Why are some chronically ill patients so intense?

Inspiration: Bruce Banner rips his shirt to become the Incredible Hulk in the TV cartoon
not my image: click picture for photo credit


While the Infectious Disease doctor didn’t have any “ah-ha” moments and definitely hadn’t looked over my files ahead of time (her staff’s fault for scheduling me as a patient with an acute need, not her fault), she did order a test I haven’t had before called a Gallium Scan. Here is how things proceeded…

Tuesday 2/25
Doctor: We can order a Gallium Scan. It won’t show us what is wrong, but sometimes it can identify areas of inflammation and infection so we can take a closer look. You will be injected with gallium and then the scan will take place after 24 and 48 hours. If there’s something serious going on, it should show. I will leave it up to you if you want me to order this test.
Me: I say we go for it.
Doctor: Alright, you can get it done at your local hospital. I will have my nurse phone it in.

As I leave exam room….
Doctor: I will have the nurse call order this. If there are any abnormalities, I will call you, otherwise assume it was all clear.
I watch the doctor hand the chart to nurse, explaining something (to order the test I am guessing), and think to myself the doctor is insane if she thinks I am going to not want to read the full test report.

Wednesday 2/26
I am quite ill because I had a doctor appointment out of town on both Monday and Tuesday. I am expecting to hear from the hospital scheduling department. I think about phoning them. I consider the fact I want to be “flaring” at the time of the Gallium Scan. I think maybe I should call today in case the test can be scheduled in the very near future. I’m already in a flare, I could just draw it out by not resting. I do not feel up to it and figure one day won’t make a difference anyway

Thursday 2/27
It is the afternoon (48 hours since doctor visit) and I still haven’t heard from the hospital scheduling department. This isn’t all that unusual; all hospitals do things differently (I should know!). I decide to give them a call to make the appointment. I look up my doctor’s office information (phone and fax) to have on hand in case there are any problems with the order. I don’t want to have to hang up and call back. I hope to myself a Gallium Scan isn’t an uncommon test that will confuse the scheduler. I call and leave a message because no one answers. I don’t hear anything back, so I call again in late afternoon and get someone.)

Scheduler (a pleasant sounding older woman): Scheduling, how can I help you?
Me: My doctor ordered a test in nuclear medicine. I am calling to schedule it.
Scheduler: Name and date of birth?
Me: **gives info**
Scheduler: Hmm… When did your doctor’s office send it?
Me: It should have been sent Tuesday.
Scheduler: Oh!
Me: Yeah…
Scheduler: Let me check the fax..
Me: I appreciate it.
*wait*
Scheduler: We don’t have anything here for you. I’d call your doctor’s office and make sure they sent it and sent it to the correct hospital.
Me: Alright, thank you for your help. (Tip: ALWAYS remain pleasant to everyone, it will make them more likely to want to help you. You can advocate without getting nasty.)

After hanging up, I curse myself for not asking for their fax information before hanging up, but don’t want to call back since, based on my experience thus far, there’s a 50/50 chance of getting a person. I Google the phone number and decide the nurse at the office can call and get it for herself if needed.

Receptionist: Hello, Infectious Disease Doctor’s office! How may I help you?
Me: Hi, my name is Jackie and I was in the office Tuesday. The doctor said she was having the nurse order a scan, but my hospital hasn’t received an order.
Receptionist: Oh, alright. **Proceeds through the normal questions.** Can you spell your name for me?/Date of birth?/Which doctor did you see?
Receptionist: I will leave this message with the nurse and she will get back to you.
Me: Thank you, I appreciate it.

I don’t hear back from anyone.

Friday 2/28
I am harboring a secret hope the doctor looked over my file in more detail after I left (she said she was going to do this and I am confident she did), something sparked a thought in her, and that is the reason my test hasn’t been ordered. She knows what we need to do and the test is unnecessary. I know this is unlikely, but a girl can dream! I know what is likely: the nurse didn’t order the test, so I call.

Receptionist: Hello, Infectious Disease Doctor’s office! How may I help you?
Me: Hi, my name is Jackie. I was in the office Tuesday. The doctor said she was having the nurse order a scan, but my hospital hasn’t received an order. I called about this yesterday and left a message for the nurse, but I have not heard anything back. (Tip: Receptionists usually aren’t in charge of sending out test orders, but they are your gateway to contacting nurses/doctors and “squeezing” you in when you really need an appointment. Befriend them, or at the very least, don’t alienate them because of the mistake of someone else.)
Receptionist: **vindictive tone** Well! We will leave her another message reminding her to get back to you. Can you give me all of your information again? Her vindicated tone directed toward the nurse makes me smile. I wonder if this particular nurse tries the receptionist’s patience. I rattle off all of my information again.
Receptionist: I will make sure she gets the message again so she can get back to you.
Me: I really appreciate it; I’m hoping to get this test ordered today before the weekend. Thank you!

