Deb's Nissen Recovery Journal (2/28/14 Surgery)

Well ended up bAck in local hospital. Face continued to swell and chest got tight. Was having trouble articulating some words. Was having anaphylactic reaction to the CT contrast dye. Today some swelling but not nearly as bad. Suppose to now use Epi pen and call an ambulance if I continue to swell. Stupid resident should have given me steroids like I asked. I'm on them now. Thankfully abdominal pain mild. Not sure if it's b/c the morphine finally got the pain under control enough to stop the cycle or no food( and almost no liquids) for almost 2 days helped.

Regardless I'm fed up and want off this roller coaster. By the time I got to hospital last night, I just wanted to cry. Didn't help 2 beds over, someone crashed. Please let some good luck find me. I'm tired of complaining and tired of feeling like crap. I want to go out and enjoy the sun but the Bendryl will knock me out again today. Everyone has to be having more fun than me right now. Guess once I piece my recovery together in a shortened version, it will be unique and one to not follow.

Post Edited (Wendy Workout) : 3/23/2014 7:45:29 PM (GMT-6)

Hi Denise,

Yes the resident was working with my surgeon. She will turn out to have a horrible view if patients and treat them similar. I hope my situation ( even if she doesn't see the end results) stays with her, although she doesn't know the whole story. Couple that with future experiences and hopefully she takes a better path.

Yes my surgeon has completely dropped the ball. Denies it's surgery related and then says go see your GP. I did that and my GP was very concerned. He's the one who sent me to hospital by the following evening. I didn't decide on my own. Now surgeon says it's gas. I was pissed and he knows it. I told his resident I didn't believe her. She didn't like that. You can tell she's his puppy with little experience. I don't care that my stomach was full of gas. It has been since surgery. I've had horrible gas so why would it take 2 weeks for the pain to change. I can tell gas pains from this newer pain. They treated me like I was stupid. She says it's gas on top of surgical pain. I barely even have surgical pain.

My husband made a comment at my check up that he's definitely a surgeon. Didn't want to chat, didn't want to discuss any of my questions. Just wants to cut! He's proven himself right. I really wasn't happy to see him yesterday morning at all and even more livid he cancelled the tests ordered. I want to go back to the ER doc and thank him. He actually was proactive. His 2 main conerns he said was to get my pain under control ( he could tell just looking at me I was wearing down) and next to rule out anything dangerous. Then go from there. I'd take the allergic reaction again to see him instead ( I think. Lol). Without him I'd still be wondering what's wrong.

Surgeon put me back on thin fluids, Domperidone, rinse mouth before everything I swallow to get rid of my saliva and not swallow it, and warm drinks before anything I drink/consume. I get to see him Thurs. I'm dreading it to be honest. He's not going to listen to me.

Today better with pain and way more control. Don't even need Advil. I can feel it increasing but mild. Told my husband that maybe no intake for a couple days and only Iv therapy coupled with pain control may have calmed my organs finally. Had no sleep in hospital at all. Not sure why. Slept a lot yesterday and today with the Benadryl. Not a restful sleep but feel a 1000 times better. I'll go back to my GP when things are good. Hopefully if this is gallbladder pain ( which I'm 99% sure it is), it will settle and need nothing further.

A GI doc might be the way to go later too. Definitely don't want to continue with my surgeon. Hope I never have an issue again requiring repair, etc. I feel like my experience should be in a book. How is all this possible. Hope no one has to go through this although Bill's experience was pretty atrocious. Thanks Denise. Today I can smile! Yesterday I just wanted to cry.

Post Edited (Wendy Workout) : 3/23/2014 7:48:31 PM (GMT-6)

I took half a sleeping pill the 2nd and 3rd night after surgery. I know the first night was mainly pain control that kept sleep from me. It's definitely hard to sleep in hospitals, which doesn't help you heal. I vote for not going there at all if you can help it.

I didn't take another Benadryl today. Swelling stayed ok. Will take 50 mg tonight. That'll knock me out. Hoping for some strength tomorrow. My husband said I'm fading away. Poor guy has taken on Cinderellas role. Trying to arrange to have my 18 yr old niece and 15 yr old nephew over wed afternoon til Thursday evening to help me with the kids. My husband works long hours those days. My Dad wants to come help me tomorrow. Friends offering to do anything and everything. I have a really hard time asking. If they insist I may accept food/ meals or main dish type thing. No strength to cook. Take a bit of pressure off my husband.

Ate some pudding. Triggered more pain but still not unbearable. I'm actually running from all and any food. I'm scared. Bad though b/c I need more nutrients. Have to go back to eating at some point. 3 weeks and 3 days with almost no food, just fluids. Wish I could keep an IV at home or parenteral nutrition of some kind to build me up. I'm losing muscle mass. I have a friend that does all raw food prep. Might ask her to make some high protein, high nutrition shakes with gentle ingredients.

