There is a dark cloud where our healthcare system once stood.

I would not normally use this venue as a political forum, but with so many Americans unemployed and without health insurance, I felt I had to share with you the reality of what can happen should you actually need medical care and be unable to pay for it.  We have heard a lot about ObamaCare, and I even believe I am paying for it with my tax dollars and increased health insurance premiums (that came with larger deductibles and co-pays), but I see no evidence of it in the real world.

The past 10 days has been a real challenge for me.  I feel as if I have been stuck under a dark cloud.  I was thrown into a world of things I did not understand, that needed to be untangled and set right in order to get a family member the care she needed and deserved after a serious injury.  This world I did not understand (and still don’t), is the maze of bureaucracy we call the healthcare system.  It is a dark cloud at best.

I would like to think that some people fare well through it because they have jobs and insurance, but only a portion of what we encountered can be explained away by the fact she was not insured.  And for those of you that have been deluded into believing that the unemployed, under employed, and other unfortunates are well taken care of by this system.

The truth is, if they are not strong enough to fight the system in the midst of fighting to recover from illness or injury this dark cloud will simply chew them up and spit them out.

It began with a car accident.  She recalls bits and pieces, but was in and out of consciousness prior to arriving in the Emergency Room.  In the ER, the x-rays revealed a broken back.  The staff member assigned to wheel her out of emergency motioned for her to get in the wheelchair on her own.  When she fell to the floor trying, she had to ask him for help.  I know of at least a dozen unemployed persons who would have known better than that.  A social worker or case manager visited with her briefly and left her a list of places she could call for help.  For some reason, I expected that it was actually that person’s job to help her to get help, considering she was being given some pretty hearty pain killers and could still not think much past the pain.  At this point I began to feel the dark cloud creeping in.  She did not have an appropriate place to recover from a broken back and no one seemed to be working on a solution.

The following day when I went to visit, she was wearing a brace.  At first glance, it looked to me like it was on sideways.  She assured me that they had instructed her to wear it that way.  Although she had been instructed not to twist or bend, she had to keep adjusting the brace by twisting so a large hard spine would not protrude into her breast.

The next day (Saturday) we asked about case managers and social workers and were told they would get back to her.   She was seen by a physical therapist who gave her some instruction on what not to do.  She was not to lift anything heavier than the tiny water pitcher on her hospital bed table.  Then she was taken on a walker without front wheels for a stroll down the hall.  Lifting the walker to move it forward was excruciating for her!  The dark cloud was just not going away.

Another problem was that the movements she was not to make, could not be avoided in a household that was not set up with a hospital bed, grab bars in the bathroom, and suitable hospital gear like a walker with wheels.  There was already talk of releasing her and the hospital staff could not even come up with a proper walker for her to use while in the hospital. This dark cloud was firmly in place and it was clear that it would go nowhere without having a better understanding of how the “system” worked.

Not 15 minutes after I got home from visiting with her Saturday night, she called me in hysterics.  The primary care physician assigned to her case had seen her just moments after she received a pain injection, and told her she was ready to be released.  I called and spoke to him to see how that could be, and he told me the hospital could not keep her and it was up to us to make other arrangements.  The Salvation Army Shelter was actually suggested as an alternative!  Then he rudely told me he did not have time to talk to me about it.  I was livid!

Luckily I have friends at church that work in the hospital setting and I got some very good direction from them on what to say, who to say it to, and how to say it, so late Saturday night I called the nursing supervisor and expressed my concerns.  Among those concerns, had she been seen by a neurologist?  What was being done to secure after care?  Had anyone applied for or helped her to apply for benefits?

Another friend, who is a notary public, met me at the hospital Sunday morning to notarize the healthcare surrogate papers I had drafted.  While we were there, a neurologist came to see her.  The neurologist explained the injury to us and said she was in the wrong kind of brace.  She also reviewed older MRI films I had brought to the hospital so she could be aware of any new developments in a pre-existing problem with a disc in her lower back.  The old injury was dismissed as something that could be looked at after she healed from the acute condition she was being hospitalized for.  I thought that the dark cloud was finally lifting, and went to church thinking things were much more positive.

