What's My Diagnosis?

I just want to find out my true diagnosis with Medicare/Medicaid. In the rehab it was made Persistent Vegetative State, and later they couldn't change it when they started communicating with me. Recently, a family member found paperwork from back in 2006 from the hospital I was at. (A different hospital.) They had me as Acute Respiratory Failure in 2005. Records end there, but I left in 2006.

How am I alive?

So I haven't been breathing since 2005.  It says cleared in small letters below but that doesn't change a diagnosis.

I actually was in a coma when diagnosed. The diagnosis supposedly couldn't be changed. Then, I saw those papers that said I am dead.

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I do  know that I am in a coma.

https://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

My eyes are open, so it's an open-eye coma.

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Ten years ago I saw a local doctor for redetermination. He kept gasping, "What happened?" I  later saw another doctor for redetermination. Either of these doctors could have changed my diagnosis, but I was under the impression that I was stuck with the original. Diagnosis is federal, not state. 

Both of the diagnoses of Persistent Vegetative State and Acute Respiratory Failure are wrong. I am not in a coma and I am not dead.

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I just want to know what my diagnosis is. Why can't it be simple brain injury?

I have a few more things to try, but this is not readily available information. (I have to make an account on-line with Medicare? That's faster than calling them.)

Retire On This!

Disability is not income. I don't have income tax. When has a vegetative person paid income tax? I don't see people in comas working. That's what makes this weird. I was in a total coma, opened my eyes, my body still appeared to be in coma, and then I start talking. To top it off, I am knowledgeable. People in comas don't write. (Talking is years later.)

Social Security is a real retirement program. The healthcare part is called Medicare. If you become disabled before retirement age, you can collect it if approved.  

The Government Failed Me

UPDATED 8/31/2018

I am vegetative and the US government has done squat to help me. In fact, some of their policies have caused death in others. "I am vegetative" is already a red flag. The statement means an error was made somewhere.

I have Medicare. I worked for it. (For those working, look at your paystub. A good chunk of money was taken out. You are paying for Medicare and disability.) It's real insurance; lousy  but real. I have/had Medicaid. They must be broke now because they won't cover the cost of my feeding tube supplies. Medicare won't either. I have to purchase supplement insurance through Blue Cross. (This hurts financially! They stopped at Christmas time- what a present! You know I already spent my money, so I was depending on donation.)

THIS goes back to Terri Schiavo. The government does not do long-term feeding for vegetative patients. If someone is in the hospital, a different program may be paying. It may still be government, but there are different people and different rules.

This will be weird trying to explain me writing this. I'm vegetative with a feeding tube. My eyes opened 15 years ago, but I couldn't speak. I was made vegetative. (Ha! I was conscious.) Slowly I've made a comeback. I got out of a hospital. Now I write. I still have medical issues, but know how to manage them. I am not a doctor, but notably I have been a care provider, social worker, and early intervention program manager for the disabled. I don't do surgery, but know how many human body systems work.

I'm not getting any assistance, financially. My caregiver's salary is paid through a state program.  My wheelchair and bed have been paid for through Medicare and Medicaid. When I needed a new wheelchair battery, my father had to pay for it (labor can be expensive).

The federal government hasn't done much to help me. Help has come from private citizens- a company or a university might be in there, but one of these persons started it. I'd be suspicious if someone from the government showed up now.

Still Getting Screwed

In the hospital I lost my health insurance. This happens if you have a major injury that can't be fixed right away and you can't return to work, if your medical insurance is through them. But you think, "that's  no worry. I pay Social Security. I see it on my pay stub." It takes a couple years for Medicare to kick in.

Luckily, there is Medicaid. (I found out Medicaid is NOT in every state. So these people are screwed.) So I had Medicaid and it was awful. I did what I call the "Medicaid Shuffle"-I went from one placement to the next. I saw 5 hospitals, 2 nursing homes, and 1 long-term care facility in 2 years. I managed to stay the last year in the same place until it closed the unit where I was. I was then able to manage a transfer home.

I now have both Medicaid and Medicare. Things are better, but not much. I'm lucky in that I know what I need. Most aren't like this, though. Then I read this in a UCP newsletter:



California Dual-Eligibles Cite Problems with Getting Care
Patients that are on both Medicaid and Medicare in California are running into issues when trying to address their care. California has almost 1.1 million “dual-eligibles,” who account for some of the most expensive health costs around the country. The government must spend so much money on duals because of their illnesses and disabilities. Patients who are duals often bounce between the two plans and often receive unnecessary, duplicative and poorly coordinated services. They cycle through emergency rooms, hospitals and nursing homes more than other Medicare or Medicaid enrollees, according to the Kaiser Family Foundation. Even U.S. Health and Human Services Secretary Kathleen Sebelius has acknowledged that the navigation between Medicare and Medicaid programs is “quite difficult and ineffective.” Starting in 2013, California state will begin a trial that will shift several hundred thousand duals into managed care plans that serve their needs. Click here to learn more.

We Suck

This is in reference to http://thoughtfulveg.blogspot.com/2011/05/neurological-epidemic.html

When I say the government dropped the ball with me, I'll explain my situation, and then let you come to your own conclusion. Some may have harsher words. I use myself as the example, but there are many Americans with whom the government "dropped the ball." Many of them don't understand why.

When I started I was working  I tell my story in http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage Since I was working, I had good insurance. I went to a nice brain injury rehab connected to a hospital. But that insurance didn't last. Right before I left I started making sounds. This was a big deal scientifically. That hospital had me scoped - they threaded a camera down my nose to my voice box.  They were doing the scientific research. Then the research stopped. My insurance ran out. I switched to the government's Medicaid program (Medi-Cal in CA).

The government took over and I wasn't the subject of interest anymore. No more research. I began the "Medicaid Shuffle" - I moved from place to place as I wouldn't qualify because I gained more skills, or abuses removed me, or the economy forced the place to close. It was no longer about research. It was about survival.

So I got better on my own. I did my own research. I'm giving my knowledge to the others out there who also don't have anything. (Oh, and excuse me on the documentation. I did the best with what I had. This is all from a psychologist's point of view not only because of my background, but as a medical doctor I definitely wouldn't have access to equipment. The same goes for therapy-crappy equipment, not all the equipment I needed, and the lack of a skilled set of hands.)

I didn't even talk about Medicare. Hey, that's what everyone is working for. Well it's only a step up from Medicaid. It's crappy too. It's also government. In the next paragraph I mention the government dental plan. Medicare don't worry. You don't even have one.

To Medicaid (the government) research isn't "medically necessary", just like teeth. Toothache? Pull it. Put your food in a blender, stick in a straw and suck it. That should be the government's new slogan, "We Suck."

WE SUCK