ChezPerky

So, I rarely make public posts about comments I receive, unless it’s to address questions that I receive frequently, so I then address them en masse so that readers are all in the loop.    However, this one was too good to pass up.  Perhaps some of you remember my “!La Penultima!” post in which I was desperate to get out of the hospital after a six day stay in my own private inferno.  I had received generally good and compassionate care in the hospital from my nursing staff.  But there were significant errors made as well, which frankly compromised my care.  I am happy to report that the hospital administration (charge nurse, director of perinatal services, and quality assurance manager) have taken these issues very seriously and responded appropriately in all cases.    Every health care professional at the hospital that I have spoken to about the issues that occurred during my stay made it clear that I, as a patient, am my own best advocate, and know the intricate details of my complex care better than anyone.

However, it appears that I may have offended some health care professionals that read my blog.  Apparently, I have maligned the entire nursing profession, and everyone in it.  If that truly is the case – I apologize.  I have great respect for nurses – and all medical professionals.  People don’t go into nursing for the glory of it all – or the money, for that matter.  Most people who go into nursing go into the field out of a desire to care for others.  This does not, however, mean that they are infallible, nor does it mean that I, as a patient, must always assume that nurses (or any other health care practitioners for that matter) always know more about my care than I do.  I do, however, assume that most nurses have more medical knowledge overall than I do.

So I received today this comment on my “!La Penultima!” post:

Sorry to hear your so sick. I also have HG and have been in and out of the hospital. However, I am writing cause I am so offended by your take on your health care. I am a  registered nurse. I went to college to get a degree and have my license in two states And like all medical professionals I have to keep up with the rapid changes in treatments and drugs. You are a frustrated sick person NOT a medical professional. Being sick and in the hospital even 100% time and reading all the Internet has to offer will never make you a medical profesional or even fully competent in your own care. Even if you’ve been through this before- medicine is constantly changing.  You are educating yourself- great! We encourage that but don’t think for one second you know even a smidge of what we have to learn. It’s true ( about the PICC lines) protocols have changed. All you need 20-40ml of 0.9 Sodium Chloride flushed forcefully in each lumen at least twice daily. Heprin is a serious drug.  Yes,  it used to be used and in some cases is till used for PICC lines in some places but that is quickly changing. Most hospitals have done away with this protocol because like I said heprin is a very serious medication- a blood thinner used in the prevention and treatment if DVTs. So, again sorry your sick and frustrated. I’m sick and frustrated, too. But don’t pretend to be anything other than that.

Note that the grammar and spelling errors are not my own – I didn’t change anything about the comment.  Of particular interest is this commenter, who is lambasting me for masquerading as a health care professional (which I have never done – I am married to a health care professional, but I have never said on my blog “I am a healthcare professional” nor have I said “all nurses are stupid and I know more about everything than they do”), can’t spell the name of “a very serious medication.”  For what it’s worth, the drug she’d intended to reference was heparin, not heprin.  For the record, I’m well versed in the issues surrounding heparin use, particularly in pregnancy, but more importantly, my husband (a pharmacist) is far better versed in the benefits and risks of heparin than most nurses (certainly he can spell it).  Furthermore, while heparin is, indeed, used for the prevention and treatment of DVTs (mind you, as a pregnant lady who wasn’t allowed out of bed, I was at risk for DVTs) – heparin has many other uses as well.  In fact, pregnant women with certain thrombophilias are commonly prescribed daily heparin (or heparin derivative) injections to prevent miscarriage and other pregnancy complications.  That is only one additional legitimate use of heparin – and there are many others.  Yes, heparin is a “serious medication”.  Truthfully, all medications are “serious medications”.  There aren’t any medications without any known risks or potential adverse effects.  With any medication, one should carefully weigh the potential benefits against the potential risks before taking it, particularly while pregnant.

I am well-versed about the required care and feeding of my PICC line.  My PICC line was put in by a hospital that has not moved entirely to saline-only flush lines, although the hospital I was inpatient in this month has moved to using only saline-only flushes.  So while the nurses may not have been familiar with using heparin for PICC lines, they could easily have consulted with my physician, or with the IV Therapy nurses.  Or, you know, they could have at least flushed my line with saline, which they also refused to do.

Anyway, look, I’m not saying I’m a healthcare professional.   But this statement:  “I’m sorry your [sic] sick and frustrated… but don’t pretend to be anything other than that” is the part that pissed me off the most.  I have never made any claims to being a healthcare professional.  I do, for the most part, rely on my healthcare team to provide good care to me.  That doesn’t mean that I should just sit back and shut up when I do know something isn’t right or that my care is being compromised.  It was pretty frickin’ egregious to blow through my vein by running a caustic medicine through a peripheral IV at five times the rate that was ordered.  Now, I know what my medication orders are, in part because my husband participated in getting those orders set up.  Do I know more about that medication than the nurses?  I do not.  But I do know that if it was ordered at 200ml/hr and a nurse infuses it at 1000ml/hr, she (or he) is doing something inappropriate with the potential to compromise my care.  I don’t have to go to nursing school to know how to read and follow directions.

