2 weeks ago, my WBC was trending downward. When I met with Kaufman, I made it clear to her that the antibiotics do not seem to be helping me. Normally with IV medications, roughly by the 2nd day, you start to feel some level of relief.
That wasn’t the case. Between the tough IV Meropenem schedule, every 8 hours, sleep started to take a big hit. 5-6 hours of sleep per night is absolutely not enough. The IV Daptomycin was easier since it was once a day.
By day 8, nothing has changed. I’m not feeling any better than before I started it. So I told Kaufman to discontinue them. My labs at that time were 15.8 for WBC. So I got up, went to infusion, and had blood drawn thinking that it’s just going to be the same, or worse.
Again to my surprise, those labs resulted with my WBC going down to 13.5. Maybe there is progress. So I called the front desk the minute I got the results and told them to talk to Kaufman. To keep me on them. It’s clearly doing something based off of the factual data. So they called me back, thankfully the medications were still there from yesterday.
The nurse accessed my port (correctly) this time, and I was on my way out.
As the week progressed. I didn’t feel better. But again, all I could do is wait for this weeks blood draw. To see if I am still continuing down. Maybe we might be onto something. As I finished my last antibiotics, I met with Dr Kaufman first, which that appointment took over 40 minutes to happen. After our discussion, she wanted me off the IV. I said fine. Let’s see what the labs say, and go from there.
I moved to the lab room, and sat in the chair for over 30 minutes. Nobody came. I needed to get back to work. Previously I’ve done labs there with them, with no problems. It’s not hard. Alcohol pad the port hub, 15 seconds. Push 10mL of saline in, then draw back 10mL of blood, what’s known as wasting. Makes the labs accurate. Again to re-iterate, they’ve let me do this myself. I’m fully capable of helping. I do my own labs at home when I do IVIg infusions.
So all of the materials were on the table. My name on the tubes. Vacutainer, the 2 tubes. Nurse is nowhere to be seen. So I drew them. Simple thing right? No problems since they’ve let me do this before, most of the time being thanked for helping them because they were so behind.
This is how that day was at their office. Whatever. I need to get back to work.
3 months ago when I was on Vancomycin, I had to do weekly troughs, but the troughs weren’t done at the right time. So I offered to them that I could draw it at home, I live 10 minutes away from LabCorp, just print my labs and give me the collection bag, the tube, a vacutainer, and the orders. All I do is take the draw at home. Drive to LabCorp. And simply just do a specimin drop off. Again they had no issue with me doing this. This was on 11/15/2023. I also had the usual labs drawn on that day, which was done in their office.
I had IVIg done later that day, and my home IVIg nurse pulled labs as well prior to the start of my infusion. I told her hat labs were already drawn, but we might as well pull them again. You can clearly see within 2 hours, it’s slowly creeping up.
Rewinding back to the weeks before my heart attack, after Dr. Kaufman pulled me off all antibiotics, and placed me on Voriconazole 4 weeks prior to my heart attack. Because the fungal cultures finally resulted with the family of mold, but not the actual strain. So preemptively, Kaufman puts me on that to “get ahead of it”.
So going forward again, on the 20th of November. It’s been 4 days since my labs resulted. I get immediate notifications when labs result. I would’ve expected a call on the 16th, or 17th, I was never called by Kaufmans office. Or anyone. which was when I started to get concerned that nobody over there is really paying attention to me anymore. So after a horrid weekend, with my symptoms really just getting worse overall, I decided to take action. Based off of the labs they drew, and the labs that were drawn by my infusion nurse 2 hours apart, I’m stating to get concerned that nobody over there is paying attention.
So I download and emailed my lab results over to Infectious Disease, who was always responsive via email. The strange part is, when I sent the email, it was during their regular business hours.
Again. These are labs they drew. In office. But didn’t care about my concerns.
Which isn’t normal for them to not respond, as they have always been responsive. After a few hours passed, around 4:40pm, I called and left a voicemail, and got no response to that voicemail.
