Mama Told Me Not to Come: A Day in the Corridors of Medical Bureaucracy

Bureaucracy exists in every field, from government to medicine to education. Yet medicine will be at least the point of the spear in this diary.

I had a biopsy scheduled for 1 p.m. today. I have a minimum two-hour drive to the doctor, because of various issues, one of the key issues being the chosen clinic's use of robotics for surgery around the nether regions, or as the British might call them, 'my bits.'

I mentioned in the threads last week about a terrible urinary tract infection I have, along with the possible prostate cancer. I'll continue to use possible until it's either confirmed or denied, since the doctor said "99 percent chance" following the digital manipulation/examination.

So... the doctors called in a prescription for ciproflaxin last week. Ciproflaxin is one of the "John Wayne Tough" class of antibiotics. Thus far, I'm feeling better from it. Also, a month's supply was only 6 bucks. Given my finances, I can afford it. But 'better' remains a relative term.

You may remember the name from the First Gulf War. This antibiotic was made in huge doses because it kills anthrax, whether aeresolized or old-fashioned.

But ciproflaxin has some possibly severe side effects. The lists don't even mention the further physical possibilities of torn ligaments or tendons, nor do they mention muscle issues based on taking the drug.

Here, for example, are the major side effects:

   dizziness, fainting, fast or pounding heartbeat;
    sudden pain or swelling near your joints (especially in your arm or ankle);

    diarrhea that is watery or bloody;

    confusion, hallucinations, depression, unusual thoughts or behavior;

    seizure (convulsions);

    pale or yellowed skin, dark colored urine, fever, weakness;

    urinating less than usual or not at all;

    easy bruising or bleeding;

    numbness, tingling, or unusual pain anywhere in your body;

    fever, sore throat, and headache with a severe blistering, peeling, and red skin rash; or

    the first sign of any skin rash, no matter how mild.

But then take a look at the side effects considered 'mild:'

   nausea, vomiting;
    dizziness or drowsiness;

    blurred vision;

    feeling nervous, anxious, or agitated;

    sleep problems (insomnia or nightmares); or

    increased sensitivity of the skin to sunlight

(Ciproflaxin, n.d., retrieved from http://www.rxlist.com/script/main/srchcont_rxlist.asp?src=cipro&x=0&y=0)

Additionally, having to urinate frequently has been listed as one of the side effects many other sources.

So... I've been experiencing every minor problem except vomiting. I have to urinate every 15-30 minutes, night or day. I awake from sleep having to urinate at least three times during my interrupted sleep, and dream dreams so bizarre they wouldn't even serve as models for postapocalyptic dystopia movies made directly for dvd.

Sleep seems nice, but I have had some ghastly dreams while taking this stuff. Additionally, I look ill, I suppose, since I was asked by three different health care workers if "I felt all right" during today's visit. A perfect opening, but I couldn't think quickly enough on my feet there. I should have replied, "Oh, I'm just fine. I'm practicing my Munchhausen's disorder."

I have a 99 percent probability of cancer, I urinate almost as often as I breathe, I haven't slept well or eaten well, especially including the cardio diet, in two weeks, I've just driven three hours for what's normally a two-hour ride do to 'pit stops.'

Topping it all off, last week it felt as though flames were shooting out of my urinary tract. I thought that it might be a new fuel source for a few days. I think a few of you may have noticed I was slightly testy.

You would be also with flames traveling the distance of your urethra, followed by imagined invisible ignited napalm dribbling (of course, no pressure, due to the prostate problem) from the end of the urethra into the receptacle.

Every 15 minutes.

21-24 hours a day.  

So, With all of the above mentioned and given that I had not intentionally nor unintentionally run over any stray dogs, cats, or people, I thought I was having a pretty good day.

Until I found out that there are cipro-resistant bacteria. If infected with one of those, then I'll have to go with IV antibiotics...I guess I should call them either "Charles Bronson" or "Lee Marvin" antibiotics.

