Questions and Answers for the Laryngectomee
From the Florida Laryngectomee Association
A downloadable pamphlet with graphics and information - download pdf
Hospital Hospitality Houses
I've seen a few posts where some of our members have to go to a hospital that is not close to where they live. Sometimes you may find help with that.
We went to Boston where I had my laryngectomy in 1996. We live in Milwaukee, Wisconsin. Luckily, we did find cheap housing accommodations but, a few years ago, after I retired, I started volunteering for a hospital hospitality house, National Association of Hospital Hospitality Houses. On their website, http://www.nahhh.org/ , you can look for a house near where you need to go to the hospital.
The one, where I volunteer, is for adult patients (where Ronald McDonald Houses are for child patients). They are considerably cheaper than hotels--even the ones with a medical discount. Here is how this one works. There is no maid service—you make your own beds, clean your own room, do your own laundry, buy your own food and cook it in the communal kitchen. They DO ask for a daily donation--so you are perfectly welcome to give more than they ask. If you can't afford what they ask, then give what you can. They have fund raisers to help people who need it.
You also need a referral from your doctor so they know you are not just passing through for vacations. If the patient is IN the hospital, the family members can stay at the House. If the patient is at the hospital on an out-patient basis, they can stay at the House during their treatments.
I'm sure each House has it's own way of doing things, but I think it would be worthwhile checking them out.
Lary since 1996
ACS Hope Lodges
Who is eligible to stay at a Hope Lodge?
In general, Hope Lodge is available to patients and caregivers actively undergoing cancer treatment on an outpatient basis. Patients must live at least 40 miles or a one-hour drive time away from the treatment facility. Priority is given to patients needing three or more nights of lodging. Patients must be at least 18 years old (exceptions are made at some locations) and be independently mobile in the event of an emergency. Patients are not screened for any financial or demographic criteria. Please visit the page for your desired location for complete eligibility criteria.
How much does it cost to stay at Hope Lodge?
There is no cost to stay at any American Cancer Society Hope Lodge.
What kind of environment can I expect at Hope Lodge?
Hope Lodge offers private guest rooms and bathrooms. Each facility is designed for a shared experience in every other aspect of life. Lodges feature common areas, including full kitchens, laundry facilities, cancer resource rooms, and areas for quiet reflection. Hope Lodge is a place where you can count on emotional support from other patients and caregivers who also are undergoing treatment. Guests rally around each other, building life-affirming connections and lifetime friendships.
Information on Hope Lodge can be accessed here:
TYPES OF LARYNGECTOMEES
from Headlines, September, 1999
Are there different kinds of flaps? What is a stomach pull-up or a jejunum? Is it possible to have a TEP after these surgeries?
We need to begin this with a brief review of the laryngectomy. Remember that the larynx sits in the throat or pharynx and when it is removed we have to close the pharynx so you can swallow again. The most common way to reconstruct this area is to simply close it with several layers of sutures, thereby creating a tube through which saliva, solids and liquids can pass. This is called ?primary closure?. (See a description of how this is done under Hints section, Side Effects -Swallowing Difficulty)
Now, the problem comes when we have to deal with larger tumors or tumors that arise on the side or the back of the larynx. This creates a situation where we do not have enough tissue to close the pharynx primarily. In this case we borrow tissue from elsewhere in or on the body to supply this extra tissue needed for closure. This tissue, transferred from another site, is generically called a ?FLAP?. So what about these flaps? Historically speaking, we started with skin flaps from the neck and upper chest. We then moved on to flaps from the upper chest, which included a portion of the large muscle on the chest called the pectoralis major. From there we went to using the entire stomach which was turned into a tube and used to recreate not only the throat but also the entire esophagus as well (the gastric ?pull-up?). Then we finally got into what are called ?free flaps?. These are pieces of tissue which are completely detached from the body?the ?free? part?and transferred to the neck where they are hooked back up using an operating microscope. The jejunum (a segment of small intestine ) and the radial forearm flap are the most commonly used in this category.
