Thursday, September 11, 2008

Update on the Line "Exchange"

It sounds funny doesn't it? Like I'm at the customer service desk at Target, "Excuse me, my central line isn't working. I'd like to exchange it for a new one." Of course, the big difference between hospital care and retail is that the exchange isn't free in health care. The medical bills just keep coming and coming!

For the most part the line exchange went smoothly except for one small detail. Bill and I told everyone -- the nurse who prepared me for the procedure, the charge nurse, the resident who consented me for the procedure, and both nurses in the interventional radiology suite -- that they couldn't use their usual Versed/Fentanyl combo with me because I don't respond to Fentanyl. Fentanyl is a narcotic frequently used for conscious sedation during localized procedures that do not require general anesthesia. We know it doesn't work for me because during one of my feeding tube placements I was given 400 micrograms (A huge dose for someone my size) and still awake and carrying on a conversation. The drug just doesn't touch me.

So we were thorough in spreading the word and the staff assured us that they would use Versed and Dilaudid, which has worked well for me in the past. Once again I was awake for much of the procedure and asking questions. We came to discover in the recovery room that the doctor performing the procedure ordered Fentanyl despite our requests. When I was still awake they just kept giving me more Versed. Finally someone gave me Dilaudid.

When we learned that our request had not been honored, we asked to see the resident. He had impressed me during the informed consent so much that I told him so. He explained the procedure clearly, described the risks and their relative probabilities, and asked if we had any questions. He wrote down the information about the Dilauded and I'm quite sure he passed it along. So, this poor guy, who probably wasn't in the room for the procedure because he's busy doing the "scut" work, had to listen to our frustration. He apologized so nicely that I thought someone should videotape him and make doctors all over the country watch it and learn something.

The attending physician, the guy "in charge," apologized but was not nearly as sincere. "It was my decision to use the Fentanyl because it works so quickly," he explained. So either the message never made it to him, he just ignored the messenger, or he didn't trust my knowledge of my past medical experience and my responses to drugs enough to adjust his standard approach. So much for patient-centered care. I am beyond frustrated with providers who do not listen.

On the upside one of my favorite nurses took care of me. She took care of me the day they put in the first feeding tube and the day they pulled the second one out for good. She is a wonderful nurse and human being; she made it much easier to deal with my frustration by acknowledging my right to those feelings and letting me vent.

I will keep you posted on the heart rhythm. I was still having the premature ventricular contractions in recovery, but then they stopped. Bill listened to my heart when we got home and the rhythm was still normal so I hope this is going to work ...

Thanks for all the positive thoughts, prayers, etc.


Amie said...

Just found your blog via - a great news story and a wonderful essay.

As a fellow "difficult" scleroderma patient, thank you so much. I knew I'd arrived at that level when the ICU nurse called my hubby at 3:00am to tell him to make me co-operate. Hah, wrong person to say THAT to! He deferred expertise on my case back to me. Ooo, they love me at that hospital now.

(another) Amelia

Chip said...

Glad you got through it and you've got a good normal beat. Michelle, thanks for letting us know and hope you have a good restful night.

Ana's World said...

Glad your home and it's going well. Ana

imi4u2c said...


I bless your spirit, soul and mind in faith that you will feel the positive reaction from this engagement.


Susan said...

Glad you're doing OK.

I enjoy imagining you telling the Attending that Fentanyl doesn't work "fast" if it doesn't "work" at all!

Annie said...

ahhh. i ache for you right now. i can't imagine that happening to me. i do know that if it had, i'd be in that dr's face. dilaudid, is great though. i remember having that for my last couple of surgeries. once injected, i slept for a day and a half. how did it effect you?

all in all, how are you feeling? hope you're well.


Laura J. said...


Just found your blog via an article detailing your struggle as a patient to be correctly diagnosed, etc..

Amen! I am a fellow UNC School of Public Health alumni. A couple years ago I worked on an entire Health Literacy curriculum trying to help patients assert themselves and get what they need from healthcare (called "Navigating Your Healthcare System"). Ironically, I was pregnant at the time and using the same skills at my doctors office and only getting smug responses and condescending stares. Rather discouraging to try to empower people and realizing that all the assertiveness wont work unless, as you said- the relationship changes in both directions (from patient to doctor and doctor to patient). While limited time is surely part of the problem- I think there are very few doctors that really have the empathy for the details necessary to make the doctor/patient relationship's too bad!!

God Bless! Laura J. UNC '99

desert dirt diva said...

I was reading your last couple of posts, and you are an insperation, to me. a healthy mom who is menopausal, who has night sweats and mood swing and yells alot because i'm iratated for no apparant reason, then i read your blog, and well it is uplifting..and then i think, it =could be much worse...and you seem so upbeat... its good to see people like you..and know you make the best of what was attidude bye the way after reading your blog has changed me.. thank you...

Connie said...

Glad to hear the re-placement of the line went (relatively) well. Love you!


ohboyoklahoma said...

Scleroderma greetings!

Why oh why do doctors NOT listen to the patient? During treatment for interstitial cycstitis, my 1st autoimmune friend, I said the planned painkiller would not work. It didn't and I needed a nerve block after the procedure. It's so hard always being right!

As far as my 2nd auntoimmune friend and yours SSc I have not had any issues as thankfully all my treatment to date has been at a centre of excellence for scleroderma.

Your blog is excellent because it is real. It shows what this disease can do, how serious it is and the wide ranging impact it has on EVERYONE involved.

I look forward to reading more and thank you for the priveledge of being able to share in you experience.