Gastric Emptying Scan

I had my gastric emptying scan yesterday.

It was a 2 hour procedure, with images taken every 30 minutes. I walked back and forth to the waiting room between the pictures, and laid down for the scan.

I haven’t gotten the official results yet, but from the table on the copy of the images I got, it looks like at 120 minutes my stomach was about 48% empty.

Now, from reading up online it seems this may or may not be normal, and a 2 hour scan is really not as adequate for diagnosing gastroparesis as a 4 hour scan.

At 2.5 hours, >40% retention is considered slow gastric emptying, according to this research.

Would I have had >8% emptying in another 30 minutes? I know I was still burping and tasting eggs and orange juice for the next few hours after the test. So something had to still be in my stomach 4 hours later – was it >10% of what I had eaten?

I don’t know, we didn’t do the test that long.

Ugh.

I would have happily stayed at the hospital for 4 hours if that had been an option made available to me. Why do the shorter test if it isn’t as reliable?

I’m continually frustrated by the medical systems lack of standardization and evidence-grounded practices.

And I’m continually thankful I have the resources and abilities to find more information and call out doctors and medical practices. Or else I wouldn’t have an endometriosis diagnosis, nor a gallbladder right now.

But it is bullshit that I should have to do all of this independent research and the medical system isn’t build on doing what is best for their patients in the first place. Because it should be. We should aim to do the proper test, with proper procedures, the first time. And we should make sure patients are informed as possible about the procedures they are going in for so patients can call out inappropriate practices that arise.

I guess I should have researched the results of a gastric emptying scan more thoroughly before my test, so I could have questioned the 2 vs 4 hour procedure. Not that it would have been any more likely for me to have the longer scan done, but at least I could feel I addressed it.

Come On Brain

I can regurgitate information.

But synthesizing just isn’t working for me.

And that’s what I need to do right now.

Damn you, higher order thinking.

Damn you, brain.

😦

Worse Appointment Ever.

I met with the reproductive endocrinologist, Dr. E-H, today. I almost jumped across the desk to punch her. I’m still too angry to write the whole thing out, but I WILL NOT go back to see her again!

The gist of the appointment went like this: I get taken back to her office. She starts talking about my referral notes saying I was being sent to her for osteopenia following chemical menopause to treat endometriosis, and she has my bone density scan results. And that’s were things stop going well.
ALL she wanted to talk about was my endometriosis. Which was NOT why I was there; I was there to address bone density loss- which I actually had before starting the aromatase-inhibitor – the letrozole didn’t make it go down that drastically. So she starts asking why I got of the letrozole, which I tell her is because I ran out of pills and my new insurance doesn’t cover it. Then she starts pushing lurpon. –insert collective groan–

I tell her I WILL NOT, under any circumstances, go on lupron. I don’t believe it is a sound choice for managing endometriosis, and the only reason I agreed to go on the letrozole was because it makes more sense than just shutting down the ovaries, since the endometriosis lesions can produce its own estrogens whereas lupron is a GnRH-atagonist and only shuts down the ovaries. So she tells me, “endometriosis can be activated by the ovaries so shutting them down works, and letrozole doesn’t get rid of all the estrogens either.”  Which, may be technically true, but it just because both don’t suppress all the estrogens you produce, that doesn’t mean lupron an attractive option.

So then I tell her that I don’t know how my periods will be, since I’ve been on it since I had the surgery, and the excision of my disease should have removed it. She decides to tell me the disease can’t be removed completely, and I answer that that is controversial. Her reply, get this, “No it isn’t. I research endometriosis”

.. Okay BITCH. I’m no stranger to research, and while I may not conduct endometriosis research 1) I DO have a Master’s of Science in Reproductive Physiology, so I’m not clueless, and 2) stay as up-to-date as I can on contemporary endometriosis research. And I haven’t seen your name anywhere. And I’ve seen data from surgeons that shows 0 recurrance of the disease that has been properly excised (thank you to all the talented surgeons and researchers who share their data and opinions on EndoMetropolis) AND 3) JUST BECAUSE YOU MAY CONDUCT RESEARCH IN SOMETHING DOESN’T MEAN YOU KNOW EVERYTHING ABOUT IT. I’m a PhD student – I clearly know a thing or two about research. You can’t tell me any researcher knows everything about a particular topic. And anyone who does, I know is full of bullshit.

