The Esophageal Cancer Education Foundation (ECEF) www.fightec.org was formed in 2003 by Bart and Virginia Frazzitta. The initial purpose in establishing this 501 C 3 non-profit Organization was to help solicit funds for a CD ROM Project they had committed to fund for Memorial Sloan-Kettering Cancer Center. The project had a cost of $75,000. This was achieved and it served as the beginning of this Foundation geared to focus on a mission statement that covered three goals, namely:
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Read an Excerpt
Esophagectomy Post Surgical Guide: Questions and Answers
AuthorHouseCopyright © 2011 Esophageal Cancer Education Foundation
All right reserved.
Chapter OneFIRST FEW MONTHS POST SURGERY
"Having a positive attitude about life in general will help in your recovery process"
In this first chapter we capture those issues that will cover all aspects of your recovery process be it Nutrition, Sleep, Exercise, Emotional and Physical Issues that you may experience in the first few months of recovery. The first few months are extremely important so as to get on the right path and move positively through this portion of your recovery effort.
You should leave the hospital with any medications that your doctor has prescribed. You will either have the actual medication or a prescription that should be filled immediately. If you entered the hospital taking medication for a pre-existing condition, make sure your doctor is aware of that and ask if you should continue taking that medication. For new medications prescribed as a result of your therapy and surgery, be sure to ask any questions necessary so that you are fully clear on what each medication is, what it's for and how to properly take it.
If you are leaving the hospital with an open wound, make sure that a visiting nurse service has been prescribed and scheduled to begin monitoring that wound.
Your surgeon will want to see you within a short period of time to ensure you are recovering properly and without complications. Your surgeon will outline their course of action and time frame for releasing you to your regular doctor or medical oncologist. If you are unclear about this plan, ask whatever questions are necessary to make the process clear in your mind.
For many patients the news that they are being discharged leaves them with a feeling that their long ordeal is over, and that they can begin to relax. The reality, however, is somewhat different and in many respects you are merely beginning another leg in your journey to recovery. At this point it is tremendously important to focus on recovery and remain positive and motivated as you enter this stage. Your goal should be to recover to 70% of your pre-surgical physical condition within the first 2-3 months after returning home. Unless you have complications this is a realistic time frame to use as a goal.
Eating, sleeping, exercising, overall physical and emotional issues will all play a role in your recovery process. Recognizing each unique circumstance and being able to understand it and find how to deal with it effectively will become a part of your daily routine. Certain changes in your body may carry the description as being a, "different normal" and you can either learn why those changes occurred and how to manage them or you can continually fight them which will be frustrating and counter-productive.
Each of the areas mentioned above will play a role in your total recovery and it is critically important that you focus on each area to the extent that you minimize the related issue and its impact on your life to the greatest extent possible.
The routine of walking, breathing and coughing exercises that you began in the hospital must continue at home if you intend to recover quickly. What you will find is that you must be more self-motivating as you will no longer have a nurse reminding you to walk, reminding you to use the breathing machine or to do your coughing exercises.
We found that exercising had a profound impact on your recovery process and on your emotional state. At one point, you may come to the realization that you have become a "Couch Potato". If you don't want to exercise and often used the excuse that you are tired now and if you were to exercise you would be even more tired and so, you would do nothing. This vicious cycle is completely counter productive for a post surgical patient in that exercising has a way of improving various aspects of your recovery process. Exercise will improve your appetite, speed healing of your surgical sites and lessen pain. It will also improve your lung capacity and your overall feeling of being in good health.
At this point it is critical to carefully monitor your weight. Your weight must be stabilized and over the first six months after discharge you should begin slowly regaining some of the weight lost during therapy and surgery. In some cases patients who were overweight prior to diagnosis may not want to gain all of their weight back. It is important to consult with a nutritionist to determine a proper goal weight and work towards that objective. What is important during this period is that the patient, not continue to lose weight. Any continuous weight loss requires medical intervention to determine its cause and a plan of action to reverse losing weight should be implemented.
