So I told you that I want to share my story about my life with lymphangioma. Since it’s a very unknown disease I start with trying to explain what is.
Ok, I try to explain it with my own words. It’s a disorder of the lymphatic system what causes tumours. Mostly it appears shortly after birth. In 90% of cases it appears in the face or neck. More rarely is my case. I have it in my abdomen. Yes, I have this from my day of birth. The only thing what was seen was a little haemangioma on my left hip. When I was 2 years old, doctors removed it during a surgery and they thought that was it. But sadly it’s not that easy to fight this disease.
During my childhood I had severe back pain, stomach pain, nausea and I often collapsed. I went to many doctors but no one found the reason. It was suspected it came from because I was underweight and grow too fast. They even thought about epilepsy so I had to take more tests. All without an result. Until our family doctor didn’t know what to do anymore so he sent me to a colleague who sent me to a CT (Computed tomography) where finally the huge tumour inside of me was seen. I was only 12 then. The tumour was from my kidney till my bladder on my left side. During the 12 years it was growing huge and now it makes sense to me why I always was so skinny.
Soon after that I had another surgery where I lost so many blood that I died. Fortunately I could get rescued but when I woke up from narcosis, I was so weak that I couldn’t move not even speak. I still was more dead than alive. I needed many years to recover. And that I needed two times every year a surgery hasn’t make things better. Again I was sent to another doctor. He was the only real expert, who know everything about lymphangioma. He used a less strenuous surgical method what I could stand much better. He promised me “to make me healthy again” but he didn’t know how difficult it is to fight this disease. He tried his best and I’m sure only because of him I’m still alive.
When I was 14 something really bad happened to me during another surgery. The professor who always was doing my surgery couldn’t do it this time. He was called to an emergency when I was already prepared for the surgery. So he gave me into the hands of his colleague. That was a big mistake! He hurt a nerve from my left leg and from this day it’s partially paralyzed. When they found out after surgery my professor got so mad at his colleague. He came to me and told me that he suspended the responsible doctor. Also he apologized for this fault. But I told him that it was not his fault so he hasn’t to apologize but his colleague. Till today I never got an apologize from this doctor.
I had to visit the hospital until I was 17. Then we thought we’ve finally beaten the lymphangioma. It was okay. I did my school again, all that stuff I missed, I tried to get a job. But I was not strong enough. I even tried it in a company for people with disabilities but I couldn’t handle it. The chronic pain was too heavy. Lymphangioma is very sensitive to weather changes and to infections. So invisible in me it was already growing again. If we compare it with cancer, the cancer can be fought with chemotherapy. That’s the devilish thing about lymphangioma: if you can’t remove every little piece of this tumour it will always come back. Lymphangioma is a so-called benign tumour disease where chemotherapy doesn’t help.
My currently status is this: I have tumours in my liver, spleen, and intestine. I’ve been told I have to avoid stress because it can make the tumour grow. I have long and strenuous phases of chronic pain and nausea. The chronic pain is daily. The doctors gave up on treatment. It’s too dangerous for me and it’s not said if it would make me feel better anyway. I’m on painkiller every day.
But I don’t give up. Okay, I can’t go working but I try to live my life the best I can. I try to strengthen my body with physiotherapy, have changed my eating habits and do little workout 3 times a week. I made it to be strong enough to travel to see my favourite bands live, to see new places and to meet new people. It was almost too much for me. Often I almost collapsed or couldn’t bear the chronic pain but I made it somehow. I am strong. I know, I can’t win this battle anymore so I gave up on fighting against it. I only try to make all my dreams come true, to enjoy the rest of my life the best I can. As long as it will last.