Today has been better than the last week, even with lingering symptoms of my adventures. Tomorrow will be even better! Maybe my real face will find its way back by then too.

Post Edited (Wendy Workout) : 3/23/2014 11:24:49 PM (GMT-6)

Thanks Bill. I will talk to my GP about the findings next time I see him. I know discussing it with the surgeon will be a waste of time. Hoping Thursdays appoint will be my last with him. You have all been way more helpful.

Today went better. Milder pain. Eyes started to swell up by dinner so more Benadryl. Going to take more and off to bed. Rash on my body flaming red since this afternoon and itchy again. Told this could happen for days. Anaphylactic response can go 72 hrs apparently. I'm almost at 48 hrs. With my luck lately I'll go 72 hrs.

This is #3 though.....surgery, gallbladder (??) and allergic reaction. I'm done. Moving on!

Post Edited (Wendy Workout) : 3/23/2014 11:26:02 PM (GMT-6)

Thanks for checking in on me Denise. The only pain I have swallowing is pills. Haven't had much food wise. Have eaten a few crackers with butter bc they melt easy. I think it's more once food is in my stomach. Sometimes it's ok, other times not. I have a ton of gas and bloating but I can pass gas. I am also burping a lot. I have some ride sided upper abdominal pain tonight but not bad, certainly annoying at this point though. It makes me nauseous.

I read up on how to swallow and avoid gas but I'm doing all those techniques already outside of yoga breathing. I also tip my head back so the fluids cover my throat before I swallow to avoid air. I still struggle some to swallow more than a few sips but I think that's normal. I'm 3 week 3 days now.

Bill mentioned having a Hida scan done. I'll wait and see my own GP for that. I'm scared of the injection mind you. I know its nuclear med and not contrast dye but I have huge fear now. I did have a nuclear scan in my 20's on my leg and all was fine. Wonder what my GP's thoughts are on sludge and if he thinks it hurts or not. Everything on line points to pain that can be caused by sludge.

At this point I just want to get back to my original healing and move on. I'm so so weak now. So long with such limited intake. Add my complications and more meds and it has zapped me. It takes everything just to get up and get ready. I hate feeling like this. I'm trying to take in high protein, calorie but low fat shakes. I got some recipes from a trusted source to try. Just need a few more ingredients.

The CT scan showed I definitely have a lot of swelling inside and around my wrap. Didn't say how bad though. He said it would coincide with the surgical region. I'd like to talk to that ER doc again. He made the most sense. My surgeon just belittles everything. I'm sure thurs I'll have a rant to share after seeing him. As for the allergic reaction, it's mainly itchiness on various parts of my body that come and go. My eyes puff up a bit but nothing even close to what they were doing. My face is still reddish and skin peeling in a lot of spots from being stretched out so much. Those spots itch a bit but more sore. I think one more Benadryl dose tonight and no more. Finished the steroids now. Now I feel sinus pressure/ pain in my forehead and right cheek. My sinus bothered me during the reaction so not surprised. I get sinus infections but the last 2 yrs they get really bad. Never used to get them.

Overall, better day outside of weakness. I want to do so much and just can't. Soon enough I hope. Work called to book me the end of April. I still didn't bc it's harder to cancel than just wait and see. You sound like a busy grandma. That's awesome. My mother in law brought my oldest home from karate today and picked up McDonald's. We don't eat there but I didn't care. One of my kids is in grade 3. We never get to be involved in his class. I miss that a lot. My youngest in gr 1 so we read daily in his class. I hate letting go. Lol. I'm not good at it. I want my kids with me always. Way to go on volunteering.

Edited to ask your insights. I have been suffering from the chills on and off the last few days or so. No fever or other ailments to speak go. Any thoughts? I bundle under multiple heavy blankets, fireplace on, hoodies zipped to chin. I can't get warm at these times. Thought lack of intake but I'm taking in the same now as in the beginning again. Maybe just me recovering. Laying here trying to stop ripping my skin off. Red and inflamed and so itchy. Benadryl taking too long to kick in.

Post Edited (Wendy Workout) : 3/24/2014 11:26:47 PM (GMT-6)

Hi Deb,

Your instincts about the rice are correct. It is hard to chew to a liquid, and likely got stuck. You can't compare your recovery to anyone else's. Yours is uniquely yours, and you've obviously got more than average swelling.

Relax into your recovery. With all you've been through, I know it's hard not to worry, but to your best to go with the flow and trust your body to heal.

