A conversation with NFL player and patient advocate Rolf Benirschke

Earlier this week, I had the opportunity to attend an event with NFL player and patient advocate Rolf Benirschke.  This event took place at the New York State Capitol and was put on by GOBOLDLY and New York Health Works.  The event was attended by a diverse group of people including legislators, legislative staff, researchers, pharmaceutical company representatives, representatives from healthcare organizations and patient advocates.  I was excited to have the opportunity to attend this event.  I am trying to learn as much as I can about health care and patient advocacy.  I attended this event with one of my best friends, Jen.  She is the New York State and Vermont Advocacy Director for the National Multiple Sclerosis Society.

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The event opened up with NY Assemblywoman Crystal D. Peoples-Stokes (D-Buffalo).  She talked about her experience working with hospitals in Buffalo and how they collaborate with private companies who are working bringing the latest medical technology into Buffalo Hospitals. She also shared a personal experience about a friend with lung cancer who was receiving a cutting edge therapy in New York City that was developed in Buffalo at Roswell Park Cancer Institute.  

Rolf Benirschke was in his second season as a kicker for the San Diego Chargers when he was diagnosed with ulcerative colitis.  In his third season, he collapsed on a cross country flight and had to have two surgeries and spent 5 weeks in the ICU.  Like Bryon, he lost part of his intestine and went into septic shock and had organs shut down.  He came close to dying.  Rolf states that he didn’t know why his life was spared, but he was given a second chance.  He got his position back with the San Diego Chargers and played for seven more seasons.  

Rolf also stated that while he was in the ICU, he received 80 units of blood.  This was in 1979 when blood screening wasn’t as safe as it is today.  Rolf contracted Hepatitis C.   Rolf was given therapies for Hepatitis C which worked.  He expressed gratitude because he knew that he was lucky.  He brought up how Arthur Ashe contracted HIV from a blood transfusion that he received while having heart surgery.

It was inspiring to see Rolf share his story because the only way we are going to make positive changes in our healthcare system and patient care is by education.

We are living in exciting times when it comes to medicine.  My job is in oncology data and I see it.  They can test some tumors for the specific markers within that tumor and a patient can get a treatment based on their specific tumor markers.  I truly hope that diseases with a grim prognosis will be curable in our lifetimes.  

Jen and I got a chance to speak to Rolf.  We discussed barriers to patient care and we discussed part of Bryon’s story.  I encourage everyone to get out there and learn about the healthcare system.  You don’t need to work in healthcare to learn about it.  You never know when you need to apply that information for your own care or that of a loved one.

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Bryon died of medical complications.  The odds of what happened to him were 0.3%.  I will never know why he was in the 0.3%, and not the 99.7% that has an uneventful recovery.

This graphic is from the NHS.  For those who may be unfamiliar, NHS stands for National Health Service which is the healthcare system in Great Britain.  I am not surprised.  Their election graphics are phenomenal.  If you get a chance, watch the coverage of the British elections on Thursday night.  Therefore, it doesn’t surprise me that they have great graphics in healthcare as well.  I was also told when I was advocating for the Multiple Sclerosis a few weeks ago that the NHS has the best literature for MS patients.   

Before you think I am veering into a post about socialized medicine, you are wrong.  I just want to talk about this awesome graph.  I don’t know the purpose of this graph.  Is it due to the recent terror attacks and is the purpose of this to keep people from fearing terrorism?  Or maybe the purpose of this graph is to raise awareness for heart disease or cancer? I don’t know.

I am not against raising awareness for the more common diseases like heart disease and cancer.  Awareness usually makes patients aware of the disease and the warning signs and thus they are more likely to seek medical attention during the earlier stages of a disease and that produces a better outcome.  Awareness usually increases funds for research through grants and donations.  As far as I am concerned, awareness for any disease that has the potential to kill is a good thing.

But according to this chart, someone has a better chance of being murdered or dying in an “undetermined event” than dying of medical complications.  Therefore, people usually don’t think that it is a possibility.   Because people who live in first world countries do not think that these events happen.  But they do.  

