Dear American Healthcare System- You fail.

Dear American Healthcare System- You fail.

This isn’t about a single payer system.  Those type of systems have their own set of issues.  But while the political parties argue about the costs and accessibility, your failure runs deeper than that.  What good is a healthcare system that is cost efficient or accessible if it does not provide quality care?

You have failed so many people.

You fail those who get misdiagnosed or not diagnosed at all.  

You fail those who go to the doctor to get their symptoms checked out and those systems get brushed off.  Then those patients find out months later that they have Stage IV cancer.

You fail those who need psychiatric care, but don’t get it and end up being a danger to themselves or others.

You fail those who have progressive diseases and have to pay $20k a year on their medicine.

You fail all those patients who fall through the cracks because doctors are too busy looking at their one system of expertise instead of the patient as a whole person.

You fail every patient that has had their drugs mismanaged.

You fail to provide support to the families.  They may not be the patients, but having family members who are sick is stressful and they need support too.  There need to be crisis counselors.  

You fail those who get admitted to the hospital for a procedure and while in the hospital, the patient develops an infection.  Deadly infections such as C. Diff (costridium difficile colitis), MRSA (Methicillin-resistant staphylococcus aureus) and VRE (vancomycin-resistant enterococcus).  These infections have the potential to turn into sepsis, which can be deadly.  

Hospitals need to be held accountable for infections acquired in the hospital.  People should be able to be treated without the fear that they will develop a life threatening infection.  

This is not acceptable.

Bryon fought many infections during his stay in the ICU.  I had to learn the names of antibiotics that I never knew existed and should not have had to know existed.  

Hearing about Rep. Steve Scalise being readmitted to the ICU for infection brings out many emotions for me.  A sort of PTSD where I relive parts of the nightmare.  I can still feel the fear and helplessness I had when Bryon was fighting the infections.  For months I sat by his bedside, just waiting.  Staring at the machines that displayed his vitals and trying to will them to be stable.

I feel for Rep Scalise’s wife.  I don’t want to be arrogant and say I know exactly how she feels because everyone handles crisis differently, but I have a better idea than most as to what she is feeling.  She should not have to be dealing with this, especially after the trauma of her husband getting shot.  I just hope she gets the support she needs and that her husband gets well again.  I hope that the outcome is different than Bryon’s outcome.  

Sincerely-

One pissed off widow.

Advertisements

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.

20170613_095345

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.

19059923_10155564907699869_3300129696158430501_n

0.3

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?