfully. Last year the tree pollen KILLED me. I was housebound, and in school (no air conditioning) I had to keep the windows all CLOSED from April through the end of school. Fans were our only relief. I sure hope I'm not that bad this year. THAT condition would bring me to eventually trying xolair. I can't spend my life indoors. The fall allergies weren't as bad for me.

Actually, when I see my allergy/asthma doc in April, I'll ask him about my spirometry results, and see what he says. I'm sure he'll want to see if I'm any better post nissen. I still can't kick the infection wheeze.

Back at school is great. I'm so glad to be working with the kids again. They're a huge challenge, but I love it. Unfortunately, my herniated disk has decided to start acting up. I'm going to try sleeping without the wedge tonight. I've kept it, because I didn't want to put additional pressure on the wrap.
Hopefully I'll get it back in shape with exercises and extensions.

You hang in there, Wendy. FYI, my asthma doctor taught me a different way to do the nebulizer that is more effective. You have to turn the nebulizer on and off...breathe in...hold it, breathe out--instead of just breathing in and out normally. It gets to the source a lot better, and opens things up.
Can't wait to hear if you get any relief. I hope so!
Posted 4/2/2009 1:34 AM (GMT 0)
I didn't do the nebulizer yet.  I was so sore all day from the tight cough yesterday.  Short of breath a lot but not quite as much trouble breathing.  I have been so down about all of this.  You sure help me along.  I feel like I am falling apart at 46 years old.  There are so many things I want to do yet. 
I do have allergies and sometimes wonder if the allergy shots are helping at all.  It has been a year and a half taking them now and I don't see much difference.  I am trying to continue walking to hopefully strengthen my lungs. 
I was really looking forward to going back to work next week.  I  try not to worry about it.  I just would do anything to feel normal.  I am going to see my grandson over Easter and hope I feel good in New Mexico.  It is very dry there. 
Thanks for being my support.  I am sorry if I have sounded down lately.  It just can be very depressing at times.    You have been so nice to put up with me.  I really am not the negative person I seem.  It's just enough is enough. 
Thanks again,
                     Wendi smilewinkgrin
Posted 4/3/2009 10:15 AM (GMT 0)
Hi Wendi,
Sorry I didn't get to post last night. School work is crashing in on me. I do a weekly newsletter with lots of pictures, and it usually takes me several hours to put it together. I try to do a little each night, but didn't get to it this week. We've got report cards due on Monday, and I haven't even started them, so my weekend will be work work work.

I definitely know how you feel about your lungs. People who don't suffer from lung problems don't appreciate how it totally affects your life. Believe me, mine aren't great. Right now, they've actually taken a bit of a dive.

We had a beautiful day today, and because of that, the tree pollen started. It caught me unaware. I had my window at school wide open. By lunchtime, my sinuses were clogged, my eyes were gooey, and my asthma was worse. I've taken shots for 20 years--most of those every 2 weeks. Talk about wondering why I bother. I think they help some, but definitely aren't enough for my worst allergies. I think they might need to be adjusted. I believe my allergy to tree pollen has increased. I've heard that the pollen is worse because of global warming--pollen on steroids. Have your allergies been worse the past two years?

You don't have to apologize for being "down". It's natural to feel that way. The only problem is that being down makes everything much worse. See if you can use your skillz think positive thoughts. It's a huge challenge. When you don't feel well it tends to take over your being. Being short of breath is overwhelming...it's hard to forget about it!

But if you can stay as positive as possible, it will really help you feel better. Try to keep your mind busy and off your lungs. (I know, you need to breathe, and it's hard to ignore feeling like you're not getting enough oxygen. Been there, done that.)

I'm so, so frustrated about my allergies. I've got TONS of mucous in my sinuses, which triggers more mucous in my lungs. I'm sure the coughing isn't good for our hernia repairs. Oh well, you've got to do what you've go to do. It think my allergy serum might need adjusting. Apparently I've become more allergic to trees.

Well, got to get ready for school. Are your lung problems going to keep you out longer? I hope the nebulizer helps you.
Feel better! Breathe easier! I'll be thinking of you.
Denise
Posted 4/3/2009 12:16 PM (GMT 0)
Denise,

Thanks for responding.  I am sorry you are having allergy issues.  I felt horrible today.  I have no appetite, my head feels foggy and my eyes feel blurry.  I was put on symbicort and I am wondering if that is making things worse.  I go back to school next week and am hoping I feel better.  I also am leaving to see my son next Friday.  I am starting to believe I felt better before my Nissen.  My chest is killing me from the difficult breathing and coughing.  I made an appointment with my old Pulmonologist and can't get in for two months.  I am so worried this is COPD.  I try to be positive but it is very, very hard.  I was able to get in with the allergist today so hopefully they can help me.

I will keep you in my prayers.