In fact, this attitude of “listen to me, I went to nursing school and have a shitload more knowledge than you can ever pretend to have, you ignorant fool” is precisely what causes issues in patient care, frankly.   Healthcare professionals who acknowledge that patients know their bodies and protocols well tend to be the ones with the most successful relationships with their patients.  But the “I am all knowing and you are not” attitude gets healthcare professionals into more trouble than its worth most of the time.    So yeah, this comment touched a nerve.  First, because I don’t like the possibility that the majority of readers might have perceived that I was maligning the healthcare industry.  I worked for years in the healthcare industry and have worked as an EMT as well.  So I hope that this was a simple misunderstanding between me and just one reader.  But if the majority of you got the sense that I think all nurses are idiots (which clearly they are not – just as in any profession, many people are brilliant and some people are idiots), please forgive me if that’s what you thought I was saying.

I will not, however, apologize for advocating for my own appropriate care.  The fact is, I was absolutely 100% right about the things that went wrong with my care.  I should have gotten my medications when scheduled, and I frequently did not.  I should have had my PICC line flushed – at LEAST with saline if not heparin – and having not had it flushed at all caused me to have an unnecessary (and not risk-free) procedure to have a  new line put in (twice, actually, because the first time it went up my carotid instead of down to my vena cava).  I should not have had medication run through a peripheral vein at 1000ml/hr.  I don’t know everything about the nursing profession.  But I do know when my care isn’t appropriate.

And, because I’m now all pissy and riled up about this, I will include my (lengthy) response to this poster below.  Feel free to skip it, of course, but here’s what I wrote:

First, let’s be clear – I don’t get my medical information, particularly that about care and feeding of my PICC line, from the internet. My husband is a clinical pharmacist in a hospital (and he’s the one who helps SET protocols for drugs like heparin in hospital use, so when he tells me there’s a problem, I’ll trust him – certainly more than I’ll trust an anonymous commenter nurse, or otherwise, on my blog) and I received very clear instructions from the physician who put in my second PICC line. I have also worked as an EMT, though am not certified in the state where I currently live. EMT certification is not the same as nursing school. It focuses on emergency (obviously) care, not ongoing patient care. I am not suggesting that being an EMT has ever made me as knowledgeable as a nurse, but I *do* have an appreciation for the complexity of health care and I am, therefore, a medical professional, if not an RN. Truthfully, there’s a reason that there are multiple medical professions – doctors, nurses, pharmacists, etc. Because you CAN’T know everything and better to be very good at something very specific than merely moderately adequate at all things related to healthcare.

My first PICC line was a saline-only flush. My second PICC line was not – and if it wasn’t flushed with heparin (5ml) daily, it got occluded. My third PICC line, which only needed to be placed because of the occlusion from not being flushed incidentally, is a saline-only flush. Many hospitals are moving to saline-only flushes (hence the change in protocols). The hospital that installed my 1st and 2nd PICC lines use both saline-only PICCs and ones that require heparin. The hospital that I was inpatient in only uses saline only flushes (PowerPICC Solo) – so I certainly understand that the nurses were unfamiliar with flushing a PICC line with heparin, because it’s not a protocol that hospital uses, but I had a line that wasn’t installed in their hospital, and I had with me the written documentation of the protocol for my PICC line – so they didn’t just have to take my word for it.

The fact is, my regular antepartum nurses did not ONCE flush my PICC line with ANYTHING. Not saline, not heparin, not kool-aid. NOTHING. Even when I asked that it be done. Every one of the nurses on that floor told me “well, we don’t do anything at all with PICC lines. They don’t need to be flushed, and the IV Therapy team are the only ones who can deal with occluded lines.” The IV Therapists who saw me were fantastic. But they also said that the nurses who were providing my daily care were not following hospital protocols even for saline-only lines – as they require all PICC lines be flushed with 8ml of normal saline per day.

Heparin (which you spelled wrong, by the way) *is* a very serious drug. It has also received significant scrutiny since Dennis Quaid’s twins were given significant overdoses of heparin in the NICU. I don’t take it lightly, nor does my husband – you know, my husband the licensed pharmacist – who DOES qualify as a medical professional, even if I do not.

