Engaged Patient

I am very excited to announce that this Wednesday I will be participating  in an engaged patient discussion with Virtually Connecting.

Virtual Connecting is an awesome group that started in the educational technology world, enabling people to participate in conferences virtually and synchronously- usually through quick discussions between people at the conference in person, and people who could not physically attend. I have participated with Virtual Connecting a few times already, which has really helped me to feel engaged in my scholarship and academic spheres. To say I am excited about Virtually Connecting spanning the chronic illness, constant patient part of my life too would be an understatement.

As I have mentioned in other posts, particularly this one, engaging patients in their medical care is incredibly important to me. Its something I have actually blogged surprisingly little about, care very deeply about, and constantly annoy my doctors with. ūüėČ

I am definitely an engaged patient. It is my life, my health, and something I am actively going to play a role in- whether my medical professionals like it or not. I would love to see a medical system more conducive to medical teams than doctors handing down information and decisions to patients.

Anyway, space to participate live via Hangouts with the Virtual Connecting discussion is limited, but the session will be livestreamed – so anyone can watch along and participate in the discussion on twitter using #vcept. Let your voices be heard!

I’m SO MAD. The ongoing saga of my uterus.

I’m still bleeding. Thankfully, no longer overflowing the Diva cup, but still bleeding.

Yesterday, I got the student health center to write me a referral to my local GYN, Dr. H, so that it would be more affordable. I called her office immediately after I got the referral page. That was around 1pm. I had to leave a message for Dr. H’s nurse- who I hate, she’s a moron.

Dr. H’s nurse called me back around 1:50pm. She said Dr. H didn’t know anything about the letrazole, which I find interesting for two reasons 1) Dr. H and I talked about it together over the summer when we had to find Dr. Y again, and 2) if you have a degree, and specialize in reproduction, you should know what an aromatase-inhibitor (AI) does- even if you aren’t familiar with the specific drug. …So the nurse says I need to call Dr. Y’s office. I explain that 1) I have talked to Dr. H about this drug/treatment before, so I don’t believe she knows nothing about it, 2) an AI should not be causing this, that’s not how they work, this level of bleeding after being on an AI for almost a year is very unusual, and 3) I cannot afford to see Dr. Y again as he is not in my insurance network – so even if Dr. H doesn’t feel comfortable with the drug, she can take me off it now, and this needs to be seen. This was after having a long discussion with the nurse about if this bleeding was near when my normal period would be? HELLO WHAT DOES MENOPAUSE FOR ALMOST A YEAR MEAN TO YOU?! No, it’s not near my normal period time, as I haven’t had a period in over a year (I was on continuous BC- prescribed by Dr. H nonetheless, before that for 9 months). Then on the amount of blood I was loosing- and the nurse couldn’t get it into her head how mL as a measurement of blood works. She only wanted to know how many pads I’m going through- I’m using a menstrual cup, I can’t tell you how many pads I’m going through. I can tell you that I overflowed my 30mL cup, and an average disposable pad holds 5 mL, so that’s approximately 6 pads. She couldn’t understand that math either. … So after having that discussion, and me explaining the numbered list above, all she would do was insist again that I call Dr. Y’s office, and then call her back.

So I call Dr. Y’s office and get forwarded to his P.A.’s answering machine. I left her a message explaining the whole situation.

5pm comes and goes, and I don’t receive a call back. At that point I decided to send Dr. Y’s P.A. – we’ll call her J, an email. I have her email address from trying to plan my surgery this summer. I explain the entire thing again, in email, and send it off before I head out for my class.
Within 30 minutes I get a text message from J, asking if she can call me in about a half hour. I text back that I am walking into class from 7-10pm and unable to talk in a half hour. She says to text her as soon as I can speak to her on the phone the next morning. As it turns out, my class takes a 10 minute break at 8:00pm. I text J that we have a break so I can talk right then, if she wants, and she calls me immediately.

