What You Need to Know
The Dr. Marga Practice group is committed to providing you the highest standard of lymphedema education, prevention and treatment available in the US today in the context of microsurgical breast reconstruction and vascularized lymph node transfer Vascularized Lymph Node Transfer VLNTx℠. We appreciate the opportunity to work with your unique challenge and would like to share with you some essential information to make this process seamless as we move towards your final goal. Much of this information will be familiar, but some may not and will be re-enforced throughout your stay with us.
A "Lymphedema Care Tote Bag" and "Care Plan Notebook" will be provided to you at your pre-operative appointment with Dr. Marga to coordinate your journey. Within the notebook, you will find essential reading materials, discharge medication prescriptions, an Air Travel Letter and a JP Drain Log. The reading material packet includes specific information on microsurgical breast reconstruction in addition to lymphedema risk reduction, certified lymphedema therapist education/selection, lymphedema conservative treatment recommendations, post-operative exercise and air travel recommendations.
All patients independent of whether you have active lymphedema or you have an existing or impending "at risk" extremity or surgical site should review the National Lymphedema Network Consensus Papers provided to you in your Care Plan Notebook prior to surgery.
"In the main stream, "at risk" extremities are arms or legs with prior or upcoming lymph node resections (whether a sentinel lymph node procedure or full lymphadenectomy). Risk is even higher for those patients requiring irradiation... In more conservative circles, ANY surgical procedure, for example a prophylactic simple mastectomy with no lymph node removal in a BRCA positive patient, may precipitate lymphedema in the ipsilateral extremity or trunk area. Therefore, we elect to educate all pre-surgical patients with regard to lymphedema as all are "at risk"... Recent studies have shown that early detection and treatment of Stage 0/1 lymphedema can reverse this devastating illness. Lymphedema Education and Prevention are key components of any safe and successful cancer reconstructive center of excellence."
- Marga F. Massey, MD, CLT, FACS
Dr. Marga will address your personal risk for the development or escalation of pre-existing lymphedema in your surgical sites at the time of your pre-operative evaluation. Further, Dr. Marga is pleased to discuss your unique situation and personal level of concern related to phlebotomy, IV placement and blood pressure measurements both intra-operatively and thereafter.
Good discharge planning starts prior to surgery as medications thereafter may interfere with your ability to understand or recall essential components. As such, you will visit with our Certified Lymphedema Therapist prior to your day of surgery to review the essence of Manual Lymphatic Drainage and Foam-Based, Short-Stretch Compression Bandaging. 4-Extremity pre-operative measures will be obtained. You will have time to ask questions and familiarize yourself with a typical treatment sequence.
SPECIFIC DISCHARGE INSTRUCTIONS:
Follows are very specific discharge instructions for all of our patients. Many of these instructions have evolved from true patient experiences as Dr. Marga has no true sense of humor! Please review these instructions now and daily with your care assistor while you are hospitalized. Repetition is the key to success in mastering these issues under the handicap of post-operative medications. Further, issues that are important to you initially in the hotel will not be the same as when you arrive home and are feeling stronger and ready to do more.
Lesson #1 - Contact Phone Numbers: Please place our office number 866.446.0962 and Dr. Marga's cell phone number 843.743.8989 in your cell phone in addition to our website address www.drmarga.com. Please place these numbers in the phone of your family members that are traveling with you. Please feel free to call us if you have questions or concerns (or even if you get lost). We are here to help!
Fill all medication prescriptions provided and take them as instructed after discharge from the hospital. It is best to have your family start working on this early as some pharmacies have difficulty stocking prescribed blood thinners as Arixtra™ and/or Lovenox™. Further, it allows some time for the pharmacy to work with your insurance company for coverage.
Clean hands are important to all aspects of your recovery. Please make sure ALL health care professionals and your family members wash their hands with soap and water or use a hand sanitizer prior to assisting you in any way while you are in the hospital and while recovering at home.
Strip your JP drain tubes with an alcohol wipe or hand sanitizer before and after meals and before bedtime (7 x per day) – "The Lucky Seven". Write down the amount of fluid you empty from the drains in your JP Drain Log. Keep up with your 24-hour totals at the end of each day. Do not put anything inside your JP drain tubes – this includes water, alcohol, hydrogen peroxide, betadine or clothes hangers. You can't strip your JP drains too much – but you can easily strip them too little. So, Strip On!
Please apply Betadine to your surgical incisions one time daily and keep you wounds covered with a dry dressing or clean washcloths. Your bra and liposuction girdle should be adequate in holding your dressings/washcloths in place. Please avoid using tape on your skin... tape is evil!
You should be taking an oral antibiotic up until 48 hours after your last JP drain is removed. If you did not receive an antibiotic prescription or you have no pills remaining, please call your Personalized Care Coordinator.
