Dying of Kidney Disease

This is unbelievable and yet horrifyingly true.  ‘Jenny’ had been fighting her illness for almost half of her young life. Her foe was familiar yet still terrifying with its relentless and changing symptoms that reoccurred despite a long list of medical interventions. She had been through intense treatments with numerous side effects and a lengthy hospitalization when she was 11. Now, at 15, her illness was back with a vengeance. The diagnosis (kidney disease) still puzzled the medical team as they debated what to do next.

At the advice of her doctors, Jenny had recently started a daily outpatient treatment, but her illness continued to escalate and was now life threatening. She was tired of hospitals, tests and medications that didn’t work and seemed to only make her sicker. Nothing could ease her pain. Jenny wanted to give up, she wanted an end to this ‘life’ that was void of most of the things that teenage girls ought to be doing and filled with suffering. Jenny had lost hope.

Jenny’s parents took her to go to the emergency room, hoping that the doctors could convince her to be hospitalized, to get the care, the monitoring, the medications she needed to keep her alive.  In the emergency room, Jenny panicked. The nurse brought in a syringe, and Jenny screamed that she wanted to go home. She refused treatment.

As in many states young people can refuse treatment once they turn 14.  Jenny’s parents couldn’t bear to see their beautiful daughter in so much agony, and they couldn’t bear the thought of losing her. Yet Jenny stood firm in her decision. She was so sick, so exhausted and so weakened by her kidney disease that she wasn’t thinking clearly. Yet her parents had no authority to get Jenny the medical care she so desperately needed. She was slipping away right before their very eyes.

One of the nurses pulled Jenny’s parents aside. There was a way, but it would be difficult. Because Jenny was clearly in danger of dying, her mom and dad could call the police who could take over and legally (and physically) force Jenny into treatment. It sounded horrible, but the alternative was worse. Reluctantly they made the call.

The police arrived, and the process began and became increasingly complicated. The hospital was not equipped to treat Jenny’s condition, so she needed to be transported elsewhere. The caseworker worked to find a hospital that could treat Jenny and that had a bed available. Hour after hour went by while Jenny became more and more agitated, her pain increased and the medications she was given had little effect.

Finally a hospital with an open bed was found. As quickly as Jenny’s parents saw a glimmer of light, their hopes were dashed. The ‘hospital’ was 90 miles away and was a part of the state department of corrections. Jenny’s parents begged for a different placement. They knew that there was an open bed at a different hospital but Jenny could not go there. Now that police were involved, the options were limited to the hospitals that contracted with the county. Jenny’s parents no longer had any authority, not over their daughter, not over her care. They could not take back their decision and they could not take Jenny home. They were powerless.

Jenny sobbed and yelled and cursed. She was terrified, the police were frightening her and she didn’t want to be so far away from her parents, from her home and from everything familiar. One of the policemen barked at Jenny, telling her to quiet down, to stop yelling or he would charge her with disorderly conduct and put her in handcuffs. Jenny’s parents were stunned. How could this be happening? All they wanted was to get medical care for their child and suddenly she was a criminal.

The ambulance arrived to transport Jenny to the ‘hospital’. Jenny begged for her mom to ride with her in the ambulance, to comfort her and hold her hand. But the police didn’t agree. Jenny would be accompanied by one of the police officers, the very people who terrified her. The best that Jenny’s parents could do was to follow the ambulance, fighting to see the taillights and the road through their tears.

At the hospital, Jenny was read her rights . . . “You have the right to remain silent, you have the right to an attorney, anything you say may be used against you . . . “.  Jenny’s parents were in shock. How can this be?? She is ill. She needs treatment. She has kidney disease! Her mom said “Can we speak to the doctor? We need to discuss Jenny’s medications, her care, how do we get her out of here????”  Sorry, the doctor had just left for the night with only the nurse on the unit and “in charge”.  The doctor would call in the morning. 