I am extremely annoyed, but the fact the receptionist sounds annoyed too helps.

**Phone Rings**
Me: Hello?
Nurse: Hi this is Nurse with Infectious Disease Doctor’s office.
Me: Hi.
Nurse: So, the receptionist said you had a question about a test being ordered, but there is nothing in your chart about any test being ordered.
Me: Hmm.. Well, she said she was ordering a Gallium Scan and would have a nurse (YOU!!) call it in.
Nurse: Let me look at your chart.
Me: That’d be great.
Didn’t you do that prior to returning my call? How did you know a test wasn’t ordered if you didn’t review my chart? I realize she is either extremely incompetent or buying time. I think about how my Mom said I can be intimidating with healthcare professionals, I realize she is right.
Nurse: She wasn’t ordering you a Gallium Scan, she was recommending your doctor order it. We sent a review of the appointment to Dr. T
Me: Well, that is my cardio electrophysiologist, so it wouldn’t make sense for him to order a Gallium Scan.
Nurse: **sighs** Uhhh…. let me look here…..
Me: She said she would review the test and if anything abnormal showed up, she would call me. I don’t know why she would say that if she wasn’t ordering it. Also, like I said, as I left she said she’d have a nurse order it… which makes me think she was planning on ordering the test. (Tip: You could say what I just said sarcastically, or you could say it in a tone you use with a child when you are patiently guiding her toward an answer. Unless you possess superhuman restraint, or are a yeller, you have to choose one or the other. I choose the “guiding the child” tone.)
Nurse: **annoyed tone** Look. Let me talk to the doctor and call you back.
Me: I’d appreciate it! Thank you.
Nurse: Yep. Bye.

**Phone Rings** (hour later)
Me: Hello?
Nurse: **really friendly tone** Hi! This is Nurse! It turns out I misread your chart. She did want the test Gallium Scan ordered from our office.
Me: Alright.
Nurse: So I will go ahead and send that over. Most hospitals will call you once they get an order, but if they don’t call you, give them a call around 4:30 to catch them before they leave for the weekend…. I think most hospital scheduling departments leave at five, maybe check on that?
Me: Okay, thank you. I am sure I sound so like, “HA!!YOU WERE WRONG! I TOLD YOU!!!”
Nurse: Is there anything else I can help you with or that may have been overlooked? Yes, her clear sucking up is making me smile.
Me: Nope. I just needed the test ordered. Have a nice day.
Nurse: You too! Bye.

At 4:30, I call the hospital. Unfortunately, the desk closes at 4:30, but luckily they are there half the day on Saturdays so I can call tomorrow. I really want to get this scheduled so I will know if I should continue resting to recover from my flare, or if I should let up on the resting for the test. I leave a message with my name, date of birth, and the test I need to schedule.

Saturday 3/1
It is afternoon and I haven’t gotten a call, so I call the hospital.

Scheduler (not my friend from the other day): Scheduling.
Me: My doctor order a test in nuclear medicine. I am calling to schedule it.
Proceed to go through drill of giving all my information.
Scheduler: I’m not sure how to order this test and the nuclear medicine staff doesn’t work weekends. I will call them first thing Monday morning and call you to get this scheduled.
Me: Alright, thank you!

ARRRGHHH!!!!

Sunday 3/2
It’s the first day since my appointments last week I don’t have a fever within a few hours of waking up. I am happy about this, but I am concerned if I should rest one more day to feel even better, or do something to wear myself out for the testing now that I’m not at risk of collapsing. Hmm…