All patients will be provided with an "Emergency Antibiotic Prescription" to be taken only if you experience any signs of infection (redness, tightness, unexpected or sudden swelling, rash, or fever) of your lymphedema or "at risk" extremity or surgical site after removal of your JP drains. Fill the prescription and carry this antibiotic with you at all times. If you believe you may be having an infection, take the first pill immediately and then as directed on the prescription. Please notify your Personalize Care Coordinator by phone. If you have fever greater than 102 degrees, please report to your nearest Emergency Room and have the Physician on-call to phone Dr. Marga on her cell phone.
You should be walking at least short distances before and after each meal and before bedtime. Buttock- based reconstruction patients (GAP flaps) should avoid the elliptical or stationary bike until 3 weeks after your donor site drains are removed. The treadmill is fine. Walking in the air-conditioned mall or outside on a relatively flat path is best as you increase your endurance. Short frequent ambulation is important to prevent blood clots in your legs (referred to as a deep venous thrombosis or DVT) that may lead to a blood clot in your lung (referred to as pulmonary embolous or PE) that can be fatal. Pain and or swelling in your calves or behind your knees may be a warning sign. Please contact us immediately if you have concern for a problem in your legs, a new sharp chest pain or shortness of breath.
You should wear your TEDS compression hose on your legs during car and air travel home. Remember to walk every hour of your trip home (even on the plane). Compression hose will be provided to you at time of discharge from the hospital.
You will be discharged on a stool softener named COLACE™. If you develop diarrhea, stop the stool softner and contact us immediately. Diarrhea is not a normal part of recovery after surgery and should not be neglected as it may lead to a life-threatening condition.
Know the difference between you pain pills and your stool softener... If you repeatedly take a stool softener for pain, you will develop diarrhea and continue to hurt!
All patients may shower UNLESS you have a YELLOW BOLSTER sewn to your wound i.e. in the case of a free nipple graft or skin graft. If you have a YELLOW BOLSTER, take a bird-bath and try not to submerge your wound in the water – You are not a submarine! Don't forget to wash your JP drain tubes and bulbs while you are there... They get sticky and love to get a touch of soap and water too!
Do not submerge any of your wounds in water (i.e. the bath tub or swimming pool) until all of your drains have been removed for a minimum of 2 weeks and your wounds are completely healed. No hot tubs for a minimum of 2 months after surgery. Patients with active lymphedema should avoid hot tubs for life.
Please wear your seatbelt when traveling in the car or while on the plane. Beautiful breasts will not matter if you are ejected from the car and you sustain a head injury. And remember, NO Driving while taking pain medications.
NO LIFTING > 5 LBS FOR SIX WEEKS! NO EXCEPTIONS!!!!
You should limit your arm lifting above 90 degrees on the side of a sentinel lymph node procedure, axillary lymph node dissection or Vascularized Lymph Node Transfer VLNTx℠ for 2 weeks to promote lymphogenesis... bridging of new lymphatic vessels. Do not allow care assistors to support you under such an arm for 3 months.
Limit demanding arm exercise... Normal range of motion stretching exercises like "wall walking" are encouraged but no archery, no boxing, no baseball, no bowling, no vacuuming, no mountain biking, no downhill skiing... FOR SIX WEEKS!
Please do not jump on a trampoline even if it has a handle and is recommended by a reputable cancer center in the Northeast – we know who you are - You might fall off... and bouncing is not good for your microsurgical flaps!
Fear the milk container and OJ bottle on the top shelf of the fridge. If it slips and falls on your chest, it may injure your flaps.
Stay away from large, excitable animals that might push you down or cause a fall.
Watch out for the heads of young children trying to hug you. The "head bonk" from an excited toddler has been a common Utah challenge. Further, a tight squeeze from an adult is not so great, so be careful about that too.
Use a wheelchair in the airport – it may protect you from people running to the gate! Have your "Air Travel Letter" handy so you will not have a problem with Homeland Security.
You should start wearing a lower body liposuction compression garment once you arrive at home after Stage 1. You may enjoy the split-crotch, eye-hook, zippered, rib cage-to-knee variety we provide (i.e. the "dominatrix" for breastcancer.org bloggers... eek!). The "dominatrix" is a must however after Stage 2 liposuction from the time you leave the operating room up to 6 months. An extra liposuction garment will be provided to you at the time of discharge from the hospital at Stage 1 and Stage 2 so you will have extras! Woo Hoo!! We strongly suggest wearing a soft cotton panty overtop to maintain a safe level of perineal hygiene. Such panties will be provided to you at the hospital.
Helpful Healing Hint: If you chose SPANX™ or Marena™ type garments, you may consider creating a "split-crotch" variety so you do not have to pull the tight garment up and down each time you visit the restroom. You should still wear a soft cotton panty overtop.
