pan6467

Let me start by saying I capitalized PERSONAL for a reason. Having had 4 brain surgeries since Aug 28th last year and still have an infection in my brain they aren't sure if they will operate on basically because they hope the IV antibiotics I am on will shrink it. I believe with 100's of 1000's in debt to doctors, hospitals, pharmacies, my parents, I have first hand knowledge of how our system works presently and I would like to share it since Healthcare is such a political hot topic.

I was fired at the beginning of June. And because there was no way I could afford COBRA, I lost all healthcare benefits. So when this sinus infection hit at the end of June, I didn't do anything thinking it was just that a run of the mill sinus infection that would run it's course and go away. Well, middle of August, it got far worse. I went to a stat care not wanting to wait in an emergency room that was overcrowded and was asked for my insurance card. I admitted I didn't have any and was told to sit in the waiting room.

It wasn't long before I was called in to see the doctor. They took my weight and vitals and soon a doctor came in. He listened to my symptoms a constant green discharge from my nose, fever, chest congestion and difficulty breathing. The doctor wrote a RX for Z pack before I even finished the symptoms.

I stopped by a drug store on my way home, dropped off the RX to be filled, asked how much and was told $65. $65 I didn't have, as it had been over 2 months since I worked. As my mom and step dad were away, I would have to get the money from my grandmother. To which I called my mom and let her know what I had to do.

I made the trek 60 miles from Massilon to Mansfield in roughly 45 minutes down US 30, calling my grandmother as I drove to let her know what was going on, so I didn't just show up and say, "HI, I need $65." Plus, this also allowed me to make sure it wouldn't be a wasted trip with much needed gas wasted.

She said she had it and that yes, I could borrow it. So it was ok.

Now this is my first and basically only negative toward our healthcare system, I had SO far. IF I didn't have family to help and some don't, how could I have afforded the necessary medication? I wasn't told of any program by the pharmacy, that could help me financially pay for the meds.

After taking the 5 days of Zpack and waiting the 10 for it to supposedly work better I was feeling worse, I called my mom and asked if they could take me to the ER. Granted that was quite a trip from Mansfield to pick me up in Massilon and take me into a Canton hospital ER and back, I was asking them for. She told me to call 9-1-1 and have an ambulance do it, but I refused, knowing that was an expense I would never be able to pay and after years of bad credit, which thanks to my ex-wife was getting better, I didn't want to see plummet again. This was August 26th.

We got to the ER and again I was asked for insurance and so on. I filled out the paperwork to the best of my ability and submitted it. Again I saw a doctor and again my symptoms were pretty much ignored. I was given a RX of Bactrim and Ultram and sent on my way.

Those were filled that night and taken as directed. The next day, August 27th, will live with me until I die. I woke up totally unable to move or feel my left side. I couldn't walk to the bathroom so I pissed and shat myself. I couldn't talk so when I tried to call people all I could do was mumble. I however, was lucky in one aspect, I had internet and found my mom on facebook and typed to her what was going on. Again, I was told to call 9-1-1 but again fear of expenses kept me from doing so. My mom and stepdad again made another trip to take me to the hospital, they called 9-1-1 upon their arrival. Everything even now is such a blur, I remember bits and pieces. I remember the EMT's basically thinking and treating me like a drug addict, asking me what I took and when I shook my head and handed them my RX'd meds, having them thrown back at me and being told to stop lying to them and tell them what I was on. When it became apparent to them that they were not going to get the answer they wanted they ransacked my room looking for drugs. Then told me to put my shoes on and walk down the flight of stairs. They berated me when I couldn't stand to do what they asked me to. When it became apparent I physically was unable to, they went and got a chair with straps and carried me down, all the while still talking to me like I was on drugs and acting.

When they asked me what hospital I wanted and I was able to say, "Mercy". They gave me a rant about that was not where they "were allowed to take me". They were only "authorized" by the township to take my to Aultman (which to me, I'd rather die than go to.) They then called someone and got approval.

I don't remember much about the ride or getting to the ER at Mercy. I only have the info my mom told me after. The ER doctor and nurse at first were convinced it was drugs. They couldn't get a temp orally or under my pit that showed any fever, but after an anal temp it was 104. I was dying. My mom says that the ER doc wanted to admit me but he said "they" don't want your son admitted. My mom said that ER doctor fought all night to have me admitted. His fortitude and goodwill got me admitted. I had had a stroke, I was later to find out.

