GOING THE DISTANCE TO AN ENDOMETRIOSIS SPECIALIST: TIPS & SUGGESTIONS TO MAKE THE TRIP EASIER
Originally written in 1995/Current Version 2016
Are you headed for your 5th laparoscopy because you haven't seen an improvement in your symptoms since your first? Taking your 4th round of medication because previous therapies didn't help at all? If you are no longer in control of your disease - and it has begun controlling you - it is time to seek the help of an expert.
An educated patient is an empowered patient, one who will take control of her healthcare. She realizes that seeing a specialist may finally enable her to break the cycle of misdiagnosis, inadequate surgery and inefficient treatment to which so many patients have been subjected. Most of us never imagined that we would one day have to travel when feeling our very worst in order to receive treatment for our endometriosis, but that is exactly what had to happen for many after exhausting all other costly, ineffective options. Know that you are not alone in considering the journey to an endometriosis treatment center! Until such time as a truly effective standard of care is adopted for the disease, many patients will continue to have to cross states - and sometimes, even oceans - to receive efficient care and get the help they need. Fortunately, there are a few ways in which you can minimize the difficulty of such a trip.
Choosing Your Specialist: Penny-wise, Pound Foolish:
The old adage certainly holds true in this instance. This is a major decision, one that should never be based strictly on convenience or cost. Making the right choice when it comes to selecting the center that will help you is priceless; making the wrong choice could cost you in the long run. Remember; this is your *health.*
Talk to the surgeon's previous patients. What was their experience? How did the specialist improve their health? Ask questions, no matter how small or insignificant you think they may seem. You will be investing a lot of time, money and effort into seeing the surgeon you have chosen; taking the time to make some in-depth queries about the level of care they offer may save you from making the wrong decision in the end. Remember, no two cases are alike and not everyone will have a positive story, but you can get a general sense based on multiple queries about your chosen surgeon.
There is bound to be insurance bureaucracy throughout the process, but it needn't discourage you. The first step is working with your newfound specialist's office. Find out their policy concerning insurance coverage and/or discuss payment options with them. Most centers that are not “in-network” providers, such as the CEC, are willing to discuss special arrangements for out-of-network patients, and chances are, as we do, they may also be willing to help with some of the legwork: obtain your approvals, fill out your paperwork, and submit your forms. Get all the financial details worked out upfront, before you schedule the actual surgery. Remember too that the hospital and other providers involved in your care will have to be checked as well to determine if they are in or out of network.
There is a good reason most centers of excellence like the CEC are not “in-network.” Payers typically try to limit the type, duration and number of surgeries that can be performed by a practitioner, and pay only marginal fees to those surgeons who take the extra time and effort to learn the high level of expertise needed to effectively treat endometriosis and perform meticulous, advanced procedures. However, insurance wrangling should not be an entirely daunting process that discourages you from going to a specialty treatment center. Most patients who wish to come to the CEC or centers like ours are successful in doing so.
Who, What, When, Why, Where? As in:
Who will be doing your surgery? Who will be assisting and what specific skills do they bring to the procedure? What will be done during the surgery? What pre- or post-op precautions are there, if any? What post-op prescriptions will you need? Be sure to get these filled prior to the surgery; you will want them accessible. When should you start your bowel prep, if one is required? When is the surgery? When are you needed in town for your pre-op? When can you expect to feel well enough to return home? Why is this surgery superior to previous treatment attempts you've undergone? Where, specifically, is the surgery to be done? Be sure to also find out where your loved ones can wait during your surgery. What is the most convenient way of getting to and from the hospital? Which leads us to our next topic…
…Planes, Trains & Automobiles!
You've chosen your treatment center, gotten the finances surrounding the procedure in order, worked out every detail. Now all you need to do is...get there. If you're fortunate enough, the center is within an hour car ride of your home. If not, consider your options:
Planes – probably the most expensive, but also the fastest.
Trains - a little cheaper, a little slower, and perhaps not even an option, depending upon your location.
Automobiles - How long is your ride home? If it is more than a couple of hours, you may wish to look into other transportation options or plan on staying longer in the area.
Chances are, you'll be heading to the airport soon enough. Before you start packing, here are a few tips:
Book your flight on the airline that provides the most frequent service from your area to your surgeon's location. You'll have many more flight options and can typically get a reduced or even penalty fare.
