My mom’s battle with kidney failure begs for finding better options for patients

Four years ago, I stood in a Plantation, Florida, hospital room by my sick mother and shaken-up father as a doctor told us she had hours to live.

Looking Eti Dvir in the eyes, which she struggled to keep open, the MD said: Only dialysis, which helps replace some vital kidney functions, could save your life right now.

For the previous two years, after being diagnosed with severe kidney disease, my mom refused to undergo dialysis. This, despite constant appeals from my father, myself, and doctors. Alongside my sister, Norit Dvir Elliott, Eti researched alternatives.

Our mom’s rationale: Once you start dialysis, you’re on it for life. At a minimum, she said, she sought to delay it as long as possible. And she did.

Eti was born a free spirit. The only daughter of Hasidic Holocaust survivors, she rejected the traditional roles prescribed to her. After graduating high school in Israel’s largest ultra-Orthodox city (Bnei Brak), where she often got in trouble for rebelling against religious indoctrination, she enrolled at an educator-training program in Tel Aviv, became an elementary school teacher, married a secular sabre, and raised three children in a liberal village (Kfar Ganim).

She brought us up to live life to the fullest, think critically, give voice to the voiceless, focus on action rather than words, and be independent, honest, empathic, and compassionate. She modeled these concepts and behaviors. She spoke up for herself and others. She let us play outside for hours every day and take the bus on our own to the nearby city, Petach Tikvah.

When I turned 4 and a half, she started sending me to the neighborhood grocery store armed with cash, a bag, and a shopping list. I would place the items I knew by heart in the bag and hand the list to the shopkeeper for the rest. When I returned, Mom would smile, pinch my cheeks, and kiss me on the head, despite noticing that on my way home, I gobbled up a hearty portion of the fresh loaf of bread.

Our Mom never asked to see our grades or what we wanted to do when we grew up. She provided Norit, me, and our brother, Sharon, with select possessions but countless experiences.

She made sacrifices for us. Although she never wanted to move to America, she agreed so our dad could fulfill his dream of working at the United Nations.

Eventually, she also fulfilled her dream of opening a shop, joining Norit in opening a vegan gift store in downtown Asheville, NC. She also worked as a Hebrew teacher and court translator.

Her kidney failure robbed our mom of her independence. She felt frustrated at her limited options. We considered a kidney transplant. Norit offered to give one of hers.

But conversations with doctors made it clear our Mom’s health conditions would make her a weak candidate likely to be denied approval to proceed. Besides a taxing surgery and a long recovery, the transplant involved taking dozens of potent medications on a daily basis for life.

Our mom suffered greatly from the side effects of the pills she was already taking.

Her only choice appeared to be dialysis. Our mom expressed disappointment that society had developed no other viable options for patients like her since a Dutch doctor debuted the “dialyzer” during World War II.

This old procedure sounded archaic and degrading to our mom. Dialysis drains the body of all its blood, replaces it with funky fluid, cleans it, and returns it to the body.

But facing death, she consented.

She said she did it for us.

Dialysis proved to be everything she feared—painful, demeaning, exhausting. But it gave us our mom back for several years. She started writing Hebrew poetry. She published it on social media and in Israeli journals. She spent time with her family, including her young twin grandchildren.

In the past six months, however, her health declined.

When Novo Nordisk announced in mid-October that semaglutide—which fights Type 2 diabetes and obesity in such forms as Ozempic and Wegovy, respectively—shows promise as a kidney disease treatment, I jumped for joy. But doctors told us that even if the FDA approves it for this purpose one day, it will do our mom little good. It appears to help prevent the need for dialysis in early kidney disease stages, they said, not replace it for late-stage kidney-failure patients.

The disappointing news came at the worse time. A surgery to clear up the veins in our Mom’s blackened arm to enable dialysis proved too much, debilitating her for days. Even after she recovered somewhat, she could barely walk or care for herself.

She entered home hospice last week. She said her soul was ready to leave her fragile, ailing body and “see what it’s like on the other side.” We asked her several times if she was sure. She had zero doubts. At that point, she said, she just wanted to die peacefully, with us by her side.

The nurse recommended a Foley catheter. Our Mom said no way. But a couple of days in, she stopped being able to go to the bathroom. It complicated what has been an otherwise calm, if heartbreaking, process.

The nurse marched into my Mom’s bedroom, looked her in the eyes, and said: If you want to let your body die, you must accept the catheter.

Our mom said yes.

We remain by her side.