After that, I was admitted and the next day (August 28th) I underwent what was to be my first craniotomy for a subdural empyema. All I remember is waking up in the hospital, not aware of where I was. I tried to talk but as the day before, the sound wasn't there. My head was hurting and I felt the top to feel my hair shaved and stitches there. I tried to scream but nothing. I slammed something onto the floor and a nurse ran in. She asked if I was ok. I pointed to my head and shook it. I was medicated shortly there after with doctors who knew me (but I had no idea of who they were at that time) asking me questions looking me over and telling me what was going on. NOTHING made sense. It was just a big blurry mess to me.

I was in the hospital during that period for 7 1/2 weeks. Occassionally someone would come in asking about how I planned to pay. Thankfully, my mother was there to take care of everything. I did however, sign a living will. For me QUALITY of life supercedes QUANTITY. Other than that I don't feel I was treated in anyway, shape or form differently than someone with insurance, other than the hospital's social worker worked to get me home healthcare to provide me daily IVs of ceftriaxone (Rocephin) an antibiotic that I am still on 2 times daily, a "free" walker, rehabilition in Mansfield (as I was to live with my mother in Mansfield after release).

To me I felt slightly degraded, here I was 43 years old learning how to walk again. having to use a urinal where the nurses wouldn't empty it when filled so I would piss all over myself and the floor. Having someone in the AM throw clothes at me and tell me to wear these. No choice in what I wanted to wear (as my mom who visited me every day had gone out and bought me some clothing). In the process they did another crainy for the subdural empyema. I was amazed at how little pain there was. here my head and brain were being ripped open, each time a matter of life or death and there was little pain afterward. I was told my pain tolrence was up there from the infection and because I had been having it so long that the operations were actually a relief.

My sister came from Az and visited on her way to a wedding in New Jersey. I was ironically given steroids (having sarcoidosis and psoriasis for years I fought off steroids to treat either....) yet here I was on the very drugs I fought so hard against Prednisone and Methatrexone. I was getting calls from friends in Australia and all around the country yet my son never called or bothered to come see me. My dad did call after one of my operations and talked to the nurse and not me and when my sister told him he should visit me, he denied I was his son. Then why did he call?

By week 4, I was begging to get out of the hospital. I was doing well in my rehabs and garnered a day pass. I was shuffling pretty well without a walker or wheelchair and went through various practices to go up and down stairs, and told smoking could hinder my recovery. I was to go see the movie The Devil and eat at my favorite Chinese Buffet. I had a very good day, with my mom and stepdad, and had ONE puff of a cigarette. When I got back to the hospital, everything was fine. That night, however, I was to experience a pain I have never had before. Every joint below my waist felt like it was having a nail driven into it. It was so harsh that even at maximum Morphine I was in excruciating pain. The hospital and doctors ordered an ultrasound and found I had 2 bloodclots in my left leg, possibly one in my right leg. My left leg swelled to double its normal size in no time. I could not be put on blood thinners of any type because it could lead to bleeding in the brain. That was the most pain I can remember through any of this up to that point and that is through 2 craniotomies. They decided to put what I call an umbrella, they call it some technical term. Basically, it's a filter, in my chest to filter the clot so it wouldn't hit my heart, lungs or brain. They went into my right thigh up the vein and popped it open in my chest. Technically, that was operation #3.

Again, a date was set for me to get out, unfortunately, a day or 2 before that date, I was having severe head pain. That led to more MRI's and CT Scans, which showed more infection in the brain. Craniotomy #3. Again relatively painless but it pushed back my release date a week or two. I had become so pessimistic that I would ever get out alive, that I couldn't look forward to the set dates because something always happened that had me stay longer.

Finally, after 7 1/2 weeks I walked out. I got to Mansfield and had to start physical and speech rehabilitation within a week. The social worker at Mercy in Canton had set it up. I did well there and was released almost immediately from both rehabs.

On a Saturday night, I had 2 seizures after being taken off Keppra, earlier in the week. One while IMing a friend in Yahoo and one when I went to bed. Neither one made me pee my pants or dirty myself but besides scaring the bejeebies outta me I was ok after. I promptly told my mom and that morning went to the ER in Mansfield's Med Central. There I had a CTScan done and the ER doctor suggested when I talk to my neurosurgeon and tell him about this that the doctor there suggested he look at OsteoMyelitis. Which explained the big knot on my forehead the past few weeks.