I returned after church, and the occupational therapist came by.  The OT looked at the brace and said it was on all wrong, and proceeded to adjust it in a manner that looked to me like it was still sideways, but in the opposite direction.   Then the physical therapist came back for another walk in the walker without wheels.  Later, a very nice young man came to measure her for the correct brace.  Of course he asked why she was wearing the brace that way.  As I had suspected all along, it was on sideways! He put it on her correctly, and said they would bring a custom brace for her on Monday.

I instructed her to ask for a patient advocate on Monday morning to see if they could help her apply for benefits so she could be released to an aftercare facility.  When I came back on Monday evening, she seemed to be doing a little better.  I had found a proper walker at the Goodwill Store, and brought it with me.  It made it a lot easier for her to get from her bed to the bathroom.  She said she had been told that a patient advocate would come to see her before 5:00 PM, but no one ever came.  I asked at the nurse’s station, and was told that patient advocates were only for patients that did not have family, and that I was her advocate.

The dark cloud had only gotten darker.

The next day, which was Tuesday, I got a call in the early afternoon from someone who said they were a case worker.  She had been trying to contact Medicaid for my niece, but when she called the phone was answered by a recorded message saying the call volume was too high, call back later, and then disconnected.  About an hour later I got another call saying she was being released and that she did not need any more OT, PT or to be in an aftercare facility.  My home was the safest alternative even though of the two beds in my home, one was too tall for her to get in and out of and the other is just a mattress and box springs on the floor, not to mention I have an 80 pound dog that does not know what a broken back is.  They gave her an Rx for about 3 days of pain meds and said she should go see her primary care physician.  She did not have a primary care physician because she had no insurance, but no one seemed to care about that.

Well I could not just leave her alone for 10 to 12 hours a day, so I arranged to work from home the rest of the week until I could work out a few things to make it a bit more comfortable for her.  That is when the dark cloud utterly engulfed me.

Things that I can easily do from the office were just cumbersome and unmanageable from home.  I was scheduled pretty light on Wednesday, so I did not “feel the pain” so much, but on Thursday all hell broke loose!  A bunch of problems came up and without being able to hand things off to other departments it got very stressful very quickly.  My niece, sensing my frustration, did not want to bother me to tell me she was in a great deal more pain, and could not get out of the bed to get to the bathroom because it was just too painful.

Finally I started to just make phone calls for her.  Medicaid told me she was not eligible because she did not have a child living under her roof.  I am still wondering if that is really true.  A local Crisis Center pointed me to the county Health and Human Services department, so I called them next.  I held for about an hour and a half (NOT an exaggeration) on my Bluetooth in the left ear, while I continued to try to do my work with the other phone on my right ear. Finally a wonderful caring person answered, listened to all that was going on, and transferred me to another wonderful caring person that got her case moved to urgent review and even gave me a number to call her on Monday, so I would not have to wait on hold for so long.  They would not be able to get her approved until Monday because the office would be closed on Friday for Veterans Day.

Health and Human Services told me that with a broken back and being unable to work, and already approved and receiving food stamps, she would be covered and could be placed in a skilled nursing facility.  They did not understand why the hospital had not helped her to apply when she was first admitted as it could have easily been done and approved.  I was also told that if her pain got worse, or if I just could not handle her care, that I should take her back to the Emergency Room, and to let them know that her case was under urgent review and should be approved on Monday.

Her pain did get worse, so Thursday night I took her to the ER at a different hospital where I thought she would get a better level of care.  They were much more personable, and much more efficient, but did not want to admit her.  Finally about midnight I think, they said they were bringing someone in to do another MRI and if there was a change from her previous MRI they could treat her.  I was exhausted, and they said it would take a while, so I went home to get a little sleep.  BIG MISTAKE!

