Dialysis amid the rockets (a new approach to kidney failure)

When I heard the siren, one of many on that horrible first day of the war, I didn’t hesitate. I grabbed the IV pole I was hooked up to and rolled it toward the stairwell, lifted it and went down one flight, to what we consider to be the strongest part of the building. My neighbors were there. My family was there — with one of our young children completely terrified and wondering if the murderers were coming for us too, and the other so seemingly oblivious to the danger that we had to yell at him to stay in the building. 

But, as horrible as that morning of October 7 was, there was also something there that represented the achievement of a dream for me. 

When I heard, about three years before, that I needed to go on dialysis, I searched for a way that would allow me to be home with my family, to be relatively mobile and active. To maintain my independence, to not have to go to a dialysis center four or five times a week to be hooked up to a hemodialysis machine for hours. I wanted a solution that would allow me to do something like get down those stairs in the middle of a dialysis treatment and be there with my then seven-year-old as she was discovering dramatically that the world was not made up of unicorns and superheroes who would come and save the day.  

Of course, I wish my children had never had to discover so young that there are people who hate us so much they want to kill us with bombs and rockets and guns. And I wish I had never had to suffer kidney failure. But if my family did have to endure those things, I wanted us to do it here, in this crazy, wonderful country my wife and I moved to 10 years ago. A country that, unlike the America I come from, has universal healthcare, a system that gave us the IVF we needed to become parents and that gave me an opportunity to discover the little-known dialysis method I use, a method more people need to know about in a world where only a small minority of people with kidney failure are able to get transplants. It’s called peritoneal dialysis (PD). It doesn’t require any machines, or even any needles — just gravity and a standard IV pole. 

That morning when I took my pole down the stairs I met my neighbor in the stairwell. He offered me a chair, and then invited me to come into his apartment. We’d already been there after the earlier sirens that morning. He and his generous wife offered my children snacks to help comfort them. It was on their giant, flat screen TV that we first heard the terrible initial reports about the incursion from Gaza. We would not have seen it on our own since we don’t use electronics on Shabbat and major holidays. 

I didn’t want to come into his apartment while I was still hooked up to my pole, but said I would soon. I turned to the pole. I saw the dialysis was nearly over, the 2.5 liter bag of clear dialysis fluid hanging from the top was finishing filling up my belly. That’s how the kind of dialysis I’m on works — the body’s peritoneum, a sac surrounding the abdominal organs, is used as a kind of natural filter to pull toxins out of the blood into the fluid. The old fluid that I had emptied out of my belly sat in another bag near the floor. I detached a permanent catheter I have in my belly from the bags. 

My neighbor asked me if I needed help. My knees aren’t so good and stairs are hard, but it’s important to me to be as independent as I can. I thanked him, but declined and walked up the stairs with the bag. Later I came back for the IV pole. Only then did I rejoin my family in the neighbor’s apartment. My family is everything to me. I’m trying to stay alive for my children. Three times a day, I spend 45 minutes performing my dialysis. I have to do it every day. Even when I’m tired or depressed. Even when it means sacrificing my cherished privacy.  

I sacrificed my privacy that morning by doing my dialysis in front of my neighbors. And now I’m doing it again by publicly revealing that I am on dialysis after three years of trying to keep my kidney failure private. In both cases I am trying to move towards life. In the stairwell, it was my own life I was trying to choose, to protect. Here, in this article, I am sacrificing my privacy as part of a Holy call I feel as a rabbi and former journalist to be in service of the lives of others through my words — to help others see that PD might be the right kidney replacement therapy for them.

It certainly has been for me. I can not only move about the house while doing a treatment, I can play with my children, sometimes lifting my son up into the air even though I’m connected to my pole. I can do Zoom calls. And, I can take my dialysis on the road, like I did last week at the Dead Sea, using an s-hook I purloined from an IKEA kitchen rod to hang my bags since we left my IV pole at home. None of that would be possible with hemodialysis, which usually requires going into a dialysis center multiple times a week. And hemodialysis overwhelms its users with a powerful sleepiness that can make reading or working impossible during the hours-long treatments where huge quantities of blood are pumped in and out of the body.

