: This is the second part of an amazing, and harrowing, and deeply personal three-part series. Part I is here
. They're quite long, but please take the time to read these posts in full. -- MJWS
Before I dive into the full narrative of my plight since May 2008, a couple of brief anecdotes. My father keeps track of all my medical bills, since it's a little hard for me to spread them all out in any organized way when my universe is limited to a bed. In 2008, he caught nearly $25,000 in billing errors that would have been paid by the insurance company or by us if we weren't paying attention, all from the people who handle billng for doctors, hospitals and other health-care related providers such as X-Rays, MRIs, etc. In 2009, they were slightly less incompetent -- we only caught $21,000 in errors. Every one who has medical bills should demand itemized bills because they will always try to sneak something past you. A 72-year-old woman was shocked to see when she got her itemized hospital bill that she'd been charged with costs related to her pregnancy.
Hospitals always lie. There is a nationwide nursing shortage, but they still understaff nurses on purpose, so there is never enough staff to carry out doctors' orders so they instead are forced to routinely lie on the paperwork --- and nurses are the good guys in the health care system. However, the shortage leads to more problems. An elderly woman was walking her gigantic dog who took off after another dog, dragging her and breaking practically every bone in her body. However, the hospital made her condition even worse because since there wasn't proper staffing to turn her as often as she needed to be turned, she developed horrible wounds all over her body and had to be transferred to a specialty hospital to be treated because of the first hospital's negligence.
Now, I've put it off long enough. Here comes my story. It really begins in January 2005 when I was diagnosed with primary progressive multiple sclerosis or, as I refer to it now, the good old days.
This diagnosis came after two years of many doctors and many tests trying to figure out what was happening to me, specifically severe weakness and lack of control with my legs. At what point, I went to a cardiologist who sent me to a dietitian. I lost 8o pounds and my legs got worse, so we realized my weight wasn't the problem.
Eventually, I had to use a wheelchair and a walker to get around, but I was able to work full-time for three more years until fatigue issues and bladder problems made it impossible for me to make it through an 8 hour shift most of the time, so I had to go on disability in February 2008. In May of that year, I made the biggest mistake of my life. My urologist, one of those specialists who liked to make as much money as possible so he had a P.A. see most of his patients, claimed that all the medication wasn't enough and my bladder was failing and I needed to have surgery to install a suprapubic catheter. He said if I didn't I would be prone to having more urinary tract infections (at this point, I'd only had one ever) and could eventually have kidney problems.
For some reason, my mind wasn't thinking the way it should. My instincts were telling me this was a bad idea and whenever I go against my instincts, I usually get in trouble. If I'd been thinking right, I'd remembered that I'd had bladder problems all my life, including bedwetting until I was a teen and a bladder that wouldn't empt, solved by a different urologist who prescribed a medication called Tofranil. It would also have occurred to me that this scalpel jockey, while he claimed to have dealt with M.S. patients before, clearly had no idea that M.S. is like a snowflake: every person who has it has it differently and primary progressive is a rarer type than the more common ones. Aside from bladder scans, he did no other tests to see if anything else might have been lurking in my bladder. On May 5, the day of the outpatient surgery, I should have called it off then when I realized that the surgery was not taking place at a hospital but at one of those drive-thru ATM surgery centers that his surgical group owned so they could take a larger cut than they would if they performed the surgery at a hospital.
Of course, this part is a minor annoyance but prior to the operation, the doctor came to see me and my parents and took our hands and led us in a prayer to Jesus. He'd never asked if we had a religious preference; for all he knew we could have been Jewish. Once I awoke after the surgery, another employee of the drive-thru place checked me out and got me ready to go home. They gave us a form letter on how to care for the wound on my stomach in the vaguest terms (one size fits all apparently) and said to see the doctor for a followup visit on JULY 1.
It only took a few hours for things to go wrong. The whole idea of this suprapubic catheter is that my urine would flow out a tube and into a bag and not out my penis anymore so that night when piss started coming out my penis anyway, we knew something was wrong. After a series of calls, messages and pages, the doctor's nurse called back and said that I was probably having bladder spasms, which often happens, and prescribed pills which I started taking and which did nothing to alleviate the problem.
So, for days, in addition to pain, I kept urinating like I always did as well as into the bag. On top of that, my bowel movements had ceased. The doctor's nurse relayed the suggestion to take double doses of Miralax, but it didn't help. Eventually, I noticed that if I was in a sitting position, I tended not to piss out my penis so I made the mistake of starting to sleep sitting up in my wheelchair with my feet stretched out onto my bed. However, another problem developed, when white rock-like things began appearing in the drainage tube and I wasn't going out the catheter at all. I finally went back to lying down on the bed and the doctor sent a home health nurse to come and irrigate my catheter to try to clear the field and jump-start the process. She had to come two days in a row when finally (this was eight days following the original surgery now), the doctor decided that perhaps I should go to the hospital ER to figure out what was wrong.
By this point, my legs, which were already weak from the M.S., were essentially not functioning, so paramedics (with the help of firefighters because of my weight) had to use a megamover to lift me off my bed and carry me to the gurney in the hall which couldn't navigate the tight corners to make it to my bedroom. Sure enough, as soon as the men lifted me off the bed, I finally had my bowel movement. We also discovered for the first time, since no one had seen my ass in a while, that in that short period of time I had developed a gigantic ulcer wound (or bedsore) on my behind. The wound was so large, someone could shove two fists into it and it had developed that fast, in a mere eight days.
