Johns Hopkins Hospital, Funny/Sad Experiences

[skateguy]

I have been living with metastasized prostate cancer since 11/2010. I have been seeing an oncologist there since 2015 (on and off, but mostly on). Johns Hopkins Hospital (JHH) it well known in the US. It is in Baltimore, MD and has a good reputation. After going there for many years, I think JHH reputation may not be deserved. Through my personal experiences as a patient. I’ll just listed three funny/sad personal experiences:

1.My wife sent an e-mail to my oncologist who ask another JJH employee to call me. During the conversation (not the oncologist) with this person, I asked that information about my condition be passed to my oncologist. The person on the phone replied, “I’m not Dr. ******** secretary”.

2.I had a 5PM appointment with my oncologist (Skip Viragh building). We were in one of those rooms you wait in for the doctor to arrive. About an hour later, my wife and I grew impatient, so she went to look for someone to find out when we could expect the doctor to arrive. She returned to inform me that everyone had left for the day. This was a Thursday, and not a Friday. So we walked the halls and realized everyone went home and left us there. PS: We did eventually meet up with the doctor that day.

3.This is more common. I’ll call JJH only to be given another phone number that is not a direct line, but a general line. It would be like calling a pizza delivery company and asking for a cheese pizza, and the employee would reply that, I’m the pepperoni pizza guy and that you need to call back at *******.

Life is filled with adventures, Have a great weekend

[Tall_Allen]

I only communicate via email. That way you have a record. It also forces you to be succinct.

[skateguy in reply to Tall_Allen]

I’m not sure I understand your response.

[Tall_Allen in reply to skateguy]

Other than the waiting room experience (#2), it seems like your problems were a result of trying to communicate via telephone. I'm suggesting that you may have fewer problems if you restrict communications to email or face-to-face meetings.

[skateguy in reply to Tall_Allen]

Another funny story, I communicated an issue to a JHhH nurse. She was appalled, and said I should tell someone. I said “I am, you”, she would not provide a JHH contact. In any large organization there are people that want to improve the process and some that do not care. JHH may have more of the latter.

[skateguy in reply to Tall_Allen]

I think you are saying that I should communicate with JJH by email. I do. I’m not trying to get anyone in trouble. I use email a lot. Your reply was a little to succinct, haha.

[London441 in reply to skateguy]

The reply was succinct because your issue needed nothing more.

No matter how much you ‘use email’, the phone is still the least reliable communication these days. Avoid it wherever you can!

I’ve been a Johns Hopkins patient for 4 years. Email and their online portal (MyChart) works well for everything in my experience. Early on I tried phoning too. Even for making a simple appointment it was very unreliable.

To be sure, it’s easy to get forgotten in a waiting room these days. It’s even easier to get bad info or a message lost/poorly interpreted etc through the phone. Much like doing banking inside the bank, I think many of us older folks like doing things the ‘old way’. I’m not claiming that is you.

However, you can see for yourself using the phone to try to get a message to a doctor at a huge hospital network like JH is a crapshoot. And as TA said, it’s nearly impossible to have a record or hold anyone accountable via phone.

Onward! I strongly suggest using the portal for as much as you can. It’s been good to me.

[skateguy in reply to London441]

succinct - short and to the point. I missed the point, haha

[London441 in reply to skateguy]

I wish I could be succinct😸

[j-o-h-n in reply to London441]

Sorry wrong number.....

An elderly person's plight using email or the portal:

1. No computer

2. No email

3. Can't read or write in English

4. Difficult viewing the keys on the keyboard

5. Takes dexterity to use one finger for typing

6. No internet

7. Can't get out of bed (no portable) to reach desktop

I know you agree......

God Bless all our past or present armed service personnel.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/30/2022 2:39 PM DST

[samuelachglue1952 in reply to j-o-h-n]

Thank you j-o-h-n for your wonderfully humorous perspective on life. Thread participants NEED it.

🙂

[j-o-h-n in reply to samuelachglue1952]

No..... Thank you, for your post......