I'm off to an allergy appt, then tutoring three kids and a haircut at 8, so I will be AWOL for a while. Hang in there!

You can do this!
Denise

Well my appoint went better than I thought. Surgeon was good. Concerned about my pain and non ability to tolerate food. Have to stay on fluids for 5 more weeks. OMG! I get to have anything I can purée though except meat. He's concerned about my protein intake too. Doesn't want me losing a bunch more weight.

Said my surgery was very intense. My abherrent hepatic artery was very large and intertwined with another group of ( I think) esophageal artery bundle and adhered to my stomach and my esophagus. B/c of this they cut my gastrohepatic ligaments and had to resurrect them back together. They dissected both vagus nerves but I think that part is normal. Division of my hepatic branch of my vagus nerve also predisposes me to cholelithiases ( gallbladder). Yeah! So I wasn't crazy about my gallbladder. Apparently I had severe esophagitis. I didn't know this. Asked for all my test results but only got operative report. Now I have to wait again for the rest.

Have to go back and have a barium swallow after I see him. He said he would have to decide if I need a reversal done. I panicked! No way. I think I may ask for gastric emptying studies done b/c maybe some of that is my problem. He apologized for my allergic reaction. I told him it's not his fault. I asked his resident for steroids and she said no. She's being talked to now. My allergic reaction was his first concern when I walked in. I showed him the rashes I have all over still. Makes me happy he realized how serious it was. I have a bit of a different impression of him now. I think I became a unique case and he sees that now. He says I also can't eat b/c he definitely does not want me to vomit. He's only had to reverse one surgery before. I don't want to be #2.

Still can't swallow a pill. I'm having trouble with all fluids lately but hope it's a passing phase. I can feel my stomach below my sternum b/c it's so swollen there and firm. Bizarre feeling. Have to go on Domperidone too. Today made homemade pizza with my kids and prepped a couple veggies and cooked to purée. My pain skyrocketed. I thought I was past that. Frustrating! I have no idea how I'm suppose to go back to work or when it will be possible. Suppose to go back next week but won't be.

So I think that's it. Anyone else go on fluids for over 2 months? Worries me some.

Debra

Hi MNlady,

I would not base your decision on my story. I'm glad you have read other journeys. It's true, mine is unique. It started with having an abnormal anatomy with the abherrent hepatic artery. Made my surgery more difficult but everything still went well. My recovery was normal for the first two weeks or so. I developed a complication which lead to my allergic reaction. Definitely not the norm. All other stories I've read have gone smoothly. It is a tough recovery but well worth it. I'm a month post op today and I would do it all again. The benefits already are noticeable and I'm grateful for them. Yes I've got some hiccups to work through but in time, things will normalize for me. I wouldn't hesitate to redo this all again for the benefits.

The consequences of no surgery were too great for me. It affected my life every day all day. Everything I did, what I wore, what I could eat or drink, my health.....everything was controlled by my poor health as a result of GERD, esophagitis and HH. I may have to alter things, such as what I can eat, but I'm willing to do that. My dietary needs were already affected prior to surgery. Now I will just have to change them to suit me now, which again, I am ok with.

Hopefully things settle for me. Just taking longer. Some stories I've read on here, people spring back almost immediately. My surgeon said he's only ever had to reverse one surgery. I think its rare overall to have to do so. I'm hopeful with time and possibly minor tweaking, all will normalize for me. I'm glad you are doing your research. I was terrified but deep inside I knew it had to be done. Like I said, I'd do it again. You go have to weigh the pros and cons, the impact of your life and your health, consider all your test results and your doctors advice and go with that. You cannot base it on one persons story, which sounds like you're not.

Thank you for the well wishes. I know this surgery is not taken lightly. They are a lot of factors that help determine if you need the surgery or not. If it's being considered, then it means your situation deems it necessary. Yes it's a choice. Listen to all resources and base your decision on what you believe to be best for you. I had 3 years to think about it before I finally got my surgery. I was all over the map but knew peacefully it was the right choice for me.

Keep us informed how your appointment goes and what you decide. All the best.

Debra

Thanks Denise. Hope you are feeling more rested today. My twin sister was in a bad car accident yesterday so spent about 7 hrs at hospital with her. Broke her pelvis in 3 places. Surgery Tues to fix one of the breaks. The other two have to heal on their own. She is in extreme pain. She'll be in hospital 6-12 weeks. No idea yet. Unfortunately I flared a lot of pain back up. Assuming it's the tense muscles and upset. Feels like I could feel every spot they cut inside again. My left shoulder and clavicle region hurts again too like in the beginning. Back on some pain meds and nausea meds. Gas was severe last night. Kept me awake all night. Slept an hour and back at hospital now for my sister. Not helping me for sure but my pain is nothing compared to hers.

