“WELCOME HOME!”

medical professionals

WHEN WILL THE B.S. END? (IF YOU READ TOWARDS THE END, YOU WILL GET THE PUN)


Hospital Admissions No. 494+

DISCLAIMER I don’t actually know how many times I’ve been hospitalized since April 2014 when my “Cancer Chaos” began. I hope it hasn’t quite reached 494, just yet, but I’m sure it’s getting there!

Ah, the E.R…

After falling and hitting my head yet again, I spent 24+ glorious hours in the E.R.

While this was just a few months ago it feels like years have passed!

In the E.R., I went through all the standard steps. For example, I had multiple neuro exams, like: “Follow my finger without moving your head, just follow with your eyes” or answering the typical questions, like:”What’s your name and where are you right now?


Test After Test

In the E.R. I expect some diagnostic test of my head/brain. However, they leave me guessing whether they’ll do just a CT, or an MRI, or both.

Well, this time it was only a CT. However, that CT showed some bleeding in my brain!

Not good.

Ct scan of my brain

Yet, before they would admit me, I needed to wait in the E.R. for another 8 more hours for a 2nd CT scan to ensure that “Thank God” the bleed resolved on its own.

Why couldn’t I be admitted before that? I have no idea.

Now, to be fair, this E.R. is usually excellent. It’s just the endless hours of waiting!

Nevertheless, learning they finally decided to admit you, and then you finally get a room/bed on the unit after endless hours in the E.R. feels like winning the lottery!

A Small Bit of Advice

Advice
ADVICE -TO TAKE OR LEAVE, AS YOU WISH

ADVICE TO RESIDENTS AND ALL MEDICAL PROFESSIONALS:

TO ANY RESIDENT, WHO ACTUALLY HAS TIME TO READ MY BLOG, FIRST, “HATS OFF TO YOU!”

EVEN TO THOSE RESIDENTS out there reading this to merely stay awake after your 5th espresso:

PLEASE UNDERSTAND:

We, as patients, know you don’t make the decision, or at least I know it. I’ve essentially spent over 7 years in hospitals too.


Dear RESIDENTS,

I love ya all, but when you enter my room when I’m dead asleep, turn on all the lights at 5:00 a.m., and shine a bright light into my eyes: just know, that you are RESIDENT No. 302 I’ve now met.

You’re not the first, nor will you be the last.

While you may have some novel and unique ideas, Please respect me and don’t contradict me about my own condition.


There’s just some attitudes I won’t accept, especially in the hospital and especially when a resident fails to acknowledge the relationship I have with my doctors.

I touch base with all of them directly or through a nurse on the regular.


I kinda can tell YOU the plan and all the discussions/options I’ve already had with my actual doctors. Or, you can choose to dismiss me.

However, just know 95% of the time I’ll be right on-point.

Remember. If you treat your patients like they’re just a number, i.e. you argue with them and dismiss what they tell you, know that:

You are just a number to us too!


DEAR ALL PHYSICIANS, SURGEONS, MEDICAL PROFESSIONALS, ETC.

I SINCERELY APPRECIATE HOW HARD YOU ALL WORK! YOU ARE HEROES!

However, the above advice I directed towards residents I’d give to all PHYSICIANS, SURGEONS, NPs, NURSES, etc.

Essentially, if you treat me poorly, or degrade me: I will quickly take my multimillion dollar brain (likely what I’ve racked up in medical billing) somewhere else!”


advice to medical professionals
ULTIMATE FAMOUS MOVIE SCENE

Ironically, this behavior is how I found my neurosurgeon at NYU

I’ve given this incident with another neurosurgeon too much “BlogTime”.

Nevertheless, here is a Post on the whole ugly situation:

https://braincancerbabe.com/2020/05/11/another-surgery-down-now-recovering-in-so-many-way/

Thankfully , I learned about an expert neurosurgeon, who was also a researcher at NYU. Once I met him, I knew – once again I had found MY doctor! Not to mention, my now retired 1st neurosurgeon mentored him. Win. Win.

Yet, choosing a new neurosurgeon required that I leave the hospital I had been treating with for years. Also, I had to trust my lil brain in someone else’s hands. It was not an easy decision.

Yet, Dr. Placantonakis, you deserve the acknowledgment for all you’ve done for me and my brain! 👏👏👏


Anyway, back to a few weeks ago….eventually I was admitted to NYU.


NYU’s KIMMEL PAVILION

As far as I know, all my doctors’ patients are admitted into NYU’s relatively new, Kimmel Building.

Here’s to neurology and neuro-oncology! 🤙🏻🤙🏽🤙🏿

NYU KIMMEL
NYU KIMMEL’s FAMOUS SCULPTURE


The Building officially opened in 2018. However, I’ve already had countless hospitalizations there.


Yes, this IS my hospital. 👌

ADMISSION TO NYU’S KIMMEL PAVILLION: UNLIKE ANY OTHER HOSPITAL


Admittedly, the Kimmel Building makes you feel like you’re in a nice hotel room rather than a hospital room.

