Medical Non-Care

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

How doctors’ offices screw up …

I have spent almost my entire life in doctors’ offices. Ever since I was 8 and I was diagnosed with FH, I have felt like everyone’s Guinea pig. As I have grown older and my health life has been more and more complicated by this disease, my visits have only increased to the point that I feel like I go more often to a doctor than I go to the grocery store. So, I consider myself a pretty good resource to know what you can expect at a doctor’s visit.

I have seen all sorts: people who are brilliant and on top of their game, people who are caring and nurturing and sympathetic, and people who make me wonder how in the world they ever made it past the door, much less past the interview and the hiring police for their role.

In recent years, I have been amazed at how often I meet simply incompetent medical staff. I grew up with an RN for a grandmother and a hospital lab bio-chemist for a mother and with many of their friends in all medical fields, from a flebotomist to a chief of staff in a hospital. Until recent years (let’s say 7-8), I have never met a doctor or a nurse who simply cannot take a blood pressure without a machine. Nowadays, this is the norm, not the exception. I know what my blood pressure is, and it is usually very weird, because the gap between the 2 numbers is very large. Almost 90% of all the nurses who take it manually come back with “120 over 60”, which is the text book pressure. Mine is never text-book. Ever. Not on my best day! So, I know they’re making this up!

Like I said, medical experience runs in my life and in my family. I know way too well about the long hours, crazy schedules, on call nights, ungrateful patients, nasty business of being a medical professional. However, with all that in mind, I have felt like the level of care I am receiving as of late is not what it used to be. I don’t think I am entitled, but I do think that asking someone to pay attention to the details when it comes to our lives and when it is what they get paid for is not too much to ask.

This is just an example, easiest to give. But there are many. I can never run out of examples about bad office nurses, but even doctors can be bad, too. I have had doctors who have told me “well, you should really google that, because there are many symptoms for what it could be, so I am not sure which one you would have”. Or others who tell me “well, yeah, your (cholesterol and heart) numbers are not normal, you have cardiovascular disease, you have carotid stenosis, your breathing is shallow, you’re allergic to half of the food pyramid, and cannot eat half of the other for blood thinning reasons, but other than that, you’re healthy, right?!” I am wondering what “other than that” is left.

I promised myself that I will write a book about every time I walk into a doctor’s office and something just baffles me about what they do, or about how many times I feel smarter than them. One day, I am sure I will.

But right now, I want to just record, for posterity, this event which happened today, as I went to my cardiologist’s office to test my INR.

I will just replay the whole instance of what happened here:

I walk into the nurse’s office, and the INR machine is blinking with a number. Normally, when the number is blinking, you will need to push M on the machine, for “measure” and then the machine is ready for you to test your blood sample on the strip inserted in the machine. You cannot put the blood sample on the strip till you hit M and then machine looks ready for the measuring.

Her number is blinking, and she is not pushing M.

She pokes my finger, and squeezes it hard. A lot of blood comes out, and she wipes it with a clean cloth. Now, there is no blood. She squeezes it again, and lots of it comes out, again. Then, she wipes it again, clean. All the blood – gone. Then, she pushes the M on the machine. The machine is not ready yet. It’s taking a while to give us the OK that it is ready. A third time, she squeezes my finger and only a little droplet of blood comes out. The machine is now ready, and she is mad: “Well, this is hardly enough blood now. This won’t work. I believe we’re having machine problems today.” Umm…no, no, the machine is doing exaclty what it’s supposed to be doing, but you’re having you problems, because you squeezed all the blood out and nothing is left, so now you have nothing for the machine. Why did you wipe it twice when you had it plenty?! – I am thinking, not saying anything.

She puts the very little blood on the strip and the machine errors out. She starts the same ritual again, only now, after she pokes my second finger (which was completely unnecessary, had she done the first one on time and without wasting the blood), she pushes the M button and stops wiping my blood off. Now, we have enough blood, and the machine measures it. 1.6 – yippee, I am in range, so we’re good.

Nurse: well, that’s too low.
Me: no, it is not. It’s within my range (which is 1.5 to 2.2).
Nurse: oh. (looks up something on a printed piece of paper where my regimen is already printed – whatever happened with electronic medical records?) Oh, you’re right, we’re good. Let’s go over the numbers: you are taking 3 mg on Monday, 2.75 on Thursday and 2.5 all the other days.
Me: no. I take 2.75 on Saturdays, also.
Nurse: what?
Me: I take 3 mg on Monday, 2.75 on Thursday and Saturday and 2.5 the other days.
Nurse: oh. So, how often do you come back for it?
Me: monthly.
Nurse: OK. (she is writing up my paper to take home and she is writing down on the paper my daily doses): OK, so 2.75 on Thursday and Saturday, and 2.5 the rest of the days. And she writes all this down.
Me: Monday needs to say 3 mg, not 2.5.
Nurse: oh. (Looks incredulous at the paper, and then she opens up my electronic chart and confirms it, that yes, Monday is 3mg). So, do you want to make your next appointment now, or not?
Me: yes, please I would like to make my next appointment now.
She pulls up a calendar on the computer – today is the 2nd of August and we have already discussed that I come back monthly, right?!
Nurse: so, we have the 16th.
Me – puzzled, with my phone calendar in my hand: the 16th of August is NOT in a month, and the 16th of September is a Saturday. So, I ask: you have the 16th of what?
Nurse: oh. You said a month, right?!
Me: yes.
Nurse: We have September 2nd. She looks at me for approval.
Me: September 2nd is a Saturday.
Nurse: oh. Would you like to come before the 2nd or after?
Me: after.
Nurse: How about Monday, September 5th?
Me: September 5th is a Tuesday.
Nurse: oh. Yeah, Tuesday.
So we settle for September 5th, a Tuesday, at such and such time. I don’t trust it, but we’ll go with it for now.
Nurse (last question): would you like me to take a blood pressure for you today, also, ma’am?
Me: (in my head: holy freaking bloody hell NO!!!) no, thank you, I am good.

I sigh and I leave.

And I tell you this with just one purpose in mind: I encourage you to always pay attention and always speak for yourself, when you can! I remember, when I was in the hospital for my heart surgery, my biggest fear was that I would be so out of it that I would not be able to speak for myself. I coached my husband in everything he needed to know about my condition, all the implications any drugs or procedures would have on me, so he can be my spokesperson. Luckily, I was not out of it in the hospital to the point that I could not speak for myself, and for the most part, the hospital care was amazing. There were exceptions and there were mistakes, and I knew my rights and I asked for them to be remedied right away. Don’t be afraid. They are supposed to be trained and have the knowledge and they are supposed to have all the answers. But trust me – it is not always the case anymore. More on the contrary.

I am not sure what is wrong with the world today. I see shortcuts in every industry, people trying to do less for more benefits, entitlement, redundancies that hinder more than help, people are hardly every attentive or compassionate anymore. But especially in healthcare, you must advocate for yourself. Speak up. Know your numbers. Know your pills. Walk in there with certainty and an open ear and open eyes, to ensure you look after yourself before you trust your life to their attention.

And if you can afford it (some insurance companies would even cover these), buy your own meters, machines, technology at home, to ensure you have a backup result on top of what they provide. And as often as you can, ask the doctor (instead of the nurse) to take your blood pressure, even if it is just for a second opinion of another pair of ears.

Much health and true care I wish for all of you!

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Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

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