The "L" Word

If I were getting paid, I could not make this shit up.

I was supposed to restart the vancomycin IV Thursday. I didn't. Rich was actually showing some signs of improvement. I woke him this morning and asked him what he wanted to do. Short discussion. We decided we weren't going to do any more vanc without another blood draw to determine the current level. There were several issues. Rich started making phone calls.

First—the doctor who got wrangled into overseeing the drainage tube when no one else wanted to deal with it. The doctor is out of town. Rich explained to his nurse that there has been ZERO drainage for 24 hours and per orders he was calling to report that. Long and short of it, Rich could have an appointment next week. Apparently, the abrupt cessation of drainage was NOT the concern that they had originally conveyed to us.

Sometimes things just don't feel right, so you pursue it a bit further.

Second—Rich called a “friend” who works in radiology and asked her for some advice. Holy Shit, Batman. Radiology placed the drain tube. Today we find out, on the off chance that we called them, that they wrote orders that were sent to the floor PRIOR to Rich's discharge, containing clear orders on how to care for the drain tube, when and where to follow up... in two weeks with radiology so they could examine the site and change the dressing. As a matter of fact, they were wondering why they hadn't heard from us... Are you kidding me?!?!?! We made an appointment for 2 pm.

Third—Richard called our contact in the Infectious Disease Dept. We're not comfortable continuing the IV without another Vanc level being drawn. Yet again I have to explain that Rich does not have symptoms that anyone is comfortable with, but he's having symptoms. And Holy Shit, Batman, this is the first they're hearing of it. No, really? We've been reporting these symptoms since discharge, every time visiting nurse visits. And I'm really sorry that the symptoms don't “make any sense” to YOU, but these are the symptoms, and they subside when you have us hold the vancomycin, and they return and increase three days into resuming the treatment. If I give you a quarter, could you buy a clue? Over an hour and THREE phone calls later, the doctor is telling me to hold ALL the meds until visiting nurse comes on Monday and does another blood draw. Really? And the abrupt cessation of drainage? And the intermittent fevers, headaches, etc? Well, this is the FIRST the doctor is hearing of this. Really?! Well I guess you need to take it up with visiting nurse, because I have been doing everything according to our discharge paperwork. The doctor recommends I take Rich to the ER.

Really? The same ER that had me sign the paperwork to let him go? I ask. And when I take him to the ER, and he is admitted with all the same symptoms he has had and we have reported and no one has addressed, you will address this differently HOW? How will any part of going forward be any different from where we have been? I ask. And I hear him talking, the words in no way correlating to anything I have said or asked

I am SO done. I hear a long, deep sigh escape my lungs and echo in the cell phone at my ear. I think the doctor hears it too. I feel a significant shift in the universe within that sigh. It is a Stepford Sigh. I hear myself responding to everything he says with a light, bright, “okay then”. Each time I respond, the doctor seems more uncomfortable. I no longer care. I've got thirty minutes to get Rich ready and in the car so I can take him to radiology where someone might address the drain tube according to the orders that were written three weeks ago.

It's Two PM and we're in the Radiology waiting room. When the nurse comes to take him back I am ready to implode and somehow she senses this. Like all of a sudden someone is going to pay attention?!?!?!

I had to jump ugly to get them to medicate him for the “adjustment of the drain tube” The nurse explains to me that the doctor doesn't feel it is necessary. I explain to the nurse that if Rich does not get EVERY possible medication for this procedure I will rain down hell and damnation and they won't be able to get security on sight fast enough. I said this calmly and with a smile, but I could feel that my jaw was tightly clenched and something in her eyes told me she was seeing the Fire in my eyes that Rich has spoken of. Ten minutes later she returned to assure me that Rich was receiving the drugs I requested.

