in surgery right now

I know I was certainly nervous when I went in for my Ivor Lewis surgery. Since your husband went into surgery this morning I am hoping by now he is out of surgery and in ICU. I am sure you are surprised and a bit concerned about all the tubes that are attached to him right now. Two of the risks of Ivor Lewis surgery are breathing issues and cardiac rhythm issues; so they will be keeping a very close eye on him for a while. I remember when I woke up in ICU I was on a respirator and my hands were tied down. I found out later that they tie patient’s hands down while they are unconscious and on a respirator so they do not pull IVs and tubes out while they are unconscious. It kind of scared me to wake up like that, but they quickly told me what was going on and to relax and if my breathing remained steady that they would take the respirator off. Luckily things went well and the respirator was off fairly quickly.

What can you expect from here?

 Most Ivor Lewis patients are in ICU for a couple of days while they make sure respiration and heart rhythm are where they want them to be. He probably has a spinal epidural in for pain at this point, and they will be monitoring his pain medication fairly closely for the next few days. I have to say that the facility that did my aftercare did a very good job of pain management. After a couple of days the epidural comes out and they gave me a pain medication pump so I could manage my pain on my own.

There will be nothing by mouth for at least five days. I found my mouth and lips got very dry even though I was getting adequate hydration via IV. The nurses gave me a sponge swab and ice chips that I could use to wet my lips and swab out my mouth if I promised not to swallow. They told me if they caught me swallowing the swab would get taken away. So.... they did not catch me, but I think a little water may have snuck down my throat a couple of times. Nutrition is via IV at this point.

 After 5 days they took me down to X-ray and had me swallow a barium mixture while they watched for leaks in the "anastomosis" (the area where they connect the resected stomach to the remnant of the esophagus. That went well so they then allowed me to have liquids for a couple days and then moved me on to soft foods.

I had a tube going down my throat through my nose, two drainage tubes going into the side of my chest, and a couple IV tubes for nutrition and hydration, and a catheter. Over the next eight days I measured my progress by the number of tubes I still had attached to me. The nasal tube came out first, then the chest tubes, then the catheter, and finally the IV tubes.

 They had me out of bed and in a chair the day after surgery for a couple of hours, on the third day I took a short walk with all the tubes attached. Each day I would walk a little more until I was making a couple of laps around the thoracic surgery floor each day.

 Five days after my surgery the pathology report came back from the tissue they removed in surgery. In my case, it was not the news we were hoping for. One of the lymph nodes they removed had esophageal cancer cells in it so I would have to complete follow up chemotherapy after I recovered from surgery.

 I was in the hospital for 12 days. I ended up staying two days longer than they expected because I got an infection in both of my major surgical incisions. That meant they had to re-open my incisions and give me IV antibiotics for several days to clear things up. Watch anyone who comes into your husband’s room and make sure they wash their hands before they touch him, including you. Hospital infections are unfortunately very common.

When I came home from the hospital I was very weak and became short of breath very quickly. Just getting out of bed and shaving and getting dressed tired me out. Going up stairs may be an issue for your husband for the first couple of weeks. I would avoid it if possible.

The surgeon had placed a “J” tube feeding tube to supplement my nutrition while I learned how to eat with my new modified digestion system. I was probably two months before I could eat enough on my own so I did not need the feeding tube. Managing the feeding tube and formula pump sounds daunting when they first describe it in the hospital but it is actually fairly straightforward when you get home.

 I had a home visitation nurse that came every other day when I first got home to change my surgical dressings and check on my vitals.

I did eventually purchase an adjustable bed but for the first year after my surgery I slept on a wedge shaped pillow that I purchased at Bed Bath and Beyound. At first I had problems with sliding down the wedge while I slept and waking up with reflux. I found that if I placed a pillow under my knees it kept that from happening. Your husband will have to learn to sleep on his back. I was always a side sleeper but I learned to adjust. If you ask your surgeon to write an order for an adjustable bed some insurance companies will pay for a bed, or at a minimum, you can write the cost off on your income tax as a medical expense not covered by insurance.

