Misdiagnosed Lymphedema

LYMPHEDEMA WAS MISDIAGNOSED FOR 17 YEARS!

Rita ended up in the hospital again, this time with sepsis. She had been here before due to infections and wounds caused by her legs that continually swelled. Time and time again, she had sought medical help but to no or little avail. After the hospital stay came the nursing home. Then finally home again with a physical therapist to help her regain some of the ground she had lost, spending so much time immobile.

This was a new therapist, which disappointed Rita. She liked her last home health therapist a great deal. However, she had little say as her old therapist had left the organization. Finding a good therapist can be challenging at times. Now she says that her new therapist, Monica, was a God send. She was the first person in nearly 17 years who recognized and properly diagnosed her condition, lymphedema.

THE SWELLING BEGINS

Seventeen years ago, Rita had a complete hysterectomy. Shortly after that, she and her husband noticed an area of swelling on the right side of her abdomen. When she consulted the doctors, they told her not to worry; it was due to the surgery and would go away. Well, it did not go away. Instead, it moved down into her thigh and upper legs, where it continued to grow and swell.

She developed a prominent lobule behind her right knee. Her lobule made it difficult for her to get around. As the lobule grew, she could not enjoy many activities she had always loved. She could no longer garden or hike in the Virginia Mountains, where she and her husband had a cabin. The lobule became so large that Rita would rest it on a pillow as she sat in her recliner. She put a baby diaper underneath to soak up the weeping from a leg that had swollen so large that the fluid had nowhere else to go.

NO HELP ANYWHERE

Still, she could get no help. Every time she sought medical assistance, they would tell her she had a weight problem. Finally, one doctor examined her leg and said, “I’ve never seen anything like that; I don’t know what to do with that!” At which point Rita was reduced to tears. No one would or could seem to address the swelling issue, and the lobule continued to grow. Finally, her son researched the problem and suspected it might be lymphedema. When they suggested this to the doctor, he told her, “You have way worse problems than that; here’s the name of a bio-gastric surgeon.”

The inability to walk properly because of the size of her legs caused many problems over the years. Weight gain, issues with her hips and back, not to mention numerous infections and wounds – some landing her in the hospital. It’s hard to understand why no one addressed the lymphedema or would even consider the possibility. Was it because she was a large woman, and that was all they could see? Even when brought to the doctors’ attention, they still misdiagnosed lymphedema. Thankfully, there was a home health therapist that recognized the condition and was able to address it. Finally, Rita got the help she needed after so many years.

LYMPHEDEMA TREATMENT

Monica, her home health therapist, began MLD (manual lymphatic drainage) and got her into a Medi Reduction Kit to address the main issue for Rita, which was her right thigh and the lobule that so often caused wounds and infections. She also put her into a lower extremity wrap garment made by Sigvaris called the CompreFlex, so that the fluid didn’t travel distally. Within a very short time, her lobule was no longer hard and had reduced significantly in size. It no longer looks like a basketball but a deflated sack. As a result, Rita can now move and walk much better and is regaining her ability to care for herself and her husband.

Monica now has both of Rita’s legs wrapped and is doing much better. I believe it’s not just her quality of life that has improved, but her outlook on life. Chronic diseases, such as lymphedema, can affect one’s emotions. Finally, however, Rita found someone to listen to. Finally, someone understood the condition and the problems she had been going through. Someone could help, and someone did.

250 MILLION SUFFER FROM LYMPHEDEMA

Over 250 million people around the world suffer from lymphedema. A parasitic infection caused by a roundworm is the number one reason. It affects more than 5 million in the United States. However, the number one cause in the US is damage to the lymphatic system due to cancer treatments. Lymphedema has no cure, yet it can be managed and treated, especially if caught early.

I am so happy for Rita but also sad that it took so many years for her to be heard. If this issue was addressed when the problem arose, would she have the matter with her hips and back? Would she have had to spend so much time in the hospital with wounds and infections? Would she need home healthcare? Seventeen years later, this condition becomes much worse and more challenging.

Lymphedema is a serious problem that we need to address now. With the aging population, the increase in surgery and medical treatments, and obesity in this country, the problem is not going away. Lymphedema is misdiagnosed way too often. It’s time to put an end to the ignorance of this condition! Knowledge is power! Be your advocate, and educate your physician and medical team if necessary. It’s time to speak up, loudly if need be. Together we are stronger ~; we are empowered!

Disclaimer – This blog is for general information purposes only. Furthermore, the information contained in this blog is not a substitute for medical advice – always consult a licensed healthcare professional for advice on your specific condition.