Timo Söderlund co-founded Global Aortic Awareness Day, which takes place yearly on September 19, after being diagnosed with aortic dissection in 2012. He spoke to us about the condition, how it changed his life, and his mission to raise awareness globally.
The aorta is the body's main blood vessel, and it transports the freshly oxygenated blood from the heart to the organs.
The wall of this artery comprises three layers; an inner layer, a middle layer, and an outer layer.
An aortic dissection occurs when the inner layer in the aortic wall breaks and blood can push its way into the cavity that forms between it and the outer layer.
This starts forming a new passage for the blood, parallel to the normal blood flow in the aorta.
When this happens, the aorta starts to swell. If it swells too much, the outer wall will also break down.
A person can become unconscious in as little as 10–30 seconds and bleed to death quickly.
Complications from aortic dissection can cause the blood flow to vital organs to be disrupted, which can lead to other fatal conditions.
Many people die before reaching the hospital. The likelihood of mortality increases by 1 percent for each hour without treatment for the first 24 hours.
What follows is our discussion with Timo, during which he tells us about his life prior to the event, his coping strategies for recovery, and his plans to help others with the condition.
What impact has it had on your life?
This condition changed everything; I was a CEO in the international paint industry and spent a lot of time traveling and working all over the globe, from Europe to the Middle East.
At first, the doctors thought that I was having a heart attack and I spent 6 hours in emergency. I had various medical treatments while I was still conscious, but I was in immense pain throughout it all. Though I was on morphine, my whole body hurt; the pain occurred intensely in the neck, throat, and chest.
I lost many of my cognitive abilities as a result of the incident; I couldn't count, couldn't spell, and I had very bad short-term memory loss. While my memory has improved a little, it's nothing like it used to be.
As a result of this, I had to stop working. I previously spoke 5 different languages and these were affected badly.
My cognitive faculties were affected so much due to the micro bleedings and oxygen shortage I experienced during surgery. For a period, there was no blood flow to my brain and my body temperature dropped by 20°C.
Many individuals die from this, and those who do survive can become different due to the strain and trauma it causes the brain.
I grow tired when processing information, which can make some things very hard for me. The tiredness was also a big factor in why I was no longer able to work, as was the memory loss.
What has been helpful during your recovery?
I still attend rehabilitation twice each week. I cannot do very much physical work because I can only lift very small weights now, and I cannot lift my left arm above my head. I do water gymnastics twice per week, which has been very helpful.
The rehab is important; it is good for me to keep busy, and I must keep my mind and body as active as I can. It's easy to put on weight due to the inactivity, and it is easy to slip into a habit of sitting all day and eating too much. This is bad for overall health, so I try not to do this.
It's important to deal with the mental impact of the condition. It has completely changed my life, and many people develop depression after experiencing a life-changing injury such as this.
I received care from a brain damage unit in a university hospital for 2 years, which was very helpful, and it was suggested that I either learn to play an instrument or use a foreign language.
The specialists proposed cello, but I chose guitar. However, this turned out not to be an option, as the beta-blockers I needed to take had made my fingers numb and slow. Therefore, I decided to spend some time re-learning some of the languages I'd previously been able to speak.
I have found that the language work I do on a daily basis — I make sure I write in English every day — to be immensely helpful; it has really helped with my memory, though I do still experience short-term memory loss.
Eventually, my condition stabilized to such an extent that I was able to learn to play an instrument. This was also great, helping to improve my cognitive abilities as well as bringing joy and positive mental health effects.
These two activities are excellent for the brain. Studies show that the risk of Alzheimer's disease and dementia is lowered for people who do this, and the same principle applies regarding my condition.
Researchers helped a lot in my recovery, which is unusual in most areas. Patients can become very lonely in recovery, as surgeons play no part in the aftercare, and it can be very hard to stay positive when you feel so alone.
I have become involved with several research projects, one of which is Vascupedia. This is a recent project wherein one of the main aims is to let doctors freely share information with other doctors regarding aortic diseases. It is also a great resource for patients to find out more about their conditions.
I still have a damaged heart valve, and the dissection runs from the aortic arch down to the foot in one of my legs. The arch needs surgery, but since other arteries are also damaged, the extent of such surgery is great; it will only be done if it becomes a life-threatening situation again.
With these ongoing issues, it helps that I am able to connect with other physicians, researchers, and patients.
What are the aims of aortic awareness day?
The main aims are to raise awareness of the condition and to help connect the people who have it. We run various events all over the world, such as in Europe, North America, South America, Asia, and Australasia.
I truly believe that the best thing to aid recovery is to find other people who have the condition and interact with them; hopefully, our events can help people do that.
I advise those in a similar position to myself not to hide; as lovely as friends, family, and doctors can be, only those who have experienced something similar truly understand the issues, trauma, and emotional exhaustion that an aortic disease brings.
Magic can come from meeting and communicating with others in a similar boat, and that has been essential for me during my journey to recovery.