Planning my last days of life with ALS

In November 2020, I was living my dream of becoming a surgeon, planning a family, and preparing for my medical practice exam in the United States. I was far from knowing what they would tell me in a few months you are dying.

What started as a problem opening a water bottle turned into muscle contractions in my arm and spasms running down my back, leg and arm. A series of tests confirmed what he suspected: ALS or amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The median age for a diagnosis of ALS is 55 years. I was only 31 years old.

I felt like the world was eating me up.

I am not afraid of living with ALS. What scares me is that I will spend my last days hooked up to a ventilator.

I lived my life the way I wanted to but when my time comes I want to decide which a wish Die.

No one should have the right to decide how I want to die.

As a doctor, I know that my life will end prematurely. For this reason, today I am sharing my story through this voice. syntheticper notify to my Hispanics and the LGBTQ+ community, which I am proud to represent, on the importance of end-of-life planning.

Before ALS

My life before ALS was very exciting. I just moved from Colombia to the United States to marry the love of my life. I was in the best condition in my life. I lifted weights five times a week at a gym near our home in San Bernardino. All of a sudden, I couldn’t open the cap of my water bottle. My symptoms progressed rapidly.

Bass already me theft the ability to speak and walk. Though my mind is as clear as ever, I a prisoner my own body. A device with technology that tracks my eye movement is the only way to communicate. My lungs are working at 30 percent.

Orders

We Latinos don’t like to talk about death until need to do this

What an irony since we are the population with the highest rate of life-threatening diseases. At the same time, we Latin Americans less likely to follow advance directives. People with advance directives have less chances for treatment Not desired and invasivesuch as tube feeding, hospitalization and artificial respiration in intensive care units (ICUs) in the last months of life.

I recently contacted Compassion & Choices, an end-of-life advocacy group that advocates for a full range of compassionate end-of-life care options. I invite you to read Toolkit: My Decisions at the End of Lifeavailable in Spanish as well as English. Is simple tool lo(a) guide the decision-making process so you can document your health care options and have those discussions necessary.

It is important that we talk to our doctors and loved ones about whether we want to be on a ventilator and receive aggressive treatment. Let’s talk RIGHT NOW before we’re too sick to speak for ourselves.

Last wish

When I told my husband Zeke about my desire to die without a ventilator, he immediately understood everything. My mother refused. However, after family conversations and prayers, my mother, my Worldto me allcame to understandparadise respect my last decision.

As I prepare to return on Saturday to my beloved Colombia, where my family will continue to take care of me, I thank God for the opportunity to travel the world. I thank you for allowing me to marry the love of my life and for giving me the opportunity to spend my last days helping to raise awareness in my Hispanic and LGBTQ+ family of the importance of preparing for the end of our lives.

Every medical situation is different. That’s why we need to talk to our doctors about whether we want or Not, to keep us alive with aggressive treatment. It is also very important that we honor the last will of the people who are dying, be it us or Not We agree with your decision.

I hope to be back in California in a few months, but if our Lord decides to call me sooner, I will rest easy knowing that I have lived a full life and that my family will give me the last. gift, when I do mine last a wish.

[Felipe Ocampo González es un médico de Colombia que vive con su esposo, Zeke, y con su madre en San Bernardino, CA].