Sigh. So I call in two days to find out whether the antibiotics have the desired effect. If they are, we re-schedule the biopsy.

I got to drive some 7 hours today to give a urine sample... which I could have had tested here.

But big clinics with many different doctors don't necessarily coordinate well on information dissemination. I called the office last week to tell them my prescription. Somebody wrote it down.

But that somebody didn't have the knowledge that some bacteria are cipro-resistant. The person who will be performing the biopsy knew; the doctor knew. Perhaps the nurse, but my doctor's specific nurse wasn't at work on Friday.

So a day, a half of tank of gas, wasted.

There was a bright spot, a surprising one. The technician who will perform the biopsy led me to the discharge to tell them to refund my money for the day, since the biopsy had not taken place. I didn't expect that.

So, my advice to you, unless you are a specialist in a certain type of medicine, whatever that type is, and unless you remain current with drug literature, don't get sick before a procedure, even though your sickness may be almost completely related to the problem you're getting the procedure for.

Frustration, thy name is bureaucracy.

This is what I consider a "health care" problem. Insurance? That remains a "health insurance" problem. I'll be facing that one in less than 30 days.

So where's the benefit of the Affordable Care Act? 2014?

Oh, thanks.

I should probably plagiarize from BTD here:

Speaking for myself only.


< Dealing with cancer in a bad economy. | Planning to Live >
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    Got me completely stumped. Cannot think (5.00 / 2) (#1)
    by oculus on Tue Aug 02, 2011 at 07:56:37 PM EST
    of a single positive thought to share.  Well, the robotics option is good.  Man, I'd be sure to be the biggest pest known to mankind b/4 driving that distance again.  

    I'm a lot more worried about kdog (none / 0) (#2)
    by jeffinalabama on Tue Aug 02, 2011 at 09:26:10 PM EST
    at the moment... his illness sounds immediately threatening.

    You better stop.... (5.00 / 1) (#16)
    by kdog on Wed Aug 03, 2011 at 06:38:34 AM EST
    you've got a full plate my brother...whatever is ailing me pales in comparison.

    I couldn't give your diary proper attention, gotta run, but I really don't want my arse on your mind...keep on keepin' on man.


    Sorry for the excessive hovering. Forgot (none / 0) (#20)
    by oculus on Wed Aug 03, 2011 at 11:31:23 AM EST
    your moms is nearby!  Glad you are o.k.  

    I think I'll text him as morning open thread (none / 0) (#3)
    by oculus on Tue Aug 02, 2011 at 09:29:23 PM EST
    is full.  

    Let us know, please... (none / 0) (#4)
    by jeffinalabama on Tue Aug 02, 2011 at 09:30:51 PM EST
    some sort of acute reaction... doesn't matter one's age.

    I just texted him. If you have his (none / 0) (#5)
    by oculus on Tue Aug 02, 2011 at 09:31:43 PM EST
    phone no., why don't you call him?

    Of course (5.00 / 3) (#6)
    by TeresaInSnow2 on Tue Aug 02, 2011 at 09:40:14 PM EST
    Of course, if you'd KNOWN TO ASK the question aloud, I could have told you that bacteria exist that are resistant to ALL antibiotics.  I know this because I took a class partially taught by a doctor whose sole purpose in life is to find  strange cocktails of antibiotics to keep certain patients who harbor terribly resistant bacteria alive.  But you may not have even known to ask the question, so that alone is a problem

    But....you may be able to benefit from talking to all of us before you see the doctor next.  We have experiences that might help grease the cogs for you.

    My suggestion.  Before your next doc trip, come see us....post a diary, tell us how you're doing, what you're thinking and feeling, what assumptions you're making.  Use us as a sounding board.  The group can draw from their various experiences to try and think of things that might make your vist to the doc more productive.

    And pimp this diary so we know to come find it.