After Bryon died, I kept playing the events in my head over and over again.  But then I realized that I am not a doctor.  I do not have a medical degree.  I can only speak for living in the U.S., but here there is a feeling that the healthcare we receive here is the best.  We believe that doctors will take of you.  If you have a problem, the doctors will figure this out.  But unlike cancer ribbons and wear red in February for heart disease, there is no awareness for medical complications.  How do we as a society change that?  How do we prevent medical complications from happening?

 

Why am I doing this?

Yesterday my blog reached a milestone.  A milestone that I never would have dreamed of ever happening, let alone only after two and a half months.   Yesterday my blog reached 10,000 page views.  I never would have thought that my words about Bryon would go so far in such a short time.  

So why do I do this?  Anyone who knows me in “real life” would tell you that I tend to be a pretty private person who takes a long time to open up to people.  I usually prefer to keep in interactions with people at the superficial level.  Want to talk about the weather?  Sure!  Talk about emotions and feelings?  No way!  Before Bryon got sick, I kept all but a few people at an arm’s length.

So what has compelled me to share some of my most private feelings on the internet? If someone would have told me that I would be sharing some of my most personal thoughts for the whole world to see, I would have probably looked at them like they were nuts.  But here I am.  Sharing my personal thoughts in a place where anyone can see.   I am not lying when I tell you that it is one of the scariest things I have ever done.  I am most likely ruining my chances of ever getting a boyfriend (in the very distant future) because any potential suitors would likely find this blog during a google search and go running far away after reading this.  And I can’t blame them.  Run, Forrest, Run!

There are many reasons I pour my heart out on the internet.

I have barely begun to share most of Bryon’s story because it is still too painful for me to share.  But I feel compelled to tell Bryon’s story in an effort to help other patients.  I want to help people know how to advocate for themselves and I want to empower people to find the right knowledge so they can make educated medical decisions.  I want to help people know what kind of questions to ask their doctors and what to do if something just doesn’t seem right with themselves or with the health care that they might be receiving.  I want people to know why it is important to know their own health history and, if possible, that of their family members.

I feel compelled to share my story as a caregiver and an advocate because I want to help the family members and friends of the critically and terminally ill.  I was thrown into a situation where one day my husband was recovering from a minimally invasive surgical procedure to fighting for his life in the ICU a few days later.  I don’t think there is a word in the English language that could accurately describe how overwhelmed I felt during those weeks that my life came crashing down. I have a background in oncology data and oncology was one of the few medical specialties that did not play a role in Bryon’s care.  While I had more medical knowledge than the average person, I am not a doctor or nurse and I had to quickly adapt to all the new medical terminology and procedures.  Bryon also could not speak for himself while he was in the ICU and he depended on me to advocate for him.   And unfortunately advocating for patients is not easy.  As a caregiver, you need to be prepared to fight for your family member or friend.

I feel compelled to share my story because I want to help other widows and widowers.  Widowhood is a very lonely place.  It helps to read that we are not alone and that other people can relate.  I appreciate reading blogs and memoirs of widows and widowers, especially those who are further in the healing process because I want some sort of idea of what to expect down the road.  Since I benefited from the stories of others, I want to share my stories with the hope that it might help another widow and widower.

I want to share my story to help those who have gone through a trauma and/or have experienced the loss of someone important in their life.  Grief is grief regardless of whether it was a spouse, a family member or a friend and we can all relate and support each other.

I write because it helps me process my own emotions.  I was in the “widow fog” for several months after Bryon died and the fog didn’t start to subside until I started writing about my feelings and my experience.  Before I started writing, I could bottle up my emotions and ignore them for a later time.  This isn’t healthy.  Writing forces me to acknowledge what I am feeling at any given time and it forces me to deal with my grief instead of ignoring it.

I write because I must preserve as much of our story for my daughter.  She won’t have any first hand memories of Bryon and she will have to rely on the stories that are told to her.  I can already start to feel that my memories are not as sharp.  I feel a huge void that Bryon left but it’s getting harder to remember the little things.  I am fearful that if I don’t write things down then those memories will die with Bryon.

I hope to become a patient advocate someday.  I want to raise awareness for the issues that plagued Bryon and ultimately took his life.  I want to empower the caregivers of critically and terminally ill patients.  I share our story to meet others who have been in similar situations and have similar goals.  I write with the hope that I can expand my network so that someday I am able to accomplish my goals of helping people.