Heartbroken and angry, Jenny’s parents drove the hour and a half home. They made phone calls to the hospital that was equipped to provide decent care and were told that Jenny was on a waiting list. Perhaps a bed would open in two days. But there were obstacles. Because Jenny was in police custody, the doctor, the social worker and the county caseworker would all need to agree to the transfer. And then, there would have to be a court hearing. Jenny would need to testify on her own behalf. “In person?” asked Jenny’s dad, “Or from the hospital by phone or in writing?” They were told “It depends.”  If Jenny had to appear in person she would be shackled and transported by the police.

How could this happen in 2013, in the United States, to a critically ill child? It does. This story is entirely true except for one detail. “Jenny” is suffering not from kidney disease, but from a mental illness. Is this scenario acceptable for a child with kidney disease? If not, then why should it EVER be acceptable for that same child with mental illness? My heart is breaking.

 

Walking Together

I signed up for this walk and I guess I have to participate. It is October and raining…hard. It is dark and grey and miserable along the shores of Lake Washington. Across the lake the Seattle skyline is hidden behind dreary, low clouds that threaten continuous rain. My last NAMI-BC2M walk was far across the country on the east coast. On that walk I joined NAMI Walks NYC, beginning at the Seaport in Brooklyn and from there we walked across the Brooklyn Bridge. It was a sunny and beautiful day with great conversation and high spirits. The previous NAMI walk in Seattle was also a beautiful spring day and we proudly carried the Bring Change 2 Mind banner.

Miserable is the best word I can think of to describe this particular day. It is not “misting” as it can often do in Seattle; it is pouring. The wind is blowing and the rain is sideways. It is cold. I wonder how many people will actually turn out for this 5K slog along the wet and windy shoreline of the lake and walk to Carillon Point. In good weather this is a beautiful walk. Today it is bitter and soggy.  

My daughter Linea, my husband Curt and I make our way past the multitudes of umbrellas to join our team under the Marina Park Pavilion. We put down our umbrellas and shake off some of the water collecting on our pant legs and stomp off the water filling our shoes. We meet old and new friends on our team and slowly make our way back into the downpour to listen to the short welcome speech and begin the walk. It continues to be wretched weather but soon we are laughing about how miserable it is and if we should go the entire way or quit at the halfway point. My friend Victoria points out that this is kind of an analogy for living with mental illness. She is so right.

If I were walking alone I would have given up a short distance into the 5 kilometers. It was too wet even for a person who has good rain gear. I would have waited for the rain to let up or walk this route another day. But together we are a team that urges each other forward. We listen to stories and understand more about why people are walking on this day, in this rain. I talk with a friend who I hadn’t seen since the last walk and we share new resources that we had each found over the last year. Another walker updates me on the health of a family member who is the inspiration for her walking in this downpour. I meet the family of a new and dear friend who had recently lost her son to his mental illness. The family walked with his smiling face on their personalized photo buttons. The little niece and nephew of this man slog along with us, all 5 kilometers and through puddles much larger than they could jump across, yet they never complain. The youngest is soon carried by his dad and his dad never complains. There is much laughter and soon we are at the finish line. Together we have made it.

People living with mental illness need a team. The family needs a team as well. Living with mental illness is not often a sunny walk in the park. It can be miserable, cold and feel like it is a never-ending slog. There were many, many times during Linea’s initial diagnosis with bipolar disorder that I felt I couldn’t go another step. The difficult search to find treatment while her illness was working to take over her body was exhausting and overwhelming. I was disheartened, terrified, and uncertain. I felt very alone. We slowly found our team and we shared our story. Together we moved forward with the support, strength and good humor of family, friends, care-givers and medical providers. There is hope and there is recovery in this journey with mental illness. There is strength in numbers and friends are made when people face adversity together. Join us on our NAMI-BC2M walk May 18^th beginning at Marina Park in Kirkland. Or join a walk near you. It might be a sunny day but no guarantees. If not we will finish our walk together.