 Prior to discharge from the hospital you should get a visit from a dietitian to talk about what your husband should and should not eat as he gets used to his new digestive system. They should give you some instructions but just in case here is a set of instructions for a post esophagectomy diet: http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

 One of the common issues post Ivor Lewis surgery patients run into is something called “dumping syndrome” this is caused when food moves too rapidly through a patent’s modified stomach and into the small intestine. The symptoms are dizziness, rapid heartbeat, an anxious feeling, and diarrhea. This can be very disconcerting when it first happens but it does get better with time. Here is a diet that helps avoid dumping syndrome issues: http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

 It took me about three months until I was strong enough and past dumping syndrome issues so that I could leave the house for extended periods of time. It took me about six months until I could take extended walks, do yard work, and other kinds of exercise. It took me almost a year before I felt I was back to where I was prior to surgery. My recovery time was extended a bit because my incisions had to be re-opened due to my in hospital infection and the fact that I had to do 18 weeks of chemotherapy after my surgery due to the cancer found in the removed lymph node. Recovery does take time.

 I hope things go well for your husband. If you have additional questions now or as things move forward come here or send me a private message and I will be sure to get back with you

 Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Five Year Survivor

slpmom said:

Wow Paul, what a great

Wow Paul, what a great summary not only for us but for anyone out there not knowing exactly what to expect. You described the exact process my husband went through and number of tubes that he has. Not sure if he had the restraints, he didn't tell me that! The surgery went well according to the Dr. The only weird thing is that he came out and said "we almost canceled the surgery this morning because his white blood cell counts were low". Gee, I thought, maybe you should have taken blood from him a week ago instead of yesterday...They gave him the stuff to boost his WBC and proceeded but now I especially worry about infection. I will be super careful having read your story - how difficult that must have been for you! He can talk but is having trouble feeling like he can fully inflate his lungs - he can't take deep breaths and was a little panicked. Even passed out a few times as he was talking to me. He has a lot of mucus and he can't cough very well to clear it. They had a respiratory therapist in there to help him with some techniques. He is in pain despite all the meds but he will work through it. I hope he sleeps a little tonight. They told him the same thing about those little sponge sticks! His mouth is super dry.

I am ordering a recliner for our living room - he may have to sleep on that for a bit if he can't get up stairs. I bought a wedge for the bed and he has used it even before surgery, but he hates the thing! We will have to save up for that adjustable bed...he has already been through chemo and radiation and it got rid of the tumor. We will know the results of the nodes biopsy next week. Praying he doesn't have to get more chemo. He had a super strong reaction to it the first time - so sick. Has horrible neuropathy in his feet because of it (Gabapentin helps though). He has had a jtube for several months because at one point the chemo/rad made him so sick for so long he could not keep anything down. So at least we are used to the jtube. He hasnt used the jtube in a while having been able to eat normally for the past 2 months but he will get used to using it again...

You have told me several things that were very useful and I can't thank you enough! When I ask the Drs these questions, they act like its nothing and he'll have no problems (ie: will he be able to go upstairs? they respond: sure he will and it will be good for him!). I know they see this stuff everyday but I don't think they really know what its like. Only the people who've been through it know!! And yes we will have a home health care nurse so that will help a lot too. Lets see what tomorrow brings....

I had the same issues with breathing and mucus when I first got out of surgery. I also felt like I had a band around my chest and I could not fully inflate my lungs particularly the right lung. That is normal and will improve with time.

They should have given your husband an Incentive Spirometer to exercise his lungs. I have to admit I did not like using it, and my wife (bless her), kept nagging me to use it every hour or so, but it did improve the way I felt in a couple of days.

Using it made me cough at first, and of course the pain meds were helpful but did not completely eliminate the pain when I coughed, but coughing is necessary to clear the mucous from his lungs.

Tell him not to be concerned about the restricted feeling in his lungs it is normal and will improve with time. They should be doing a couple of chest x-rays over the next couple of days to monitor the expansion of his lungs and to check for fluid buildup around the lungs.