    I had a couple of cancer scares.   While I'm normally a very informed medical consumer, during my cancer scares I couldn't even think straight.  In your case, couple what I went through with lack of sleep and the 99% chance that the cancer is real...and then add the disorganized clinic you're going to....ouch...I think we all want to try and be there for you in some way.  Let us, okay?

    One positive note....many prostate cancers are very slow progressing.  In fact, debate exists about whether prostate cancers even need to be treated or just watched....

    Hang in there.  And internet hugs to you.

    Teresa, thanks. (none / 0) (#7)
    by jeffinalabama on Tue Aug 02, 2011 at 09:43:32 PM EST
    I expected the doctors and nurses to be on the same page. Bad bet on my part there.

    I"m feeling better than I was last week through the weekend, thank goodness.

    But let me tell you, the side effects of cipro aren't fun. I wonder if anyone did an examination of cipro and 'gulf war syndrome,' given the nastiness of the side effects, and the fact that we had to take them daily.


    Weird thing is: (none / 0) (#27)
    by Amiss on Mon Dec 03, 2012 at 12:33:07 AM EST
    I have been on Cipro several times ( I am diabetic and my kidneys are failing and get infected easily) and never had one of your horrid side effects. But I was a nurse that worked urology and oncology. If I can lend an ear, it's available. I must be honest it was in the late 70's so much has changed.

    Please keep us informeed and use us for a sounding board tho,and above all, take care.


    I have one bright spot (5.00 / 1) (#8)
    by Militarytracy on Tue Aug 02, 2011 at 10:02:22 PM EST
    If you have to use the I.V. antibiotics they kill everything but you.  A few years ago I went to help someone with an overly aggressive dog.  They had taken it to one of those "attack dog" trainers.  Nobody should ever do this with a dog you want to live in your house with your family.  Such dogs belong with professional k-9 handlers and all that that entails.  The person did not tell me they had exposed the dog to this either.

    So I'm standing there after just meeting the dog and he jumps up and bites the ever livin $hit out of me, nailed my arm just like he would nail one of those sleeves.  He bit through the back of my arm though and it didn't bleed much, but I really couldn't see it.  Man I was pissed though.  I grabbed that dog's leash and threw him in the back of my car.  We were going to have this out.  I stopped for gas, and he was in the back of our Montero snarling at me through the window spitting all over my window.  I glared at him and told him to just have at it you ba$tard.  When I got home he didn't know what to make of me and I threw him in a kennel but I felt strangely very very tired.  My husband was in bed asleep,  I slapped some loose gauze drenched with peroxide on my arm and I crawled in next to him and the next morning he rolled over looking at the back of my arm and lost his mind :)

    I was probably so tired because after the adrenalin wore off I went into a sort of shock.  He even bit through my muscles, huge hole in my body.  So there I was in the emergency room with an I.V. of antibiotics in my arm :)

    We are pulling for you Jeff.  Whatever is going on, it can be overcome.

    I actually had to have IV (5.00 / 1) (#10)
    by jeffinalabama on Tue Aug 02, 2011 at 10:14:05 PM EST
    antibiotics for an abscessed tooth. Root canal was ineffective, infection spread, and finally had to have the darned thing cut out.

    I had IV antibiotics this past May when (5.00 / 2) (#11)
    by caseyOR on Tue Aug 02, 2011 at 10:23:24 PM EST
    my appendix went south on me. In addition to keeping bacteria at bay post-op, the IV antibiotics cleared up an unrelated tooth infection.

    After leaving the hospital I upped my consumption of bacteria-laden yogurt to get my body's normal bacteria load back in balance.


    sweet aciddophilis milk is also good for this. (none / 0) (#28)
    by Amiss on Mon Dec 03, 2012 at 12:36:57 AM EST

    I've been reading (5.00 / 2) (#9)
    by lilburro on Tue Aug 02, 2011 at 10:13:36 PM EST
    and my thoughts are with you Jeff.  I hope you keep writing and that it helps.