Brought some applesauce to eat and meal replacement shakes. Brought all meds I may need. Have to run.

Take care
Debra

Deb-

With all they had to do in there I can see why you have had such a tough time.

You are taking it in stride and that is a very god thing. one day at a time and things will slowly improve. With all the extra work the referred pain will surely take longer to go away.

Take care,
Bill

Hi,

I had my NF 3/13/14. I had a small hiatal hernia (I felt it the week of 12/20/13) that threw my GERD/Reflux out of control. I have had reflux since I was 14. I am now 33. They tried increasing every PPI on the market and nothing touched it. During my scope they saw an ulcer in my esophagus, and esophagitis. So I was left to make a choice of attempting to live or eventually get Barretts. I'm a paramedic so I have the ability to walk into the ERs and annoy the drs about surgeons. All of them said the same name as being the best in the area. So I decided that was who I was going with. So fast forward, had the surgery, was totally pissed I had a foley when I woke up but they took it out so I was a bit more pleased. Right away I was drinking broth without issue. I was walking up and down the halls all night without issue and I was able to swallow my meds without issue. I have been waking up free of acid playing with my tonsils. My issues are this. My surgeon likes the "if you can swollen then eat" theory. I have read some do soft diet for a month and others that eat right away. I have no idea which one is right. I was eating mash just fine and jello (there is not a lot I can eat on a soft diet because I am one of those lactose intolerant folk). I finally had a BM (was on liquid hydro every 4 hours) despite my use of stool softers on tue. It hurt. I then ate for the first time some scrabbled eggs and since then I have had severe watery diarrhea. Like I sit down and it is like peeing out my ass. Always before it I have this horrible noises coming from my stomach that everyone in a room can hear. Also it feels like my stomach is on fire after I eat this new stuff. Im sure that is just the swelling. So today I saw my surgeon and he again said to add more protein like ground beef. I am terrified to try ground beef. I did eat some chicken noodle and did eat some of the noodles and two of the small chicken pieces. I felt like crap after and thought maybe it was gas and took some gas x and it did help some of the pain I was having on on the L side right above my stomach and it radiated to my mid sternum. Is this normal? I stopped taking the pain med because I am not really in pain. I am lethargic from not eating a lot but not really in pain until now. It does pass in time but its frustrating. Is it the introduction of new foods? Is this diarrhea going to always happen? All I keep reading is horror stories of people not being able to eat bread or steak again. My surgeon also thinks I might be (based on how my diet is doing) able to go back to work in 2 more weeks. Im a paramedic. We lift a lot of stuff. I have to use my abd to help comp with lifting because I am a woman. I have to use my abd for the extra umph to get the cot into the ambulance. Is that even enough time to heal? Im also wondering if I made a mistake doing this surgery but mostly because I am scared. Any help would be appreciated. Thanks for for your time.

Bill,
Thank you so much for your reply. Today had been a depressing day for me. The watery diarrhea conts and im really worried its c diff. Unless its totally normal for really watery diarrhea. It freaks me out. Like I just had a glass of soy milk and he comes the noise that warns me of the watery stool that is about to come.

I was eating mash a week ago and did not have a problem with it. Im really bored of it though. I dont seem to have any energy to even wash dishes. Patience is not my thing at all. I want to be up and cleaning and eating instead of this. Im sure it does not help I have had a nasty head cold I cant seem to shake since 4/1/14. I will give ground beef a try, I know I need the substance. Thanks for your response again. I only know one person that had this and it was ten years ago and they didnt have it lap. She freaked out and told me to not eat solids.

Hey Bill or Denise, if you read this, can you share your thoughts please ( or anyone else).

I have narrowed down deep left clavicle/ shoulder pain within 20 mins of eating but no back pain. When I'm trying to be active ( although mildly) I get the chest and back pain like a spike boring through my chest. Then that repudiates to my left shoulder. It's not gas. That pain/ discomfort feels different. I burp a lot, especially when I drink or try a few bites of food. I have other quirks but all normal I believe. I have noticed what feels like heartburn lately too. Not sure if it's the 'dumb organ' interpreting trying to eat a few bites as heartburn or what. Gaviscon helps this.

Does this all sound like the Vagus Nerve pain? That's what I believe it is unless it's pain from swelling of the wrap and esophagus I'm feeling. Wouldn't the swelling be done by now? How long can this pain take to go away. It can be quite bad where doing anything with my left arm aggravates it so I tend to avoid using it to get relief. It's a hard pain to get relief from.

Thanks for your thoughts. Still trying to decider what's what and what my norm is.

Debra