I called them the next day, and Samantha picks up the phone. I told her that I had emailed in labs, and asked if she would make sure that either Dr. Kaufman or Rebecca would please take a look at it, and get back with me on a game plan. I told her that the same labs I had drawn about 2 hours later, showed the WBC going up.
The only call I got, was on the 17th by Carly, expressing her concern that my labs are getting concerning. I told Carly that I had left messages for infectious disease, via email, and phone but haven’t heard back from them yet. I said, maybe they will call me later today. I never received a call back from infectious disease that week …..
I found out later from a very credible source that this email, was DELETED by Samantha.
I was notified that my lab results finalized with PSL’s pathology lab that Alternaria Alternata was the mold that was found.
The remaining week, leading up to Nov 27th I was miserable. Night sweats. Fevers going as high as 102F. Body aches. The numbness and tingling getting worse. I attributed all of this to the Voriconazole I started on Nov 2nd. You can go back and read my blog posts since Nov 20th to get a good feel as to what I was going through.
On Nov 27th 2023, the heart attack hits. I told them in the ER, that my WBC’s were rising since Nov 2nd, and that infectious disease didn’t seem to care at all about my labs. Upon admission, they did draw my labs.
When both infectious disease doctors came to visit me in the ICU, I laid into them about one of their office people deleting a lab result I emailed in a week prior to my heart attack. I even called and left a voicemail saying that this lab needs to get in from of Kaufmans eyes.
So the day I draw my own labs labs, at infectious disease after they pulled my off of the IV Meropenem and Daptomycin which was Feb 28th, when the results came in on the 29th, because of how I was ignored previously I called in, Samantha is of course the one who answers the phone. Told her that my WBC has gone up from 15.9 to 16.1. That I’m going he other way. “I’ll get a message over to Dr. Kaufman right away”
I waited a long time to get called back. when I did, it was from the office manager Amanda (weird). She said that I needed to come back in to have my labs redrawn. At this point I didn’t understand what the fuck is going on at this point. She demands that I come into the office within the next hour. So I said ok, let me get over there.
As I walked in, something felt different. The office staff that usually greets me very nicely, became almost forced to acknowledge me. I had a feeling something was up.
So Samantha comes and gets me, but instead of going to the left, where the infusion room is to do labs, she tells me to head back to the office. At this point I have no fucking clue.
As I walk in, Dr. Kaufman is sitting there, while Samantha talked first. They bring up the website of the Flipper. Then began the most humiliating and insulting doctor visit of my life.
About how I brought this into the office during one of my visits on my birthday. Before my appointment, I stopped into Microcenter to get a memory card for it, then headed to my appointment. I just left it in my sling bag and went into my appointment. The nurse at the time didn’t have the right needle for my port, so I brought in my own needle from home. The one I know works. The ones they have don’t work.
So I unzipped my bag and pulled out the plastic container I kept my emergency needle in, in the event I needed to use it. As I pulled the container out of the bag, the flipper fell out onto the chair. It was off just for the record. I handed the Huber needle to the nurse, and she said “oh something fell out of your bag”. I looked and thought “shit”. I put it back in the bag. She then asked, what is that, I’ve never seen anything like that before.
I told her briefly what it was and that was it. Still turned off. I told her that it just does annoying things over wireless (which it really does). Full transparency, the flipper cannot make a 2 way connection to anything. It just is either in listen mode, or broadcast mode.
As the conversation went on, her curiosity, she said like what? So I turned it on. Showed her the annoying Bluetooth spam function. Then shut it off. Put it away. I explained to her how wireless is vulnerable in general. Anything out there today is wide open and broadcasting.
So back to my “office visit”. Samantha begins to accuse me of deliberately connecting to the nurses phone without her knowing, when we fill well know that wasn’t the case.