But unfortunately not everybody has the opportunity I had. Many patients are never even told that PD is an option. I certainly wasn’t. My then nephrologist even discouraged me from exploring it when I first mentioned it to him. 

Shockingly, many medical professionals are only vaguely aware of PD; I’ve even had to explain what it is to doctors. But the science is clear. PD is effective, and in some ways superior, especially when it comes to the quality of life issues that are really the most important thing for people with a chronic disease. Yet, globally only 11% of dialysis is done using PD. The method is also less expensive than hemodialysis.

That is not to say that PD is easy. I have good days and bad days; sometimes it feels like all of life is doing my treatments and then waiting for the next one. And every time I connect and disconnect my catheter, I am exposing the inside of my body to the outside world, risking a potentially fatal, abdominal infection. But, after nearly three years on PD, I have, with the help of God, never had an infection.

Good training has helped. For a patient to be successful with PD, they need to be part of a care team committed to spending the time and energy to train patients. I have been blessed to find a wonderful team to work with here in Jerusalem at Shaare Zedek hospital. The doctors and nurses there represent the best of the Israeli character, that “can-do” attitude and willingness to innovate that allows Israelis to do more with less compared to their American counterparts. They are people who clearly have a sense of mission about their work, as well as a great deal of compassion. I am deeply grateful for their care, but I do not know if I ever could have found my way to such wonderful caregivers if I’d stayed in the United States where the for-profit medical care system dominated by insurance companies that love to say “no” is crippling for a person like me, a person with profound scarcity issues and a fear of being abandoned. So many times back in America I found the system there too overwhelming to consistently seek or find care. Certainly, here in Israel the system isn’t perfect, but I am able to walk through my illness journey with a basic sense of security, with a sense that I will be taken care of and not just abandoned to die by a heartless system.

PD, of course, is not right for everyone. It doesn’t even work at all for some people. And, of course, for some few people there is an opportunity to pursue transplant instead of dialysis. But there are just not enough kidneys, not enough donors. Many people cannot even get on a list because of chronic medical conditions and systemic bias against groups like people of color and fat people.

But the media obscures this truth by only telling feel-good stories about transplant. These stories carry the implicit message that dialysis is a form of living death. 

I want to change that by sharing my story, and so I am writing a book chronicling my first year on dialysis, as well as my lifelong struggles with healthcare systems.

Once, in the early part of that first year, my daughter came into the room while my wife was changing the bandage near my waist that covers the place where my catheter enters my body. She looked on intently, without any sign of revulsion or fear. “Will it always look like that?” she asked. And, “how much longer are you going to have to have it?” Another time she asked, “when will they be able to fix your kidneys?”

What she was asking me about is what sociologist Arthur Frank described as a restitution narrative. This kind of narrative is what we all hope for when we get sick, that we will be returned to the same state of health we had before, that we will get better.

But getting better is not always what happens.

“I think I’ll always have to have it,” I told her of my catheter.

It broke my heart to say this to her — to be the source of having her innocence broken, that she should be learning from me about the chaos of a world where some things can never be repaired.

My own world became a chaos when I learned I needed to go on dialysis. I was stunned — shocked to discover that a restitution story was no longer available to me. My life became a chaos of fear and confusion.

But there is an alternative. We can make the life we have remaining to us a quest. We can learn to set achievable goals, like my goal of being an emotionally available and supportive parent for my children in the time I have left. I cannot make the world one where Abba isn’t sick all the time or where there is no war. I couldn’t spare her and her brother from having to hide in the basement bomb shelter that horrible night where we wondered whether Iran would turn our beautiful city into cinders. I can’t take away their fear that more terrifying sirens will come. But the healing comes from my ability to be present with them while I still breathe, and to try and show them that there is still love in the world amid the fear and the loss. I can show my kids an example of transforming a life into a quest, one where I can enjoy life again as something beautiful, that is capable of surprising not only with the bad news of illness but also with the many miracles we encounter in everyday life 

A big part of being able to shift my life over to a quest narrative approach was choosing PD over hemodialysis. PD has not made my life normal, but in some ways it has set me free.

For me, and maybe for you too, dialysis does not have to be death. You can still choose life. Even in wartime.