You should plan on waiting at least 72 hours after surgery to travel home, depending upon the distance and your surgeon's specific recommendations. Often, it is longer.
Don't be embarrassed to tell the booking agent why you are making the reservation. It is important that the airlines knows you are a medical patient. Ask about preboarding and wheelchair service for your return flight. You may even be pleasantly surprised with some unexpected special treatment, such as a complimentary upgrade.
Just because the trip isn't a vacation doesn't mean you can't enjoy yourself at all. Arrive a day or two early to do some sightseeing and have a little fun (see the end of this page for links to area accommodations and nearby 'things to do').
Stay local. Tell the hotel why you are there. They too need to be aware of any special medical needs you might experience while you are their guest - and they may throw in a complimentary service as well. A first floor room can also be helpful - the closer you are to your room following surgery, the better. Ask for their “medical” or "hospital" rate. The local hotels are usually aware that the surgical center treats many out-of-town patients and may offer a reduced rate accordingly.
Pack lightly! Remember that you are going to have to carry those bags back through the airport after your surgery. Pack the things you would normally want with you after a surgery; your favorite book, toiletries you need, etc. It's not easy to run out and buy these types of things when you are in a strange town, 2 hours post-op. Also be sure to pack clothing that is comfortable, both to recuperate in and to travel home in. Keywords: high-waisted sweatpants and loose dresses!
*Don't travel alone.* You are undergoing surgery and will need assistance from a loved one just as you would at home.
Remember - this whole process is not as ominous as it may seem. Any minor difficulties that need to be endured in order to obtain expert treatment for your disease might be viewed by many as a welcome exchange for the long-term benefits that could potentially be reaped. Most patients have never looked back in regret and thought it was a waste of time or money to travel to a specialist. Many have, however, looked back in regret that they didn't get to them sooner.
So - we asked the REAL EXPERTS to weigh in on helpful tips and tricks for coping pre, peri and postoperatively. Here’s the important feedback they shared. THANK YOU to all who helped contribute to this Tip List!
MH: Make a list of questions you have concerning all aspects of surgery – before, during and after. Think about all the things you do in your daily routine i.e. eating, drinking, exercise, sex, etc. Presurg (1-2 weeks prior), start doing deep breathing exercises to prepare the lungs (we also will be giving you an incentive spirometer post surgically). Take Vitamin C (as the CEC recommends) to prepare your body and boost the immune system. Treat yourself! A new pair of soft, loose pajamas – smock, dress, muumuu style so it doesn’t pinch your waist) will be a welcome addition postoperatively. Pre-purchase all the foods you’ll need (and want) to eat after surgery (remember, soft diet first few days) as well as fill all your over the counter meds, e.g. GasX, Motrin, Neosporin, a thermometer, Peroxide, throat lozenges, gentle wet naps (think: bowel prep!), stool softener (post op), panty liners (pre and post op). Good books, movies, broth, pudding, pillows and blankets will all help tremendously in the days after surgery. Post op constipation can be helped by Smooth Move Tea, GasX or laxatives, with your surgeon’s permission. Speaking of bowel preps, coconut water is a great alternative to mix your Miralax with. Sips of apple juice can also keep your blood sugar in check and the wetnaps/pantiliners will come in very handy. Massages, stretching, meditation, etc. can be very helpful for mental and emotional preparation. Talk to your body, let it know what’s about to happen and that it’s a good thing. Cry if you need! Express your fears and talk to your partner, family, friends, even your doctor – don’t go into surgery with too much fear. Education is empowerment. Prepare to be uncomfortable in post-op holding and for several days after your surgery. Flatulence, shoulder pain and of course operative pain are normal. The CEC and Northside staff will do all they can to help you. Recovery may take more than 2 weeks – be prepared for the possibility. Gentle stretches, breathing exercises, ample rest and sleep can all help.
KW: Listen to your body. You've come a long way and fought hard to get the very best care in the world for endometriosis!! Rest, stay hydrated, and use your pain meds as prescribed. Follow the post-op instructions and if you feel anything is out of the norm, call the office. Don't be a hero. Dust won't spoil. Your rug can wait to be vacuumed. In short, you've come a long way for care - don't screw it up and jeopardize your recovery. Surgery is an event but recovery is a process!
MM: I used a wedge pillow the first few days at home -- it allowed me to sleep with my torso and head slightly elevated, which made it much easier for me to get out of bed by myself without straining my core too much. It helped me regain a sense of independence in a situation where I was relatively dependent on family members.
