"Lymphedema Has Destroyed My Quality of Life" by Alex Lord

I used to be a professional dancer, traveling internationally and performing in other countries.

October 1999: Diagnosed with uterine cancer, I was given 8 views of radiation on a daily basis and chemo 3 times a week. Cancer treatments severely damaged my lymph system and created the lymphedema I’m now struggling with.

1. Lymphedema Has Destroyed My Quality of Life: Lymphedema has grossly deformed my body and no one wants to be near me or look at me. Due to the massive amount of fluid retention in my legs and body, it's exceptionally difficult to move around or even leave my 2nd floor apartment. To understand what people with lymphedema endure and suffer with: 1. Take four 1-gallon zip-lock baggies 2. Fill each one with water to equal a total of 35-40 pounds 3. Tape the baggies to your leg, from your knee to your foot. 4. Take another 4 bags and do the same with your other leg. 5. With this extra 80 pounds of fluid, walk around all day, going up and down steps, doing your normal activities. 6. Climb into your SUV or truck, go shopping, go to the grocery store, do laundry, stand and cook a meal, clean house, try to climb a latter or a stepstool to reach something on a high shelf, try to ride a bike, run or hike. 7. You have a very limited amount of energy due to the extra fluid weight you constantly carry around. It’s difficult to breathe due to fluid pressing on your diaphragm and filling your lungs. • Using lead weights on your legs is not the same because fluid slushes – it moves around – and you must regain your balance – regain your “sea legs” – with almost every step. • Now, envision a layer of skin covering these baggies and how extremely deformed your body appears. • Lymphedema does not impact just the legs...it’s also affecting my thighs. It can be anywhere on your body – upper arms, back, genitals, face, neck and lungs. • You may need a walker or rollator to get around. If you live by yourself, you are limited as to how much you can carry up or down apartment stairways. You pay extra for someone to help you with taking out the trash, groceries, shopping, etc. • When you get tired of this trial, you can easily remove that extra liquid weight. Lymphedema sufferers can't do that.

2. Discovery: When my symptoms first started, the doctors blamed me as being the cause of the massive weight gain or allergies for not being able to breathe. They totally ignored every indication I had lymphedema. I let multiple doctors know I was having issues breathing. WITHOUT any tests, doctors started arbitrarily prescribing various drugs for allergies, inhalers, etc. Help me here - which inhalers or antihistamines remove fluid from the diaphragm or the lungs? When the skin on my legs split open because my body could not retain that much fluid any longer, I didn't bleed, liquid flowed out of me, doctors blamed damage to my veins, my heart or my lungs. People with heart issues or venous insufficiency do NOT have their skin split open with only fluid draining out – no blood. When I was finally referred to a venous ultrasound specialist, the technician had to put incontinence pads under my legs due to the massive amount of fluid leakage. It was the technician – not the doctors – who recognized what was happening & suggested going to a lymphedema doctor.

3. Intentionally Medical Misdiagnosis: As a Certified Rescue Diver, I know “hyperbaric oxygen therapy is a well-established treatment for serious infections...The blood carries this extra oxygen throughout your body, this helps fight bacteria and stimulates the release of substances called growth factors and stem cells, which promote healing of the injured tissue” [www.mayoclinic.org]. When I met with my PCP, I requested a referral to a hyperbaric doctor & hyperbaric chamber for wound care. A few days later, I get a 7.30p call from a medical supply company wanting to deliver oxygen tanks to my home that evening. My PCP never informed me he had put COPD in my medical records. I realized a year later – when I was constantly getting calls to join COPD groups – COPD is how my [former] PCP justified sending me O2 tanks. He NEVER gave me a hyperbaric referral and he never took COPD out of my MIB. Also, putting a fictitious COPD in my MIB has caused me to be turned down for life insurance policies. Putting an intentional misdiagnosis in my records was unethical, petty, and spiteful – how DARE I suggest to HIM how to treat my wounds?