Helpful Healing Hint: You can paint the eye hooks with brightly colored nail polish so you can see the hooks more easily.
Please wear a soft bra (no underwires) for a minimum of 6 weeks. It is important to have support to your flaps even while in bed at night. Front-closure cotton bras with no seams are best. Several starter bras will be provided for you at the hospital for use during your stay with us. A transition to a shelf bra camisole at night at six weeks is a good transition prior to going commando!
It is very important not to sleep on your flaps for a minimum of 6 weeks i.e. no "belly flop" sleeping.
Pressure as this on your breast or Vascularized Lymph Node Transfer VLNTx℠ flaps can cause irreversible injury to your reconstruction that may require additional surgery. The number one cause of flap failure after release from the hospital is trauma or undue pressure to a breast or lymph node transfer flap. Great care should be focused on preventing "sleeping misadventures" and falls.
Patients with Vascularized Lymph Node Transfer VLNTx℠ flaps to the axilla may not use crutches for 24 months. Should you have knee surgery or a fracture, please request a walker.
Do not resume your Tamoxifen until 3 weeks after surgery.
NO SMOKING (FOREVER!).... Avoid second-hand smoke.
You may resume sexual relations 1 week after your last JP drain is removed. Start on–the-top, in a position of control, and take it easy!
Please see you local physician "Helper Doctor" within the first 5 days of arrival to home. They may remove your JP drains when the output is 30 cc or less per drain / 24 hours x 3 days. We will help you determine when it is time to remove your drains. Dr. Marga is pleased to speak with your Helper Doctor directly for any issues or concerns.
New chest pain and shortness of breath is not a normal part of recovery at any time. If you have an acute onset of chest pain or have difficulty catching your breath after discharge from the hospital, report to your local Emergency Room without delay. Your Emergency Room Physician can contact Dr. Marga at 843-743-8989. If you happen to be in the Emergency Room without this number, remember that Dr. Marga's cell phone number appears on our website www.drmarga.com in the contact section.
You should be speaking to your Personalized Care Coordinator at least 2 times per week. Please call them to check in to review your drains, energy levels, wound care and any other questions that may pop up! Do not be afraid to call us – and remember, please email Dr. Marga with weekly photos and questions.
While in the hospital and at the time of discharge, you should place your lymphedema compression bandages (all of you will have them – lymphedema or not!) in your Lymphedema Care Tote Bag along with your extra donor site compression garments and bras. Do not forget your grey and orange foam (1-2 large and 2-4 small pieces). Bring this bag with you when coming to the office for your visit with Dr. Marga in addition to your Care Plan Notebook (specifically, the JP Drain Log). Dr. Marga may make adjustments to your compression foam. Additionally, we will add a copy of your Operative Report, CTA/MRA Report, Pathology Report and Discharge Summary to your notebook so you will have all the information you need when returning home to your "Helper Doctor".
Do not forget to bring your Lymphedema Care Tote Bag (Care Plan Notebook and Compression Bandages/Foam) with you for Stage 2. Stage 2 is a continuation of your care and we wish to provide you with a coordinated plan of ongoing lymphedema education, prevention and treatment. We will replace worn-out bandages and supplies as needed when you arrive for Stage 2. Replacement supplies can be ordered online at www.lymphedemaproducts.com if you require replacement supplies sooner.
Lymphedema patients having had a lymph node transfer should see your Certified Lymphedema Therapist (CLT) within 48 hours of arrival to your home. Vodder-based Manual Lymphatic Drainage (MLD) should occur 5x/wk x 4 weeks, then 3x/wk x 4 weeks, then 1x/wk x 8 weeks with a focus on educating you and your family member regarding skin care, self drainage techniques, compression bandaging placement and exercise/range of motion for your lymphedema extremity (aka, Phase 1 of Complete Decongestive Therapy). You should wear a foam-based, short-stretch compression bandage 23-hours per day for a minimum of 8 weeks. This time frame may be considerably longer for lower extremity patients and more complex arm patients. Dr. Marga will discuss this with you prior to your discharge. Let us know if you need assistance identifying a qualified CLT in your area. We can help.
Pure "at risk" patients (no history of lymphedema of any type) should see your local Physical Therapist (PT) for increased "Range of Motion" (ROM) exercises during recovery. We will provide you with a prescription. This is to prevent you from suffering a frozen shoulder in the setting of mastectomy. Be sure to let us know if you sense a feeling of "heaviness" or even minor swelling in your arms after arrival to home and we will transition you to a CLT. If you prefer, it is perfectly fine to see a CLT for ROM initially – however, CLT's are harder to find in many areas of the country. And remember, both Physical Therapists (PT) and Occupational therapists (OT) can be certified in CLT! Alphabet soup! Call us if you have any concerns regarding the selection of your therapist. Dr. Marga is happy to discuss your treatment plans with your home therapist! She loves other CLT's – they never ask for free cosmetic surgery!