God Bless all our past or present armed service personnel.

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/30/2022 3:44 PM DST

[cancerfox in reply to Tall_Allen]

TA,

What if you are never given anyone's email address; my Urology Group never gave me any email addresses and their so-called Patient Portal won't even let me create a login. They probably don't want patients pestering them with a lot of questions. Should I insist on them giving me some email addresses, and possibly just moving on to another practice if they won't?

Thanks!

cancerfox

[skateguy]

I agree. The above are just stories. But I have learned so much that one day I may write a book. There are many great people in the medical field. However, it is designed to maximize profits and not necessarily help people overcome their illnesses.

[skateguy]

Real stories

[skateguy]

I probably had 12-15 oncologist over ten years. Near the end of my fight with prostate cancer, I finally found an oncologist that is knowledgeable and truly cares about helping me

[maley2711 in reply to skateguy]

a sad situation !!

[skateguy]

Totally agree.

[j-o-h-n]

Doctors making house calls..... LOL LOL LOL

Push 1 for English..... push 2 for Esperanto..... Now push 1 for.... push2 for..... push3 for..... etc.

This conversation will be recorded for training purposes (bullshit)

You then get "all service technicians are busy helping themselves to left over pizza"

Then you get Dr. No-one has stepped out of the office (for a Nooner) so wait for the beep and leave your message "Doctor I can't pay your bill..... bye bye...... remember to press 9".

We have become a "I don't give a shit about anyone but myself" society.

Subway train stations are crowded with people, everyone one of them is looking down at their I-phone. Someone steps behind them and pushes them off the platform onto the subway trains tracks. All of a sudden all of theses mannequins wake up and start taking pictures of the poor bastard on the tracks with their I-phones. There's where I jump in and save the guy on the tracks while no one tries to capture the pusher.

Get on a subway train......Homeless guy sprawled out all over and taking up a row of seats. All of the other riders are bunched up on the other end of the car and no one saying a word to him. Here's where I jump in and walk over to the sleeping bum and yell out "YO YO GET UP AND GIVE ME MY SEAT" Sure enough he gets up and sits like a rider should when they pay $2.75 for a seat. Everyone stares at me and I ignore them. I sit, they stand......

No one gives a damn about anyone else....

Does it sound Like I'm ranting....... Naw.....it's just the new American way.........

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 05/29/2022 10:58 PM DST

[skateguy in reply to j-o-h-n]

I think I might have hit the wrong reply button. So my reply might be below, somewhere. 😀

[skateguy]

You had me rolling on the floor. Funny and sad. Money & power are societies top priorities.

[London441]

The decline of our society, civility, spirit of goodwill etc is all too apparent so I just stay to the positive wherever I can. There’s just too much that’s wrong with the…I’ll confine it to US.

The positive? My doctors have been responsive and caring. Despite hideous obstacles of various types, without the medical advances of the last 30 years or so I would not be writing this today.

[NOCanceros]

HiI have problems with my urologist he told me is the German DR.s better than us , i had no comments, now he will call me after 6 months, My best DR. oncology from Germany he answer my questions within 24 hours,iam lucky to have him.

[skateguy in reply to NOCanceros]

One of my oncologist told me to communicate with him by e-mail. 90% of my e-mails to his oncologist go unanswered. Another oncologist gave me his cell phone number, and told me to call his cell phone, if I needed to talk to him. When I call, I leave a message. Each time I leave a message, he calls me back in less than 30 minutes. This oncologist is well known and very busy, but he does what he says he will do. Oncologist, and everyone one in the medical industry, aren't any different than people in any other industry.

[skateguy]

As things change, they remain the same. agree.

[dentaltwin]

Based on my experiences at MSKCC (and those of my late wife), these things can happen (more likely for me, at the subterranean urology lockup at the Haupt Pavilion). It became clear that the pandemic put an additional layer of bureaucratic bullshit onto what already was in place. Most of the people were wonderful, but it takes only one screwup to throw the schedule way off. I found often the best contacts were the NPs attached to the oncologist. I understand the frustration (I had it too) but if you have a good oncologist hold on to them.