She then began to accuse me that I connected to her phone and “hacked it”, which didn’t happen. She then went on to say that this was unacceptable. In the back of my mind, with Kaufman sitting right there, she then began saying that “oh my phone was hacked too”. “I have sensitive patient data on my phone”. Which by the way the flipper has ABSOLUTELY no capabilities that they are describing #1. I kept telling this myself in my head over and over and over again. So then I said “The device was off for starters”. It wasn’t used beyond showing the nurse the annoying blue thing it can do. Which DOESN’T make a 2 way connection to the device. It just pops up “oh connect to this Apple TV”. It does nothing after that. That’s it. No 2 way connection. Nothing.
I almost wanted to say “You are aware that it’s a major HIPPA violation to have personal patient data on your personal phone”. But I wasn’t going to argue at this point. Clearly this is just a 1 way conversation. It almost felt as though as if I was being reprimanded and accused of things that clearly didn’t happen.
Then that’s when it dawned on me. They are simply using this as an angle to either discharge me from care, or to gaslight/distract attention away as to the fact that for almost what, a year now, they have been unable to get this infection under control.
So after the topic of the flipper was over, then the 2nd reprimand began. Me drawing my own labs. And how it’s against policy … blah blah blah at this point. I’m still in shock and utter disbelief that this is even being talked about, when previously there was absolutely no problem of me doing labs. Now all of a sudden it’s against policy.
I thought to myself at this point I just wanted to get up and walk out. It’s quite clear that haven’t, and never will be focused on the obvious infection I’ve had for years since this significant “instance” occurred. Realistically they are blowing the whole flipper thing out of proportion. Yeah. I should’ve just left it in the car, but I was in a rush to get to the appointment with 0 intention on getting it out.
I also explained to them that, that was the only time it’s been out of my apartment. It sits in a storage case in my desk, and when I’m bored, I play around with it at home. To me it’s just a tool. To them, it was like I carried a loaded gun into the office and started waiving it around.
I then explained that my labs are still high, but Samantha immediately said that since I did the labs, those labs are invalid due to “custody” of lab samples. Which is complete and user nonsense. And that my labs needed to be redrawn due to this.
Whatever. Fine. Whatever I gotta do to get the fuck out of that office asap.
Dr Kaufman did say that I probably drew the labs correctly, which I did, but I said we need to change my port needle as I would expect the next labs to be the same or worse just based on how I was feeling.
The funniest part was when I got up, to go get it changed. Nobody communicates in that office. Sarah the other infusion nurse was there. But I flipped Moses the minute I walked out of there. I was so fucking irritated and outright insulted over what had just happened.
I sat in the chair telling her that we are redrawing my labs, and that we need to swap my port needle. I lifted my shirt halfway off and just sat there. Let her draw labs. I didn’t discuss anything with her out side of simple yes/no replies. After she draws the labs she asks me, “Can you take your dressing off and remove your port needle?” At this point in my head I wanted to just scream. But instead I replied, “nope, I just got yelled at for doing things myself, you’ll just have to do everything for me moving forward”. She didn’t know how to respond because she knew exactly what was going on. Sorry. But I can tell when people are playing stupid.
After my needle was swapped I got up, and left. In the back of my mind as I was leaving, I said to myself “labs are gonna look either the same or worse knowing my history”.
The minute my labs posted I immediately called the office telling them it’s dangerously high. Samantha once again says, “I’ll message Dr Kaufman”
A few minutes afterwards I get an email from Amanda, who was not apart of the conversation yesterday. What’s below in italic is what she wrote, and my response will be bolded.
