As I Prepared for Surgery, I Dealt With End-of-Life Questions

With my rare disease, I had to consider advance preparations in case of the worst

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by Shalana Jordan |

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End-of-life preparation: What a bleak and unsettling subject. Will you be buried or cremated? Who will take your children if you die young? How will your assets be dispersed? I didn’t think I’d have these concerns at age 36, when I almost died.

Death is inevitable, unfortunately, but most of us plan to live until an old age as grandparents or even great-grandparents. But in September 2020, I spent nearly two months in intensive care, where I almost died from a rare disease triggered by COVID-19: atypical hemolytic uremic syndrome (aHUS). The lead nephrologist I met the first night in the hospital said he wasn’t sure they could save my life, but that he and the team were going to try.

Suddenly, I was bombarded with questions about not only my symptoms, but also major end-of-life decisions. As I was being prepped for surgery (to run a port catheter for dialysis), I had nurses asking me if I wanted to be resuscitated if an emergency occurred. Did I have a living will for reference? A medical power of attorney? Was I an organ donor?

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I had to consider all of these questions on the fly when I’d thought I’d have another 20 to 30 years before needing to worry about them. I’d been a healthy 36-year-old who was at the top of my game. I honestly couldn’t wrap my head around the fact that I was so close to death (and honestly, I still haven’t).

My children were my first and most important consideration. My boys were 4 and 5 years old when I was hospitalized. They were even in the emergency room with me. Not only did I have to find someone to pick them up from the hospital, but I also had to decide who would take them if I died that day.

I’m estranged from my parents, so they’re out of the equation. My ex-husband’s parents help a lot with my children, but they’re elderly and have their own lives to worry about — and they’re in another state. How do you select someone who can and would completely take over raising your children?

For most people, the next steps are funeral arrangements. First, you have to decide between burial or cremation. All sorts of accouterments go along with either choice, such as coffins, urns, or burial plots, not to mention a location and preparations for the funeral service. Some families have a wake before the funeral as well.

Another thing to prepare is distribution of your assets (if you have any). Will they go directly to your children? And if your children are under age 18, you may need to set up a trust to protect your assets and children from potential usurpers, but also so the money is responsibly managed and used for or by the children for their needs. If you don’t have children, you’ll need another plan for your assets.

Despite how morbid it is, these concerns are all parts of life and death that must be considered. Better to have a plan in place so your family members don’t have extra stress while they mourn your loss.

Living with a rare or chronic disease can be devastating and life threatening, so it’s important to act now and ask the hard questions, make the difficult plans, and ensure your family or loved ones are cared for when you’re gone.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


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