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Is my surgeon being upfront with me???

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Posted 2/9/2013 2:12 PM (GMT 0)
Hello. This is my very first post here but I am so glad that I found this site.

A little backgroung about my GERD. I suspect that I have had it for many years but was not officially diagnosed until Dec 2012 via an EGD. I have asthma. I had started coughing a lot with projectile vomiting on a daily basis. During one of those episode, I aspirated the gastric contents. That landed me in the hospital for one week. Since then, my condition has deteriorated. I've been on high dose steroids for 4 months now. I seem to have great difficulty getting off this med. Needless to say, I don't even recognize myself in the mirror. I'm now on steroids, 3 inhaler, omeprazole (tried Nexium) and zantac. I was admitted to the hospital a second time for the same things. My pulmonologist think that I would benefit from a NF.

I went to see my surgeon last week. He said the recovery would be the same as my gallbladder surgery. After reading these posts, I am thinking he could be giving me misleading information. He is a very good and well experienced surgeon. And yes, he does NP. I am fortunate that I have a desk job. I work 4 12hr shifts and then have a week off. I was planning on using that week for surgery and returning back to work. Is this feasible? I exhausted all of my sick time from the month I was off and in hospital. So, I need to work.

I will do most anything at this point. I am miserable. I can no longer sleep on pillows even. I sleep sitting upright. I constantly cough, which hurts. And I am using my home nebulizer at least 6 times a day. I'm still very fatigued and short of breath. (The doctors told me while I was in hospital that it was a bad pneumonia and would take a long while to heal.) I have gained 40# in 2 months from prednisone. I can not exercise. My pulmonologist will only allow walking indoors. I feel utterly beat up since last November. If i don't get the NP, I would most likely have to stay on steroids for the rest of my life.

So......is my surgeon right? Will I feel better in one week post surgery so that i can return to work??? I know healing takes a long time but I need to know when most of you were able to start driving, free from pain meds, etc.....

Thanks everyone.
Posted 2/9/2013 4:09 PM (GMT 0)
Welcome Cat.

NP?

You might want to ask about tapering off the prednisone before surgery. I have no experience, have only read there can be problems with infection and healing time, etc. There is lots of online information, which may or may not be accurate.

Going back to work in only a week may be optimistic. Depending on the procedure, you could be in the hospital half of that time. If your surgery is minimal you might be able to get back to work that fast, but if there's a hernia repair or other comorbidity I wouldn't count on it. At best you won't drive for a couple of weeks, usually after followup visit and getting off pain meds, or be allowed to lift anything for a couple of months minimum. From my experience, recovering from major surgery takes 3 months, although after 6 weeks you can increase a lot of activity.
Posted 2/9/2013 5:26 PM (GMT 0)
Cat-

Welcome to Healing Well.

Your incisions would be looking good at the week or 2 mark, but your insides won't be healed for another 6 weeks or so to go back full time and be able to lift anything. I was told 5lbs or less for 6 to 8 weeks with my Nissens.
Some doctors think that since it is done lap the recovery is the same for others such as gall bladder. Not so, they have to redesign your GI tract and that takes a good 6 months to a year to fully heal.
Not saying you can't work for that long, but you will have quirks to over come during the first year or so. Being able to eat enough to get good nutrition will take 4 to 8 weeks. Then there can be up and down days after that for up to a year. You have to think long haul and slow to heal completely.
If you have been reading the posts you will see the first few weeks can be rough, but with patience it is very doable and worth it if you are a good candidate for the surgery. I won't live without one, it has changed my life so much.

Take care,
Bill
Posted 2/9/2013 6:31 PM (GMT 0)
Hi Cat,

Welcome to Healing Well!  You've already gotten some great advice and information.  I agree completely.  Surgeons do not tend to tell their patients just how challenging the recovery is.  Is it because they don't know themselves?  It's possible.  Maybe they need to visit this forum!

Here is my early recovery journal:

https://www.healingwell.com/community/default.aspx?f=45&m=2183443

Like you, my lungs were HORRIBLE prior to surgery.  I had a lung infection that just wouldn't quit.  I was using my nebulizer several times a day and taking high doses of inhaled steroid.  My asthma doc and PCP made sure that I got a steroid boost at the time of surgery to help me get through it.  This is because an asleep adrenal gland can cause problems during a trauma like surgery, and if you're on high doses of steroids, it's likely to be asleep.  Mine sure was.

