It’s Always Something

Tuberculosis

A few posts back I wrote about the Ebola scare and how there are many other more dangerous bacteria and germs floating around in public that are never reported by the news.  The hospital I volunteer at now has signs about Ebola posted at all of its entrances.  The first question receptionists now ask patients is if  they visited any of the countries affected by the disease.  That’s all well and good. I know the American public has been freaked out ever since the first person died in the US, so places like my hospital are not taking any chances.

Imagine my surprise a couple of days ago when I got an email from the volunteer office at the hospital. To paraphrase:

A volunteer was hospitalized twice back in August/September. At the time staff didn’t know he/she had active tuberculosis. (Nothing was mentioned about when this person was diagnosed, but they did give the floor where this person stayed and to notify the office if, me the recipient of this email came in contact with this person).

How the hell do I know if I came in contact with this person if I don’t know their name?  Who knows how long he/she was walking around in the public before the diagnosis.

Then I find out another volunteer has tested positive for “latent” TB. I do remember this person telling me she had a weird growth on her lung and was going to have it biopsied.  That conversation was around September. She has not returned to the hospital to volunteer since then.

I looked up the treatment for TB and one of the side effects are serious damage to the liver, something I have no desire to endure… so I make sure to wear my face mask at all times when I am there. The head nurse asked me yesterday if I was wearing a mask because I was scared of Ebola. I wanted to say, “No, I’m protecting myself from TB since the administrators who run this place want to remain ‘tight-lipped’ about who has it.”  Instead, I told her I was around kids who were sneezing.

Next month I go for my annual TB test. They better pray it comes back negative.  This is the same that hospital screwed up my first chemo treatment, overdosing me with that poison, but I forgave them for that, even though staff was tight-lipped (again) about how that happened. I didn’t get an apology either, but I know the reason has to do with liability.  Saying they were sorry is an admission of guilt that could have cost them a pretty penny. I forgive but I never forget.

You may ask, why do I volunteer there, it’s simple. The patients. I feel the need to be there for them, as long as I can, until I piss someone off in administration and get kicked out. I advocate for those patients who can’t do it for themselves. I am their “squeaky wheel” when it comes to new hospital regulations that don’t make sense and may hurt the patient. Sometimes I lose the fight but management always know what I’m thinking. Paid staff may feel the same as me, but they are afraid of losing their jobs. As for me, I don’t get paid so I open my mouth.

This isn’t the first time I was in contact with someone who had a contagious disease. Before I was diagnosed with cancer in December 2010, I worked at an adult daycare for the mentally challenged.  I had no experience dealing with this type of population but I was hired because I passed their background check and I needed a job. Every week we had a new person to “coach” (supervise and play games with), in order for each of us to have a turn with the “difficult” ones (and they had plenty).  It was the worst job I ever had. Everyday someone had a tantrum; picture a grown man throwing around tables. That was a typical day for me.

One day another coach told me to be careful with the female I was watching, she had MRSA. I never heard of that, I found out it is a highly contagious disease. No one in management warned me. Not one. I found out later it’s against HPPA laws. Seriously? I am potentially exposed to a serious disease that I will never get rid of, and the law is more concerned with protecting the medical privacy of the person who has it? By the way, this person’s hobby was spitting on the cement floor and I was expected to clean it up.  After finding out that tidbit of information, I stopped.

Looking back, my immune system was already compromised. I had cancer and didn’t know it yet. Who knows what would have happened if I caught MRSA? I know I didn’t because the hospital (the same one who didn’t know the volunteer had TB) tested me for MRSA before I was admitted. Apparently this bacteria shows up a lot in hospitals. I wish I had opened my mouth to management at the daycare, but I didn’t. I needed the job so did my best to keep my distance from all of the consumers. Who knew what other illnesses they might have had.

Having survived cancer changed all that. Now I speak my mind to anyone and everyone. I’ve written a few letters too.  I can’t stand to see incompetence and lack of accountability, although those two “qualities” seem to be the new norm, whether its hospitals, adult daycare, or our government leaders.

If you are waiting for any of them to do the right thing, forget it. Be proactive. Wear a mask. Speak up, Make a scene if necessary. Tell others. The buck stops with us.

Be Well and Happy!

Ingebird

 

 

Break the Rules

Break the rule concept

When you hear the word bureaucracy, what comes to mind? Do you think of the DMV or some other government agency?  Our government isn’t the only bureaucracy, there are plenty of private companies loaded with red tape to make sure they watch out for  their “bottom line,” but the one thing they all have in common are rules to a game you and I are not privy too. That goes for health insurance companies and hospitals as well. They operate in a black and white world. You either fit their criteria or you don’t, and that can mean a matter of life and death. Yours. The ones who make the rules don’t care about your particular situation, and the ones enforcing them don’t question it, they just follow the rules… and that includes my precious UCI.