Monday 3/3
I call scheduling around 10 AM (they get in at 7:30) and leave a message, including the name of the person I spoke with Saturday. The same woman called me back in about an hour.
Scheduler: Hi this is Scheduler from the hospital. Your doctor has ordered a test for you.
Me: Okay. (Tip: Don’t expect everyone to remember you. All this woman does all day is schedule people. For all I know, she called nuclear medicine and just is opting out on rehashing our conversation on Saturday. It really doesn’t matter if she remembers me.)
Scheduler: Would you like to schedule that right now?
Me: Yes, I would.
Scheduler: Alright, let’s see here… Would this week work, or are you thinking next week?
Me: This week would work.
Scheduler: Let’s see… I have a Wednesday morning at 8:30. You’d get injected at 8:30 and then you’ll come back at 1:30 for pictures.
Me: Wednesday will work, but my doctor said the scan wouldn’t be done until 24 hours later. I leave out how I’ve looked up all the details of Gallium Testing for Fevers of Unknown Origin and it would never be performed 5 hours after the injection.
Scheduler: **adopts the “guide the child” tone** Right, you get injected then come back later for pictures.
Me: …. but a full day later or the same day?
Scheduler: The same day.
Me: Hmmm…..
Scheduler: I have the test orders here in the computer and the computer says you come back at 1:30 if you get injected at 8:30. Well if the computer says it, it can’t be wrong!
Me: Could I talk to someone in Nuclear Medicine just to make sure this is being ordered right? I don’t want to do it wrong then have to repeat it. (Tip: Don’t say you want to talk to the expert because you know the person you are talking to is wrong. Say you want to talk to the expert in order to reassure yourself.)
Scheduler: **adopts petulant teenager tone** Alright. I’ll transfer you down to them.

Nuclear Medicine Guy (NMG): Yeah?
I realize he probably isn’t expecting a patient on the other end of the line.
Me: Hi, I was just scheduling a Gallium Scan for chronic fever with the scheduling desk. She was saying I’d come in the same day as the injection for the scan, but my doctor said it would take at least 24 hours for any areas of infection to uptake the Gallium and show up….
NMG: **groans** No, she’s ordering it wrong. You come in and get the injection and then come in the following day and the day after that. (His emphasis isn’t directed at me, he’s just explaining.)
Me: Yeah, she has me coming in 8:30 for an injection then 1:30 the same day for a scan.
He says this in a “how annoying is this situation” tone — I found out later everyone’s frustration is probably over their new computer system that still has some kinks that need worked out.
NMG: She’s using the wrong code. The order is for infection and inflammation. I will call and give her the exact code. We don’t do the scan on the same day.
Jake (sitting next to me) looks at me funny. He is is watching me smile at how RIGHT I was.
Me: Alright.
NMG: When did she have you scheduled?
Me: She said Wednesday at 8:30 was open.
NMG:You aren’t on my schedule.
Me: I thought she was ordering the test wrong so I asked to me transferred to your department.
NMG: Okay…
Me: We can do a different day if that doesn’t work. It’s okay.
NMG: No, no. I will call her and give her instructions.
Me: Thank you so much! I really appreciate your help. Could you ask her to call me back so I can confirm everything?
NMG: Yes. Takes all my information.

An hour and a half passes. I call the hospital. I’m considering the irony of my last blog post on how sometimes, everyone does what they need to.

Scheduler: Scheduling, how may I help you? (Yay, it the older lady with the pleasant voice/tone!)
Me: Hi, I called earlier to schedule a test. I ended up being transferred to nuclear medicine to clarify how the test should be ordered. The nuclear medicine guy said he would call back the scheduler and explain how to schedule it. I’m not sure if my original appointment time was scheduled or if I still need to make an appointment..?
Scheduler: Hmm, let’s see here. Takes all my information.
Scheduler: I’m not seeing anything scheduled. I will get in touch with them and find out how they want the test ordered. Sometimes the nuclear medicine staff are in testing and can’t talk to us. It’s not that we aren’t calling you back.
Me: Alright, I appreciate it.. thank you.
I am hoping NMG didn’t forget about me. I decide he was probably in the middle of a test he had to get back to when we were talking and he is taking care of the patient right now.

**Phone Rings** (15 minutes later)
Scheduler: Hi, this is scheduler again. (Still the nice lady)
Me: Hi!
Scheduler: So NMG went ahead and scheduled you. They have you down as coming in Wednesday morning at 10 for the injection and Thursday at 10 for the scan.
Me: Alright, sounds great.
Scheduler: Are you familiar with our hospital and having procedures performed her?
Me: Oh yes.
Scheduler: Alright, just to remind you, registration is across from the cafeteria and you need to stop there prior to your appointment in nuclear medicine. I don’t expect her to know my history with the hospital, but I find it humorous she is telling me this because I have to go there fairly often.
Me: Okay, sounds good. Thank you!

Why are some chronically ill patients so intense?

44 thoughts on “Why are some chronically ill patients so intense?

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    1. It was so unnecessarily difficult almost every step of the way that I just had to laugh. The only other viable alternative was bombing the local hospital. I went with laughing.