Now that’s an achievement!

I mean it has a “Guest Services” Department

Additionally:

Kimmel Pavilion is one of the most digitally integrated and sophisticated inpatient facilities in the country, designed to maximize the level of care for each patient.

https://nyulangone.org/locations/kimmel-pavilion

THE HOSPITAL ROOMS!


Each patient room features MyWall, a 75-inch electronic display screen with a touch screen tablet at the bedside, giving patients easy access to view educational materials related to care, watch TV and movies, communicate with loved ones through the phone or Skype, order meals, and adjust room temperature, lighting, and window shades.

https://nyulangone.org/locations/kimmel-pavilion

ADMISSION TO RUSK REHABILITATION

I remained so comfortable in Kimmel, but I knew that I’d likely be off to inpatient acute rehab at Rusk Rehabilitation.

Admittedly, I didn’t really mind the wait for an available bed at Rusk. Gaining a bed at Rusk is like “gold”.



Rusk Rehabilitation: https://nyulangone.org/locations/rusk-rehabilitation-at-nyu-langone-orthopedic-center

  • They are “Pioneers in Rehabilitation” and have helped people recover physically from injuries and illness since 1948.
  • For more than 25 years, U.S. News & World Report has named Rusk the best rehabilitation program in New York state.
  • They’ve received the Magnet® recognition for excellence in nursing from the American Nurses Credentialing Center.

Most importantly in my case, they have a Brain Injury Rehabilitation Program specialized in treating adults and children who have severe traumatic brain injuries, as well as mild to moderate brain injuries and neurological conditions.

Therefore, since this was my 2nd stay inpatient at Rusk, I was actually very happy to get back to therapy. I needed their help desperately. So, for 2.5 weeks I worked so hard every day to relearn to walk and reuse my left arm.


AND… IT’S BACK TO THE HOSPITAL

After leaving Rusk, I hoped things would FINALLY calm down – NOPE!

Seizure Time

I woke-up in the middle of a seizure. Typically, I don’t have prolonged seizures. Yet, this one lasted more than an hour. Nevertheless, I always remain conscious when a seizure hits. It took 5 of my rescue meds to finally get me out of this episode.

Further, it affected both the left and right sides of my body so, it was very different from my typical left arm, focal seizures. Due to the length of the seizure, the EMTs were called and brought me to the local E.R.

Thus, by June, I was back in the local E.R.

Ironically, this was the very hospital I wound-up in after my 1st seizure, which led to my diagnosis.


WHEN YOU GET THE WRONG MEDICAL ADVICE


As a “professional patient”, many times I know when I get improper medical advice. I know how my body reacts to certain things; I weigh my options very analytically; and, I reach out to the multiple doctors I treat with before making a major medical decision.

Unfortunately, this time even though I consulted with several of my treating doctors, the local E.R. doctor was convinced the seizure was caused by a UTI. Thus, he put me on an extremely strong antibiotic. I felt immediate side effects. I became extremely weak, I had serious joint pain, and let’s just say I had major bathroom issues.

Later, I learned that many E.R. doctors simply prescribe antibiotics without consideration of the patient’s entire medical history.

Lesson learned, the hard way, as always!

AND… IT’S BACK TO THE HOSPITAL, AGAIN!

AT THIS POINT, I BELIEVE I DESERVE AN HONORARY M.D. OR MY OWN WING

Now into July of this year, I cannot count how many times I’ve been in the hospital.

REVOLVING DOOR – IN AND OUT OF THE HOSPITAL

Another E.R. VISIT GONE WRONG

Due to the antibiotic side effects, once again in late June I had to visit the E.R. Unfortunately, I wasn’t even given a triage room – I was left in the hallway next to the Nurses’ Station. No call-bell. Barely any attention. Due to the lack of care/attention, the drunk girl on the gurney (it was a Friday night)in front of me simply got up and walked out! Security couldn’t find her anywhere.

Once again the Resident E.R. doctor was frankly, useless. I know it’s a difficult job. Yet, she IS a doctor.

First, I was told numerous times, “how complex my case and history are, and since it was so busy”, the Resident “did not have time to understand it all.” I explained that my epilepsy doctor, wanted to schedule me for an ambulatory EEG, while I was home, and not in the hospital.  The Resident continuously “explained” that could not be done in the E.R. 

I’m well-aware of that.

Thus, I directed her to call my epilepsy doctor’s on-call Team. She refused.

She claimed I only came into the E.R. due to the UTI previously diagnosed at another hospital. Yet, I was suffering with a terrible migraine and extreme muscle/joint pain.

This is probably the 1st time since my initial diagnosis of brain cancer in 2014 I’ve entered an E.R. and haven’t received a full neuro work-up!     