Never, never, never use ace wraps to treat lymphedema or as prevention for an "at risk" extremity. Short-stretch compression bandages are different from ace wraps! And, they cost more so do not let anyone cut them off! Atypical arm bandage is in the range of $200. Legs – oooooooo, much more!
A new compression garment should not be ordered by your home therapist until your limb volume loss has stabilized (2 months minimum). It is important that you always wear a glove in addition to your sleeve; and, your sleeve should not stop on your upper arm, but extend over the shoulder. Compression garments are a reward for excellent post-operative compliance and are for daytime use only. Foam-based, short-stretch compression bandaging should continue at night. Its best to check-in with us prior to spending money on your daytime garment as Dr. Marga may recommend that you wait a few more weeks. Garments ordered too early may be too big for Phase 2 of your recovery. Leg patients should be seen by Dr. Marga prior to discontinuing Compression Bandaging in the daytime – no exceptions.
Compression garments are expensive and you should only work with experienced "Fitters". Please contact us for more information. Dr. Marga is a Certified Fitter for Jobst and would be happy to address any of your questions or concerns. Do not be alarmed if your "fitter" relates that you would do best in a "custom" garment. True lymphedema patients most often require "custom" garments that come at a greater cost (in dollars and in time to receive) while "at risk" patients often can be well managed with an "off-the-shelf" garment. Success is in the attention to details and a well-fitted custom garment is priceless if you need it!
We do not recommend investing in a "nighttime compression alternative" until you have had an extensive follow up evaluation with Dr. Marga given their cost. In general, Dr. Marga prefers Solaris™ and CircAid™ over Peninsula Medical as the ReidSleeve® can be too "bulky" for most patients.
DO NOT USE YOUR PNEUMATIC COMPRESSION PUMP EVER AGAIN... Dr. Marga is a Certified Lymphedema Therapist with training in Vodder-Based Manual Lymphatic Drainage (MLD) techniques in the context of Complete Decongestive Therapy (CDT). We strive to individualize your care needs but prefer that none of our patients use pneumatic compression pumps after surgery. Dr. Marga will be able to discuss this issue with you further at your post-operative appointments. Again, unless instructed otherwise by Dr. Marga, pack up your pump and put it in storage.
Vascularized lymph node transfer patients will receive a DVD Extremity Exercise Disk that illustrates home exercises to be completed daily when arriving home. Remember that these exercises are done while wearing your foam-based short-stretch compression bandages. Never exercise without some form of compression of your involved extremity (initial compression bandages with graduation to a compression garment or aqua-exercise).
Lymphedema patients participating in aqua-exercise should not wear compression bandages or garments while in the water. Further, you should exercise caution when swimming in fresh or saltwater as the risk for injury is higher than exercising in a pool. Jellyfish stings and cuts from submerged glass/metal/branches can lead to significant infections. Regrettably, man-made tops nature in this one regard.... Don't forget your sunscreen as sunburns can lead to infection, and enjoy the pleasure of the water. We are all mermaids (or mermen) at heart!
Lymphedema patients should consider daily "Journaling" to include your diet and observations of your clinical progress. Low fat/ low sodium is best with a caloric intake not to exceed 2000 calories daily. Should you elect a weight loss program, please work closely with you home primary health care provider and do not exceed more than 2 pounds of weight loss weekly. Weight Watchers™ is a wonder program to explore.
If you have ANY questions or concerns, please phone your Personalized Care Coordinator at 866-446-0962. Dr. Marga is available by email at email@example.com for non-urgent concerns. Please know that Dr. Marga receives more than 200 emails daily and she tries very hard to keep up with you girls! Forgive her if she gets behind by a day or two.
Lastly, we would like to thank all of our patients who have elected to participate in our IRB-Approved Clinical Outcomes Studies. We greatly appreciate your efforts in supporting evidence-based best medical practices. Future improvements in medical care can not be developed without your help - Thank you bunches! We will be contacting you in the future for interval pain, patient satisfaction, and lymphedema questionnaires.
Patients participating in our IRB-approved clinical outcomes studies may withdraw at anytime. Please contact Dr. Marga in writing either by email (firstname.lastname@example.org), certified ground mail / FED-Ex (505 North Lake Shore Drive, Lake Point Tower Suite #214, Chicago, IL, 606011) or FAX (800-630-3631). We will respond to your request in writing to confirm your withdrawal.
The Dr Marga Practice Group is a participating member of the National Institute of Lymphology™. To learn more, please visit our website at www.nilymph.com.