    Since I know you are a sociology professor...I graduated with a sociology degree (just a BA, though) and I loved it.  I still spend a fair amount of free time being a sociology nerd, trying to write papers, etc.  Even though I suppose I am "unqualified"...  My professor/advisor had a ton of health issues to grapple with during my time there, as well as the incessant jackassery of our college's bureaucracy.  Being able to write and work meant a lot to him and helped him a lot.  And he's not a dry numbers guy, he lives it.  A sociologist's desire to document...  Anyway, these diaries remind me of some of the great things about him and how he taught me sociology.  I really appreciate that.

    So keep fighting Jeff.  Your diaries are great.  Sorry your day sounded like it was so miserable.

    I'll keep reading and weigh in when I can.  :)

    antibiotics (5.00 / 1) (#26)
    by CST on Thu Aug 04, 2011 at 04:03:04 PM EST
    are the bane of my healthcare experience.  Usually they just make me swell up a bit and break out in hives, but amoxicillin tried pretty hard to kill me once.

    Nothing compared to cancer of course, but I feel your frustration with doctors.  Everytime I see one I feel like a guinea pig for some newfangled drug that may or may not just make things 100x worse.

    I really hope this one turns out to be the one you are looking for, and they don't just send you on the drug merry-go-round.

    Also, regarding the insurance question that will be coming up, depending on the answer they give you, you don't have to just sit back and take it.  I know fighting with insurance companies is the last thing you want to deal with right now, but if they tell you "no", that doesn't mean they have a right to tell you "no".  I hope you have someone in your corner that can help you go through this stuff, but otherwise it can't hurt to bring it here.  I remember a few years ago my insurance company refused to cover an antibiotic for me because there are other, cheaper drugs available for the same treatment.  So I ended up paying a ton of money out of pocket, not knowing I could have put up a fight because those drugs were required for me since the cheaper ones might kill me.   When I told my mom about it she was livid and went to bat for me.  But I had no idea I could even fight back on this stuff.

    The insurance company model is often to just say no, and hope you will just sit back and take it.  I'm sure MT can also tell you a lot about that.

    Why is this diary on a blue background? (none / 0) (#12)
    by oculus on Tue Aug 02, 2011 at 10:30:23 PM EST
    And where is the "recommend" button?

    I hope my (none / 0) (#13)
    by jeffinalabama on Tue Aug 02, 2011 at 10:37:06 PM EST
    APA style citation didn't cause the issues... but I never know.

    Please take all internet diagnosis (none / 0) (#14)
    by oculus on Tue Aug 02, 2011 at 10:40:56 PM EST
    and suggestions re treatment with the proper caution.  I once misdiagnosed (over the phone)adult chicken pox as heat rash.  Then I stopped practicing medicine w/o a license.  

    your real name isn't (5.00 / 3) (#15)
    by jeffinalabama on Tue Aug 02, 2011 at 10:45:23 PM EST
    "Frist," is it?

    <Ducking and running>


    For real... (5.00 / 1) (#17)
    by kdog on Wed Aug 03, 2011 at 09:31:10 AM EST
    was talking with the nurse this morning about trying to diagnose via web...a fool's errand.  And the web seems to be focused on the worst of the worst scenarios...causes more worry than it educates.

    Like politics or sports or anything else on the internet, it's hard for the uneducated to tell the straight dope from the bullsh*t.

    Not to say educating yourself isn't a good thing, but its all about the source.  And not to say that doctors aren't human, they f*ck up like we all do...but they are the pros.  What is a diagnosis but an educated guess?

