Patient Portal Archives • Page 2 of 2 • Disabled Dad

Bad days always end at midnight

August 16, 2018

Just a crap-ass day. Nothing all that specific, a couple of highlights here and there, but generally, a real crap-ass day. I want to be healthy and I want to have other things to worry about.

As I try to figure out what bothers me most, I get more bothered! Yes, ultimately the fact that I have cancer and the outcome being unknown sucks and bothers me. But actually I can deal with that as well as one can.

The question comes up, am I doing all I can for myself? I think so, but am I? Am I letting myself down?

I looked up my doctors on the Internet when all this started. The surgeon is a good as it gets, period. The oncologist and radiologist are both very highly regarded as well. The group, I am told, does more colorectal care and surgery than any other team in this big city, and that is saying a lot. So, mostly by luck and default, I have no worries or concerns about the doctors.

As we know, I have big concerns about the support staff and find myself doing some research to understand the protocols and make sure I am following the right set of instructions (the pill bottle? the oral instructions? the written instructions?).

My ex-wife has a friend, Sue. Sue is highly educated and a very nice woman but she does not appear to have a lot of “life smarts” or maybe common sense. She would do things that would drive me crazy. I knew of the things from my wife and never ever would say anything to Sue but would shake my head. A couple of times I found myself in situations where I, personally, was not sure exactly what to do. I learned to think of it this way … the Sue Test.

What would I say if this was Sue?

For instance, if I went to a restaurant that I really wanted to try, but for whatever reason it looked dirty to me or just “off” and I was not sure if I should sit and eat or just leave …

How would I react if I was told that Sue sat there and ate?

It is my mental way of looking at my own situation from the outside and putting my own values on it. I found it helpful and no, it is not mean to Sue. And in that scenario, if she had her young boy with her, I would think she was crazy.

What would I say if Sue was having these issues with her hospital care?

When you use a browser to surf the ‘net a good amount of information is actually sent to the web site itself. Your browser (Chrome, Safari, Firefox, etc.) tells the web site, among other things, who your Internet service provider (ISP) is (e.g., Verizon, Comcast, Rogers, AT&T, Cox, etc.). Some of the information is very useful, like the size of the screen the user is using. As a web designer I use this to modify the page sent to that user to look best on their size screen.

Some larger organizations have their own in-house ISP. This is true for many government agencies, universities, and hospitals or medical organizations. Because of this, I know that someone (or several people) from my hospital do at times look at this blog. But there is something much more interesting …

A couple of other medical centers have also looked in the last few days. They are using the “topics” picker on the top of the right hand side and looking at the Patient Portal archive page among others! There have also been hits from two government agencies. More interest from other medical providers than mine.

As predicted, I have not heard from the Director of Strategic Initiatives again about the Patient Portal. I am shocked! Ok, no, I’m not.

I needed to use the portal again. What’s that you say? Am I a masochist? A glutton for punishment? No, just a poor schmuck with a fucking cancerous tumor up my ass.

I know I need to see the wound nurse to figure out the best placement for the ostomy and that may take up to an hour. Then I need to sit on my ass for an hour for a 5 minute Pat-preadmission testing appointment. At least it is not a Mary-preadmission appointment; my name sure ain’t Pat. A 5 minute appointment? Really? A sobriety test takes longer than that (so I am told).

Where do I take the enema? (kidding) (I hope)

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“Sometimes you have to look reality in the eye, and deny it.” ~Garrison Keillor

August 23, 2018August 23, 2018

I was all set to write an uplifting, positive post … and then I got an email. “The clinic note from yesterday’s doctor visit is available in the patient portal.”

If you remember (and even if you don’t) I needed to change doctors, etc. because of a change in insurance. I have a new primary doctor and mainly interact with his fellow. For now this is fine, the fellow is a young guy, very nice, knowledgeable, etc. This was my second time seeing him and he obviously reviewed my record. And just to be prepared, I brought along some of the paperwork on the needed preparation for surgery.

To see his notes I needed to sign into the patient portal, so I braced for it, and yes, it is still there …

Whatever happens, do not let the patient forget that they have the NUMBER 2 KILLER growing in their butt!

I then find the clinical note (the instructions in the email on what to click on to see it are wrong; are you as shocked as I am?). Here is the first part of it I would like to share:

As stated at the end, I am taking duloxetine as it is effective for peripheral neuropathy and depression. I have managed any depression without meds but with the added stress of having rectal cancer, well, this helps.