Be sure your surgeon knows all about your steroid load, as it may change what he does.  My internal tissue was very fragile because of it, so my surgeon added some extra sutures to ensure that it held.

I planned to go back to work half time after two weeks, but I'm a second grade teacher, and my TA and princpal (and my PCP) wouldn't let me.  My class was full of sickness.  I ended up staying home 6 weeks (during which time I was being treated for my continued lung infection.  My doc gave me Rocephen shots, so I wouldn't have to take antibiotics into my healing stomach, as my stomach is very sensitive even without surgery.).

The surgery was the best thing that I ever did.  It took two and a half months to heal my sick lungs, but after that my lungs were GREAT!  For the first time in 5 years, my lungs were healthy.

I would say this.  If it's possible to hold off some with the nebulizer prior to surgery, it would probably be good.  My asthma doc had me do that, because the longer you use it regularly, the less help it gives you.  He was concerned that after surgery it wouldn't work as well, and that I would need it even more then.  When you cough, you'll want to hold a pillow to your incisions, by the way.

If you read through my recovery journal it'll give you an idea of recovery for one person with sick lungs!

Go for it!  You'll be glad you did.  People like us don't really have a choice.  It's literally a life or death situation.

Good luck!

Denise

Posted 2/10/2013 12:02 AM (GMT 0)
Thank you everyone for the replies. I must of been very tired when I wrote my OP. The surgery I am referring to is NF, not NP. Silly girl, I am. And yes, there is a hernia repair involved, too.

I know that I will have to be loaded up on steroids prior to and after surgery simply from all the inflammation from the surgery and I have been on them for a long time.

Regarding returning to work, I am a nurse but I have strictly a desk job, telephone triage stuff. My hospital has arranged for me to utilize valet parking so that won't have to walk far. So there is no lifting. I work nights, so only one other person in office. I realize it will take a long time to heal. I truly do. Denise, your journal was very helpful. Thank you for sharing. I'm pretty tough when it comes to pain. I have a bathroom right across the hall from my office....just in case. I really need to work. Do you guys think that I can squeeze by? I usually work 2-4 12hr shifts in a row and then have a week off.
Posted 2/10/2013 3:29 AM (GMT 0)
I had my fundo on Jan 16.. I stayed in the hospital overnight and went home the next day.

I think I "could have" worked after 1 week. Certainly there was no problem sitting.. I did plenty of that watching TV, surfing the internet etc. I ended up going back to work (desk job) at 3 weeks.. I enjoyed the time off but I think for desk work, 2 weeks would be reasonable. For me, the discomfort came when eating and when moving around, standing/walking.. so for sitting, not a problem.

I have read enough forum posts to know that everyone heals differently, so if I were you I'd read other people's post-fundo experiences to see the possibilities for discomfort over the first week or 2.

Good luck with whatever you choose.
Posted 2/10/2013 3:53 AM (GMT 0)
Thank you, drtinsac. Time will tell. I just awoke after dozing by coughing followed by vomiting. Gotta love the GERD.
Posted 2/10/2013 12:46 PM (GMT 0)
I had NF on 12/4. I think I could also have done the work you are saying in 1 week, but it would not have been pleasant. I am a nurse too. I went back to my predominantly desk job at 4 weeks without too many issues. my dr. Told me as we'll that I "could" return I as little as one week, but wrote my excuse to work for 4-6 wks. I had HH too and was in hospital 2 nights. I took maybe 2-3 pain pills after coming home. I threw soup in blender and ate it after about 5 days. Getting adequate nutrition to work will be a challenge at one week. But I think if I HAD to, I could have. Can you plan your surgery for a Wednesday and then go back on a Monday to have 10 days off? The extra 3 days would help. good luck.
Posted 2/10/2013 3:36 PM (GMT 0)
Illinifan,

Thank you for that info. It was helpful, as well. Funny how those doctors think we can do anything......maybe because we are nurses. For example, when I was put on Prednisone, I kept drinking Propel Zero because I had vomiting and diarrhea on a daily basis. It wasn't until a coworker saw that before she quickly educated me on my salt intake while on prednisone.