One of the more critical activities you should definitely plan to do is exercise. During the first few months of recovery exercising will help in various ways. It will help you heal sooner, you will get your appetite back quicker and exercising will have a positive impact on your mind and your ability to recover in a shorter period of time.
You should consult your doctor as to the exercise plan you should implement. On average walking 1 ½ miles, 3 times a week at a pace that will give you a cardio vascular type workout should suffice.
Please check the chapter on physical issues contained in this guide for further information on this topic.
Eating will be a challenge for you when you leave the hospital. Because more than likely they took a part of your stomach away when they did the surgery you will have a smaller stomach but yet you will need the same amount of calories you took in when you were with a full stomach before the surgery. The Institution that you were treated at may send a menu plan for you to use for a given amount of time as you begin your recovery process. The transition from fluids, to a soft mechanical to a full menu of foods should be adhered to as it will play a major role in your eating ability as you go further out in your recovery process.
In order to get the amount of calories you need to maintain your weight you will have to eat at least 6 meals a day. In effect two breakfasts two lunches and two dinners. What you ate before the surgery for a given meal should be cut in half and eaten at two sittings now. You will more than likely not have an appetite when you leave the hospital, so you will need to eat by the clock. For instances, if you had a sandwich for lunch before the surgery, cut it in half and have half say at 12 noon and the other half at 2:00 PM. You can do the same for breakfast and dinner. Try not to drink fluids with you meal. Your stomach is now reduced in size and filling it with fluids will take the place of the calories you need to maintain your weight and you will not stabilize your weight but continue to lose it if you drink significant amount of fluids with your meals.
The proper way to go forward is to eat a balance diet with enough proteins, carbohydrates and fats to help your body fight against any problems you may encounter.
Please check the chapter on nutrition contained in this guide for further information on this topic.
One of the processes of an esophagectomy is the removal of the sphincter value, which is on top of your stomach. This valve acts like a lid and holds the food in your stomach and without it gravity is the only thing that keeps food from backing up into your esophagus and throat. Because of this, you will need to sleep elevated, at a 30 to 40 degree angle, to avoid aspirating especially during the night when you are asleep.
One way to achieve this required sleeping angle is to buy a medical wedge that will elevate your upper body. You may use an additional pillow on top of the wedge for added height and comfort.
Please check the chapter on sleeping contained in this guide for further information on this topic.
The therapies and surgery you have thus far been through is undoubtedly traumatic. If you stay the course, exercise, eat a balanced diet and get the proper sleep you will stand a much greater chance of not experiencing post surgical depression.
In the event that youdo find that you may be depressed, it is important for you to see your doctor immediately. Depression may manifest itself in a variety of ways that will usually centers around a lack of motivation. The patient will complain of being tired, not wanting to exercise. They will often ask to be left alone and may tend to sit in front of a television all day. They may not eat properly stating they are not hungry.
Please check the chapter on emotional issues contained in this guide for further information on this topic.
When you leave the hospital it is quite likely that you will receive a prescription for pain medication to take as needed. Pain medication can have various side effects the most common being constipation. The use of stool softeners and other over the counter medications will help alleviate this issue. The smartest way to offset this is to wean off the pain medication as soon as you can tolerate it. Sometimes an over the counter pain reliever will be sufficient for the pain you are having and that will not have the undesirable side effects. As an added incentive, you will not be able to operate a motor vehicle while taking narcotic pain medication. The sooner you remove the pain medication the sooner you can begin to regain some of the independence you may have lost during therapy. One of the stipulations is as long as you are on pain medication you will not be able to drive a car.
While you were recovering in the hospital, the nurse was likely to be pushing you to exercise, to get up and walk around the floor. In some institutions they let you know how many laps around the floor is a mile and expect you to do that every day you are in the hospital.
That same regimen needs to continue to be part of your daily routine. As outlined in other areas exercise will hasten your overall recovery, help you regain your appetite and keep your mental outlook positive.
Please check the chapter on physical Issues contained in this guide for further information on this topic.
Frequently asked questions
We have captured some frequently asked questions and their responses. We ask that you discuss these responses with your doctor before implementing them.
