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Last Request

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Have you ever had one of those days that you just can’t forget? A day that forever stays in your memory, moment by moment, scene by scene. I have. This is my story. This is my nightmare.

My dad gave me a lot of things; his beautiful blue eyes, his constant smile, and his undying faith in people to do what is right. Before you can understand my story you have to know where I came from. I vividly remember being a small child lying in my parents’ bed and my dad would ask “Whose girl are you? You’re Daddy’s girl right?” My response was always the same. In my tiny voice I would always say, “I love you both.” I always refused to choose. From that young age I began my lifelong mission of making sure that everyone in my life felt happy and loved. I thought that I could take care of it all.

This is the story of how my life turned upside down. This is the story of how I lost all faith in medicine. Yet, I feel the need to keep this nightmare from happening to someone else. It was my father’s last request and for that reason my story must be heard.

My nightmare began on June 2nd 2006. My father who was battling Multiple Myeloma went for a checkup following a bone marrow transplant. He said he felt fine. He drove himself to the hospital just as he always did. But this day was not like any other, he was admitted to the hospital that afternoon with what the doctors called a cough and a fever. Later that same day the doctors found a dark spot on one of his lungs. Over the next two weeks several tests were taken including two bronchoscopes to examine the fluid in his lungs and several misdiagnoses were made. 

I will never forget the night after the second bronchoscope.  I was sitting with my father when his doctor, the man he trusted with his life completely, came into the room sat in a chair and put his head in his hands. He told us he didn’t know what they were dealing with and that they must have missed something. When I heard these words they didn’t strike me with near the gravity that they do now. At this point in time I was still optimistic. I still believed that doctors knew what they were doing. I believed that these trained professionals would take care of my dad. After all, my dad was in remission. I even asked about some new medicines that were designed to keep my dad in remission. At the time I couldn’t figure out why the doctor seemed upset with me and brushed off my questions. I now know exactly why he acted so rudely. He couldn’t stand the thought of telling me the truth. He couldn’t bear to admit that he had no clue what he was doing.

As the weeks passed, my father’s doctors made guesses about what was causing his worsening condition as fluid continued to fill his lungs. My family and I began to spend all of our free time at the hospital. We made sure someone was always there to talk to the doctors when they came by during their rounds. I became my father’s advocate. I became his voice to the doctors. My father had always struggled with communicating with doctors and this was my way of stepping in to take care of him. I decided that I would ask the questions and I would get the answers that we needed.

After nearly a month of care with no improvement, my father was moved to the ICU. At this point we were told he had IPS (Interstitial Pulmonary Syndrome) and would be treated with an experimental treatment involving the arthritis medicine Enbrel. Being a journalist at heart and by profession I immediately began searching the internet to learn everything I could about IPS. During my search I found a researcher by the name of Dr. Ken Cooke at the University of Michigan. Dr. Cooke was the researcher behind the Enbrel study. I reached out to him in an email and to my surprise he responded. Dr. Cooke became my personal resource. He explained his study to me and told me everything he could about dealing with patients like my dad. My dad received the experimental doses of Enbrel for more than two weeks. His lung function improved slightly but not enough for the doctors to be certain of their diagnoses.

On July 4th one of the lead doctors came into the ICU to tell us that once again they had no clue about what they were dealing with. He suggested we consider doing a major surgery that would allow them to take a section of my father’s lung out to be tested. He explained that someone from our family would need to meet with the team of doctors to discuss the procedure in the coming days.

On July 6th I went to the hospital early. I spent the entire day talking with the team of doctors about benefit versus risk. They spoke to me as if he wasn’t even in the room. I couldn’t believe that they could talk about his life in such a matter of fact way with him lying right there. We were given two options, operate or give him another experimental drug that would more than likely kill him. We were told that if we chose to operate a ventilator would be used and they didn’t know if he would ever breathe on his own again. 

My dad’s worst fear had been a ventilator. He had been terrified at the thought of it for weeks. Suddenly almost overnight my father gave up. He said whatever we decided would be fine with him. He didn’t even want to be a part of this important decision. My heart broke as he told me, “It’s too late for me, but maybe you can help somebody else.” 

When the day was over after talking with all of the experts and weighing all of the risks my family and I decided to go through with the surgery. We scheduled it for the very next morning. I will never forget the last moment I spent with my dad that day. I leaned down and kissed him goodbye just like always. I told him that I would be back in the morning before his surgery. I then went out of the room and into the empty hallway, suddenly I heard him call my name with his weak voice. I turned and went back to see what was wrong. While I stood at the door he said “I love you” and all I could say was, “I love you too. I will see you in the morning.” With tears streaming down my face I turned and left.

That visit with my father before his surgery never happened. When I arrived at the hospital the nurses refused to let me into the ICU. I was beyond upset, I was furious. I had promised my father that I would be there for him and now these people and their system were denying me this moment. Later, I was told that they had taken him to surgery and that I would just have to wait. He went into surgery alone. He never even knew that I was there.