Lastly, the question has arisen as to whether or not a TEP can be used in patients that have had flap reconstruction following their laryngectomies. My answer has always been that this needs to be individualized on a case by case basis. I have put TEPS in just about all of the flaps that I have mentioned above. This includes the gastric pull-up and the jejunum. We are just a little more careful in evaluating patients for this device after the flaps, but it can be done with good results.
Glenn E. Peters M.D.
Director, Division of Otolaryngology - Head and Neck Surgery
University of Alabama at Birmingham, Birmingham, AL
A stomach pull-up (referred to as gastric pull-up by some surgeons) is performed when the cancer extends too far down the throat to be eliminated by reconstructive surgery. When this occurs, the esophagus is removed and the stomach is pulled up and attached to the base of the throat. I was required to have a cardiac stress test and an echo cardiogram prior to the surgery which was performed by two surgeons, a Cardiothoracic Surgeon, who removed the esophagus, and an Otolaryngologist, who performed the total laryngectomy and neck dissection. I had two incisions and after removal of the esophagus, my stomach was passed up behind the heart and attached it to the base of the throat. The surgery takes six to twelve hours and the hospital stay is about seven to ten days.
During my hospital stay, I experienced no pain except when walking, which I began immediately after release from the 24hrs. in intensive care. I was fed by j-tube for seven days and then x-rayed using a contrast media to assure there were no leaks. I was placed on a liquid/soft diet and discharged with the food tube still in place on the 10th day. My stomach is now located in my chest cavity, where, unlike its normal location in the abdominal area, there is little room for expansion. When I first arrived home from the hospital, I could only consume 4 oz. of liquid at a time, then I had to wait an hour. Since about two weeks post-op, I have been on a regular diet and have no problem eating any and all types of food. The quantity has be be small, about 8 oz. at one meal and it does digest faster now at 3 months post op. I still have the "fail safe" J tube but have never needed it and it will be removed after I complete radiation.
SOME THOUGHTS ABOUT WHAT TO TAKE TO THE HOSPITAL
Since the average number of days of hospitalization vary from about 5 to 10 days depending on your surgery, you might want to take some of your own clothes with you. I wore shirts that opened in the front, from my husband, and shorts. Made me feel better, did not interfere with stoma cleaning or the drains, and really helped me think I had some control over my environment. Take writing materials. You can communicate but also write down questions you want answered when your doctor visits. Take a good book, a small radio, a CD player, or a lap top, anything that will stimulate your brain and distract you. Hospital TV systems are never very adequate in the number of choices you have. Get Lauder's book. Ask before what supplies you will need when you get home and what they will send with you.
If you can, have your caretaker there post-op. It will help them understand what you are going through and how to do some physical care for you when you get home. If you are having your surgery away from home, get a referral to a local ENT and SLP before you leave the hospital. It would be better if they could talk with your hospital team and be prepared to help you when you get home.
WHAT TO EXPECT RIGHT AFTER SURGERY
That you will have a feeding tube of some kind.
That your neck will be very swollen.
That you will have drains to help reduce the swelling in your neck.
That you will have a humidifier with a tube and mask that should lie loosely by the stoma so you will be breathing in moist air.
That they will suction out mucus and most hospitals irrigate with saline solution 4 x a day.
That you will be up and walking faster than you think.
That when you buzz for the nurse's station, they will answer without realizing you can't talk. Ring the bell you have brought and have by your bedside to remind them.
Laryngectomy Care when you are going home from the hospital, 6 pages:
Your stoma requires special care. Before you go home from the hospital we will teach
you and your family how to care for your stoma. This guide will help you learn to clean
your stoma and suction out secretions.
We will encourage you and your family members to practice your stoma care, cleaning,
and suctioning as often as possible. The more you can practice, the more sure you will
feel and the more capable you will be when you leave the hospital.
Ask questions, take notes, share you concerns.
TELEPHONE WITH NO VOICE
In the hospital, before I could use the EL, I got phone calls and the nurse would tell the caller that I could communicate by touching a button on the phone, once for yes and twice for no, if the caller would ask questions. It made me feel less isolated, and was a big help.
For suggestions, contributions, corrections or questions about this section, please contact: