Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Monday, August 3, 2009

Health Care Status Quo

Did you all think my friends and I hung out, drank and shopped, shopped, shopped over the weekend?

Was that the vision of us you had dancing in your heads?

Yes, okay, we did do that too.

I'm going to admit though, as I have many times before, that I am a girly geek.

I do love my shopping, dancing, etc., but I love our coll conversation just as much.

It's not cute to be dumb, pretend your dumb, or any variation of these two possibilities.

Smart girls are HOT.

Of Course, within our girl time, Steph, Colette, Noami and I decided we would put our heads together for health care.

As usual, Why not do it while having some fun?

We are amazing multi-taskers.

Riding in the car to Manhattan for some serious SoHo Shopping, we decided that I would type up our conversation regarding the travesties we see in the healthcare system.

Boy, can we multi-task.

Colette, one of my best friends from college, is an RN who pracices with The Visiting Nurse Association in the Bronx.

Naomi, Colette's sister-in-law, and a new fun addition to our friend base, works in Insurance Claims for a hospital.

We certainly have a lot of inside opinions regarding what we see.

We want the word spread!! We all see very clearly, the the health care infrastructure is headed for implosion.

Here is the summary of our experiences:

There has been a lot of speculation regarding how the government will "socialize" health care.

The major fear regarding reform is any idea will bring big government between patients and doctors and surgeries and procedures.

This is a giant leap away from Clinton era idealisms that functioned under the assumption that less government is more government.

I have said it before, I will say it again, we cannot make educated predictions regarding our future if we don’t know our history.

The Clinton era, “HillaryCare” didn’t work.

It’s time to move on (maybe to a different kind of “hillarycare,” with a completely different “Hillary.” Mrs. Clinton is really busy)

I hear this fear of socialized medicine often explained in terms that describe none other than a dantesque circle of hell where patients wait in pain for months for surgeries and ultimately die unable to receive care because of the disorganization surrounding a government run healthcare plan.

What I don't hear are stories of the status quo.

Let me tell you a story straight from real time home health care nursing.

Recently, a patient found his way into the home healthcare system due to the placement of tracheotomy.

A tracheotomy is a hole in the neck that allows a person to breathe.

Without the placement of such a device, the patient’s lungs will fail, breathing will stop.

Clearly, “trachs” are intimidating for the patient, the family, and even some inexperienced nurses.

Trachestomies require highly specialized treatment and tools needed to keep the patient breathing.

Also, the patient now has an open gaping hole that runs to his lungs. The benefits (i.e. the person can breath and survive) outweigh the risks (i.e. severe infections, pneumonias, displacement leading to respiratory failure).

Home care nurses must be especially cautious in preventing the introduction of infection while changing out tubes, making sure the ties are placed properly so skin will stay intact, preventing another infection, etc etc etc.

How would you feel knowing that without a gaping hole in your neck you would be dead? How would you feel entrusting your life to the hands of medical staff?

The patient was an anxious.

He underwent the surgery that placed the tracheotomy due to a sudden respiratory failure.

The cause remains unknown.

Before the sudden failure of his lungs, he was a healthy fifty year old man. He biked. He did not smoke. He was an average man living life day-to-day.

One morning, he woke up to discover his lungs had failed and he would forever live with a hole in his neck.

Imagine the trauma in that discovery!!

The type of trach he received didn’t even allow him to speak. His lungs had failed. He was now at risk of dying at any second, and he couldn’t speak.

That sounds like a really bad day.

Then, since the surgery to place a trach is relatively noninvasive, he was quickly sent home.

There is a trend occurring in America’s hospitals to keep patients out of inpatient status.

Inpatient status is expensive. It requires the payment of 24/7 care. Insurance companies don’t like it. It take away from their bottom line.

Patients are rushed to be discharged.

This man was rushed to be discharged.

Unfortunately, when this happens, there is little time to prepare and coordinate

Very intricate care.

To discharge a trach patient, the education is multifaceted.

Medications need to be prescribed and explained, and then, under ideal circumstances, given to the patient, before leaving.

With a trach, all the materials need to be available to go home with him. The patient and a family member needs to know how to use these tools.

They need to know how to react in an emergency, such as if the plastic piece holding the hole open were to fly out.

They need to know how to dress and tie to keep the trach in place and prevent skin decay from chaffing.

Ideally this is all explained. In the best case scenario, this is all done.

Even if all this discharge teaching happened, the teaching is all being done during a period when the man and family are in shock.

“I won’t be able to talk ever again!!!” is probably running through his mind.

“If this falls out, I stop breathing.” My guess is this thoughts is probably also interfering with learning.

I know I wouldn’t be able to get my mind off those facts.

Then he is sent home, where a Home Health Nurse is assigned to his case.

What does the Visiting Nurse find? He has no supplies, minimal teaching, his whole life is in disarray from the stress and he is seriously anxious and depressed.

Big surprise there.

She scrambles to make sure the man has all the materials he needs, but lung infections come on quickly, especially when you have a big hole to the lungs.

HE might as well have posted a sign that said “Bacteria, give me pneumonia, infect here.”

He died of pneumonia very quickly after being released from the hospital.

This is the status quo.

This scares me, but it doesn’t stop there.

Most of us have heard of the Brooklyn woman who presented at the emergency room with abdominal pain and died in her chair in the waiting room.

This is not as isolated event as the media likes to make it appear. Long wait times for emergent care is actually one of the key complaints of patients and a goal to fix in healthcare reform.

These events, the status quo, certainly scare me, and I am not even done with my examples yet.

I have experienced an inability to acess care post transplant when a fever was brewing, my eyes burned so badly I felt I was going blind, and my stomach was so swollen, distended, and painful I could hardly move.

I was told I could not be treated locally.

I waited 24 hours for care at Dana Farber. At this time, my fever was 103 degrees. I was diagnosed with para influenza and a bacterial infection.

However, oral antibiotics didn’t work 24 hours after the onset of symptoms.

I ended up being admitted to the local hospital who could not see me through the clinic emergently on Saturday.

I spent 3 days as an inpatient receiving fluids and IV antibiotics.

Not only did the current system delay access to care in this situation, but it allowed a severe pneumonia to ravage my system.

It took me 6 weeks to recover my strength from this pneumonia.

Delaying my care also had the opposite desired effect on the insurance company.

Had I been treated with supportive care early on when the symptoms were vague, I may have responded to oral antiobiotics.

I certainly would have felt better and enjoyed a better quality of life for myself.

As far as the insurance company is concerned, the price now was jacked up from a couple hundred dollars to thousands.

This is what we have. From seeing the existing healthcare infrastructure as a student, an RN, a business woman, and now as a patient, I am scared.

The status quo is scary. Change is necessary. It is inevitable.

1 comment:

Anonymous said...

I think we could all probably tell horror stories about emergency room mishaps...because of course our catastrophies always happen in the middle of the night. Like the time I woke up with excruciating pain and drove myself to the emergency room at 1 AM. I won't even relate the events of that evening, but I totally agree that there must be a better way!

Glad to see you out there having a good time, Hillary.