- Jurisdiction
- New York
Hi,
I have peripheral artery disease in both my legs, which gradually blocks the arteries of my legs, causing me pain after walking a short distance.
In the last two weeks, one leg has become much worse, reducing the distance I could walk without stopping from 50 feet to about 10.
This means my disease is almost blocking a major artery in that leg, and I am risking serious consequences including amputation if this blockage is not surgically managed in time.
MONDAY, April 19th: On the advice of my regular cardiologist, I booked immediate consults with two cardiology interventionalists (surgeons) — one at NYU and one at Columbia.
TUESDAY: I underwent an ultrasound scan of my leg at an NYU facility. Like a submarine using sonar, an ultrasound produces images of the exact location and severity of the blockages in my artery, giving me a good visual understanding of what is happening, and helping inform my prospective interventionalist what surgical approach and tools needs to be considered
I completed the ultrasound scan at 11.31 am as per the written report. The lead sonographer (who did the scan) assured me that all my test results would be posted to NYU's medical web portal later in the day.
A few hours later, his written report was posted to the web portal, but his medically standard "graphical representation" — basically a simple hand drawing of my blocked arteries—was not posted.
sample ultrasound graphical report
WEDNESDAY: I had a 2:25 pm telemedicine consult with the NYU interventionalist, reviewing what surgical approach he expected to take. He seemed to have access to the graphical report, and it was frustrating that I didn't have one so I could follow along. He ended by telling me that my situation was urgent, and that he could schedule me for a catheterization procedure within a week's notice.
I told him that I had a second telemedicine consult scheduled for this Tuesday morning (April 27th), and wanted to make my decision then. We agreed that if my leg became markedly worse at any time, I would go to the emergency room.
Two hours later, I noticed that the ultrasound graphical representation still hadn't been posted. I called the NYU facility and left a message asking that the sonographer post them as soon as possible, since I had to forward a link to them to my second consulting doctor (at Columbia), who wasn't part of the NYU ecosystem.
THURSDAY: Having received no reply of any kind, I called the facility again both in the morning and then in late afternoon, detailing to the receptionist what was happening and asking for help.
FRIDAY MORNING, 9:30am. With no reply and no change to the portal, I called yet again, emphasizing to the receptionist how important this was. She connected me to sonographer's voicemail, and I left him an unambiguous message, asking him to please do what he had promised to do three days ago.
Three hours later, when I received no reply by 12.30 pm, I called reception again and said that unless I spoke to the sonographer right now, I was physically walking over to the facility, just a city block away, to collect the report in person.
Ten minutes later, the sonographer was on the phone. He said that his graphical report was "preliminary" and as such, not available to me. He said this preliminary report was currently available to the NYU doctors on the portal, as they had special access. He apologized but said there was nothing he could do.
Later that day, Googling and trying to figure out what to do, I discovered the "21st Century Cures Act," and the "Open Notes" bill which mandates that via a web portal, consumers will be able to read all notes produced during a visit to the doctor's office, as well as view all test results and the comments of those doing the testing.
This web portal posting is to be done instantly and automatically, so quickly in fact, that it's possible for the patient to have access to his test results before his doctor does.
Clearly, that's not happening in my case.
I've considered emailing NYU's general counsel with this matter, but I'm not at all sure what my best course is, i.e., should I involve a lawyer, what he/she likely could do and how quickly, etc.
My upcoming interventionalist's appointment is for this Tuesday, 9.30 am.
Any and all help is greatly appreciated.
I have peripheral artery disease in both my legs, which gradually blocks the arteries of my legs, causing me pain after walking a short distance.
In the last two weeks, one leg has become much worse, reducing the distance I could walk without stopping from 50 feet to about 10.
This means my disease is almost blocking a major artery in that leg, and I am risking serious consequences including amputation if this blockage is not surgically managed in time.
MONDAY, April 19th: On the advice of my regular cardiologist, I booked immediate consults with two cardiology interventionalists (surgeons) — one at NYU and one at Columbia.
TUESDAY: I underwent an ultrasound scan of my leg at an NYU facility. Like a submarine using sonar, an ultrasound produces images of the exact location and severity of the blockages in my artery, giving me a good visual understanding of what is happening, and helping inform my prospective interventionalist what surgical approach and tools needs to be considered
I completed the ultrasound scan at 11.31 am as per the written report. The lead sonographer (who did the scan) assured me that all my test results would be posted to NYU's medical web portal later in the day.
A few hours later, his written report was posted to the web portal, but his medically standard "graphical representation" — basically a simple hand drawing of my blocked arteries—was not posted.
sample ultrasound graphical report
WEDNESDAY: I had a 2:25 pm telemedicine consult with the NYU interventionalist, reviewing what surgical approach he expected to take. He seemed to have access to the graphical report, and it was frustrating that I didn't have one so I could follow along. He ended by telling me that my situation was urgent, and that he could schedule me for a catheterization procedure within a week's notice.
I told him that I had a second telemedicine consult scheduled for this Tuesday morning (April 27th), and wanted to make my decision then. We agreed that if my leg became markedly worse at any time, I would go to the emergency room.
Two hours later, I noticed that the ultrasound graphical representation still hadn't been posted. I called the NYU facility and left a message asking that the sonographer post them as soon as possible, since I had to forward a link to them to my second consulting doctor (at Columbia), who wasn't part of the NYU ecosystem.
THURSDAY: Having received no reply of any kind, I called the facility again both in the morning and then in late afternoon, detailing to the receptionist what was happening and asking for help.
FRIDAY MORNING, 9:30am. With no reply and no change to the portal, I called yet again, emphasizing to the receptionist how important this was. She connected me to sonographer's voicemail, and I left him an unambiguous message, asking him to please do what he had promised to do three days ago.
Three hours later, when I received no reply by 12.30 pm, I called reception again and said that unless I spoke to the sonographer right now, I was physically walking over to the facility, just a city block away, to collect the report in person.
Ten minutes later, the sonographer was on the phone. He said that his graphical report was "preliminary" and as such, not available to me. He said this preliminary report was currently available to the NYU doctors on the portal, as they had special access. He apologized but said there was nothing he could do.
Later that day, Googling and trying to figure out what to do, I discovered the "21st Century Cures Act," and the "Open Notes" bill which mandates that via a web portal, consumers will be able to read all notes produced during a visit to the doctor's office, as well as view all test results and the comments of those doing the testing.
This web portal posting is to be done instantly and automatically, so quickly in fact, that it's possible for the patient to have access to his test results before his doctor does.
Clearly, that's not happening in my case.
I've considered emailing NYU's general counsel with this matter, but I'm not at all sure what my best course is, i.e., should I involve a lawyer, what he/she likely could do and how quickly, etc.
My upcoming interventionalist's appointment is for this Tuesday, 9.30 am.
Any and all help is greatly appreciated.