Regarding food at work, I usually take my lunch anyway. Plus, our cafeteria staff would most likely make me anything that I needed. I work for a great organization.. And I'm quite sure, jello is very abundant there!! Lol

I also found out that one of my coworkers had a NF, so its helpful to have the support. One thing that dencha (Denise) mentioned in her recovery is that she kept one of the incisions iced, which is what I think I will do. Reading all of the posts has helped me to understand what I am facing but to also prepare for it. Extra ice packs for work, make food ahead of time, keep pillow in office to help with splinting for cough. If worst comes to worse, I can be off for a few more days but trying to avoid that. There are not many people in our office and it creates a huge hardship on staff when one of us is out.

One thing that my coworker who had the NF 10yrs ago told me was to sleep in my recliner. She said the bed will be to difficult to get up from because of the sutures up near the diaphragm. Makes sense and hope that little tip will help someone.

At this point, I am looking forward to the surgery. I am tired of vomiting. I am tired of steroids. I am tired of inhalers. I am tired of my throat hurting. And I'm tired on taking home neb treatments. All of the meds are expensive, regardless of insurance. I meet with pulmonology tomorrow. Hopefully, he will give me the green light to proceed with the surgery and then both he and my surgeon will manage me post op. Fingers crossed.
Posted 2/10/2013 3:46 PM (GMT 0)
Everyone.........one more question. My surgeon told me that I could continue to take my routine meds without difficulty. Some of these meds are extended release and/or do not come in liquid form. And I can't just "stop" them. Is this true? Can I swallow these pills? One is a tad smaller than a dime and can not be cut up, etc......
Posted 2/10/2013 3:48 PM (GMT 0)
Hi Cat,

I'm glad my journal helped.  I'll be here to answer questions and provide support throughout your recovery.  I think our problems are similar.  Did you have asthma prior to your GERD issues, or was it GERD induced asthma?

Your attitude is excellent, which is half the battle--maybe more than half.  Your plan sounds good.  Just know that it's okay to go back and if you find it's too much, take a little more time.  Before my surgery I spoke to someone who was a dental hygenist.  She went back after one week, which is kind of amazing to me even now. A dental hygenist is on her feet nearly all day!  I still don't know how she did it.

Just remember that if you surrender to your recovery and follow its lead, you will find the recovery much easier.  Your body will take its own sweet time to recover, but recover it will. 

Good luck!

Denise

Posted 2/10/2013 4:07 PM (GMT 0)
Good morning, Denise.

I have had asthma since I was a little girl. I am 51 now. I rarely had to ever use an inhaler, so my asthma was very well controlled. I only had problems with it if I had the flu or pneumonia, for which I always took my vaccines.

I have had GERD for many years. I just did not think that it could become such a serious problem......until I aspirated. I remember that day. If you have ever aspirated, you can feel it when it happens. I kept telling the doctors that I felt like I aspirated. They would just give me a zpak and steroids. I would get better for a week and then relapse. Well, that's because aspiration pneumonia has to be treated very differently than pneumonia. Its been a huge learning curve for me. My background is emergency nursing, not GI issues. And judging from my coworkers reactions, they did not make the connection between GERD and asthma, either. Ever since I aspirated, my lungs have just become worse. I still have GERD and it burns so bad and such an unpleasant taste. I'm really, really hoping that the NF helps. My bedroom looks like a nursing home. Also, your tip on trying not to use the nebulizer as much was a good one. I'm tapered down to 20mg now, which is when I usually have breathing problems. My taper from 20mg will be by 5mg every week since I have failed previous attempts. Seriously, I look like the nutty professor. All of this is new to me so I am very, very thankful for finding this forum. Going thru all of this can be so discouraging but this forum provides much hope.
Posted 2/10/2013 5:22 PM (GMT 0)
Hi Cat,

Hang in there.  The surgery will definitely help your lungs...just don't expect it to be the next day...it takes time for your poor lungs to recover.  If you have GERD, you're likely to have disturbed your lungs more than just that one time you realized it.  Silent GERD can create small amounts of reflux that can get into your airway and just keep them inflamed enough to cause problems. 