The first few hours after

Sunday, August 21, 2016

8:35 am

My husband had just been declared dead.  I quietly sat in a chair on his right while the doctors were finishing up.  Our friend (and Godmother to our daughter and like a sister to me) was sitting on another chair in the corner of the room.  We were told to go to the waiting room so they could clean him up.  We could come back and see him before they take him to the morgue.  My friend and I went out to the waiting room where her significant other was waiting.  We knew we had to let people know about my husband’s death.  My husband worked in politics so my friends made sure that the proper people knew of his death.  I decided to make calls to my family and friends.  I wanted to make sure everyone close to us knew before the news of his death started to appear on Facebook.

My first call was to my father.  It was his birthday.  I had made sure to wish him a happy birthday on his Facebook wall at midnight because I knew my first call of the day to him was going to be telling him that Bryon was dead and I wanted to say happy birthday before he got that news.  I had asked my father to call our relatives so they knew.

I called our close friends.   Every call started the same, almost as if I was a robot.  “Hi, it’s me. I was calling to let you know that Bryon passed away this morning.”  Almost everyone, if not everyone, started to cry or seemed shocked.  Bryon came close to dying many times in those five months but always seemed to bounced back.  I think everyone wanted to believe that he was going to bounce back.  I know I did.  I continued to make each phone call in a robotic manner.

I was surprised at how easy it was to make phone calls but I know now that I was in some form of shock. Before my husband died, I always thought that being in shock was a mental state where one couldn’t function at all and that there was some level of not believing the current situation.  At the time, I did not think I was actually in shock.  I was functioning.  I fully understood that his body just couldn’t take it anymore.  It had been a long five months and I had been staring at all his numbers on the monitor.  I knew from the numbers he had over the previous three days that he wasn’t going to bounce back.  For five months, I knew that this was a possible outcome and I thought I was prepared for it, but you are never truly prepared for it.

After the nurse cleaned him up, I was allowed to go back to his room.  As I walked into his room, I was taken aback at how still and quiet it was.  The beeping machines that had been working and monitoring his vitals had been shut off.  They were no longer needed.  After 5 months, Bryon finally looked like he was at peace.  I sat to the left of him and just looked at him.

My friend and I decided to say a Hail Mary.  We cried through it.  Then the priest came by.  A member of the pastoral care staff had tried to contact him while he was saying morning Mass and the priest scolded me for the interruption.  I remember saying “I am sorry my husband didn’t die at a more convenient time.  I did not know you were saying Mass and I really could do without the attitude right about now.”  I have never snapped at a priest like that before.  Let’s hope my grandmother never finds out that I talked to a priest like that.

Earlier that morning when the nurse sent me out of the room to clean him up, I thought I wouldn’t need to come back. I had just spent the last 3 days sitting in his room as I watched him actively die.  The death felt so final.  I didn’t think I needed any extra time but when I went into the room, I found that I needed to just look at him.  I remember thinking about how I was never going to kiss him again or feel his embrace.  I was never going to hear him tell a funny story.  He had been a person that was so full of life and now he was gone.  I didn’t want to leave him.  The next time I would be seeing him, he would be in a casket.

His nurse was waiting for hospital transportation to come and take him to the morgue.  I began to feel anxious.  What if the transporters don’t arrive?  What if his body gets lost?  I felt like I needed to stay there to make sure he got moved to the morgue.  I had spent the past five months monitoring his care and needs.  Was his test done?  What were the results? Has the specialist seen him?  Did he get his medicine?  Does he want to change the channel on the TV?  For the past five months, I had to have my cell phone fully charged and by my side.  One time I dropped my daughter off at daycare and I had left my phone in car and had a panic attack when I got back to the car and I had realized that I had left my phone there.  What if something happened to Bryon and they were trying to get ahold of me?   I came to the realization that it was just his body. The life was gone from his body and he no longer needed me to monitor every move.  It was time for me to go back to Albany. It was time to go home and see my daughter.  It was time for me to go home and plan his funeral.

As I walked out of the ICU, I stopped by the team of his doctors who were rounding on another patient.  They all stopped when I approached and just looked at me sympathetically.  I thanked them for taking care of my husband and told them that I knew they did everything they could.

It was late morning when I walked out of the hospital like I had every day for the past 5 months.  The only difference was this time I was walking out of the hospital for the last time.  And it was without him.