1. When I leave the hospital will I go home with a feeding tube and if so how will I take care of it?
The decision to place a feeding tube typically is made be fore surgery, and your surgeon will often discuss with you if he/she intends to place it during your operation and the rationale for doing so. If a feeding tube is placed during or, in some select cases, after surgery, you will most likely go home with it. Tube feedings may or may not be prescribed depending on how well your oral intake is after surgery. A visiting nurse will be arranged to help you and your family learn how to care for the tube and how to manage tube feedings if necessary. Once you have recovered sufficiently and do not need the tube, your surgeon or their staff will remove it in the office.
2. What kinds of follow up should I have with my surgeon, oncologist or regular physician and has that been set as I leave the hospital?
You should see your surgeon soon after being discharged from the hospital. This typically will be in 1-2 weeks after you get home, and you should call the surgeon's office to arrange a time that is mutually convenient. Once you have seen your surgeon for the immediate postoperative visit, you should also make appointments to follow up with you medical oncologist and family physician in order to keep them informed of your progress. Your surgeon and medical oncologist will coordinate a plan of oncology aftercare and surveillance that will entail periodic visits and scans as necessary.
3. What attitude should I try to have when I leave the hospital?
Having a positive attitude about life in general will help in your recovery process. Take time to stop and smell the roses. Life is precious and we should accept that and live each day to the fullest.
4. Did I receive pain medication when I left the hospital and instructions as to how to use it?
You should have received prescriptions for pain and other medications and instructions from the nurses both about the medication and other aspects of your recovery. Your hospital may or may not allow you to fill your prescriptions prior to leaving so that you have the medication in hand. You should ask your nurse if this is an option so that you do not find yourself without medication because your local pharmacy does not carry the prescribed medicine.
5. How long could I have pain from my Ivor Lewis esophagectomy incision?
After an Ivor Lewis esophagectomy, the patient should expect incision pain to last 4-6 weeks. However, pain medication should help control the pain. You may be able to switch from a prescribed pain medication to an over the counter pain medication. Check with your doctor so as to check the pain you are experiencing and whether or not an over the counter drug will suffice.
6. How long should I stay on the pain medication after I leave the hospital?
As long as you have pain, which can sometimes last approximately 7 to 30 days after surgery. Be aware that prescribed pain medication has a dependency effect if taken over a long period of time. Check with your doctor if you have to renew the prescription for pain medication.
7. How long will the recovery process take?
The recovery process for each patient varies. The average recovery process takes approximately 6-8 weeks.
8. If I am leaving the hospital with stitches, when and where will they be taken out?
Stitches should be removed 10-14 days after surgery in the doctor's office. These are usually staples and they come out without pain to the patient.
9. How important is exercising at this stage of my recovery?
Exercising is one of the most important aspects of this phase of your recovery. A regular routine of walking 1 ½ miles three times a week should be cleared with your doctor.
10. When I get home how will I cope with sleeping on a wedge or adjustable bed or reclining chair?
Getting a good night sleep is important for your recovery process and because they have removed the valve on top of your stomach that acts like a lid to hold your food in your stomach, you will need to sleep on a 30-40 degree angle. You can accomplish this by purchasing a medical wedge from a medical supply store or by buying an adjustable bed. There are other ways to raise the head of your bed to achieve the angle to sleep at. You could put wood boards under the head of the bed so that the entire bed will be elevated. This would put your partner at the same level as you which may not be right for them. You could also buy a reclining chair that will suffice.
11. Did I receive sample menus or nutrition information that will help in my recovery?
The hospital nutritionist will meet with you prior to discharge to review the type of diet and food that you will require following your operation. They will often have sample menus and/or literature that will help guide you when you go home. If they do not provide any written literature, ask them to provide you some examples as a guide.
Excerpted from Esophagectomy Post Surgical Guide: Questions and Answers Copyright © 2011 by Esophageal Cancer Education Foundation. Excerpted by permission of AuthorHouse. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents1. FIRST FEW MONTHS POST SURGERY "GOING HOME"....................1
4. EMOTIONAL ISSUES....................25
5. PHYSICAL ISSUES....................35