By Karen Chelcun Schreiber
Unlike most surgical procedures, particularly those of an urgent or emergency nature, undergoing a prophylactic (preventive) procedure affords one a bit of luxury – time to plan and prepare for this major life changing event. Take advantage of this opportunity to help to make the entire process a bit less stressful. Careful planning before your surgery will allow you to focus your energy following surgery on your recovery. I developed this list of suggestions from my own personal experience and that of other family members. If you have suggestions to share from your own experience, please leave a comment.
Address Insurance Issues
Call your medical insurance provider to do some initial information gathering. Determine what your insurance coverage is for this type of surgery. Be certain they understand this is not elective surgery; rather it is the recommended course of action for those with the CDH1 gene mutation. A few representatives I initially spoke with could not grasp that this is NOT gastric bypass surgery for weight loss. Ask whether choosing a surgeon outside of your local area or “network” is an option. Sometimes coverage is different for “in network” vs. “out of network” services. A case can be made for coverage of services performed “out of network” at the “in network” benefit rate if there are no providers with the experience required in the network. I have done this successfully and can offer suggestions to help – please feel free to contact me through this website for more information. Keep notes, including the name and direct telephone number of everyone you speak with at the insurance company. Once you’ve chosen a surgeon and set a surgery date, you will need to contact your insurance company for pre-authorization.
Choose a Surgeon
Determine who will perform your surgery. For me, it was important to find an experienced surgeon, as I believe that experience and a good outcome are directly related. Read Choosing a Surgeon: Ten questions to ask to help you through this process.
Find a Primary Care Provider
If you don’t already have a primary care provider in place, get one! Set up an appointment to establish a relationship with the physician before surgery. Take it one step further and schedule an appointment for 4 to 5 weeks post-op for a lesson in administering your monthly vitamin B-12 shot. If another family member will have the honor of poking you, schedule your appointment a time convenient for both of you.
Gather your Baseline Data
There are many adjustments and changes following surgery. Diet, nutrition, and rapid weight loss will be concerns, especially in the beginning. Ask your physician to do a Chemistry Panel, CBC (Complete Blood Count), Ferritin (iron), Vitamin B-12 and Vitamin D levels prior to your surgery. If you haven’t already had one, request a baseline bone density test. It is important to know what is normal for you. This way your physician will be able to identify changes in your levels. Making comparisons to some average range isn’t going to help identify what has changed for you following surgery.
Meet with a Nutritionist
A nutritionist can discuss with you the dietary and nutrition challenges you will face. Learn as much as you can up front so that you know what to expect and how to prepare for these changes. Read Eating after a Gastrectomy for helpful dietary information.
Monitor your Weight
Perhaps a weight loss or weight gain is in order to be in the best shape for your surgery. Studies show that the average weight loss following surgery is approximately 20% of pre-operative weight. Obese people tend to lose more. Talk to your surgeon to determine a good pre-surgery weight for you.
Arrange your Accommodations
If you have decided to travel to a location far from home for your surgery, make arrangements for accommodations, in advance, for family members who will be traveling to be with you during your hospital stay. Don’t forget accommodations for yourself too, as you will likely need to arrive a day or two in advance of your surgery for pre-operative testing and procedures. You may also need to stay for a short period of time after your release from the hospital before you are able to travel home. Check with your hospital for information about accommodations affiliated with the hospital. Many times they have options offered at reduced rates or at no charge for those who need such assistance. Some surgeons require that you have a bowel preparation on the day prior to surgery to empty out the entire length of your intestines and will prescribe a liquid laxative mixture. Be sure you have a prescription ready or filled, and a refrigerator or cooler to keep the liquid cold as it is typically mixed the day before use and must remain cold to make drinking more tolerable. Believe me, it’s true.
Develop a Support Network
In preparing yourself for the journey through prophylactic gastrectomy, be sure to ask friends and loved ones for things you may need help with, and for emotional support. Friends often want to help you but don’t quite know how; make small suggestions that you know would help you upon your return – a ride home from the hospital or airport, picking up your prescriptions from the pharmacy, making a trip to the grocery store, taking you to a follow-up appointment, or just stopping by to visit and see how you’re feeling. Make arrangements for help with young children if necessary. Lifting will be restricted (likely to a maximum of five pounds) for a period of time following your surgery. You may be ready for short daily walks – ask someone to join you for a walk around the block. Show them your scar! Your courage and determination to prevent this disease will be inspiring.
Create a Journal/Blog
It’s free, easy, and will provide support and encouragement by keeping you connected to family and friends. This is a great way to keep everyone up to date on your surgery and recovery, and eliminates the need to send mass mailings. Anyone you choose can post updates until you are ready to do so yourself. It is also a record of your personal journey, something you may enjoy reading later on. I’m still surprised by some of the things I wrote. There are many sites offering these services, my two favorites are Blogger or CaringBridge. Contact us if you’d like to share your journal with others through our Personal Stories page.
Read up. There are numerous posts, articles and links to reference materials on this site to help you learn more. Knowledge is power. We typically fear the unknown, so learn as much as you can. Join the Community Forum on site to connect with others. Contact us and we’ll get you connected with others who have been through this. Talk to others, particularly those who are upbeat and positive. I found this to be most helpful – not e-mailing, but speaking directly with others. Most who have been through this will take the time to help others when they can. Learn from their experience, but remember, each individual’s experience is exactly that – individual.
Be in a positive frame of mind going into this. I truly believe that a positive attitude and outlook makes a world of difference! Remember, though it may take one to two years, eventually the body seems to adjust to the absence of the stomach. Prophylactic Total Gastrectomy is considered curative for HDGC. The best part about life after surgery…is life! Know that you are choosing LIFE.