I do not know everything nurses know. I don’t claim to. But I am educated on my own protocols, not via the internet but via the nurse educators who have taught me how to provide self-care while on home bed rest. I have to provide my own care and feeding of my PICC line, IV-administered medications, IV Fluids, and my two infusion pumps. I am very lucky that I have a pharmacist husband who can take care of a lot of the little details that I frankly don’t have the energy to deal with right now, but I was still required to receive extensive training on my own self-care.

Whether I’m a nurse or not, I do know when I’m in a tremendous amount of pain. When a nurse runs Phenergan (a very caustic drug) through a peripheral IV at a rate of 1000ml/hour, when it should be run at 200ml/hr and I’m literally crying in pain, the nurse should absolutely not say, “Yeah, Phenergan always hurts.” She literally burned through my vein and the pain was excruciating. I will take all the contractions and kidney stones in the world over that pain – it was unbelievable. When the IV therapist came in a short while later, she was horrified. Nurses know a lot. They are very well educated. Nurses work extremely hard, and have to be very cognizant of a myriad of details. But nurses, like any other humans, are not infallible. Nurses, like everyone else, make mistakes. That particular mistake was completely uncalled for. When I spoke to the charge nurse the next day (very calmly, mind you – I wasn’t the one who demanded to speak to the charge nurse – in fact, I had avoided speaking to the charge nurse all week because I did NOT want to be in an adversarial relationship with my caregivers – it was my day shift nurse on my last day in the hospital who alerted the charge nurse to the issues that had happened in previous days) – anyway, when I spoke with her, I told her that it wasn’t that any one thing was so egregious, it was that I felt that there was no acknowledgment from anyone but the IV Therapists that I could possibly know anything. The charge nurse said that everything that had happened was inexcusable, and she wasn’t there to smooth things over, but to sincerely apologize.

Mistakes happen. I wasn’t upset about the first mistake. I wasn’t upset about the third mistake. Frankly, I wasn’t that upset about the phenergan rate (though I was in significant pain) – but my husband was furious, and rightfully so. It’s very difficult for a patient to know when things have moved beyond the normal “everyone makes a mistake” to crossing the line into negligent care. Bottom line, I wasn’t going to spend another night in that hospital if I didn’t have to, because by then I was just getting sicker and more frustrated.

You don’t know me. You only know the pieces of me that you’ve read on the internet. I was never unpleasant to my nurses. I worked hard to never be adversarial. Yes, I asked each nurse who came on shift to please flush my PICC line, but I did not argue with them when they said “we don’t do that.” I *would* however, correct them if they told me that the line didn’t need to be flushed – by providing them with the hospital documentation I received the day it was put in place. They didn’t have to take my word for it. Do I know how to administer mag sulfate? No. Do I know how to do a cervical check to know at what point I crossed the line from “perterm contractions” to “preterm labor”? No. I don’t have the foggiest clue. Can I do an fFN test for a patient? Definitely not (though I’d probably be better at that than a cervical check – no idea how nurses/doctors know what they’re feeling in there!). But I do know if a medication is supposed to be administered q6h, then it should be administered q6h. If I told a nurse that I was feeling very sick and needed my Phenergan they would say, “Oh, you want your Phenergan?” “yes, I was supposed to get it at 2pm”, “So…?” “So it’s 6pm now and I need it.” “Okay, so would you like me to get that for you?” “Yes please”. Typically, I’d then get it within the next 2-3 hours. I am not exaggerating. This was a daily conversation that I would have with my nurses. This was a scheduled, not PRN, medication, by the way. The fact that I went without multivitamins in my IV Fluids on some days was also inexcusable – everyone was fully aware that I was not eating or drinking anything, and clearly the multivitamins were not negotiable.

I apologize for offending you – I have high regard for nurses. I do not, however, have high regard for substandard care from any profession, including nurses. Like you, I am offended by YOUR tone (as you were with mine). You have made a number of assumptions about me which, frankly, are unfounded. I am very grateful that for things that were NOT related to my medications or PICC lines, my nurses, for the most part, were completely on top of things. At 4am my first night in the hospital, my contractions suddenly got extremely painful and close together and it was different than any other contractions I’ve ever had. Before I even had time to find the call button for the nurse, my nurse was at my bed side and on top of things. She did a cervical check, found that I had started to dilate and had the doctor on the phone two minutes later. Within 15 minutes of the contractions having escalated, I was on mag sulfate. That was nursing care at its best.

I am very sorry that you are suffering from HG – it isn’t fun and I know that all too well. I hope that you do not suffer for long and that you are able to stabilize and remain out of the hospital. I wish you a beautiful and easy delivery of your baby, and a complete resolution of your HG.

Regards,
Ms. Perky