Besides all this, I did not have my medications with me.  Thus, I had already missed my 6:00 p.m. dose of one anti-seizure med).  I was due to get my other nighttime meds, including my other anti-seizure med.  Well, this Resident actually said, “ SHE was going to review my night meds and she was going to decide WHAT meds she felt it necessary that I take since I wasn’t being admitted!”

I received nothing except Tylenol for my persistent migraine.

Another E.R. VISIT – JUST ONE DAY LATER & BEING ADMITTED

Since, I’m fortunate enough to treat at multiple hospitals, I just knew something was wrong. My symptoms were still present since I failed to receive proper care at the prior hospitals. Well, I FINALLY got some answers although it required yet another E.R. visit at yet another Hospital!

FINALLY, SOME ANSWERS: I HAD A VERY CONTAGIOUS BACTERIAL INFECTION

I won’t get into the nitty gritty of it all, but it turns out I had a serious, extremely contagious bacterial infection. This was a pretty BIG “miss” by that other E.R.! In fact, this is so contagious, I was admitted, placed in a private room in which anyone who entered the room needed to wear a special gown and gloves!

This infection, referred to as C. diff is a germ (bacterium) that causes severe diarrhea and colitis (an inflammation of the colon). Most cases of C. diff infection occur while you’re taking antibiotics or not long after you’ve finished taking antibiotics. C. diff can be life-threatening….Some of the risk factors, include:

-You’ve been taking antibiotics or not long after you’ve finished taking antibiotics ✅

-Being 65 or older (Despite feeling like it, I am still only 41, so No ✅)

-Recent stay at a hospital or nursing home✅

-A weakened immune system, such as people with HIV/AIDS, cancer, or organ transplant patients taking immunosuppressive drugs✅

-Previous infection with C. diff or known exposure to the germs

https://www.cdc.gov/cdiff/pdf/Cdiff-progression-H.pdf

I CAN’T WIN, CAN I?

BACTERIAL INFECTION

Having an answer, finally, helped at least. However, this infection is SO NOT fun! Plus, about 1 in 6 people who
get C. diff infection will get it again in the next 2-8 weeks.

AND… IT’S BACK TO THE E.R., YES AGAIN!

It didn’t seem like the antibiotic (which oddly is used to treat the infection brought-on by using antibiotics) was working, so back to the E.R. I went. By now, it was already July, and another summer was flying by yet again. I was kept for observation, but at least we’re confident the infection is now gone.

SO, THAT’S WHAT’S BEEN GOING ON AND WHY I HAVE NOT WRITTEN MUCH LATELY.

I hope your summer has gone better! 😊


2 thoughts on ““WELCOME HOME!”

  1. My heart goes out to you Ruthie. I don’t think I am quite as much a veteran of multiple hospital stays as you, though next week, it will be my sixth this year. A personal best for any year so far!

    When I am lying down and unable to move my limbs, it distresses me when medical practitioners discuss me without engaging with me. Apart from being rude, it is dangerous because no one knows more about my condition and state of health than me.

    It makes me feel more vulnerable than is necessary, and questions whether I am thought to be a life worth saving. I explore this in the article before the current one on the significance of memories. I’d value your comments on these:

    Value of Life – Are we all worth the same? https://www.independentliving.co.uk/philip-anderson/value-of-life-are-we-all-worth-the-same/

    Remembering and Being Remembered https://www.independentliving.co.uk/philip-anderson/remembering-and-being-remembered/

    Wishing you the best, and thank you for sharing your thoughts and experiences

    1. Thank you, Philip. I would imagine you can relate to the feelings/emotions I opened-up about in this piece.
      You are exactly right when you say, “Apart from being rude, it is dangerous because no one knows more about my condition and state of health than me”.
      I sincerely believe that most residents and even seasoned professionals don’t quite understand this.

      Regardless of my education, I’m an intelligent, intuitive person. My body always “tells me something isn’t right here.”

      Having worked as a litigation attorney in NYC, I’m way too accustomed the “old boys’ club” mentality. It’s prevalent in so many professions, but especially in the legal and medical world. If there’s one thing I will never take, it’s being talked down to. Don’t think you can strut into my hospital room and tell me more about my condition than I know unless you are my treating doctor. Sure, I may not know the particulars of each nerve or certain medical terms, but I’ve read more about my disease than most ever will, given how rare it is.

      My plastic surgeon and I have a great relationship. One morning in hospital a year ago I just went-off on his residents. I’m not proud of it, but I couldn’t take “the Team” doing nothing for my excruciating pain any longer. When I saw my surgeon later that day I told him how frustrated I got and he said,”oh I know. They told me all about it.” It’s not right and it’s not fair, but sadly not enough patients can or do advocate for their rights as patients. Obviously, I’m not one of those patients 😏

      I always appreciate your comments and look forward to reading your articles. I’d also recommend anyone reading my piece read your articles.

      Philip, you are so worth saving. If only half the world was as intelligent, empathetic and talented as you, we’d all be living better lives. ❤️
      Stay strong through your upcoming hospital stay. You’ll be in my thoughts and prayers.

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