So I’m FUMING by now. And she looks at me and goes “Well I don’t know what you want me to do, why are you here?”
UM. Because a doctor I trust thinks I have loss too much bone mass for my age, and thinks why should be investigated. Because of the OSTEOPENIA that the referral said.

So she starts talking about how if I go back on letrozole, she’ll have to add back some estrogen. And I tell her, again, that I won’t be going back on the letrozole because my insurance doesn’t cover it (I think I told her that at least 4 times).

…

She repeats “Well I don’t know what you want me to do.”

ARE YOU FUCKING KIDDING ME?!?!

So she finally agrees to check my parathyroid hormone (PTH) levels, since my thyroid panel was just checked and came back normal. And “your thyroid or parathyroid hormone usually are the cause of bone density loss, I’ll run the PTH but I think it will come back normal. So if you go back on letrozole to control your endometriosis I’ll have to put you on some estrogen and progestrone too.”

o.O

What great listening skills she has.

THEN, to top it all off, she asks me and A (he drove me, because he’s the best and the appointment was an hour away) if we’re planning on having kids anytime soon. No, not until we’re out of grad school. So she’s like “well, you’ll need some birth control pills.”  … So I laugh. I literally laugh. And tell her that won’t be a problem. We don’t have intercourse. And I look to A for back up, and he collaborates that we’ve had sex once in the past year. And Dr. E-H goes “well it only takes once.”
…

Yes, I know. I have a Master’s of Reproductive Physiology. I literally MADE BABIES during my master’s (cow embryos anyway). AND, OH YEAH. THERE ARE THESE THINGS CALLED CONDOMS. I don’t need to be on pills to have safe sex.

I mean, talk about pushing hormones. Damn.

I left so mad. When I seem my PCP again I will tell her I will NEVER go back to Dr. E-H. And if she is really concerned about why my bone density 80% of age matched peers, then she’ll need to send me to see someone else – maybe a regular endocrinologist would be a better approach.

Oh, and I looked up Dr. E-H’s publications. She has 8 publications total, and only 1 of those is related to endometriosis. The entire publication is 1 page long, and the study is incredibly poorly designed. Like the kind of publication I’d tear into during a journal club meeting, and throw out completely if doing a literature review. … And she says she researches endometriosis. Apparently not well …

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.

Damn it Medco

My insurance requires that I use an online pharmacy for any continuing prescriptions. When I met with Dr. Y, he had to put an order in through Medco ExpressScripts (my required online pharmacy) for the new pills (the aromatase inhibitor, and progesterone).I’m supposed to take the pills for 6 weeks and then return for an exam. I already schedule this exam- on the day met with Dr. Y, and cannot reschedule because they had to make some special accommodations for the timing- since I am traveling “long-distance.” Usually it takes Medco about a week to process and ship the pills- which isn’t bad. That would have put me at just under 6 weeks on the new pills- which is fine. The pills were supposed to ship today, so I logged into the Medco system to check on them, and apparently now they aren’t shipping until the 12th. What the hell?! That’s going to put me a whole lot closer to 4 weeks on the new pills than I want to be- IF they ship on the 12th AND get here within in 2-3 days.

Is it really that hard to fill a prescription? What I if absolutely needed these pills, now. I love my insurance for most things, but they way they handle prescriptions really sucks. If you are going to take forever to fill and ship script, then let me at least pick up some at a local pharmacy in the mean time!

Just give me my medicine, damn-it.