AG: The stomach wrap they give you at the hospital is your friend. USE IT. keeping pressure on your stomach makes a huge difference in pain relief. I am not a fan of being on pain medication, so I tried to not take it. Don't do that! You need the medicine. It's a big surgery and you need time to allow your body to heal. Pain medicine is a must. Pre-op/bowel prep is intense, but necessary. Make sure you're comfortable and near a bathroom that night! You've dealt with so much pain and you are so strong because of it. I promise you after this surgery you'll feel better. Just be patient and respect your body's signals. You can do this!
RB: Stock up! Plenty of healthy and easy to prepare foods and drinks. Make extra food for dinner two our three weeks before and make freezer to microwave meals with the leftovers. Make and freeze fruit smoothies. Add yogurt, protein and spinach or kale. OTCStool softener, ibuprofen, Phillips, fiber tabs. Oh, and don't forget the TP and pads! Do. The. Laundry. I wash all my jammies, sheets and blankets.
AR: Do as much in advance as you can, and accept help in the weeks following. We prepped a couple months worth of meals and put them in the freezer. Crockpot meals were easiest. My mom stayed with me daily since my husband couldn't. She helped by doing dishes and laundry in the weeks following. We also went through the house prior to my surgery and cleaned really well so I wouldn't be too far behind when I felt up to it again. Buy some comfy pjs. I preferred gowns/dresses. Bringing a recorder (recommended by the CEC) played a part in my follow up with a normal OBGYN, as well as my insurance appeal.
MS: Hydrate hydrate hydrate both pre and post op - helps with dehydration, flushes the anesthesia, and helps get the bladder to wake up and not get a uti. Don't do anything strenuous but don't lay in bed either. Take short naps and then get up every hour and walk...even if it's just in circles around your house. The walking promotes healing...and gets rid of the gas pain that can be worse than surgical pain. Walk when they tell you to at the hospital. Don't lie flat...it makes residual gas pain flare up. The tummy binder is your best friend but give yourself a break from it off and don't make it too tight. Don't hesitate to call the doc after surgery if you sense something isn't right...its probably true. Don't be shocked if you still have pain post op. Prepare to have Lots of things to occupy your time...your brain will feel clear and ready long before your body.
MR: Follow the post op diet Dr. Sinervo recommends and for however long he recommends. I did not and I paid for it! Stay on top of whatever stool softener regimen you're put on. I stopped mine after having some issues (which was my fault for not following the diet) and ended up paying for that too. If you don't like cream of wheat or oatmeal, find out ahead of time what other types of food Dr. Sinervo recommends immediately post op and bring it to the hospital to have for bfast the next day (if allowed). When the nurses got me up to walk in the middle of the night I almost passed out both times (I remember being rushed to a chair in the nurse's station and having the smelling salts waved under my nose). They wouldn't let me try to walk again until I ate bfast but I didn't like any of the bfast food allowed that the hospital had available. So it took awhile for me to be able to walk my laps required for discharge. I would get up and walk laps every so often around the house and that helped with the gas pain but it's also important to not push yourself and rest!
From the 'Ask me About My Endo' Website:
CF: Do your breathing exercises! I didn't listen because I'm so young and healthy and don't smoke...NOPE. I ended up in the ER post op because of crackling and wheezing in my lungs. Listen to your doctors and body.
KR: Use GasX to help clear out the gas they fill you with. After surgery 1, I thought I was having a heart attack mother in law said get GasX and it was amazing. Made sure I had plenty on hand before I had my next 3 surgeries!
BT: Miralax all the way! Good support system, a flexible work schedule, and hope knowing that it's not if you get better -- it's when.
MJ: Post-op push clear fluids. Sleep. Keep moving around little by little.
SM: Post-op: Bring a recorder!!! What you don't recall or family cannot recall will all be there for you. Wedge pillow a bonus for rest and getting up. Pre-op: Do NOT be afraid to request prayer or a hug--these guys are servants of the heart as much as surgeons. (CEC NOTE: we have an unlimited supply of hugs and prayers!)
Read on to find area hotels and lodging, including bases for our military families. NOTE: travel is not included in our surgical costs. You are responsible for your own transportation and lodging.
JUMP TO THE FULL LIST OF LODGING RESOURCES HERE