[skateguy in reply to dentaltwin]

You are correct.

[JenTasker]

My husband had many unfortunate experiences many different places which taught us learn to be specific and proactive with our health care. He was a patient of a Dr. Denmeade at JHH and he and his staff provided excellent and aggressive care and were very invested in helping my husband.

[skateguy in reply to JenTasker]

Great to hear your wonderful experience at Hopkins. In a way I’m glad to have prostate cancer versus anther cancer. It took me 5 years with prostate cancer to better understand the difference between good care and poor care. My dad didn’t have a chance. About 12 years ago, my dad was diagnosed with lung cancer. A doctor told him he had 6 months to live. He died almost 6 months to the date of diagnosis.

[cancerfox]

Unfortunately, this is why so many of us are on this website. Healthcare has become a profit-driven bureaucracy, forcing patients to become pro-active in guiding their own healthcare if they want to have a positive outcome. It's also something of a crapshoot; there are good physicians and bad physicians, good staff people and bad staff people, etc. Which wouldn't be so bad if we were talking about sales clerks at Macy's, but we are literally talking about life and death in a lot of situations with healthcare. I'm not sure what the solution is......... maybe our esteemed government bureaucracy can create another blue ribbon panel to get to the bottom of healthcare's inadequacies. On the bright side, we aren't being drained by blood sucking leeches anymore to prevent or treat infection and disease! 😃

[skateguy in reply to cancerfox]

My advise from my experience. 1. Ask as many equations necessary for you to feel comfortable. If you do not feel comfortable, find another oncologist. 2. You and you alone, care about you, more than anybody else. Basically, do what you think is best for you, even under those difficult circumstances were it feels like everyone around you disagrees. Have a great day & good luck.

[Burk]

Amen Nal! It's exciting to see Biblical prophecy being fulfilled in so many ways right in the headlines of the daily news. Get ready guys! We are out of here soon!

[jfoesq]

Having survived 12 years so far, with metPC, I would say that the incidents you described of obviously annoying, but rather minor.

[skateguy in reply to jfoesq]

We will all have different experiences and opinions. yours in the most important, to you. Not everyone will relate to my experiences/opinions, but I'm not necessarily affected by other peoples opinions/experiences. People are funny. Do not misunderstand me. I'm happy and my life is great. I find myself recently in a wheelchair, spending 90% of my time in my bedroom, home office and bathroom, about 1000 sq/ft. I have been told many times that I should go to Hospice (last 3-5 years). Most recently by two of my oncologist (January 2022). Most people would comply, and I might have too, until I came across an oncologist during the same month, that all this was happening. I sent an email to my oncologists (2) who never replied, basically I was asking for help, I copied a third oncologist that I never met before in my life. I'm in Virginia and he is in the midwest. A day or two after sending that e-mail, he called me on my cell phone. I was in a hospital (8 days) at the time, and I thought I would be dead soon. Because of this oncologist, I'm am alive today. He discussed scans and drugs that could help and wondered why my two oncologist didn't discuss this with me. I have only met with him once. My second appointment is June 16. He is the first doctor (he is not an oncologist) that I truly believe wants to help me. And over the course of twelve years I have met/talked to a lot of oncologists (30+). He wouldn't have any problem with me identifying him publicly. His name is Eugene Kwon, Mayo Clinic, 507-284-1250. That is not his cell #. Good Luck

[skateguy]

I may stop responding to comments. So do not take it personally. It's just that I rarely post, but I check the web site often. This site is the best I have found for ideas to improve my health, specifically in regard to Prostate cancer.. Good luck to you all.

[groundhogy]

Skateguy,I am also in baltimore.

What docs do you think are good?

groundhogy

[skateguy in reply to groundhogy]

An Oncologist working at a research hospital. Hopkins is a research hospital but there are other research hospitals.

[skateguy in reply to groundhogy]

You’ll increase your chances Of finding a good oncologist at one of these types of organizations.