I sat in my little corner of radiology and cried. For an hour and a half. Every now and then one of the nurses came out to speak with me. I apologized for being harsh and mean with them and tried to explain what has brought me to this level of frustration. I was told to do NOTHING other than drain the J-P. I have done everything short of offering blow jobs to get answers, information and pain relief for this man (and yes, I actually said that and I'm not ashamed because it's the truth)

They are confused and appalled that we were sent home with NO INSTRUCTIONS on drain care. I don't want to hear it. Seriously? Check out the discharge paperwork. I have a copy of it. They encourage me to contact the hospital's patient advocate program. Like I need permission? I assure them that I am in contact with Rich's “patient advocate”.... oh wait.... that's ME.

Finally they wheel him out of the treatment room on the gurney. The doctor is actually approaching me. Rich is happy. Apparently he has had the drugs I requested for him. Life is Good as far as he's concerned.

I'm trying to enjoy the fact that they are jumping through hoops to lap at my heels. But I can't.

The doctor is explaining that his drain tube was totally blocked. BECAUSE... it was not flushed daily as it should have been because those orders were NOT a part of his discharge. No one told me; no one told visiting nurse. So for 2-1/2 weeks, daily flushing of the drain did not happen. They drained 370 cc of abcess. The doctor is apologizing to me and assuring me that they will “be looking into this situation”. I smile and assure him that I will be looking into this situation too. And as I'm holding his gaze in mine, I summon my very best Stepford Smile and I sweetly tell him,

“And I think the people I hire will be looking into this situation as well.”

Later, after I've fixed Rich's dinner and I'm trying to decompress, my cell phone rings and it's my contact person from Infectious Diseases. Bless her heart, like I haven't already put her through the ringer, and it's her day off and she's calling to see how we're doing. Could it be because earlier today I asked her “what do I have to do to be heard? No one is listening. I'm telling you, and visiting nurse, and anyone who will listen what is going on and NO ONE IS LISTENING. Where do I go with this? Do I have to get a lawyer just so someone will pay attention?”

Holy Shit, Batman. I used the "L" word.

I tell her what has transpired, because heaven knows, if I don't tell her, she might never find out. I apologize for any stress I caused her today. I thank her for her help and concern. She tells me I should call the hospital's patient advocacy program. I assure her I will be calling someone, but it will not be the hospital. I don't take my bucket to a dry well.

Now it's hanging out there. The “L” word. And here's the thing. One of my Personal Rules of Life—Never pull the gun unless it's loaded.

So I now have a project for Rich. Starting tomorrow I will sit him in front of the TV with a pen and pad of paper. His job is to watch every frickin' commercial that airs for malpractice attorneys. He will write down their name and phone number and he can award stars for how well he likes their commercial.

Never underestimate the Power of Pissed OFF. Do you hear me now?

Temper and Patience

Richard likes to tease me about my Irish temper. He will tell you that he doesn't see it often, but when he does, it strikes fear in the bravest of souls. He also likes to tease me about my lack of patience. I'll own the former; I take exception to the latter.

Richard remembers the rare eruptions but he never seems to notice the LONG fuse that I often douse myself before it ignites the dynamite.

It's been a long fuse of IV antibiotics. (you may have noticed in my Germ Warfare post)

They drew another Vanc level this past Monday. Rich was becoming increasingly weak, loss of appetite, increased headaches, cough, intermittent fevers. We reported this to visiting nurse as we were instructed to do. We were told these are not symptoms of vancomycin. Monday night I gave him his scheduled dose. Tuesday morning he got his scheduled dose. Tuesday afternoon visiting nurse called to let use know his “vanc level is through the roof. Hold the next two doses and resume with only one IV daily.” REALLY? Really....

So let me get this straight. This is the second time in a week that his vancomycin level has been so high the dose was cut 50-100%. The exact same symptoms were reported and dismissed. But this time there was no rush on the lab results (even though the symptoms were identical to the last results) so he got TWO doses after his vanc level was through the roof. Nice.

All day Tuesday he was so weak he could barely 'get out of bed. Tuesday night was awful!!! We managed 60-90 minute naps throughout the night. Richard had chills, followed by fevers, with a headache that had him curled in the fetal position in tears. The rotation continued throughout the night. On more than one occasion I told him we had to go to the ER. Each time he got angry and flat out refused. He said “They're the ones poisoning me. Why would I go back there? They don't listen to a goddamn thing we tell them.” Holy Shit—this from the Model Patient of Total Compliance?!

