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I am beyond livid and just..exhausted and defeated.
Don't worry the PIXYDUST launch s still happening as scheduled, I'm just not getting my surgery.
This is Johns Hopkins supposedly one of the best hospitals in the world. Let me tell you how it's been going.
I do want to say the doctor himself was excellent but his staff is completely incompetent and I don't say that lightly.
I try to give everyone a second chance. We all make mistakes, but there were 3 major fuck ups I've been dealing with. Let's start a the beginning.
Keep in mind I have received no pain care even though the #1 symptom of this tumor is..pain. Mine is more complicated than usual and is damaging my nerves, bones and tendons. All verified via x rays and MRI. I was under the impression the surgery was supposed to be done late mid-February.
They "forgot "to schedule the biopsy I needed before surgery. Yes ,"forgot" is a direct quote.That's right we waited 2 weeks for a phone call from the department that does biopsies only to find out the ortho office never bothered to send the referral..to the office downstairs from them.It was supposed to be sent STAT. That cost several weeks delay. Weeks of excruciating untreated pain.
They scheduled the surgery without a consult . i was told after the biopsy I'd get a telehealth or phone call ot go over the surgery, make preparations, ask questions and possibly schedule it that day too. We need some paperwork for my husband to take leave from work and that was supposed to be discussed then too.
That appointment never happened. They scheduled the surgery without even asking if the date worked for me. What the actual F?
Just for reference this is borderline if not outright malpractice here in the US. This is not standard or care. I have never in my life heard of a surgery being scheduled without the patient's input or a consult. This is a major , complicated surgery.
3- I was even willing to forgive that under the assumption I would still get a pre op appointment with the doctor before the surgery. I am that desperate for this to be over.But that's a while other issue. It's not happening.
They gave me 3 weeks notice on the date. I need to have a pre op screening/clearance from my primary care doctor before surgery. It is required and not negotiable. So we scrambled to get the one opening he had.
Guess what? The ortho office never sent us the required paperwork. Not only did I have to cancel the appointment with my primary care doctor I also had to pay a cancellation fee because of the other office's incompetence.
It gets worse. Somehow.
My husband called to get the pre surgery paperwork (not the patient's responsibility. this should have been taken care of by them and sent to my primary care doctor) and he was then told they "don't do telehealth" and that's why the surgery was just scheduled without even talking to me. This makes no sense as the scheduler is not the doctor and after surgery consults sometimes you get same day scheduling but usually the scheduler calls you in the next few days if they were not available that day.
Are you fucking kidding me? You are telling me John's Hopkins doesn't have phones or computers or a set up for telehealth? (they do, obviously) . I would not have done the biopsy or continued with the surgical plan if I knew they wouldn't provide telehealth. It's a disability accommodation required by law. Also the opposite of what the doctor told me and my husband at the first appointment. (the hospital is in downtown Baltimore .Not easy to get to for a healthy person )
The woman at the office never sent the paperwork for my other doctor and I had to cancel the morning of and I was charged a cancelation fee.
Now not only do I not have a surgery date i need to start over with another surgeon. Months wasted in severe pain for nothing.
If they can't do the basics of their job, tasks they do every fucking day how the hell am I to trust them to do the surgery? It's also now impossible for me to get surgery on the selected date because there is no time for the pre op check from my PCP(I still don't have the paperwork anyway).
So now I am just here suffering more every day, the tumor is growing and is causing permanent damage and these delays have already caused harm. It will likely be at least 2-3 months for me to get the surgery I need at the absolute earliest if I can find another surgeon. It will probably be closer to 6 months to a year with how slow our medical system is here.
I...am devastated. I...just can't anymore.