Urgent Surgery Needed for Lymphedema Relief (Ken Torbeck)

My name is Ken and I am from a small town north of Chicago known as Mundelein. As you read this or watch the companion video, I ask you to please be patient, as it is very difficult for me to ask for your help.

I am the type of person who always tries to help others. It does not matter if it is family, friends, or even strangers. If I have the ability to help, I am going to do whatever I possibly can. However, asking for help for myself is incredibly challenging and one of the most difficult things I have done. Nonetheless, I’m left with no other options.

Diagnoses

I have been diagnosed with a rare medical condition known as Lymphedema which has compromised my lymphatic system and lead to painful severe localized and persistent swelling in my abdomen, upper pubic area, and both my legs. The swelling is caused by a blockage in the lymphatic system forcing a buildup of lymph fluid in the soft tissue beneath my skin. At this time the doctors are estimating that I have between 125lbs (57 kg) to 200lbs (91 kg) of fluid trapped in my soft tissue.

Lymphedema, also known as lymphatic edema, or elephantiasis in later stages, is caused by a blockage or damage to the lymphatic system that runs through your body in parallel with your blood vessels. It is an important part of the immune system and helps to fight against infections.

What caused my Lymphedema?

I suffer from Secondary Lymphedema, a condition resulting from damage to the lymphatic system due to significant trauma or surgery. Approximately two decades ago, I underwent Roux-en-Y gastric bypass surgery for weight loss. Although the procedure was successful, I was not informed that this could be a potential complication. As with many individuals experiencing Secondary Lymphedema, the symptoms did not appear until several years post-operation.

While I have been dealing with this for several years, I have recently reached Stage III Lymphedema. Which has caused painful severe swelling in all affected areas and a burning sensation in my left leg, both of which limit my ability to walk or even find a comfortable sitting position. It has reduced the oxygen availability in my soft tissue, has interfered with wound healing, has stimulated fat stem cells to grow, and has provided a rich medium for bacterial growth resulting in repeated antibiotic resistant skin infections.

What will happen if I don’t do anything

If it remains untreated, I will continue to get worse and I will soon lose the ability to walk all together. My skin will start to harden, becoming like the skin of an elephant. I already have a few areas of hardened skin. I can expect to develop skin ulcers and maybe even a rare form of soft tissue cancer. The lymph fluid will continue to buildup, spreading to soft tissue in other parts of the body, until lymphatic system vessels rupture causing my death.

What can be done?

At this point I have only one option and that is surgery. Including Microsurgery to reroute my lymphatic system, bypassing damaged nodes and connecting lymphatic channels directly into my veins or transfer healthy lymph nodes to affected parts of my body. After repairing the lymphatic system, doctors will use liposuction to remove affected tissue and drain off excess lymph fluid. Finally, doctors will perform what is called a Charles procedure to remove the excess skin using part of it as skin grafts to repair any areas that have hardened.

Sadly, my insurance will not cover most of the required procedures or cover travel expenses required to get to one of the limited hospitals willing to treat me at this stage.

Why help me?

I have run out of options. This is Life Threatening. I am at serious risk of ending up like Joseph Merrick the man in the movie “Elephant Man.” If this was just about me I would continue to live with the pain and eventually give up. However, on January 4th, 2023 my life changed dramatically when my best friend, my kindred spirit, the most important person in my life, who I loved more than anything in the world died making it important that I stay around. The moment I found out about her death my focus in life became about her daughter who I have loved like my own. I need to be there for her. I need to be able to help her, advocate for her, and protect her. There are other people in my life that I need to be there for too. So, I can’t give up, I need to fight this, and I need your help to do so.

I need this surgery desperately, in order to free myself from this disease which threatens to turn my body into one huge leathery tumor. Please do what you can to help, and I will continue to do what I can to help others on a daily basis.