Wednesday I wanted to call the doctor. Richard refused in such a way that I suspected our marital status was at stake. His argument was “they'll tell me to go to the ER. I'll get admitted. They still won't listen to anything we tell them, and they will continue to dismiss my symptoms as not having anything to do with anything they're doing.” I have rarely seen my husband angry, and less have I seen him this angry. This from the man who has always believed that doctors must be obeyed on rank and status with Catholic nuns.

I remember at one point during his latest hospital stay I asked the doctor if he could be having an allergic reaction to the new chemo. The doctor explained that wasn't possible “because we didn't give him that much.”

REALLY? Really... If you're allergic to peanuts.... how many peanuts are too many peanuts?

Not only are they not listening to me... I don't think they're listening to what comes out of their mouths.

We have established and they have acknowledged that Rich does not present typical symptoms. Therefore, I confirmed before discharge that any symptoms would be acknowledged and considered. I love being lied to, it reminds me of childhood.

For some strange reason I was okay when they were just fucking with me. I was okay when it was just me being ignored, dismissed, patronized. I could even kiss their asses through it all as long as they were focusing on Rich. But now Rich has lost faith and confidence in them and I don't know how to deal with that. If we no longer have the team, then it's just me. Just me.

I've spent the last few days feeling the entire world shrink around us. There is no one to turn to, no one to trust, no one who's listening.

Today is his second day without Vancomycin. Yes, I held one extra dose. He is vastly improved. He's actually been up a bit, and able to converse. So do I continue to hold the vanc until I get some answers? Or wait for monkeys to fly out of my butt? Do I risk a flare of the infection if I hold the antibiotic—not completing the full course? Where do I go for help? The doctors shake their heads because he doesn't have symptoms that match his diagnosis. When I report his symptoms, they dismiss them because they don't match his diagnosis. Who's on First? I don't Know.... Third Base.

I am trying so hard not to waste my energy on anger. I swallow frustration until it overflows in tears. The next phase is Numb. Entering the Dark Irish Silence. Please move to the rear of the bus. Seatbelts are not an option—interpret that however you like.

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Germ Warfare

This blog is not intended to provide medical information. You can get that from drug commercials on TV. I'm not an expert on cancer, or cancer treatments, or nutrition, or even Reiki. I AM an expert on Rich, and since there are more than a handful of people interested in Rich, this blog seemed like a good idea.

Pardon me please for using this opportunity to make a
Public Service Announcement:

Human Beings were never intended to live in a germ free world. The vast majority of bacteria are good and helpful. If man insists on waging war against bacteria, numbers alone indicate man will lose—their army is way bigger than our army. Bacteria, being quite simple organisms, are capable of mutating and evolving at an alarming rate. Put all these facts together and consider them carefully the next time you disinfect your counter top. Use standard hygiene measures when dealing with raw animal flesh. Beyond that, unless you're planning to perform surgery on your kitchen counter, it does not need to be sterile. If it makes you feel good to “disinfect” your toddler's toys, consider that she also crawls on the floor and then puts her hands in her mouth.

The main incentive for disinfecting anything is the money it puts in the manufacturer's pockets. Basic Economics: If there weren't a profit, the products wouldn't be available. They are NOT selling you a cure for diseases—they are capitalizing on your FEAR.

Humanity has thrived and prospered for thousands of years before waging this war we cannot win. Please consider that there is a difference between being clean and being sterile, despite the commercials on TV. Clean is good, sterile is impossible. Look up the statistics on hospital acquired infection.

Next time you're watching one of those commercials where they shine a special light on the floor around the toilet that turns the bacteria neon blue... ask yourself what you might look like under that light. You'd look like the lost member of a Las Vegas show.

