After these operations, I did a lot of rehab and was on sick leave from my job. In March, my sick leave ended and I was supposed to start working again, even though my knee wasn't quite 100%. But from around January until I was supposed to start working again, I began to feel that my energy was gradually declining. My gym sessions started going from 2 hours to 1 hour, and eventually to only 20 minutes. Other symptoms that were getting worse were daily headaches and a ringing sound in my ears. I thought it was just tinnitus. I started having daily nosebleeds and when I tried to go out and run, I just collapsed every time. I started going to the local health center where I met a doctor who thought my symptoms pointed to tension headaches.
In April 2024, I no longer felt like a human being
In April 2024, I no longer felt like a human being, I could barely take a few steps without becoming extremely drowsy and dizzy. I went back to the same doctor at the health center and thought that all this was due to my stiff neck. So he started massaging me and asked me to check my eyesight too. There were no problems with my eyesight.
Another week passed, and I now also started getting small bruises all over my body, small petechiae as the hematologist calls them. Blue/purple spots that started covering different parts of my body. I went to the health center again and this time the doctor gave me a referral to the neurologist at the hospital, but not as "urgent," so I would have to wait about 3 months. I went home that day and felt completely abandoned by the healthcare system.
When I got home, I called 1177 instead. I told them all my symptoms and showed them the visible symptoms on my body. They arranged another meeting at the health center, but with a nurse this time.
I went to the health center where they took a quick blood test from my finger and I waited for a while with the nurse. When the result came, I quickly noticed from his facial expression that something was wrong. He called for a doctor and they said that I had quite acute anemia. I had to be rushed by ambulance to the emergency room at Umeå University Hospital. There I was admitted quickly, and they took several blood tests on me. Since I already had very low blood count (low Hb), I almost fainted on the stretcher.
After all these blood results, my new doctors asked me if I had lost blood in various ways. But I replied that I had had quite a lot of nosebleeds, but it was unreasonable that that could be the answer to my Hb being at 63.
They went away for a while to check the remaining blood results, when they came back their facial expressions had also changed and their tone of voice felt more empathetic. They just said that the hospital transport would take me up to the Hematologist. I just thought I would get a blood bag and then I would get to go home.
I had never heard of the Hematologist before, so I didn't understand what it meant
I had never heard of the Hematologist before, so I didn't understand what it meant, but when I arrived at that department it hit me, it said cancer center on some of their signs up there.
I got a room and some doctors came in and told me that I have acute bone marrow failure and that everything pointed to me having acute leukemia and that I had to start treatment after that. I had to call my family and friends who live in other countries and cities and tell them about my situation. That whole night I received several different types of blood bags. It was because not only was my Hb low, but also my platelets, which were at 4, when they should be around 250. Low platelets make it impossible for me to heal, so internal bleeding or just a small cut can be critical in my situation. I had no functioning immune system, so the slightest infection or virus could take me down.
The days after were packed with bone marrow samples, biopsies, and operations for a piccline, which is an entry I had in my bicep.
After the result that my disease is severe aplastic anemia, I understood that it was serious. I lived constantly with the fear of meeting people since I couldn't risk getting sick, or hurting myself, since I cannot heal. So from April until October 2024, I lived in isolation, mostly at the hospital since I had several blood poisoning, infections, inflammations, internal bleeding. There were several times I was instructed to inform my family, who are in other places in Sweden, that I might not survive much longer. I got appendicitis one evening, in my situation you are powerless since I cannot be operated on. I do not heal and if they were to open me up, I would be completely unprotected against the smallest bacteria that could have gotten into my body. After strong courses of antibiotics, they calmed down.
There were several times I was instructed to inform my family
The weeks after, I got sepsis and other infections and the weeks after everything could repeat itself with another sepsis and more infections. I lived constantly with an antibiotic box that was connected to my piccline, so the days I finally got to go home to my apartment I needed to have it with me, but it was never for long before I had to go back in and get treatment. I often had to go in for plain X-rays and MR because the doctors often feared that I would have small bleeding in my body. One day they also found something on my right side of the brain. They thought it was a brain hemorrhage, when they told me it, I was also prepared then that if that is the case, I have no chance of surviving this. The good news was that it was "only" a tumor called cavernoma, but it is not relevant at the moment.
October 24 was the day I was supposed to start my stem cell transplantation. I started getting a cvk implanted and started getting strong chemotherapy treatments daily, after that came strong antibody treatments that come from rabbits. October 28 I undergo a full body radiation for almost 2 hours. October 29 I get my new bone marrow. Almost 2 liters from an anonymous donor that was carried through my cvk on my neck.
I was locked inside my room for almost 3 months, without being allowed to meet people
I was locked inside my room for almost 3 months, without being allowed to meet people. I wasn't even allowed to go out and walk during the day at the hospital. Only when it became evening was I allowed to go out and walk, when no people were around. I wasn't allowed to eat what I wanted. All food, vegetables, sauces, had to be microwaved. The food was not the best at the hospital and when you are so far down with strong chemotherapy and radiation, you cannot get much food in you. I lost about 14 kilos.
I got to come out near New Year and then I was still very fragile, scared and weak. I have tried to train as best as possible and slowly but surely I have built up my body and psyche again. With the fact that you are transplanted, there is something called GVHD, it means that the new cells I get can in most cases become too active in one's body and cause trouble. My troubles are and have been a lot of skin troubles, eye troubles and joint pain. But by sticking to the treatments and holding out, you can get your quality of life back again.
9 months after my transplantation I am going to resume my studies
6 months after the transplantation I pushed myself through the bloodstream with half mediocre blood status. Had not run many meters in over 2 years and managed to run 1 mile in exactly 1 hour. 8 months after my transplantation I went abroad with my closest friends. These months after the transplantation I have done everything in my power to try to live again the years I lost due to my illness. 9 months after my transplantation I am going to resume my studies.
There really is a light at the end of the tunnel, it is just a matter of convincing yourself and believing in it yourself.
/Edvin