    Can't say I've changed my views on the permission slip system for drugs, but I believe more than ever in seeing the pros for recos.  Though if I was uninsured, and the 80 bucks I dropped became 800 or 8000, free people should at least have the option on giving drug treatment a go without permission.  I think I woulda rolled them bones on a similar antibiotic that I was prescribed if I was uninsured.  otoh, it's only a f*ckin' bill, a piece of paper and a bad credit rating if ya can't pay it...nothing compared to your health.  Not something anybody should worry about, especially you Jeff...if they pile up laugh at them, its just paper...like money.  Not flesh, not blood, not heart, not soul...just paper.


    When they start up work houses (none / 0) (#18)
    by jeffinalabama on Wed Aug 03, 2011 at 10:55:13 AM EST
    or poor houses again, I'll become a subversive.

    "You'll never take me alive, debt copper!"

    Apropos of nothing, gotta ask Jeralyn if I can diary on areas far beyond medicine/government/employment and personal... saw an article you'll love, as will dadler and Jim...
    Secretary Napolitano Announces Proposed Ammonium Nitrate Security Program.

    More records, more control. I could write this diary in minutes. I used to buy 200 lbs per acre of N, or 600 lbs of ammonium nitrate per acre for pecan trees while farming. I'd also buy diesel fuel.

    Those were the two ingredients in the Oklahoma City bombing, I think.

    Those are also two ingredients used in various types of agricultural and horticultural production.

    So now, according to DHS, farming=potential terrorist.  What utter cr@p.


    The business from which the Norwegian (none / 0) (#19)
    by oculus on Wed Aug 03, 2011 at 11:29:28 AM EST
    farmer/alleged mass murder purchased fertilizer notified the government after the bomb(s) exploded.  

    So we need to register (none / 0) (#21)
    by jeffinalabama on Wed Aug 03, 2011 at 12:42:32 PM EST
    gardeners now as potential terrorists? I don't know if we're talking past one another here or not...

    What's the definition of 'terrorist' now to make the watch list? I don't know, but sometimes I wonder if the Pirate Crew is on the list... some people in government have no sense of humor.

    My concern that this ideas stinks comes from the trends, or lack thereof, of fertilizer bombs being made in the US, even in Norway. Yes, there have been incidents, but that Franklin statement "...little bit of freedom...little bit of security" keeps running through my mind as a refrain.

    anyone could make explosives out of charcoal, a bag of sulfur-- another ag product, and potassium nitrate-- another fertilizer, but also used to make corned beef pink, and salami pink, also...nitre is naturally found in, for instance, Pennsylvania-- fairly near fallingwaters, as a matter of fact!

    Are we talking past one another, or am I misunderstanding in some way?

    By the way, did the Padres pull it out last night?


    Pads blew it 1 to zip. A continuum. (none / 0) (#22)
    by oculus on Wed Aug 03, 2011 at 12:46:28 PM EST
    I thought it was interesting the Norwegian fertilizer supplier acted after the fact.  No watch list there, of course.  

    I am much more concerned about the 4000 unpaid FAA employees at present.  Flight tomorrow a.m.


    Thanks. (none / 0) (#23)
    by jeffinalabama on Wed Aug 03, 2011 at 01:01:01 PM EST
    I do understand the concern with the FAA issue...

    How did it go for you today? (none / 0) (#24)
    by oculus on Wed Aug 03, 2011 at 10:30:09 PM EST
    feeling much better. (none / 0) (#25)
    by jeffinalabama on Wed Aug 03, 2011 at 11:56:31 PM EST
    Doesn't mean good, just much better. Calling the doctors in the morning to find out if I need a change in medicine, though.

    They can't hold medical bills against you (none / 0) (#29)
    by Amiss on Mon Dec 03, 2012 at 12:46:54 AM EST
    In many states. But doctors have been known not to see you if you are at least not paying something. In Jax area there are many doctors that refuse to see you before you pay them, and they ddon't take checks either.

    you have to (none / 0) (#30)
    by Amiss on Mon Dec 03, 2012 at 12:53:19 AM EST
    Pay the co-pay firsst I meant before they send you back to see the Dr.