I awoke to a phone call saying they were transferring her back to the hospital where we had all of the trouble with in the first place.  Before I could get dressed and get out the door I had another call from her neurologist asking me if the 2^nd hospital had given her a choice of where to be treated.  Sounded like hospital politics were a little ugly between the two facilities, and it seemed like neither one of them wanted to take responsibility for her care.  The neurologist went on to say that she had reviewed the MRI and that she had scheduled emergency surgery for that afternoon, pending my consent.  She thought that it might help to remove the bulging disc in her lower back to ease some of the pain, although she did not sound terribly optimistic based on the location of pain that my niece described.

I will be honest.  My decision to consent to the surgery was in a large part simply because if we did not do it now, and it was necessary in the future, I was not confident that anyone would be willing to perform it.  That is how little faith I have come to have in our healthcare system.  A fragmented disc was removed, and it made a huge difference in her ability to cope with the pain.  Finally she had a glimmer of hope that things would get better.

The dark cloud was gone for the moment, but not for long.  She was moved back to a room she shared with an elderly patient whose family was there constantly.  The room was filled 24/7 with visitors (there used to be visiting hours so patients could get their rest), and all their stuff including a cooler filled with their snacks and drinks and a scooter one of them required for mobility.  They had her bed pushed to the corner of the room and an obstacle course for her to navigate to get to the bathroom.  The hospital staff did not seem to notice, or even ask that they make some space for the other patient in the room.  She put up with it until she was about to explode, and after much complaining was finally moved to another room.

Her neurologist had ordered a change in her meds, but the staff did not seem to get the message and continued with the very strong IV meds when she was to be taking something entirely different by mouth.  She tried to tell them, but everyone insisted that they knew best.  She had been on solid food since she returned from the recovery room, but the following day the dietician insisted she had only had, and was only to have, clear liquids.  Would this dark cloud ever leave us?

It is now Sunday evening and I am wondering what the evil dark cloud will bring tomorrow.  I am hopeful that County health will get her insurance approved and the hospital will place her in a skilled nursing facility, but I refuse to become lax and assume anything will go right for her.  I will be vigilant, calling the county in the morning to let them know that she is back in the hospital listed as “self-pay”, though she has no money, no job, no assets, and will not be fit to work for many months.

She needs help applying for disability, and after that, help finding a suitable place to live on a fixed income.  She would benefit from any training that might be available to learn skills that would allow her to work again, though at a job not so physically demanding as what she has done in the past.  Will there be anyone to help her find and secure those benefits?  It must be somebody’s job.

I am working hard at remaining hopeful, that in spite of this tragedy, something good waits behind that dark cloud, but it is a real stretch for me.  More than anything else, I am appalled that an injury as serious as a broken back, and the subsequent surgical after care was handled so poorly by so many people.

There was a time when our health care was second to none; when hospital workers were highly regarded for going the extra mile to show they really cared, and actually assisted patients in making arrangements for a safe and suitable ambulatory plan.  In this entire affair, only one person I encountered actually represented the hospital industry with that kind of caring integrity, and that was the orderly that wheeled her to pre-op.

Maybe it is because they are understaffed.  Maybe it is because they are overworked.  Maybe it is because the people doing the grunt work of caring for patients are sorely underpaid, because so much of our healthcare dollar goes to funding insurance against claims of malpractice.  Whatever it is, it stinks, and it needs to get fixed!

So, thanks for letting me get on my soap box and unload this burden.  I can feel the dark cloud lifting from me, and my heart goes out to the next person who will bear its weight.

Blessings & Adventure,

Lynn “lynnibug” Rios

When election time rolls around, make your dissatisfaction with what has happened to our infrastructure known.  If we don’t fire the privileged few that brought this dark cloud upon us, and replace them with more competent, forward thinking servants, our children and their children will be stuck with a dark cloud where their healthcare should be.