So you're using your neblizer for steroid inhalation?  Then I misunderstood you.  I did not decrease my steroid inhalers (which are delivered through normal aerosol inhalers.)  I used Xopenex via nebulizer to open my lungs and keep me breathing.  Be sure to discuss any reduction of steroids with your doc.

I don't know if your use of steroids has been high for a long time, but I suffered adrenal insufficieny as a result, so I needed a boost during surgery.  Here's a link:

https://www.mja.com.au/journal/2008/188/7/management-adrenal-insufficiency-during-stress-medical-illness-and-surgery

It might be worth getting a cortisol test via bloodwork.

Also, be sure your anesthesiologist knows about your lung issues.  They can include a bronchodialator in the meds you breathe during surgery.  A good friend is a nurse anesthetist, and he told me that even people with severe asthma can be anesthetized very successfully with the new meds that they use.

Take care,

Denise

Posted 2/10/2013 5:26 PM (GMT 0)
Hi Cat,

Just saw your question.  Are any of your pills capsules?  Those can be opened and mixed with applesauce.  Can you get smaller dose versions of tablets and take two or three instead of one large one?  Do any come in a suspension form?  There are usually ways around all this.

I still can't take large pills, but I've found substitutions or take smaller versions.  Some here never have any trouble taking pills at all.  It's variable between people. 

Take care,
Denise

Posted 2/10/2013 7:01 PM (GMT 0)
Dencha,

I use two steroid inhalers, one rescue inhaler and an Albuterol nebulizer machine as needed, which is a lot. My wheezing no longer responds to a rescue inhaler. And yes, you're right, my pulmonologist says that every time I'm coughing, I'm inhaling micro contents from GERD, causing more of the inflammatory process. (Which has been why its so hard for me to wean off prednisone). I now have a horrible, painful cough. I hope I'm not coming down with something. Don't need that.

My meds are all pills, except the omeprazole. I think there is one of them that is not available in liquid form and its extended release. I will touch base with my PCP to inquire. I figure that it is best to be proactive in everything before the surgery. This forum is helping me to do just that.
Posted 2/11/2013 1:19 AM (GMT 0)
Cat,

It's a great idea to talk to your PCP about meds.  Mine was very helpful getting me meds I could take.  I wouldn't worry about weaning off your steroids now.  There's time for that after your surgery.  I was very concerned that the steroids would interfere with healing, but it really didn't.  My surgeon was very reasuring.  He wasn't the least bit worried about it.

It's too risky for you to try to step off the steroids until you get the reflux under control.  I was taking up to 4 puffs flovent 220mcg twice a day, along with Serevent, nebulizer several times a day, Singulair, and of course Albuterol as needed.  I was also on oral steroids when I had the surgery and afterwards...gradually weaning off them.  Now I do just fine with 115/21 Advair two puffs twice a day.  (I do have allergy induced asthma that I'm still working on, but I'm 100% better.)  The surgery worked wonders.

Glad you've joined the forum!  It's a great place to be before and after surgery.

Take care,

Denise

Posted 2/11/2013 1:49 AM (GMT 0)
Dencha,

I have been on all of those meds but have been on Prednisone 120mg to 80mg since beginning of November. Every time docs tried to wean off, I had severe breathing problems. Which is why we are tapering a week at a time by only 5mg. Also, you mentioned anesthesiologist. I had the best anesthesiologist for my gallbladder and plan on requesting him. He really monitored my resp problems.He even kept my inhalers on his person and as soon as I rolled into recovery, he asked the nurses to get a duoneb on me before anything.

I am so worried now. I'm glad you responded. You mentioned that you had a lung infection before and after surgery. Well, I have been mentioning that for the past few days, I've had a wet cough but couldn't bring anything up. We are immunocompromised with prednisone. I just started coughing up green phlegm. This is not a good sign. No wonder I have felt fatigued. I had even mentioned that it felt like I had pneumonia again. I'm thankful that I have an appointment with my pulmonologist in the morning. However, I'm thinking that he will say no to the surgery until this lung situation gets under control. If you don't mind me asking, what kind of lung infection did you have? Jeez, I hope that I'm utterly and completely wrong about this.
Posted 2/11/2013 2:39 AM (GMT 0)
Hi Cat,

I had exactly the same fear.  My lungs were in horrible shape and I was coughing up lots of green gunk.  I was really scared they wouldn't let me have the surgery.  This is the thing.  With people like us, there's no way to get our lungs clear unless we HAVE the surgery.  My docs all concurred that we needed to go forward with the sugery regardless.  If I'd had a fever, I think it would have been enough to stop the surgery, but as long as you can stay fever-free, odds are they'll let you go forward with the surgery. 