Given the size of their army and their ability to mutate, sterilizing surfaces outside an operating room is doing little more for the Big Picture than immunizing the enemy's population. If you want to take cleaning to the next level, use STEAM—you'll kill just as many without inoculating the rest and bringing toxic chemicals into your environment.

Obviously, I have a dog in this fight. It's hard enough for someone to endure chemo and radiation (I'll spare you the gory details for now) but to go through all of that only to receive the next blow when you're at your miserable weakest. A massive infection that is mega resistant. Take the worst you've ever felt and multiply it by nine. At this level, treatment requires IV antibiotics, which cannot be run through a generic IV like regular fluids and meds. IV Antibiotic treatment requires special care because it is so caustic to the veins. Rich started with a central line inserted on the right side of his neck that is stitched into place. Placement is a sterile procedure that requires Rich lying fully draped from waste up, trying to breath with his face covered for over 30 minutes (45 if a resident does the procedure) Then it must be x-rayed to confirm that the placement is terminating correctly. This site is good for seven days. When that time lapsed, they placed another central line on the left side of his neck, with another x-ray to confirm placement. (and they found the infection had colonized at the first central line site).

After that seven days lapses, the next option is a PICC line. They insert an 18 gauge catheter into the large vein of the upper arm, terminating into the heart. With another x-ray to confirm placement. This so the antibiotics can't disintegrate the veins. To give you an idea: visiting nurse explained that Vancomycin can only be given ONCE in a regular IV because of damage to the veins.

After Twenty-Six days in the hospital for an INFECTION, Rich is finally home.

Now he's on Vancomycin IV twice daily. I can't bleed the IV tubing down a drain because it will totally destroy my septic tank. He gets a blood test weekly to make sure the Vancomycin has not reached toxic levels. They've had to reduce the dose twice now. He gets hellatious headaches. He has to have IV Mycomine daily to deal with the yeast/fungus infections that are out of control because the good bacteria in his body that keeps that in check has been killed as well—vancomycin takes no prisoners.

I apologize if I sound militant on this issue, but I was raised in a time and place where childhood illnesses (not the big ones we immunize for) were part of childhood; Emergency Rooms were not used as 24 hour doctor offices; medication was a last resort when everything else failed, including toughing it out and giving your body a chance to build an immune system. I grew up before drive-thru windows created a demand for the perpetual immediate FIX; the magic pill was an aspirin; and the best medicine was common sense and personal responsibility.

Here's the deal. You have the Right to the Pursuit of Happiness—not the Guarantee of it. Some days you're going to feel like crap—mentally, emotionally, or physically. Deal with it. It's called Growth.

If I had a buck for every patient who called demanding an antibiotic because they've been suffering with sinus pain and pressure for the last three days, I could pay my insurance premiums while I'm on FMLA for Rich. Or the young women who get antibiotics every few months to treat their STD because their boyfriends refuse to use condoms. With a chaser of diflucan to treat the yeast infection the antibiotic causes.

How about patients seeing the doctor for refills on diabetic and hypertensive meds. They're obese and wreak of tobacco and they can't be bothered to show up for their FREE one-on-one nutrition training with a nurse educator.

Ask me how many anti-depressants I call to pharmacies weekly for people in their twenties. WHY? Because they were raised in an environment that doesn't allow anyone to lose because they might feel bad. Guess what. That is not how life works. So now they're trying to function in the real world where no one is adjusting the score so they don't have to deal with disappointment (or the desire to improve).

And NO, I'm not prejudiced against fat, promiscuous, diabetic, depressed smokers with chronic sinusitis. On some level we all do things that are less than healthy. All I'm saying is make your choices and then you be accountable for them.

Medicine did not kill health care in this country. Abuse did—the lack of common sense and personal responsibility. Bring those two back to the playground and we could have a health care system that works for everyone.

Whoa. Sorry. Shit. I might have just offended someone. Damn. There goes MY political career. My problem is that I need to stop thinking. On the bright side, I'm fairly certain I can find a doctor who will write a prescription for a magic pill that will instantly cure me. Or at least alter my brain chemistry so that I no longer care.