 One day at a time……

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Five Year Survivor

slpmom said:

Ok I will tell him about the

Ok I will tell him about the breathing issues being normal. I have told him everything you said and it has been a great comfort to know what to expect. And they just brought in the spirometer today! He has been up for 2 short walks. They have taken a few tubes out - like the epidural line (actually it was accidentally pulled out in the night when he tried to move and no one knew it was out - he was in horrible pain for several hours before they figured it out...). They have him on Dilaudid now. He is hitting that pain med button on his bed all the time, taking whatever it will give him...poor guy. So many meds they give you....antibiotics, steroids, insulin to combat the blood sugar spike from the steroids, blood thinnners/anticoagulants, pain meds, IV fluids, holy cow! I know they are all needed. He is talking more in that raspy mucousy voice and he looks better than yesterday. The neupogen shots have put his white blood cells into the high average range now so thats good.

Do you remember how many days you had the chest tube in for and did you have any problems after they took it out? The nurse said they have to make his lung doesn't collapse when they take it out (she said several days)...that was a scary comment...

Since it has been about 5 and a half years since my surgery I am a little fuzzy on how many days my chest tubes were in. I know they took them out after I was transferred from ICU to a regular room and I was in ICU for three days and I think it was a couple more days before the chest tubes came out. I think it was around day six in the hospital. I was glad to get them out because they were a major contributor to my discomfort. Every time I moved they seemed to pull and hurt.

Yes they certainly have lots of medications to give. It seemed like every time I got to sleep someone was waking me up to take a blood sample or give me some kind of medication. But it does slow down once you get past about 5 days.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Five Year Survivor

slpmom said:

He asked when the chest tube

He asked when the chest tube would come out and at first they said after 6 days but now they are saying they suspect his vocal cord is partially paralyzed because he can't cough and if he can't cough the chest tube stays in. He makes his living as a consultant and his voice is critical (he can talk but its labored, phlemy and breathy). I didn't realize the not coughing was not just a normal part of recovery. They are getting an ENT referral. This was one of our worst fears.

I have heard of patients having partial paralysis of the vocal cords in the past. In both cases it resolved itself after some time and rehabilitation support. Being able to cough is important to clear any mucous from the lungs, so I hope the ENT has some ideas there. Hoping the ENT has some short term thoughts about what to do.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Five Year Survivor

slpmom said:

Well the vocal cord injection

Well the vocal cord injection worked enough to give him a little more volume for now. He passed both the swallow and the leak tests. They told him the chest and j-tubes would come out and then they turned around and said no, they would stay in because they saw some swelling around the anastomosis. They want to redo the tests tomorrow. My husband is so mad right now..he really wants those tubes out. I don't see why swelling is that big a deal..its going to get better and its not like he's gonna eat for a while anyway - he knows he'll feed through the j-tube until its safe. How would swelling go down in one day anyway? The good news is that it is NOT in the lymph nodes. We are not happy with the team he has - the PA is rushed and rude and the Dr is a little rude and contradicts himself - he came out of surgery and told us the tumor was gone when they got in there (we were told that from scans too...there were only "trace" cells left at the site after chemo/rad) and then today he tells my husband (I wasnt there at the time) that there was tumor on the outside of the esophagus. What?? The vocal cord was paralyzed because they used traction to go far up and pull many lymph nodes out. I can't wait till he's home..this has been a very frustrating procedure with poor communication on the Drs part...

I know being in the hospital and dealing with all the various reports and changes in direction can be frustrating. I was not too thrilled with my surgeon’s communication skills either, but a good swallow test and clear path report is very good news. Hopefully when they do the repeat swallow test tomorrow things will look better. It is good they are being cautious because a leak at the anastomosis can be a very serious issue, particularly if it happens outside the hospital. Hang in there hopefully he will be home in another 5 days or so.

Best Regards,

Paul Adams

McCormick, South Carolina
DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009
Cisplatin, Epirubicin, 5 FU - Five Year Survivor