Take Care,

                Wendi

Posted 4/3/2009 12:46 PM (GMT 0)

 Hi ..I just wanted to say that I am thinking of you and praying for you Crypt. Be strong...I know what you mean about letting go and letting God. I feel like I struggle with things too , though I follow God's word. He is with you through all this. I find that when I sit quietly and wait for Him he comes to me. I pray your lungs can be healed and you can be healthy again. I can't have the surgery but I do have trouble breathing sometimes and I do the neb machine. I was glad to hear from Dencha that there is a new neb medicine that won't make me shake !! I need to get a prescription. Have a good day today. Try to get into a doc before you go or at least try the neb machine. I hope your Easter weekend is very nice. God bless 

Posted 4/3/2009 1:09 PM (GMT 0)
Oakley,

Thanks so much for the encouragement.  It is so hard to keep your head up when you feel like something is seriously wrong.  I try to have faith.   I do try to keep on track of following Gods word.  I know he is there for me.  It's just hard to see him sometimes.  I continue to pray for healing and I know he will work in his time, not mine. 

Thanks again and God Bless!!

Posted 4/4/2009 2:58 AM (GMT 0)
Hi Wendi,
Did you get in to your allergist? I feel so badly that you're having so much trouble with your breathing. Did you try the nebulizer? It doesn't sound like it has helped you much. You sound like you've had it with all these breathing problems, and I understand how you feel.

It is so annoying when you need to get into a doctor (pulmonologist) and you have to wait two months to see him. Did you try getting your GP/Family doc to make a referral and try to get you in sooner?

Try to use your faith to keep your mind from projecting terrible outcomes. Stay in the positive. It might be good for you to get back to school--cough or not. It'll feel good to be back in the world your work friends, and the kids. Time will fly by once you get back in the swing!
Hang in there!
Breathe easy.
Denise
Posted 4/4/2009 4:45 AM (GMT 0)

Denise,

I did see the allergist today.  I let him know exactly how I am feeling.  He said that my breathing problems are worse then the Spirometer shows.  That it must be something more then ashma.  How does he know how my chest and lungs feel?  He said it must be anxiety since it is not heart or other lung issues.  I was so upset with this man.  Anxiety doesn't cause your lungs to hurt for days.  I get so tired of that with men Dr.s.  He told me that most people don't have trouble with steroid inhalers.  I felt terrible from the symbicort.  He did lower the dose to 1 puff twice daily.  I will see how I feel with that.  I didn't take it this morning and had a much better afternoon.  He added benedryl and gave me prednisone to take on my trip.  I just keep praying it gets better each day.

You sure are a great online friend.  I really appreciate your kindness and support.  I feel like you can really relate to what I am going through.

It will be great to get back to work and see the kids.  I work with great staff at my school, who I look forward to seeing.

How are you doing?  I am glad you are enjoying being back with the kids.  They are lucky to have you as a teacher.

Take Care and thanks again, Wendi

Posted 4/4/2009 7:14 PM (GMT 0)
Hi Wendi,
I'm happy to be an online friend! We both know how frustrating lung problems are. Lungs take FOREVER to hear, and it's not something you can rush. Obviously, your symptoms are real. You've been through a lot.

I don't know if you're ready for this or not, but knowing that you have a strong faith, and are looking to that faith to get through your hard times, I want to share something that has helped me. I know it is not a medical issue, so it doesn't necessarily fit here, but I'll share it anyway.

Before I had the Nissen, I found a wonderful resource. Keep in mind that I've always been drawn to self-help, self reflection, so I was ready to receive what this resource had to offer. I had heard on a podcast, and knew that Oprah had put on a series about it:
The Power of Now, by Eckhart Tolle. It is a spiritual enlightenment book.

I didn't get the book...I knew it would be too deep, and I wouldn't get through it. After finding him on YouTube, I knew that he was someone I could listen to. I bought the CD set, and have listened to it A LOT since then. It's not something you listen to once and you're done.

Before surgery I was making great progress with it. The surgery and my lung and stomach problems have made it more difficult, but I still find a lot of guidance and help in dealing with my day to day problems and physical challenges.

I only offer it as something that has REALLY helped me, and still does--daily. Right now I'm working to surrender to the fact that I have lung issues, I'm, recovering from surgery, and my allergies are unbearable. It is what it is. Fighting it doesn't make it any easier.

He talks about leaving the past and future to itself and surrendering to the now.
You can check some of his stuff out on You Tube, and see if it's something interesting to you. I can't recommend it enough, but as I said, you have to be ready for it. It seems like you're suffering enough, that even if you're not "ready" it could help you get ready!

Check out some of the audio/video at http://www.youtube.com/watch?v=MPJUPqmYL7w,
and see if it looks/sounds like something that could fit with your outlook on life.

I won't have my feelings hurt at all if it's not your bag! It is something that lots of people wouldn't find interesting, but I can tell you that it helps me tremendously. (It helped my son get through a difficult break-up, and he certainly wasn't one to be reading self-help books)

I just offer it as a possible tool for you to use until you get these things resolved. It is very spiritual, and incorporates some spiritual readings, which he interprets in terms of enlightenment and the power of living in the NOW.

