Friday, April 13, 2012

Health Care Professionals Can Be Idiots Too

Health care professionals can be idiots too.  There, I said it. 

Yup, they can be just as stupid, ignorant and clueless as the rest of us...only their mistakes and missteps can have life-altering, and sometimes life-ending, results.  Based on this alone, I want to hold them to a higher standard. 

Only I am quickly learning that what I want to do and what I need to do are two completely different things...

No Respect for My Pre-Existing Conditions

Truth is, I don't want to have to be writing this post and letting you know that things are not going smoothly for me.  I don't want to discourage anyone living with Hepatitis C from considering their options and proceeding with treatment if that is in their best interest.

But I have a BIG problem and it is not going away.  So I need to deal with it.

My problem is that I live with multiple chronic illnesses, including diabetes, fibromyalgia, chronic pain, cancer treatment late effects and, the biggest complication of all, dysautonomia.  I have repeated these diagnoses ad nauseam--over, and over, and over--to my Hepatitis C treatment team.  They nod, they write them down, but at the end of the day they just don't get it.  They don't get that my pre-existing medical conditions are affecting my Hepatitis C treatment experience.

Won't Talk to My Other Doctors

I was warned before the start of Hep C treatment by my neurologist that ANY treatment-related anemia would make my dysautonomia symptoms worse.  At the start of treatment, when I share with the hepatologist and hepatology nurse that the neurologist prescribed Florinef, an oral steroid medication, to treat any increase in my dysautonomia symptoms, they said I could not take oral steroids during treatment.  At week two, I asked my hepatologist to call and consult with my neurologist regarding my dysautonomia because, sure enough, treatment-related anemia was making my dysautonomia symptoms much, much worse.  Shortly after my request, the hepatologist agreed I could take the Florinef.

Silly me, I thought the reversal in the hepatologist's stance was because the two doctors finally talked.  That was until I talked to the hepatology nurse a few weeks later, who commented, "I thought the Florinef was preventing anemia by saving red blood cells."  "Uh, no," I replied, "It helps my body retain salt which increases my blood volume and makes up for the loss in blood volume due to anemia."

Playing Pass the Buck

I'm also not sure why, but when I started Hepatitis C treatment, I wasn't given a consent form for treatment that listed all the goals, procedures and side effects of treatment.

That was unfortunate for me, because it meant I had no idea how my hepatology treatment team was going to handle things like anemia, low white blood cells counts, side-effects, etc.  So when things have come up--and it seems like every week something new does come up--I spent a lot of time and energy bringing my concerns to the hepatology team's attention.

From there, sometime they handle the problem and sometimes they delegate it to someone else.  Either way, it always means a lot of work for me: making phone calls, making appointments, going to doctor's visits, going to the pharmacy, asking for follow-up lab slips, asking for lab results, etc.

Sadly, when they decide to "delegate" my care, it has the flavor of dumping me onto another medical service that might or might not be able to help me.

For example, hepatology tried to delegate my blood transfusion arrangements to my primary care doctor.  Only I found out my doctor was out-of-town at the time and the doctor covering for her informed me that the Family Health Clinic didn't have a way to expedite a request for an outpatient blood transfusion.  So I had to call the hepatology nurse back, let her know my primary care doc was out of town and that hepatology needed to make the blood transfusion arrangements.  The end result?  I got sent to the Emergency Room instead of the outpatient cancer center (where it turns out I would have gotten better patient care.)

The Laissez Faire Approach

I have been pushing hard to have my blood counts monitored on a weekly basis while they have been in flux.  After all, I figured if the hepatology staff had the numbers in front of them, they could be proactive in treating these side-effects.  Especially since I told them that anemia would make my dysautonomia worse...

Boy, was I wrong.

On top of that, I have to listen to the hepatology nurse constantly telling me I don't need to have my labs drawn every week.  My best guess at what that really means?  She is too busy/absent-minded/lazy to be checking my labs on a weekly basis and following up with the doctor when action is needed.

I don't agree with her.  So I ask for a lab slip and then call her weekly to ask her to check my results. 

My latest dilemma?  I just had labs drawn Tuesday, April 10th.  Based on those labs, my hemoglobin has once again dropped, from 9.8 to 9.1, in 7 days.  (The critical level is 8.5.)  But the hepatology nurse made it a point to tell me she doesn't think I need to go back to the lab this weekend and have another level drawn before my doctor's appointment on April 17th.  No, instead, if I did things her way, I would talk to the hepatologist about further side-effect management decisions, like a ribavirin dose reduction, blood transfusion or start of erythropoietin therapy, based on week-old hemoglobin results.