The coughing after surgery will create more pain for you, but even with that, I switched to liquid Tylenol after just a day or 2.  I think I used the narcotic meds at night a little longer, though, as pain seems to be mre noticable then.  You'll want to use the ice on that left rib incision.  It hurt for probably 2 weeks, and then got better.

Be sure to get on an antibiotic for those lungs.  You'll want to be protected as much as possible. Maybe your docs will have a different opinion, but ask them...when will you ever have healthy lungs unless you go forward with the surgery?

Hang in there.  It'll happen!   My lungs were so bad after the surgery my doc had me come into the office for Rocephin shots, as he didn't want me to have to take an antibiotic with my sensitive stomach still healing.  As I said, it took two and a half months to get them healed, and that was in the middle of May--a bad pollen season.  Even then they were great!

Good luck!  Feel better...

Denise

Posted 2/11/2013 2:51 AM (GMT 0)
Denise,

Thank you so much for reassuring me. I see my doctor at 9 tomorrow morning. I will keep you posted as to what he says.

Tammy
Posted 2/11/2013 2:55 AM (GMT 0)
I was worried about pills too, but was able to swallow pills the day after surgery, so was not an issue. I took a sip of water first so throat was wet and simply swallowed the pill. no problem.
Posted 2/11/2013 9:11 AM (GMT 0)
Ah, thank you, IllinFan. I was worried because I seriously think one of them only comes in tablet form and is extended release. Out of curiosity, was your throat a little sore first week? My surgeon said my throat will be sore (not from ET tube for surgery).
Posted 2/11/2013 6:30 PM (GMT 0)
Not anything significant.
Posted 2/11/2013 8:39 PM (GMT 0)
Hello all.

I saw my pulmonologist today. He wants me to see a different surgeon, and I agree. So, I still need to have that Ph test thing......a wire down my nose.......sounds ghastly and I want to refuse. My pulmonologist thinks my NF will Bo over a month from now. He also wants it done at the larger of our hospitals so that he can get me off the vent as quick as possible. I will be on prednisone for at least another month, making it almost 5 months of being on it. I have been cleared to walk a bit more inside, so I will do that at work. I can not clean my home because of dust. That's good news....my husband can do that. The surgeon that i will be seeing trains other surgeons with Nissen's and other laprascopic procedures. I think I am in good hands......although that thing down my nose I is concerning. I want to refuse it.
Posted 2/11/2013 9:20 PM (GMT 0)
The pH test isn't pleasant, but not as bad as manometry. The only thing manometry has in its favor is that it takes significantly less time. I just had both tests done last Monday. I wasn't looking forward to either one, but knew that I had to follow through with both of them to get to a solution.

Prep for the pH test involved swallowing this cherry flavored foam substance to numb my throat and having liquid shot up one nostril to numb that as well. The nurse then had the wire up my nose and down my throat before I even knew what was happening.

I have a strong gag reflex, so the wire made me gag occasionally throughout the day. Eating wasn't really fun, but had to be done so the results would be accurate. And my nose ran like crazy on the side with the wire. I thought I would be able to sleep through a lot of this unpleasantness, but the instructions say that unless you nap on a usual day, don't nap while being tested.

I wasn't late for my appointment to have the wire removed the next day. The nurse said that in 14 years, she's only had one patient be late for the removal. Removal is very fast. It took about 2 minutes.
Posted 2/11/2013 10:49 PM (GMT 0)
KitKat880,

Thanks for that info. I guess being a nurse myself always reminds me of what its like to have something shoved up a persons nose. It's not pleasant at all. Who put the wire in? The surgeons office or GI? The pulmonologist thinks my surgeon will. Either way is fine with me......I guess. But I'm still going to plead for it not to be done. mad
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