I thought I should share the thing that has had a powerful and positive effect on my life experience. I'm working hard on it every day!
Keep in touch and hang in there.
Hope you're breathing easier today.
Denise
Posted 4/5/2009 4:27 PM (GMT 0)
Denise,

Thank you so much fo the information on Eckhart Tolle.  It sounds like his books an audio tapes have been very helpful to a lot of people.  I appreciate you thinking of me.  I know I need to change my way of thinking.  I need to read the bible and I need to trust God.  I keep forgetting that Jesus is my guide and will take care of me.  I guess we are all pulled in by negative thoughts.  I did  listen to Eckhart on youtube.  On the one 10 minute audio he made a lot of sense.  I am a true Christian and just had trouble with some of his view on Jesus that I read.  Maybe I am not looking far enough.  I will definitely consider purchasing the book or audio tapes. 

When I opened your e-mail last night I was very touched by you being so thoughful.  I really feel there is a connection through God.  You have helped me so much during these difficult times for me.  I really appreciate all you have done.  You are a very possitive woman.  I am going to work on that.  There are good things in my life I just have to open my eyes to them.  You are so right about worrying not changing things.  That is one of my biggest downfalls. 

Thanks again for sharing the infomation on Eckhart Tolle.

Have a great weekend!!

Posted 4/6/2009 1:02 AM (GMT 0)
Hi Wendi,
I sent you to YouTube, because I know that we are all very different, and not everyone is ready for Eckhart Tolle's way of describing spirituality. I find that it brings me closer to spiritual understanding, rather than pulling me away from faith.

It is pretty deep, and does challenge the way we habitually think. I just offered it because I wanted to share with you what has really helped me keep a positive outlook during difficult times. If your faith and religious beliefs can do that for you, that will be just as good! The main thing is to find a path to serenity.

You've been through a lot, and it's human nature to want to struggle against problems. Often, though, surrender is what we need to find relief. I have had a lot of trouble surrendering to my lungs and stomach issues, and it has kept me from experiencing the "Now" that I did before surgery. I'm working on it, and having some success at this point.

It is what it is. My lungs are giving me trouble. My stomach is healing, and that will take time. My allergies in spring are terrible. What good does it do to fight against that? It is what it is.

Hopefully, you'll get feeling better soon. Until then, if you can just accept your situation, it will make it easier. Frustration, struggling against your situation, anger, etc. will only make your life more difficult as you try to get to the bottom of the problem. If you can relax into your faith, and trust that things will work out, it will make your wait so much better.

Are you going to school tomorrow? You'll love getting back with your colleagues and kids!
I've got to go get things together and get ready for bed. Morning comes so early!
Hope you're breathing easier.
Talk to you soon.
Denise
Posted 4/6/2009 2:39 AM (GMT 0)
Hi, Wendy!

I'm sorry that you're still struggling so with your breathing issues. May you get to feeling much better soon!

percycat
Posted 4/6/2009 10:03 AM (GMT 0)
Hi Wendi,
Just sitting here doing my neb treatment and thinking of you. My lungs are still fighting the allergic reaction to tree pollen. I don't know about you, but once they get going, it takes forever to calm them down. I hope you're breathing easier this morning. I guess I'll be looking forward to staying inside with windows closed from April through June. Fun, fun, fun--especially minus air conditioning! On well. It is what it is!

Have you tried drinking hot tea? I learned about that at an asthma class I took. The doctor who ran the class, said that hot tea helps open up the lungs. It usually helps me a lot. Just a thought.
Hope you're feeling better, and breathing easier.
Off to get ready for school.
Denise
Posted 4/6/2009 12:22 PM (GMT 0)

Hi Wendi,

This is Kitt and I have been following your thread closely.  I am so glad you have received so much support and I hope your breathing improves.  It is very common to feel down and depressed when you have a nasty illness flairing so please know that you are human and let your feelings out here without feeling you ever need to apologize.

We are here for you.  ((((((((((((((((((Wendi)))))))))))))))

Peace,

Kitt

Posted 4/7/2009 1:46 PM (GMT 0)
Denise,
I am having a terrible time still. I am feeling worse then before the surgery. I have been extemely short of breath with chest tightness. A lot of nausea and coughing too. Back to the Dr. today. I used the nebulizer this morning and it didn't seem to do a whole lot. I feel like I don't feel I am getting anywhere with all these Drs. I go back to work tomorrow. Hopefully I will improve. We got snow here the last couple days. I am sure that doesn't help.
Hope all is well with you.
Posted 4/7/2009 1:49 PM (GMT 0)
Kitt,
Thanks so much for your support and everyone elses. This has been a great thing for me. I have met a lot of caring individuals and am very thankfu. How is your sister? I will continue to keep her in my prayers. What is her name?
God Bless,
Wendi
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