So began the first month of my nearly four months of hospitalization in 2008. The first hospital was a "not-for-profit" (ha-ha -- they are all for profit) Catholic-run hospital. They had a horrible television selection, using a satellite with a very peculiar pick of what channels they allow. In fact, they only allowed one cable news channel: Fox. Since that is obviously a partisan choice, I would think that would threaten their not-for-profit and religious status. Isn't it the same as when a church takes political sides? Hell, did no business people ever get sick? I'm sure they might have liked CNBC.
While I was in the ER, the idiot urologist did show up and thought he might solve the problem by trying to manually shove the catheter a little deeper into my bladder, which does not feel particularly good. We waited as the ER people ran all sorts of tests and everyone ignored us as we tried to keep telling them that I was lying on a huge pile of shit that it might be a good idea to clean up. That's where I first met the asshole hospitalist I mentioned earlier. The one good part of the ER visit was for the pain, a nurse gave me my first exposure to Dilaudid, a magical drug which is the only one I've ever taken that stops all my various pains at once. Otherwise, I need various pain treatments for various pains. Dilaudid was wonderful. It makes you feel as if you have melted butter in your veins instead of blood.
The first night was a nightmare because they had to get a special air mattress for me because of the wound, but miscommunication told the ER it was already in my room when in fact it hadn't arrived from the other side of town yet so I spent several hours wedged in the doorway of my hospital room on a gurney as we waited for the special bed to arrive. I had not eaten in hours and had missed a lot of my regularly scheduled medications.
Once the bed finally arrived, not much happened the first night. The following day I was visited by their "wound team" which we would later learn did not exist. The person who supposedly served this function visited me once a week and her first instruction was to put an ointment on the wound. The wound itself was not wrapped. I also was supposed to be turned every two hours but given the purposeful short-staffing of nurses and staffing, my size and my inability to help much myself, this was hardly ever followed, especially at night. If you needed something, you could call for a nurse, but the short staffing made some calls go unanswered for literally hours. At times, a voice would speak and ask what you needed, but it did nothing to expedite someone to get to your room. All it did was get an unseen force to turn off your call light, which I would of course hit again.
Another time, when it was getting close to time for my pain medication, I had told my nurse that I would need it at the proper time. In the meantime, my IV had completed and, for those of you haven't had experience with a completed IV, it starts beeping annoyingly, so I called again. They also had started adding cell phone numbers on a board each day so you could directly reach your nurse. When my call light was being ignored, I called the nurse's phone and it kept going to voicemail until she finally answered and said curtly, "I know. I'm getting your pain medication." I informed her I was calling about the IV actually, but that sort of thing happens a lot with understaffing. People assume. Good thing it wasn't something serious I was trying to get help with, then what would have happened?
Back to the turning. When they did gather enough people to turn me, I always had to remind them to watch the catheter bag so it didn't get pulled out in the process. Several times, when I wasn't on the ball, they'd forget to re-hang the bag, leaving lying on the bed even with my bladder which you aren't supposed to do. Another time, I noticed that none of the aided had remembered to empty the bag and by the time they did more than 12 hours later, it was about to bust.
Meanwhile, the nonexistent wound team switched ointments and kept up the treatment and the nurses kept telling me how much better it was looking, though I couldn't see it to know one way or the other. There was talk that perhaps I should be transferred to another hospital which specialized in wound care, though the hospital claimed that I had to be in their hospital for a month first.
Back on the bladder front, we were still having problems. We were told my urologist was coming one day to check things out. He didn't end up showing until the next day when I was set up for lunch. Of course, he expected me to move my food and let it grow cold since his time is infinitely more valuable than that of the man whose life he'd ruined. I told him we'd been told he was coming yesterday and he could wait for a minute or two so my food didn't get cold. He started to walk out so I yelled so the hall could hear, "So much for your Hippocratic oath, but hey, as long as you get paid, who cares about the damage you leave in your wake?" He turned around and checked things out. Later in the day, I was wheeled down to look at the bladder and catheter placement with an X-Ray where he found that it was enveloped by calcium stones. He also mentioned to me that he hadn't noticed all the fat rolls before. Of course, I'd been his patient for several years so how he'd missed that I was overweight when he'd had to have me lift my stomach to run bladder scans -- oh yeah, most of the times his nurses did those or he had his P.A. see patients so he could make more money by being elsewhere.
It was decided I needed to have a second surgery to clear out those deposits and place a new catheter (June 1 now). This time, it was done in the hospital, so afterward, the anethesiologist came to visit with me and gave me a device to practice breathing with periodically to hold off pneumonia. Funny, that wasn't a concern at the drive-thru ATM surgery center. After this surgery, I did not feel well. I starting having alternating sweats and chills and weakness in my hands. I had developed my first UTI since the catheter surgery (you know, the infection the urologist said this was supposed to prevent), so I was very sick for days.
Meanwhile, I continued to have the usual problems with the understaffing. Not to getting moved as I was supposed to; getting my wound treated and being told it was looking much better; noticing on the computer in the room how late they often were in giving me my medication, etc. I complained to higher-ups so much, they kept trying to bribe me to get me to shut up. First, they brought in an extra TV attached to a DVD player. Later, they managed to find a laptop for me to use. They kept bringing up the specialty hospital, but insisting that the insurance required I stay a month before I could be approved for a transfer.
The idiot hospitalist called for a consultation with another doctor who also called for yet another consultation to look at my wound to see if I should have a colostomy to prevent the wound from getting contaminated by bowel movements. Given my inconsistent pattern of BMs at this point and the fact that one "common" surgery had screwed me up, I told them, hell no. Then they were ready to let me be transferred to the specialty hospital.
We talked to our health insurance case manager and it turned out that the hospital had been lying and I could have been moved two weeks earlier. So I was taken to a specialty, for-profit corporate beast of a hospital that had a good wound care team.
That's another long story that's going to require a part III.
TO BE FURTHER CONTINUED
Labels: health care, personal