She says that Dr. Y is now in-network with my insurance…but unfortunately she has my old insurance information. I tell her my new provider, and of course, that is the one company he is not associated with. She says she understand the situation then, financially. So, she says she’ll fax my local GYN an order for an ultrasound, so that Dr. Y still gets the results but I’ll be billed through my local GYN (who is in-network). That I shouldn’t be bleeding at all on the AI, so after the ultrasound results- she’ll try to see if it can be handled up here, or if I’ll have to come down and see him. And she’ll have Dr. Y decide if we need to change my dose. I then had to explain that my new insurance won’t cover the AI, so I only have what I last ordered on my old insurance left- a 90 day supply. After that, I can’t afford it anymore. She asked if A and I were planning on having a baby in the next year or so, and I laughed and replied we’re second year PhD students. We’ll only do that if the ultrasound comes back that everything must go soon and we HAVE to. She expressed that we may be able to try other pills then, that are sometimes more affective after surgery than they were before, but we’ll revisit that after the ultrasound results come back. And, that if I text her my local GYN’s fax number, she’ll send them the order first thing in the morning.

Remember, this is after 8:00pm, on her personal cell phone. I can’t express how much I love J. She is wonderful.

So, this morning I get a text at 9:12am letting me know the fax had been sent, and I should be able to schedule the ultrasound soon. Great!
I spent all morning and afternoon at a conference for work, so I made sure to pick a seat at the back of the room where I could easily leave, and kept my phone on vibrate and on my lap, so that when Dr. H’s office called I could easily answer it.

Fast forward to 1pm and I still hadn’t heard from Dr. H’s office. We were on lunch break at the conference, so I took the opportunity to call. I reached a receptionist and explained that my specialist had faxed over an order for an ultrasound that needed to be scheduled. The receptionist forwarded me to Dr. H’s nurse’s line. Once again I got the answering machine and left a message.

So, I wait for them to call. The conference ends, I go to the grocery store, I go home, and still nothing. At 4:30pm I decide to call them back. I want this scheduled before the weekend.

I reach another receptionist, and explain “my out of town specialist faxed an order for an ultrasound this morning, so I can have it done locally. I called around 1 and got forwarded to [Dr. H’s nurse], but got her answering machine. I left a message but haven’t heard back from her, and want to get this scheduled before the weekend.”

And what does the receptionist say? “Oh she left at noon today.”

Logically, I ask “why did I get sent to her line if she wasn’t here?” because, shouldn’t they have said she wasn’t in when I called, not say, I’ll forward you to her?

Here’s where I start to get really mad. The receptionist starts to get snippy.She says “its medical, all that stuff immediately goes to the doctor and nurse, we can’t do anything with it until the doctor signs it. Dr H left before [her nurse] did.”

Okay. The fax got there well before noon. I know because J texted me. I explain this to the receptionist, and ask if it’s possible Dr. H has signed it already, as there was time from when it came in to when she left the office.

And snotty receptionist replies “other thing can come in before yours” like that justifies Dr. H not paying attention to things that are faxed to her that morning while she was in. (And since I called yesterday about the bleeding, and she said to talk to my specialist, you’d think that something from my specialist’s office would get her attention).¬† I ask if the receptionist can see if Dr. H had signed it before she left. ..and surprise surprise, of course she can’t.

I’m already mad, and you can hear it in my voice. Her snippy attitude isn’t making it better. I know, its Friday, and you may have had a long day. Usually I am super sweet to receptionists, and others in the service industry because they’re doing what they can. But I am a patient clearly invested in my health and being ignored. I have to wait over the weekend to find out the cause of my unusual bleeding, that my specialist’s P.A. was concerned enough to talk with me far after hours about. My being short was justified. I reply with “fine, I’ll call back first thing Monday then” and hang up.

At this point, I’m so mad I’m in tears. I mean are you fucking kidding me. I get people are busy and can’t always be in the office- my whole office was at a conference today so not there to answer phones. BUT WERE FUCKING CAREER COUNSELING NOT SOMEONES MEDICAL CARE. And Dr. H works in a fucking practice with a bunch of other doctors. IF A SPECIALIST CALLS IN A TEST FOR UNEXPECTED HEAVY BLEEDING (WHICH I FUCKING TALKED TO DR. H’s OFFICE ABOUT YESTERDAY AND THEY PUSHED ME OFF TO HIS OFFICE) THEN YOU SHOULD MAKE SURE TO GET THAT TEST SCHEDULED. ESPECIALLY RIGHT BEFORE THE FUCKING WEEKEND. NOW I HAVE TO WAIT UNTIL MONDAY FOR THEM TO EVEN SCHEDULE THAT SHIT, AND WHO KNOWS HOW LONG IT WILL BE BEFORE THE IMAGING CENTER CAN GET ME IN. I MIGHT NOT EVEN BE BLEEDING BY THEN. ARE YOU FUCKING KIDDING ME.

