If The Shoe Fits: Lymphedema Treatments & Surgery

Welcome & Thank You

 

I would like to take a moment and genuinely thank you from the bottom of my heart for taking the time out of your day to read my personal story. It has been quite a journey. Sometimes when life seems hopeless and we feel alone, we discover the importance of the kindness of others. I wholeheartedly appreciate all the love and support that I am already receiving. Again, thank you so much for being here. 

 

My Story

 

My name is Kiran. I'm 33 years old. I reside in Las Vegas, Nevada. I work in the hospitality industry. I've had to take time on & off since August 2018 due to severe health issues in regards to my rare chronic condition called —Lymphedema. During the past few years I've been in and out of hospitals from repeated cellulitis infections. I’ve also been in a very long process to receive surgeries that could literally change my quality of life forever! Unfortunately, insurance does not cover, because they believe the surgeries are experimental and or cosmetic—so now I'm finally asking for help please.

 

I was diagnosed with primary lymphedema at the age of 7, (1997). Bilateral, affecting both legs. I remember seeing many specialists trying to examine the root cause of my lymphedema. Unfortunately, there wasn’t much that they could do to help me. It was tough. As I continued to get older I kind of just dealt with it on my own. I never complained about the aches and the pain. I kept moving forward with a positive attitude and mindset. I kept my legs covered up that way the edema could not be seen and no one would ask questions, because only then society would accept me. I never spoke up about my lymphedema. Honestly, I felt a lot of shame. I feel my parents were only trying to protect me from getting hurt by others who didn't understand. I know that they really tried and did the best that they could for me during a time where lymphedema was not understood. It’s still not fully understood. I must admit though that same shame still lingers into my adult life. That little girl needed a lot of love, compassion, understanding, clarity, care and support. No one is at fault. It is what it is you know. I'm healing her. It made me very strong —sometimes too strong. Truth is: I would not be the soul that I am today without "growing through" what I did as I was growing up, —and I am so grateful for those difficult teachings.

 

I've managed my lymphedema with absolute great care my whole life. I take furosemide for fluid retention. Daily dry brushing. I wear my compression garments and bandages (wrapping). I sleep with my legs elevated every night. I'm thankful to have the Flexitouch to help with my lymphatic drainage that I'm required to use daily for an hour. I was going to physical therapy on and off, but it just gets expensive —insurance hardly covers for medical grade compression garments and visits for physical therapy. I exercise and stretch daily. I eat a very low sodium diet. I meditate and I pray.

 

I was hospitalized in 2016 for cellulitis on my right leg, unknown cause. I was treated with antibiotics and I recovered. I was then hospitalized in 2018 for cellulitis and lymphangitis on my right leg, leading to sepsis. That's when my life completely changed. I’ve been knocked down so many times, but I always get back up. I’m a fighter. Although, I wasn’t the same person after that experience. Emotionally, mentally, physically, and spiritually I felt extremely drained and hopeless. It’s been a rough road these past few years and it’s taken me a lot to get where I am today. I’m proud of myself for not giving up. I understand that it’s a life long battle. I was hospitalized yet again in –March (2020), October (2021), April (2022), November (2022), March (2023) for the same causes. I’m fighting through these flare ups, but enough is enough. There is no cure (yet), but I want a better quality of life for myself. I’m still young with so much potential and I believe these surgeries will help me get my life back.

 

The money being donated will be used to treat my right leg: SAPL surgery, and LVA (microsurgery), —it will cover the costs of: pre and post op appointments, hospital stay, physical therapy, medications, anesthesia, garments, and much more. It will also help me with previous medical bills.

 

Please feel free to follow my journey on Instagram: @kiransinghxo

 

Thank you again for taking the time to read my story. I really appreciate the love and support. Please feel free to reach out to me with questions, concerns, or even to just say hi! I’m forever and ever grateful for your help.

 

With Love,

 

Kiran Singh

♥️

PS: I’ve explained lymphedema and other medical terms below. I’ve also attached photos at the bottom of my post.

 

Hereditary (primary) lymphedema is a rare genetic developmental disorder affecting the lymphatic system. It is characterized by swelling (edema) of certain parts of the body. The lymphatic system is a circulatory network of vessels, ducts, and nodes that filter and distribute certain protein-rich fluid (lymph) and blood cells throughout the body. In hereditary lymphedema, lymphatic fluid collects in the subcutaneous tissues under the epidermis due to obstruction, malformation, or underdevelopment (hypoplasia) of various lymphatic vessels.

 

Severe cases of lymphedema can affect the ability to move the affected limb, increase the risks of skin infections and sepsis, and can lead to skin changes and breakdown. Treatment may include compression bandages, massage, compression stockings, sequential pneumatic pumping, careful skin care and surgery to remove swollen tissue or to create new drainage routes.

Cellulitis is a potentially serious bacterial skin infection. The affected skin appears swollen and red and is typically very painful and warm to the touch. Cellulitis usually affects the skin on the lower legs, but it can occur in the face, arms and other areas. It occurs when a crack or break in your skin allows bacteria to enter. Left untreated, the infection can spread to your lymph nodes and bloodstream and rapidly become life-threatening.

Lymphangitis is an inflammation of the lymphatic system, which is a major component of your immune system. Infectious lymphangitis occurs when bacteria or viruses enter the lymphatic channels. They may enter through a cut or wound, or they may grow from an existing infection. The most common infectious cause of lymphangitis is acute streptococcal infection. It may also be the result of a staphylococcal (staph) infection. Both of these are bacterial infections. Lymphangitis may occur if you already have a skin infection and it’s getting worse. This might mean that bacteria will soon enter your bloodstream. Complications such as sepsis, a life-threatening condition of body-wide inflammation, can occur as a result.

Sepsis is a serious complication of an infection. It often triggers various symptoms, including high fever, elevated heart rate and fast breathing. If sepsis goes unchecked, it can progress to septic shock — a severe condition that occurs when the body’s blood pressure falls and organs shut down.

 

When you get an infection, your body releases chemicals into your bloodstream to fight off the infection. In some cases, those chemicals can trigger inflammation throughout the body. That inflammatory response is sepsis. If it’s not treated promptly, sepsis can progress, lowering blood pressure and making it hard for blood to reach vital organs. As a result, the heart, lungs, brain and kidneys all can be damaged. If it continues, sepsis can develop into septic shock, a life-threatening situation in which organs begin to fail and blood pressure drops even more dramatically.

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