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  1. I’ve found we have to be that way, just think if you didn’t make that phone call you’d still be waiting a week later to even schedule the test. Also, I always think maybe this one last test will finally be the magic puzzle piece and they will figure everything out, so I’m always anxious to get it scheduled bc I’m hopeful for the results. Good luck hopefully it points something out. Hugs!!

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    1. I always think the same thing. Sometimes my efforts give me a big puzzle piece and sometimes they give me nothing, but at least no matter what I can check another thing off of the list.

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  2. Seriously – I don’t know how passive people get things done properly. Good job on staying with it and managing not to get nasty with anyone. Had you not researched the whole test would have been a waste and it wouldn’t have been anyone’s fault.

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  3. It is a good thing you took matters into your own hands and did your homework. I have had gallium scans done and white blood cell scans done. What a nightmare of getting back and forth. My white blood cell scan was done at a hospital an hour away.

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    1. That does sound like a nightmare! I will be sure to appreciate the fact I just have to drive 8 minutes to get to my scan and I can come back home afterwards. I had never even heard of a Gallium Scan which surprised me once I learned more about it. Kudos to the infectious disease doctor for offering it. 😊

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    1. It’s ridiculous! It makes me feel sad for people who haven’t been taught or don’t know to advocate for themselves. Some people don’t know it is not a good idea to assume the doctors or people on the other end of the phone have everything under control.

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  4. Unfortunately, a lot of nurses have attitudes, but in their defense, a lot are over worked. I learned that the best way to get anything done is in writing. If someone is messing up, I send a fax to the doctor. A lot of people will see that fax before it gets to him, and the ones that messed up will usually fix it before it gets to the doctor. If there is no response, I send a second fax with a huge SECOND REQUEST emblazed on the top. That always works. There a simple thing I live by, “If it is not written, it does not exist”. If you call, there is no way to really prove that you spoke to anyone. A fax with names, dates and details always works. I also get into the habit of getting my doctor’s direct email. If they don’t want to give me, I get another doctor. It’s not a free service and too many people in the medical field think they are in charge, when it is the patient that is in charge. I am always courteous, but that is no help a lot of the time.

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    1. You’re very right on how we easily forget that we are paying for a service! I agree in writing is a good way to get things done if you want to make sure there is a record.

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  5. i have worked in the medical profession for more years than i want to admit:) there is no excuse for what i see happening now. we were just as busy and over worked as they are now. as a supervisor i made every effort to create an environment that encouraged taking the time to work with patients and their families in the most supportive way possible.

    you are however very clever to have learned how to deal with people who take their limited authority too serious! bravo dear girl for getting what you need without making any enemies. you could be a diplomat:)

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    1. I think it takes a great supervisor to create an excellent nursing staff. I don’t think they intend to make my life more difficult or they went into work that day thinking, “I am going to NOT help people today.” It just happens and isn’t deemed unacceptable by most of their supervisor/peers, so, unless the nurse is intrinsically motivated, subpar becomes the norm and we become the “difficult” patients. When I’ve been at centers where being courteous, respectful, and accurate are demanded by the center, it happens!

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      1. while i agree that most do not wake up and think they are going to deliberately make someone’s life difficult, i do believe there are those who are so unhappy in their own life that they can’t help but share that unhappiness with other’s. while working with the dept of family and children services i saw/heard on a daily basis workers who bragged about denying benefits to people. many would not return calls for days if ever, most would not walk to the front and talk to someone who had a question.

        i was relieved when my job on the forensic unit started. my time at dfcs was one of the few times i have not been the sup and you can bet when i transferred my staff knew i would not tolerate that kind of behavior.

        you are a rock star my friend and deserve the best possible treatment.

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  6. FULL. TIME. JOB. I want to run the world with you and a few other competent people I know. This is my biggest frustration. I started a post about a year ago about mistakes that had been made, but, it got so ludicrously long, I realised this was ALWAYS going to happen and I couldn’t continue to think about it. I’m reposting this!!

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  7. Wow Kid,what an ordeal! I’m proud of you for keepin your cool and not bombing the hospital 🙂 you, your mom, and aunt Cathy should start a patient advocacy center! It’s been my experience that most people have no idea that they need to be on top of all the stuff that goes on in hospital. I’ve learned so much from the three of you!

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    1. Hey, I love the name and pic! I haven’t met this “moody” Jepsen though. Haha.

      As long as you got us three, you’re covered! It is like someone trying to be lazy about a car repair on your watch — not happening.