That Tuesday I met with Dr. Khayyat my neurosurgeon and one of the best in the state, by reputation and in my eyes I've never met a nicer doctor or a more caring one. He scoffed at the idea of Osteomyelitis but ordered an MRI.

Days later and days before Christmas, I was in Mercy Hospital again to have my picc line that was my home IV for the antibiotics taken out and a new one put in. One week later I was to have a craniectomy. When I asked Doc Khayyat about cost, he said "don't worry about it. I am not, somehow I'll get the money. My main concern is your health and getting you through this." This day and age for a doctor to say that, especially to me who was feeling like a schleprock, floored me. Never in this day and age of lawsuits and heavy malpractice insurance premiums did I ever expect a doctor to say that to me.


The OsteoMyelitis was verified and Doc Khayyat told me it was a simple procedure cut along the top of the head from ear to ear pull the skin down cut out the infected bone and a plastic surgeon would put titanium mesh there and I'd be ok. Except there was still an infection actually inside the back right part of my brain he hoped would shrink with the rocephin.

So, on December 30th, 2010, I had my craniectomy (craniotomy is where they open the skull and brain, craniectomy is where they remove a piece of skull or brain). This was by far the most painful surgery. I was supposed to be released that night but ended up staying over New Year's weekend. The pain was excruciating. But I was kept dosed with percocets and morphine.

As of today, Feb. 9th, 2011, I have been approved for medicaid, which means the 100's of 1000's of dollars I owe will be taken care of. The hospitals pre qualified me under H CAP (I have no idea what that means other than the bills at the hospital are taken care of, not the docs, the radiology, the rehabs, etc JUST the hospitals.)

The infection inside the brain on my right side still is there and I may need another operation. The rest of the infection is totally cleared up.

My only complaints are, at the beginning I should have had better treatment from the EMT's, some of the nurses didn't have to be so degrading and could have emptied my bed urinal in a timely fashion. The trips to the Stat care and the first trip to the ER where my symptoms were not heard and may have prevented all this. But as for needing a nanny state to dictate healthcare, I am extremely pleased with what we have now. I somehow got very lucky and have the best doctors in their fields in the area working on my case. If any changes are needed the funding for meds should be better available and programs made more public through hospitals educating us, the patients.

The only problems with this system the way it is, is, in order to get Medicaid you have to recieve Disability or have an active application/appeal in. The second you don't you lose the Medicaid. So for those capable of working, you have no choice but to get disability or pay the bills until you are bankrupt. Which, disability, is not something at age 43, I want to truly face. But then again my short term memory is pretty much fried, (which like the steroids, is ironic, because I stayed away from drink and drugs to protect my mind..... now I have this fucking infection eating it away.) AND, I think IF we are to have COBRA, then it should be better funded (maybe through nanny care programs that will recieve far more than they can honestly spend). I don't need government telling me my diet soda may cause a fucking stroke or heart attack. I FUCKING HAD THE STROKE BECAUSE I COULDN'T AFFORD THE FUCKING COBRA. It's that plain and simple. I'm sure there are many cases like mine that because the person couldn't afford COBRA, they will go onto medicaid because of the progression of a disease that if it had been caught earlier, turned into something far worse and far more expensive to taxpayers.

So, in the end..... Am I angry? I am angry I have this disease and the crap I have been through because of it. Not to mention, people who would have never talked to me before asking me if I am ok and telling me I look good. And the sadness I see in my mom's and grandmother's eyes at times and the pain I see and hear in friends' voices and e mails.

Am I depressed? YES, I'll admit to thoughts of o'ding on my sleeping pills, but refuse to do so because the God of my understanding, has allowed me another chance of life. IF my mind gets worse or I feel it has.... I WILL WITHOUT DOUBT TAKE THE PILLS. Again, for me it is about QUALITY of life and not Quantity. I have always valued my mind because it is who I have allowed myself to be. Granted it maybe slightly off center and sometimes appear abnormal to others. BUT IT IS WHO I CHOOSE TO BE, IT IS WHAT MAKES ME UNIQUE. And I'll be damned if I lose it, I'd rather be dead in all honesty.

I pray no one EVER has to experience what I have. But we have a great healthcare system that works IF you ask and do what is asked.

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I just love people who use the excuse "I use/do this because I LOVE the feeling/joy/happiness it brings me" and expect you to be ok with that as you watch them destroy their life blindly following. My response is, "I like to put forks in an eletrical socket, just LOVE that feeling, can't ever get enough of it, so will you let me put this copper fork in that electric socket?"