Andrew Robinson was a successful New York trial attorney when he was diagnosed with” an incurable form of Leukemia” and told he had “less than five years to live.” That was more than 15 years ago. Despite severe complications, including over 50 hospitalizations, Andrew was the founder and CEO of Patient2Patient a mission based company that developed disease specific WebGuides to help patients learn how to locate and use the medical information, resources and tools available on the Internet. Because of complications from a bone marrow transplant and a diagnosis of a second cancer, Andrew’s struggle as a patient continues. Andrew has spoken at medical conferences throughout the US on a patient’s perspective on health care. He is currently working on a book based on his approach as a patient, entitled The Patient Will See You Now.™

I sit looking at the phone. I’m having a medical problem that needs attention, but I don’t know who to call. Here’s why:

For over 15 years I have been a leukemia, post-leukemia and now once again, a cancer patient. Before my illness I was a New York City trial attorney. I brought those skills to my illness and treatment – the questioning, the thinking, and the forcefulness. I have no problem picking up the phone or sending long emails to my doctors. Working with them, arguing with them, coming up with ideas and solutions. But now, I don’t know who to call.

I was first diagnosed at age 36, Out of the blue – told that I had an incurable form of Leukemia and less than 5 years to live. I tried every available chemotherapy, modified gene therapy, two alternative programs –  none had any effect on the disease. When my doctors told me they had nothing left to offer I found out about a novel form of bone marrow transplant in Israel.

So I moved there with my family for a three month treatment. Due to complication we were there for a year and one-half. Because of high dose steroids both before and after the transplant my back fractured and collapsed.  Eventually my shoulders, elbows and knees all fractured.

All during that time, if I was faced with a problem, I had one primary physician in charge of my treatment. So I knew who to call.

After returning to the US, slowly, but surely, the transplant worked. Over a period of two years my white blood count dropped until it reached the normal range: there was no trace of leukemia. I am a living miracle.

But the complications continued – with auto-immune/ Graft Versus Host Disease (GVHD) problems, infections, dozens of hospitalizations, cataract surgery, double-knee replacement surgery, an exploratory laparotomy…

All this time I have fended for myself in the medical jungle – worked my way through the problems with the help of some tremendous doctors and nurses, family and friends. But things have changed.

Last winter I was diagnosed with tongue cancer. I was suddenly plunged into a whole new realm of doctors, treatments, tests, medications. It felt like I had been transferred to the medical equivalent of the tower of Babel – everyone spoke a different language than I was used to.

I estimate there are a dozen doctors currently involved in my care. My list of medical and emergency contacts, my doctors, their phone numbers and emails, their nurses and office assistants and their emails, four different pharmacies, three different medical supply companies – fills up six pages of notes.

So here I am, looking at the phone and my six pages of notes. I am having a medical problem. It may be severe, and I don’t know who to call.

The reconstructive surgery after my tongue surgery did not go well. So I was left with a hole in the newly built bottom of my mouth and another hole in my neck. Now I am having pain in this area of the bottom of my mouth and some bleeding. It could be related to the surgery, or the plastic surgery, it could be an autoimmune/GVHD reaction or a side-effect from my chemotherapy. Or something else.

The problem is that no one is coordinating my care. Because my bone marrow transplant doctor doesn’t know about tongue cancer and reconstructive surgery; my chemotherapy doctor doesn’t know about mouth GVHD; the surgeon doesn’t know either…

Hopefully, this is a minor problem. Because as difficult as this is, when complications set in after my surgery — pneumonia, infections, blood clots —  my family had no idea who to talk to.  One set of doctors would set out orders. Another set would change or modify the orders. A third set would suggest other changes. There was no one coordinating my care.

But towards the end of my hospitalization something changed. A clinical nurse practitioner stepped in and acted as a go-between between my family and the doctors. She took our questions and concerns and she tracked down the doctors to get the answers we needed. Speaking to the different specialists she helped to clarify and coordinate my treatments.  It was a revelation as to how the system could work for a patient like me with complicated problems running across different specialties.

But that was in the hospital. I don’t have anyone like that now. And I am not unique. There are millions of patients in the US who have multiple chronic and life threatening conditions which makes caring for us extremely complex. Because so much of our care is rendered by specialists, we end up needing someone to act as a coordinator within the system who can help to make sure that the care we are receiving is consistent and coordinated.

I have a terrific internist but his responsibility is not to coordinate my care – and I can’t imagine where he would find the time to do so. What I need is someone a who can coordinate my care as an outpatient – just like the nurse practitioner who coordinated my care when I was in the hospital. Unfortunately there is no one who has this responsibility.

So here I sit, looking at the phone and I don’t know who to call. Well, it’s not so bad. Maybe it will get better. Let’s give it another day and see what happens.

Related Links:

• Patient Navigators: Are They Necessary or Just Nice? – Jessie Gruman