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  8. Definitely a full time job that we don’t get paid for. If you need anything the next couple days let me know. Ride, groceries or just to talk….you know my number. Good luck with your test!

    P.S. The people on the other end of the line are even more “fun” to deal with when you have Medicaid. My boyfriend also thinks I am intense when I deal with medical phone calls!

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      1. You’re welcome 🙂

        And yes, most of them leave us no choice. I’ve run into the issue again where it seems the docs are “comfortable” with just medicating me to cover up symptoms (which apparently is not working) and that they’ve lost their drive to find the root. I know there is another issue on top of the Lyme. Been doing all the research I can to prepare for my appointments at the end of the month with the Infectious Disease and Cardiologist. Hard to be my own advocate when I have little to no energy on a daily basis. I have a bad habit of only complaining about what symptom is horrible that day versus my daily health issues. My awesome beau is helping me become more vocal and your knowledge helps as well.

        One day we will get answers and feel better!

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  9. THIS. DRIVES. ME. CRAZY. I got the same run-around with my flu shot this year from my obstetrician’s office, who was out of town. I try very hard not to pull the “doctor ticket,” but I finally had to. If physician’s actually knew what a run-around patient’s get, they’d understand non-compliance and frustration a lot better. Sorry that anyone has to go through this. It’s absurd. Glad you got it all straightened out!

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    1. You had to go through an effort to get a flu shot!?! I feel like I’m constantly being asked if I’d like one.

      Oh, and you went to school for too long to feel any guilt pulling the, “I’m a doctor” card! You are sweet for not pulling it more often. I’d be pulling that bad boy left and right. Haha

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  10. Thank you for sharing! I am not sure what you have, but hope you are on the mend soon or al least feeling better. After the birth of my son, I was very ill. Had an Endocrynologist, Nephrologist, Infectious Disease, OB, GYno….all seeing me daily. After I was released from ICU, off Dialysis and weeks later out of the hospital….scheduling, office staff, testing, blood work, MRI’s, Ultrasounds……all an extra stress. It was a crap shoot every time I called the office to see if I was going to get a nice or bitchy person on the phone. Being ill and dealing with all of this extra crapp is a lot. You are handling it like a champ:)

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  11. I had an ID doc tell me to tell my primary care to order the Gallium test for my Fever Of Unknown Origin over two years ago. my primary (correctly) said “how is your fever my business and not his?”
    I’ve had four surgeries since, ALL with me running a fever bc that doc said “I don’t order tests.” Since him I’ve seen 3 other ID docs and I mentioned to the 2nd one that Dr. x wanted a gallium scan done. he said “then go back to Dr.x!” Dr.#3 attempted a sexual assault. #4 said “you’re complicated.” No the scan has never happened. yes I’m still sick but have given up…so many wasted appts. with all the worsening of symptoms for a week after each one.

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    1. Rose, that is ridiculous and awful! I can empathize with wasting energy on a doctor appointment that isn’t productive. If the appointment is productive, or even neutral, it doesn’t feel like a loss, but if is a bad appointment, it is the worst feeling that I wasted my energy on it.

      Are you in an area where finding a new primary doctor isn’t an option? My primary would have been willing to order this testing, I just didn’t feel it was her job since it wasn’t her area of expertise. Do you go in with a written list of symptoms?

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    1. Thank you! 🙂 It’s all too common of an occurrence and makes me worry for patients who are unable or not informed enough to advocate for themselves.

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      1. I couldn’t agree with you more. 😦 I need to come back to your post every so often because when I’m in this situation (many, many, times) I sometimes struggle with the SERENITY NOW and want to throw some people out a window sometimes!

        🙂

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        1. I actually do the same!

          Also, I have a list of names of people who go above and beyond or people who do horrifically bad and who I could even probably sue for negligence, although I wouldn’t. They all will get letters one day letting them know what I thought of my experience with them.

          I know it’s kind of creepy I have lists, but I do! I feel like encouraging the good ones will keep them good. I feel like letting the bad ones knows what the could have done different (and mailing a copy of my letter to their hospital/center board) encourages/forces them to try and be better. My Mom wrote a letter on my behalf once and a doctor had to go before the whole hospital board and explain her actions! The doctor who I mailed a thank you card to was so appreciative and is even more helpful now than before.

          I think I may do a part 2 of communications with the infectious disease office because there were even more situations after the test! I don’t think they’re on my “list” (lol) but pretty horrible. The nuclear medicine department themselves at my local hospital did fantastic and the tech is definitely on my list of “you’re awesome” letters to write.

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