Subj: recap of our conversation yesterday and plan moving forward – from Dr. Kaufman’s office
Again. She wasn’t present for this “Conversation”
Body of Email:
Hi John. I just wanted to send a quick recap of our conversation yesterday (Again she wasn’t present for this conversation) so we all have this in writing. As discussed, we were informed that you brought a Flipper hacking device into our office on 12/20/2023 and showed it to our infusion nurse. (It’s not a hacking device, and was only shown to her after it fell out of my bag) During that time you mirrored her phone and showed her that you had access to her phone (Absolutely not true. Lie #1). During our conversation yesterday, you indicated that was the only time you’ve brought it in as it was a birthday gift and that you haven’t brought it in since (Correct). We asked that you never bring it in again and you agreed. Dr. Kaufman expressed her concern about the fact that she has brought her cell phone into appointments with you and was concerned about the potential access to her cell phone contents (In no way shape or form can I gain access or did I have access, nor did I attempt to gain access to her cellphone contents. Lie #2). You indicated that wasn’t possible; however, our IT company has said that device can most definitely access cell phone content if Bluetooth is enabled (Lie #3). Dr. Kaufman also addressed your going through our infusion supply drawers while the nurse was out of the room and that it can never happen again (Again, I utilized the supplies that were already sitting out on the table. Lie #4). You agreed and understood her point. She also said you can never draw your own blood again, regardless of capabilities. There are chain of custody requirements with lab specimen, so any of that must be obtained by our staff. You agreed and understood her point.
With the events that have transpired (even though you’ve indicated none of these things will happen again), we are now required to have a written and signed behavioral plan (Good luck with that) in place for whenever you are in our office. This is a requirement not only by our cyber-security insurance policy (Show me the signed copy of me being aware of understanding said policy) but by our malpractice insurance company as well (Again, show me the signed copy of me being aware of understanding said policy) (due to your drawing your own blood and gaining access to needles (Outright absolute lie #5) in the supply drawers). I will state those requirements below so you can review prior to signing the document at your next appointment. (I won’t have any future appointments with your office)
- You will be asked to leave your cell phone at our front desk for the duration of any appointments in our office. (LOL. No)
- You will be with a staff member or provider at all times while present in our office.
- You are not allowed to handle any of our lab or infusion supplies unless explicitly given to you (ex: your infusion medication and associated take-home supplies).
- You are never allowed to draw your own blood or attempt even the most minor of procedures in our office.
We hope you can understand why we now have to have these guidelines in place, given what has transpired. If you have any questions or do not want to sign the plan, please let me know.
So you can see above, they are doing a few things here. Finding ANY reason no matter how insignificant or irrelevant to make it look like I’m a “bad patient” with “behavioral” issues. Which has been the narrative since 2020 with Dr. Eison telling Swedish in-patient staff that I’m “making all this up”.
What about all the delay of care I’ve experienced since then, and CONTINUE to experience. Only when the heart attack happened, all of a sudden I’m now a priority. Fuck me for trying to advocate for the healthcare I’m paying for, and absolutely deserve.
Today was IVIg. Thankfully I was off today. Had I gotten this email while at work, or working from home, this would have literally soured me, and made me bitter for the whole day.
I showed Lisa my infusion nurse the email. Explained to her everything they did prior to the heart attack, and post heart attack. She was absolutely disgusted. Appalled. Said that I should report this email.
I told her that I could report this to DORA, but what’s it going to do. It’s my word vs theirs. Honestly, it’s not worth my time.
We started my saline which takes about an hour to run. 10 minutes into starting it, another phone call from Infectious Disease. It’s Sarah. The infusion nurse. Asked me how I was doing. Was straight to the point “with a WBC of 21, how do you think I feel?” She then said that Kaufman has no treatment plan at this time, and that she’s trying to reach out to Hepworth.
Yes. Surgical intervention is the answer. I’ve been saying it for the past month. Since the result of the WBC scan. But what do I know.
Right after that call, I emailed the front desk to cancel all remaining appointments with infectious disease, since there is no further treatment plan.
Done and done. I will not be replying to Amanda’s lie-filled emails, I never got it. Dunno what happened. Nor will there be any appointments anymore at that office. Nor will I sign anything acknowledging this false narrative they are trying to portray.
They have clearly lost any interest (like they had any to begin with) regarding the ongoing infection, and now with this stupidity. I’m done.
Absolutely done with this shitty ass doctor. The terrible nursing staff, this “office manager”. Goodbye.
Officially/unofficially you’re all fired. After all that, I feel severely insulted. Thank you for wasting my time, and money.
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