Serious emergency someone stuck in NY with a broken pump!

#1

OK peeps, need your help.

My friend (with Cystic Fibrosis-related diabetes ANd a one-year lung transplant patient) is at Columbia Presbyterian Hospital in New York City with a broken pump. He's getting zero insulin now.

He was just going to be there for a day of tests (1=year anniversary of new lungs). He lives 6-8 hrs away and has no back-up. Also, their car broke down on the way so he may have to be in NYC until it gets fixed.

Endo's office hasn't responded, Medtronic was "no help" my friend says and the *hospital* is giving them a hard time about even giving him insulin. "Paperwork" is needed. ????? Not sure what's going on there but maybe they can't give insulin without records and classes and who knows what? Is there anyone who works there or knows someone who works there who can help?

Are there magic words that one has to say to get people to respond to emergencies? This guy is on so many meds and has been through so much.

I would Fed Ex him my own supplies but I thought surely there's another solution.

It's very disheartening to think that this could happen. I'm never going anywhere without backup to my pump!

maria

#2

Medtronic, if his pump is under warranty, should overnight him a new one. Has he insisted on speaking with someone from the Endo department? That would be my first move. Wish I could offer more help; hopefully someone more local will be able to!

We don't usually allow double posting, but in this case please also post in the NYC T1 group.

#3

I'll post on Twitter, lots of the NYC PWDs use it

#4

Humulin R and N are avialble over the counter if he cannot get a prescription. I would sweet talk his pulminary Docotors and ask for an RX. If they understand the situation they should hopefully help. The R and N might get a little dicey, but it will keep him going in a pinch.

Syringes also appear to be able to be purchased without an RX in New York as well. http://www.temple.edu/lawschool/aidspolicy/50statesataglance.htm#Explanation. If he purchases syringes he should be able to take insulin out of his pumping resivour and inject around his basal for that time period every 2 hours. It will be dicey too, but can work.

#5

Medtronic told me that if your a patient of theirs they can send back up pumps. Don't understand the problem there. I would call them again.

#6

Have his primary care physician call or fax stuff to the hospital. Ask to speak to a patient representative to help him as well. If he is saying he is a CF patient with a recent lung transplant, I think he deserves to get extra attention, especially since brittle Type 1 diabetes is a known complication of CF.Also, if he was there for his transplant, they should have a pretty extensive record on him, ask for his record to get looked up.

#7

Thank you everyone! Most of these things I've also been telling his wife to do. I think she's getting underlings on the phone who aren't understanding the severity of the situation. I offered to make these calls for her since I know the language but it's been hard to communicate with them in New York city and in the middle of all his tests and things. (One-year post-transplant visit).

I'll tell her to try to get syringes and insert insulin FROM his pump! I hadn't thought of that.

She said that "hospital protocols" are making it nearly impossible to get insulin through the hospital itself. I don't understand that. I don't understand why a doc can't snap his/her fingers and say "14 U of Lantus, STAT". Either I'm missing something or there is a protocol that needs changing. Hard to believe that a medical team would go through all the rigamarole of a double lung transplant, fighting infections with tons of meds and tests, only to let blood sugars go sky-high.

My friends may be exhausted and not advocating for their needs effectively. That would be understandable. Thanks for the help here!!!!

Maria

#8

I wonder if the hospital would be more comfortable if he develops DKA or worse from lack of insulin, resulting in a law suit? (Yes, sarcasm intended.) They might want to mention something along those lines. Thank goodness they have you. I'd be surprised if a call to Medtronics didn't yield results.

Please keep us posted!

#9

I am a former patient of Presbyterian. My last 2 endos were at that hospital. If they are still having problems, tell your friend's wife to go to the information desk at 525 EAST 68TH STREET (Main entrance) and ask where the endocrinology/diabetes department is. I believe it is on the 20th floor. I don't have a doctor specifically to ask for (both of mine left) but the receptionist in endo department should be able to help since her husband is, from what I am reading, already admitted. Showing them the broken pump would also be my suggestion. Please note: Once they are on board, they will most likely take over the administration of insulin shots since they won't let you "self medicate" but anything is better than zero insulin.

#10

Sorry I just realized we are talking Presbyterian/Colombia on the west side, not Presbyterian/Cornell on the east side. Disregard the address I gave you but they also have an endo department within the hospital at Pres/Columbia and you could do the same thing there.

#11

what, this makes no sense. Any hospital will give a type 1 insulin if they're in their care for pete's sake...so, never heard of such a thing. there's no paperwork needed, if a type 1 comes in DKA, they don't ask who the Endo is and they need to get records, they treat him/her, that's what a hospital does. Medtronic is excellent about replacing pumps. He can draw out insulin from pump and inject. This makes no sense, sorry! He can call his pharmacy and have them transfer Rx where he is. There are some insulins that don't need Rx's. Hospitals give insulin every day. And, we're not supposed to go anywhere without extra pump supplies, syringe - pens and vial of insulin, at least back up of a pen.

#12

Holy Moley....so throw him out with the trash because paperwork is needed?
Hold off on the insulin...and wait for nature to take its course?
Unbelievable!!

#13

That's what she should have done. The person his wife talked to at Medtronic didn't set that in motion because she suggested that the hospital give him a flexi-pen. That seemed reasonable but then the hospital was all in a conundrum about that.

#14

Thank you everyone! The problem was solved when a friend drove 1.5 hours to deliver his own pen to them. I got some more info but it's still a bit confusing. I am getting the impression from what I was able to piece together that few doctors were in charge today - it was technicians getting PFTs and doing the tests and so forth. And when a doctor was found, he had issues with the pharmacy balking since Transplant doesn't order these things, Endo does. And they needed faxes or something and my friend couldn't get ahold of her husband's endo. And then they said, "Oh, just go to the ER." But a transplant patient on immunosuppressant drugs has to avoid the ER. And on and on it went. And when they finally got someone to fax the pharmacy, the insurance company wasn't going to pay for any emergency insulin apparently. And no one seemed to know enough to say, "Well, here's some cheap insulin instead." I don't know; it's a mess but it's a lesson to travel with BACK-UP INSULIN and never assume that a hospital will take good care of you. Thanks for all the help and suggestions here though.
Maria

#15

I'm glad that things finally seemed to work out but that is one scary story.

#16

Thank goodness!!! PLEASE have her call medtronics again and get a pump overnighted! He can fill the reservoir with the pen. Yay!

#17

I think the other lesson is to make arrangements to have someone knowledgeable advocate for you if you can't. The wife handles all the medical stuff except for the diabetes. She didn't really know the language or procedures or what to ask for while her husband was getting tests. Still, when the husband (the CF patient) was able to tell the hospital staff about what was happening, there should have been a prompt response, not a lot of "we can't do that" and "do a day of paperwork."

This reminds me of something good-ish: CF patients are now surviving long enough to get diabetes. The mutation eventually messes up the pancreas, but how great is it that my friend has made it to his late 40s before needing a lung transplant and before he developed diabetes. It's a weird kind of good/bad thing.

Thanks again, everyone.
Maria

#18

Seriously. I wondered the same thing about a lawsuit. It just doesn't make any sense. My friends are used to paperwork, so if this was an insurmountable barrier, it must have been huge.

#19

This is not the only story I have heard about ER/hospital issues. I ended up in the hospital due to possible med reaction. Taken by ambulance. I was there from 2 pm to 10:30 pm. No one tested my by, or even asked about it. No food brought to me, nothing. Being I was taken by ambulance I had nothing with me. I told them I was a diabetic.