Of course that left me asking myself How does this make any sense?!?

Today I sent out an email to my primary care doc asking her to fax me a lab slip so I can get the level rechecked closer to my upcoming Tuesday appointment.  That way, I can get the hepatologist and his nurse practitioner to make any necessary arrangement during my clinic appointment for a blood transfusion or a prescription for erythropoietin based on real-time lab results.

I am happy to report got the lab slip a few hours later and I am good to go back to the lab this weekend.

I'm One Frustrated Patient

I am so frustrated about this ongoing situation.  I would LOVE to transfer my care to another hepatology nurse, only there isn't another one in the practice.  So all I can do is deal with my anger in productive ways by being the best damn patient advocate for myself that I can be.   Because, well, my life really does depend on it right now.

I can also list all the things that really irk me about my current hepatology health care providers.  Maybe you can relate to this list too.  After all, can you really trust health care providers who:
  • don't listen to their patients or ask them questions
  • don't look up information on the conditions their patients' have
  • don't read up on the medications their patients take
  • don't or won't take responsibility for their patients' care and well-being
  • don't or won't work with other health care providers as a team
  • don't communicate with patients by email
  • won't be proactive about the management of their patients health problems

That said, rest assured I am not going to let my Hepatitis C treatment providers injure or kill me. No way, no how--it's not going to happen. That's because I have a health care team that I can fall back on and ask for their help when I don't agree with how my Hepatitis C treatment is being managed.

Yes, today I am thankful I have other health professionals I can rely on for my care.  In particular, thank goodness for my primary care doctor! I think I am going to owe her a huge debt of gratitude when all is said and done.  What do you think?  Should get her a present?  If so, what should I get her?

Still hanging in there and taking it day by day...even on Friday the 13th!

Wow, could I really use your support!
I've got 120 days of Hepatitis C left
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Anonymous said...

I'm exhausted just reading all that you've had to piece together. Not everyone (well, me for sure)could keep everything straight the way that you've had to do. So many patients just keep quiet and do as their docs say. Someone has to be using logic.Thank God you've got the
intelligence and determination to keep pushing. You've got true grit for sure. Sending healing thoughts your way.

Iesadora said...

I can understand you not wanting to discourage anyone from seeking treatment for Hep C with this post, but you know, you are actually empowering them. Your giving those thinking about treatment information, perspective, a heads up, important discussion topics to have with their doctor, and confidence. I don't want to sugar coat anything - IT BLOWS - but like symptoms doctors can be managed and your proof of that!

That nurse really needs to be in place. When you get your results and talk to the doc about them, if there is a change in your levels from the past week I would ask the doc to knock her upside the head, I mean, inform her that your labs need to be done every week - no questions, no hassles - b/c of the frequency of changes in your levels. AND be there while he does it to enforce the fact that your not just a nuance on the phone but an actual person!

Your strength never ceases to amaze me - keep it up! We're all here rooting for you!!!

Felicia Fibro said...

Selena, I'm so sorry to hear you're having this many issues with getting proper care! Can you request an advocate through your insurance company or through one of the clinics you're going to? Sometimes you can get one for free. I was thinking this might take a little off your plate because they could be doing all the calls to the docs to make sure they're communicating. With the complexity, I'm sure you'd still have to be somewhat involved, but maybe you'd get a little bit of a break? =( Keeping you in my thoughts. *hugs*

Oh, the humanity! said...

Uhhhh I feel your frustration. Everytime I go to my doctor and tell him how I'm feeling (tired, sick, like throwing up, not eating properly for weeks, stomach pains, can't walk, he says "you had leukemia didn't you?" EVERYTIME. Then drops the issue and asks if I need a new script of medication.

Don't even get me started on Emergency Room staff... I was there because my codine pain relief (for what they decided was a stomach ulcer, but have now decided they have no idea) made me all blocked up. I asked the nurse what I should take for pain since codine didn't agree with me. "Just take some Ibeprofen" Which is the number one thing those with ulcers shouldn't have. She's like "Oh really, oh yes. Um I don't really know."

Then they kicked all the patients in the ward out at 5am before the next shift came on. Classy...

Margee said...

Selena, I had messed my FB account up, I think getting straightened out.
The point is I never read this one of your posts. My Lord, I feel like we went to the same dr( I know not), but exactly what you wrote was similar , to my experience , with a few worse parts.
We have talked & probably met since this.
I have some catching up, because now you are off treatment.
You friend & Hep C Warrior, Margee