During the visit I guess I may have mentioned my “frustration” with the hospital’s healthcare system. I may have shown him the paperwork I received. I may have been a bit cranky. But I did specifically ask him about this:

and this

And as he so eloquently documented for posterity in his note:

The prescription instructions have confusing instructions for each medication. We did our best to decipher them.

And he’s a doctor! Yes, we did our best … and failed. He promised to contact the surgeon’s office and ask “what the fuck?” … well, that is my interpretation.

Then I scrolled down to see what else is in my clinic note. Oooh, social history! Being the social animal that I am …

I realize that I am cranky, curmudgeonly, expect people to be competent in their jobs, and just an all around nice guy but that aside, some of these items are a tad problematic.

“Tobacco use: Never smoker” That is absolutely correct. I was asked if I ever smoked and I said “never” and he notated “never.”

Yet, when asked “Do you have multiple sex partners?” I responded “no” yet the notation is “denies.”

When asked if I use “recreational drugs” and I said “never,” once again the notation is “denies.”

What does Google have to say about this?

And yes, I get it, deny can also mean declare untrue but its connotation, as shown by being the primary definition here, is more of refusing to admit.

“Sexual activity: Present” I was not asked about “sexual activity” and am perplexed by the notation of “Present.” Does that mean I have sexual activity with the present I was given (a few years ago, there was this gag gift from a couple of women friends … but I digress)? Or does it mean that I was having sexual activity in the place where I was present? And / or having it at the present time, in the present place, with the present I happen to keep in the car?

By now some of you are screaming at the computer screen wondering why I am avoiding the “Sexual orientation: Female” item. The best I can figure is that yes, I am sexually oriented towards females. Or yes, I prefer female orientals to males (don’t go all “inappropriate-wording” on me, they wrote it, not me). Maybe during the physical exam he noticed the pink lace man-thong I was wearing and got confused. And no, I was not wearing a pink lace man-thong.

It was in the wash.

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“If I’m not back in five minutes… just wait longer.” ~Ace Ventura

August 26, 2018

Before I get to the actual post, I want to make something clear. This blog is anonymous because I don’t want to hesitate to say things and, it turns out, I don’t want to besmirch others. I have been very outspoken here about the hospital and its faults. I am a true believer in not bitching about something if you don’t do anything about it. For instance, don’t complain about a headache until you discover the aspirin or Tylenol does not work. To be clear, the hospital has been told about this blog and notified that it is their hospital. Patient relations has read the blog, several doctors know about it, and I found out today several members of the board have been told about it. So if I repeat a complaint, it is not that I am just complaining, inherent in the mention of the issues is the fact that the issue is known to the hospital and yet it persists.

I got a call last week from the hospital, a nurse asking to speak to “Jessica” someone. I said “There is no Jessica here, but I am a patient.” She checked her computer and mumbled something about the screen scrolling after she dialed, found my name and then continued (after a mumbled apology).

This is about your pre-admission appointment next week. If we go through some questions it will shorten the appointment, do you have some time now?

I said yes and she went through a standard questionare about history, medications, etc. Then she “confirmed” my appointment for next week.

I was told that the pre-admission appointment would be only by telephone.

No. We don’t do that.

I was told at the cerberus II appointment that the pre-admission stuff would be via telephone only. I can prove it, I have it in writing:

This morning I got an email telling me to check the patient portal about an upcoming appointment. Oh joy, my favorite web site. So today, August 26, 2018 I bring it up.

WHOA … wait a freaking minute. What is that on the upper right? I have the “#2 killer” … oh my god, I forgot that I may die. Thank you patient portal!

And my nurse practitioner is out until August 12. Good to know even if that was over a week ago and she is back. But then Dr. Pye is out until 2027. Still. Why is there not a canned “vacation notice” that the computer automatically keeps track of the end date, verifies it, and removes the message as appropriate? Nah, too easy.

The portal says I have a 10 AM appointment with the “wound/ostomy nurse” … a scary title. I am told that she will work with me to find a spot for the ostomy … I pick her belly, not mine. They say the appointment will be 45 – 60 minutes. I then do nothing for over an hour and have the “pat-preadmission testing” appointment.

The portal also tells me this:

If, in fact, I did not have the nurse appointment at 10 AM, I would be driving into the big city for a five minute appointment? Parking alone will cost me $10 no matter what. This is insane.

All I can say is that this better be a very well-used, important five minutes and not a waste of my time, or theirs. And if the nurse hands me an enema, I am not sure that colorectal cancer will still be the number 2 killer …

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