Director, ARDS Alliance
Update: Our friend, and colleague, Sumita passed away October 14, 2022. She is greatly missed and her immense contributions were vast and unwavering.
I am Canadian diplomat, a traveler, a runner, married to my amazing partner for 20 years, with two wonderful children. I currently live in the Netherlands, where I became ill and started my long journey with ARDS.
It happened in October 2019 after receiving an injection in my shoulder for an MRI to have a look at a kink in my shoulder that I had gotten from a fall from my bike. Something didn’t feel right about the way they cleaned the area before they administered the injection, and I started to feel pain that was unusual for this kind of procedure within a day or two. By day three I couldn’t lift my arm properly to brush or wash my hair, and I was in terrible pain. I asked my orthopedist who had ordered the MRI, whether it was possible that the injection I had received in my shoulder had caused an infection. He dismissed this possibility because it was so improbable, even though he did not really have any other satisfactory answer for what it might be. Over the course of the ten days after the injection, the pain got worse and on the tenth day my primary care physician saw me. By this time, I had a high fever and a swollen arm, and I was having a hard time breathing. He sent me to emergency, calling ahead to urge them to admit me immediately.
The hygiene protocols that had been used in the injection to my shoulder did not meet the necessary standards, and had caused an infection in my right shoulder that spread through my blood to my lungs. The blood tests showed immediately that I had a very serious life-threatening infection. I was in disbelief when they told me that I should plan to spend several weeks in the hospital recovering. I said, “I can’t! I have an important meeting at work, and Thanksgiving this weekend, and things to do!”
And yet, my journey would be much longer, and beyond what I could have imagined.
I was intubated and under sedation for the next 2 months. During that period, my lungs continued to deteriorate so much from the infection that even a ventilator was of no use. The infection had eaten through so much of my lung tissue that my right lung was described as “destroyed”. I was put on a life support machine of last resort called an Extracorporeal Membrane Organ (ECMO) that circulates oxygen through the blood when the lungs cannot do so. I remained on ECMO for 3 months. During that period, my medical team at Leiden University Medical Centre were specialists in infections, and although they had done everything in their power to keep me alive, they were running out of ideas and I was running out of time. They reached out to the lung transplant specialists at Erasmus Medical Centre in Rotterdam, to see whether I might be a candidate for a transplant. An Erasmus intensivist felt my lungs could be saved, rather than take the risk of a transplant, and he had an unconventional idea of how to use the “puff” in the ventilator to inflate my lungs. Through the right combination of science, experience, intuition and hope, they managed to get my lungs working again. This method has since been documented in medical journals and is of interest to other specialists in this area.
I remained a month on ECMO and on the ventilator before being transferred to the lung ward for recovery. Like many ICU patients recovering from serious illness, I had to learn to talk, eat and walk again. By the time, I was able to take my first steps without hanging on to anything it was April. I had been out of the ICU for two months, but my lungs were not getting much better. I still had a chest tube with drain, which was an infection risk and with which they couldn’t send me home from the hospital. So a surgery was proposed, to try to fix some of the damage to my lungs, to try to get me closer to going home.
Unfortunately, there were complications following the surgery to try to repair my lungs, and one of them collapsed again. I spent a second two-month period in the ICU on the ventilator. Being back to square one, having to learn to talk, eat and walk again, was the most devastatingly difficult time of my life. I felt like I was never going to go home. But I dug down deep and I did it again, because I knew the only person who could get me there was me.
I was eventually discharged from the hospital after nine months, in August 2020. I have had other setbacks in the meantime, including surviving COVID and a number of infections to the lungs, but I continue to aspire to continued recovery. My illness has severely damaged my lungs and limited my mobility, but my brain has somehow survived this harrowing experience and although I forget things, it continues to allow me to be the person I have always been.
In addition to what I have lost, I have also gained. This journey has enhanced my empathy for others and my gratitude for what life has given me. In spite of my physical limitations, I continue to make new memories with my family, and am grateful for every extra moment I have with them. I have returned to the job I love at the Canadian Embassy in the Netherlands, facing the every day challenges and pushing the boundaries of working as a diplomat with a disability.
I hope that my experience can help others in similar circumstances, improve people’s understanding of this kind of trauma, and increase awareness by medical professionals of what critical care patients need. Finally, I hope that telling my story and advocating for patients will give others the courage to speak up for themselves, face their own difficulties and take hope in knowing that even in the greatest tragedy there is something beautiful to be found.
“I hope that telling my story and advocating for patients will give others the courage to speak up for themselves, face their own difficulties and take hope in knowing that even in the greatest tragedy there is something beautiful to be found.”