After several hours passed, the doctors called to say that he was out of surgery and that I could see him. I was alone and they tried to prepare me for what I would see but no one could have prepared me for the horror of seeing my dad in this condition. The ventilator that he had feared so much was sticking out of his mouth with tape all over his face and there were tubes running out of his chest to a bucket on the floor. The bucket was constantly filling with blood. This image is forever stored in my mind.

After the surgery, the doctors were able to tell me exactly what my father was battling. He had developed CMV (Cytomegalovirus) as a side effect of the bone marrow transplant that he had under gone months earlier. The same bone marrow transplant that had sent his cancer into remission was now threatening his life. They told me that he was going to be placed on two medicines and that when used in combination they can be very effective. I finally had some form of hope. I felt comfort in knowing that the doctors finally knew what they were dealing with.
With the new diagnoses I wanted answers. I wanted to know what CMV was and what it really meant for my father. I might have had hope but I still did not trust his doctors. I reached out to Dr. Cooke to get the answers that I so badly needed. He told me that CMV is treatable but only when caught early. I asked about the medicines and Dr. Cooke confirmed that these should be effective when used together. He also told me that CMV could have been caught with a blood test. That’s right a blood test could have diagnosed my father months earlier before he ever had any symptoms. A simple blood test might have saved my father from months of suffering. Dr. Cooke also told me that this blood test is routine when someone receives bone marrow from a donor. Unfortunately for my father his doctors used his own bone marrow for the transplant so therefore they never tested him.

Over the next three weeks, I spent the majority of my time sitting in the room with my father. I would leave work and drive the hour to the hospital and stay until the nurses kicked me out. Sitting in silence and worrying every time one of the machines beeped or buzzed. My father was sedated and for this I am very thankful. I didn’t want him to know how bad things really were. When I wasn’t able to be with him I was calling the ICU to check on him. All of his doctors had my cell phone number and we stayed in constant contact. 

My world came crashing down on the morning of July 26th. I was at work when the ICU doctor called me to say that they had done all that they could do. My father’s body was shutting down. I couldn’t believe what I was hearing. It felt like a dream. When I hung up I ran into the restroom, locked the door, and collapsed into a crying heap. It was over. I couldn’t fix it. I couldn’t save him. At that moment I felt like I had failed my father and my entire family.

I was then forced to make the hardest phone call in my entire life. I cried as I told my mother that we had to go to the hospital and do the unthinkable. I was the first one to arrive at the hospital and as I waited for my mother and brothers I sat with my father in his silent room preparing myself for the most difficult decision that I have ever made. At 3:00pm on July 26, 2006 I called the doctor to come and disconnect my father’s life support. My family and I gathered around his bed in the small ICU room and held my father’s hands as he slowly slipped away. It was a moment I never want to repeat.  It is a moment that I relive far too often.

Over the next few days I became focused and unemotional. I was on a mission. I wanted to know exactly what happened and how it could have been prevented. I requested an autopsy. I was determined to prove the incompetence of my father’s doctors.

It took months to get the autopsy results and when they came in I sent a copy to Dr. Cooke. I wanted an educated opinion on what happened. The autopsy confirmed that my father had CMV but it also showed that it wasn’t what killed him. The medicines were actually working. This made me even more certain that if my father had been given that simple blood test the CMV could have been caught in an earlier stage and he would be alive.

My father contracted a staph infection in the ICU while he waited for the doctors to make the right diagnoses. Their delays killed my father and I was determined to prove it. I arranged a consultation with a medical malpractice attorney. My brother and I went and told our story from beginning to end. I gave the attorney copies of the autopsy, my complete diary of events, and all of my father’s medical records. They spent weeks going over all of the information. 

When the attorney called me I couldn’t believe his words, he said that my father’s doctors were definitely negligent but that my father’s life wasn’t worth enough to file a suit. My father’s life wasn’t worth enough to file a suit? How could anyone judge what someone’s life is worth? The attorney told me that it was based on earning potential and dependents. My father was 59 years old and didn’t have much earning potential left according to the legal system and although my brothers and I were all under thirty we were all adults. The fact that he would miss out on the second half of his life because of a doctor’s mistake meant nothing. The fact that my father would never meet my future husband or be there to walk me down the aisle meant nothing. The fact that he would never meet his grandchildren or take them fishing meant nothing. It is still hard for me to understand how someone could say that my father’s life wasn’t worth enough to fight.

For five years now, I have tried to replace these memories with ones of happier times. Unfortunately, this nightmare and these vivid images will always be a part of me haunting me in the quiet moments of life. As bad as I hate to admit it, my father was right it was too late for him. What I want more than anything now is to use his story to help someone else. That’s what he wanted. If I can help one person to avoid the suffering that my father endured I will feel like I have fulfilled his wish. If I can convince one doctor to request these blood tests on all bone marrow transplant patients and not just a select few then I will know that I have made a difference. If I can help one person who is out there searching for the answer to save their loved one it will ease my pain. If my story can achieve any of these goals then I will know that my father did not die in vain and my nightmare can finally fade away.

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