Luckily there are individuals who see the world differently and they know what the rules of the game are. I was fortunate enough to meet hospital staff who steered me and my family in the right direction to ensure I had the best possible chance of survival. If I just went along with the “rules” I wouldn’t be typing this post right now. Thank God for the rule breakers!  I consider myself Queen of the rule breakers and will pass along valuable information that you might need to know in the future (but you didn’t hear it from me 😉 )

When I was admitted in to the hospital I didn’t have health insurance. In fact not having insurance is what kept me from getting screenings (like colonoscopies) in the first place. Do you know the average cost is $5,000?  I can hear some of you thinking, “what about your boss? Why didn’t he offer health insurance?” I worked in restaurants and health insurance is not offered because it costs the company or small business too much money. Buying insurance on the individual market is too expensive as well, but this is not a post about the high cost of health insurance…so back to my story.

While I was waiting for a bed in the hospital, I filled out forms from different state and county agencies that might help pay my medical bills. Meanwhile I was given a bed in Tower Three and submitted to endless tests.  My son, James had arrived the day after I was admitted so I immediately turned over my healthcare decisions to him. He legally became my “Advance Directive.” In a nutshell, it means he made all decisions about my healthcare if I should start slobbering on myself and don’t know what day it is. I suggest you have one or two people you trust to do that for you when the time comes and I mean when the time comes because every one of you will get sick or hurt someday and you might not be able to make your own decisions, so do it now before some stranger decides for you.

On day two of my hospital stay I found out that I qualified for aid. A woman from Medical stopped in my room to tell me she reviewed my application and she felt I would qualify for aid but we wouldn’t know for sure for about six months. I would be getting more forms in the mail and needed to send back documents that proved I wasn’t cheating the system.  James told her I didn’t have six months to wait. I was stage four and time was not on my side. The social worker shrugged her shoulders and told him that was just the way things worked. No exceptions. Those are the rules. Bureaucracy.

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Lucky for me, James doesn’t follow rules either so he left the room and went to the Medical eligibility satellite office located on the hospital grounds. He found another social worker and somehow James persuaded him to speed things up. I don’t know how James did it but he got all the necessary paperwork, brought it to the new social worker that afternoon and I was approved on the spot. So much for rules.

I now had insurance but now I faced a new set of “unspoken” rules. I learned if a patient is an outpatient approval for surgeries can take forever, but if that person is an inpatient the wheels turn much faster. It is in the insurance companies best interest to get that patient released as fast as possible. I was scheduled for surgery to “lap off” the tip of my liver (which is done in only a few hospitals in California – the preferred treatment for liver cancer is chemo) in five days.  I was feeling better from the blood transfusions and maybe was well enough to be sent home, but if that happened I probably would have had to wait until the doctor got approval from my insurance company and that would mean more “red tape.”

I don’t know who made the decision for me to stay put but I am thankful he or she did. I do know that several different hospital workers came to my room throughout the day and said, “You didn’t hear this from me, but if you are discharged turn around and go back to emergency. They will readmit you and you will be ok.”

I was hospitalized three times in 2011. My total accumulated stay was over one month. I learned a lot of how the “system” works and it’s geared toward the “house” winning — just like in Vegas. To the ones making the rules of the game its a business decision. To you its life itself. If you follow their rules you might not come out so good, so break the rules and find someone to help you through the maze of bullshit, I mean red tape. Make friends with hospital staff. They are the ones who can help you, but you have to be pleasant and I know thats tough sometimes when your scared or in pain, that’s where your Advanced Directive comes in. Make sure that person has the courage to be the “squeaky wheel” and at the same time remain pleasant to the ones who understand the game. Your life could depend on it.

In the mid nineties I temped for Cigna health insurance for a summer. I sat across from a woman whose job it was to deny claims… all day long. I asked her what she thought about her job. She loved it. The company paid her a bonus at the end of the year for doing a good job. I don’t know what that meant, but I think you get my drift. Everybody in the insurance biz is looking out for their bottom line. You are only a name on a file. Its nothing personal. Its the name of the game. Its up to you to fight for your life.

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I now visit patients going through treatment. I hear the same stories from them and I’m sure it will be the same even with Obama Care. You need to learn the rules of the game. If you can’t get satisfaction, visit your state representative. Do not make an appointment. Show up unannounced. If you call first you will get the run around from them too. Its the job of our representatives to help you. If they aren’t available, they have staff that can do it.

Let’s say you are declared in remission or NSD (no sign of disease) you still need to get frequent checkups. I had to get monthly blood tests after my first Pet Ct scan was clear and I continued to get scanned every three months for the first year. I can now wait six months.  I will be under surveillance for five years (I don’t mean by the NSA… at least not to my knowledge…but just in case “Hello! Homeland Security!”)

I run in to people occasionally who had cancer treatments from other hospitals and were given a clean bill of health, but they weren’t monitored closely and they ended up at UCI after their cancer had spread. I’m guessing that’s because their insurance company has an efficient employee dreaming about how she will spend her bonus check at the end of the year.

I repeat — its up to you to make sure you are receiving the best healthcare available and that includes aftercare.

If you have any other questions, you can leave a comment below this post or send me an email if you don’t want the world to know your business. I do abide by the HIPAA laws. Some laws are good. But many laws today… not so much.

Be well!

Inge