4. Lymphedema Specialist: Although I FINALLY got a referral to a lymphedema specialist, it was too late – I was already at the top stage of lymphedema. My original lymphedema doctor retired a few months later and my records were transferred to Dr. Andrew Moffat, Lymphedema & Wound Care, Stewart Medical, Jordan, UT. June to August 3, 2021: I still had open wounds, and four [4] doctors – my new PCP, Dr. Patel, with Exodus Medical, West Valley, UT, Dr. Moffat and two U of U Lymph and Wound Care doctors totally ignored the bacterial infection that had developed. “Cellulitis is a serious complication of lymphedema. People with lymphedema are particularly susceptible to cellulitis because the lymphatic system is damaged or overloaded and does not function adequately to fight infection.” – https://www.veinspecialists.com August 3, 2021: I was treated at the U of U Hospital, Wound and Lymphedema Clinic for my weeping wounds – the underlying cellulitis infection was totally ignored although two doctors examined the wound. Not a word was said about lymphedema or cellulitis. August 4, 2021: The West Valley City Fire Department Ambulance took me to Jordan Valley Medical Center Emergency Room – SCREAMING in pain from the infection. I was admitted to the hospital where they kept me on an airbed used for burn patients and sedated almost 24/7. It took five [5] weeks – 1 week at the hospital four weeks at Rehab – to resolve the cellulitis infection. Treatment could have been started: • 48 hours sooner when I was at the U of U Wound and Lymphedema Clinic. • 30 to 60 days sooner with either Dr. Moffat or Dr. Patel. Five [5] weeks of hospital and rehab care cost my insurance company over $91,000. It cost me 5 weeks of lost income and $6,000 in medical bills.

5. Cost of Living with Lymphedema: When caught early, lymphedema can be managed. Due to the unprofessional indifference of multiple doctors [Exodus Medical, Steward Medical and University of Utah Medical Center], I’ve gone from professional dancer’s legs to this: This is fluid, not fat. Fat people have ankles. I have folds of skin that droop over my foot and touch the ground. For the rest of my life, this is the disfigurement I have to endure. Obviously, these are no longer the trim, slender legs of a dancer. I can barely walk and can no longer run [I used to run marathons], bike, swim, hike or do anything requiring the use of legs. There are surgical procedures that could improve this condition – dramatically improving the quality of life for those of us suffering from severe lymphedema – but insurance does not cover these procedures. Cancer treatments caused the lymphedema. But after lymphedema develops, you medically get ‘kicked to the curb’ – without insurance to cover lymphedema treatments, you are literally not worth their time, effort or energy. Severe cases of lymphedema can increase the risks of skin infections, sepsis and can lead to skin changes and breakdown. Doctors only notice your condition when you’re being admitted to the hospital, it cost over $100,000 to treat and if there are billable codes to submit. I’m not the only person with lymphedema who had been misdiagnosed or pushed aside by a PCP, specialists and other doctors. Insurance doesn’t cover it so there is no point in treating it. Doctors get paid for other procedures, not for lymphedema. Doctors ignore early stages of lymphedema and then – when lymphedema reaches the severe stage – doctors continue to ignore the patients who really need them, dismissing the disease with the statement, “There’s nothing that can be done.” The ONLY solution for lymphedema is for patients to constantly purchase expensive compression garments [$90 - $250 per single wrap] that need to be replaced every 6 months. And you may need multiple garments in various sizes – 2XL, XL and L – so when compression is effective, you can use the smaller size. If I leave my HOT, double-layer, felt compression wraps off for 12 hours, I have to start back at size 2XL – and this is just for ankle to knee – and NOT covered by insurance. If insurance and Medicare covered lymphedema – had billable codes for lymphedema – every doctor would have been treating my condition in half a heartbeat. On top of the thousands of dollars I’ve spent on compression wraps, my insurance paid over $91,000 in hospital claims – with the potential of this happening again. Final Note: The hospital and rehab claims were for the wound treatments and the ensuing cellulitis bacterial infection – all caused by lymphedema, induced by intense cancer treatments. By not covering lymphedema, the insurance companies are being “penny wise and dollar foolish.” They’re saving pennies but spending $100,000’s – possibly Millions – treating the damage lymphedema creates.