Oh I hate her office staff so much. They’re shit at contacting patients too- one time they scheduled me on a day Dr. H wasn’t even in that office, and said they called me to tell me that and give me a new time BUT I NEVER GOT A CALL FROM THEM.

GAHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH.

How can you justify not taking care of your patients?
Things like this make me thankful for medical professionals like Dr. B2, and J. But it shouldn’t. All medical professionals should care about their patients as human beings concerned about their well being. It shouldn’t be the exception.

“The Healing Power of Your Own Medical Records”

This morning my mom shared a link with me to a New York Times article entitled “The Healing Power of Your Own Medical Records.”

The article describes a 26 year-old PhD student at M.I.T. who had access to his medical records and used them to push for treatment of a brain tumor. His graduate education and resources enabled him to research symptoms of his tumor growing, recognize them as they came to affect him, and push for further medical attention. The article then goes on to suggest the benefits of allowing patients access to their medical records- they can become more informed about their condition, and more complaint with treatments.

I find this article comes at a particularly apt time for me. I have diligently gone to all of my medical care providers and demanded a copy of my medical records. In some cases they give me the entire file, others they only give me the digital file. In one case, my doctor had to approve what she was willing to give me. Sometimes I have to pay for it, other times its free. At the end of the day I have the most complete collection of medical records I could gather (everything except my ophthalmological care- which I should collect and add to it). It lives in a binder that I bring with me to each and everyone of my medical appointments.

As you know, I am also a PhD student. I have a background in Animal Science and Reproductive Physiology. I have access to University research, and understand medical jargon. Plus I have rather impressive research skills. In my training as a graduate student I have been taught to collect all relevant data, analyze the data, integrate information, and provide thorough commentary. As such I have shown up to doctors appointments with printed copies of documents detailing how I’ve been feeling and information I think is important to my health care provided.

And yet all I’ve ever been met with is:

  1. Evidence in my medical records that my doctors do not listen to me when I speak
  2. Doctors who think I am over analyzing or “paying too much attention” to my health
  3. Doctors who refuse to look at the binder of medical records I bring to them
  4. Doctors who are only willing to give me the 15 minutes of a standard outpatient visit

Which leaves me feeling depressed, and I may go as far to say even traumatized each time I have a doctors appointment. I have anxiety about making doctors appointments, even though my pain is returning, and even though I am still certain there is something going on with me that is not being addressed and needs to be–something wrong–because I know I’m not going to listened to or treated like a patient who knows more about their own health than anyone else, let alone as a competent person- who has advanced degrees and clearly knows something about reproductive physiology, research, and making logically and critically sound decisions. Honestly, I avoid seeking out care because of this fear. Every time I think about making a new appointment the memories of the previous failed appointments re-surge. Its to the point now that I think I need to seek out psychological counseling to help manage it.

My point here is that having access to your medical records isn’t inherently healing. It actually can make things worse for a patient’s experience- serving as more evidence that they are not being heard. What would be healing is attentive medical professionals. What would be healing is¬†medical professionals that actively listen. What would be healing is¬†medical professionals that show they care about the patient as a whole- as a person and not just as a symptom or collection of symptoms, or someone who is taking up their time.¬†What would be healing is being taken seriously by medical professionals as agents of our own health. I’m not denying that what the M.I.T. student was able to do with his records isn’t important- actually, I’m arguing that it is essential to good health care; but, it all comes down to the medical professionals. The M.I.T. student was incredibly lucky that his doctors took his research and experiences seriously and treated him as knowledgeable of his own condition; that they were willing to pursue his medical directives- and do so in a timely manner; that when he spoke about his condition and thoughts about the direction it was going, he was heard.

Apparently I am not that lucky.

And since I am also 26 and also a PhD student (actually one with more relevant degrees relative to the medical field), I have to wonder why it is that I am not being taken seriously.