Tuesday, June 30, 2009

Horrible morning....but taking charge

This morning was a nightmare but I can't say I'm surprised because even the scheduling process for the port-a-cath placement procedure was disorganized and left me feeling like I was being lost in the shuffle. Last night I realized nobody from the hospital had called me to ensure I knew what I needed to do for prep or where I was going since I've never been there before (it's a small local hospital, NOT UCLA). This morning we got to the hospital and quickly realized we were dealing with another "C" team. They were totally disorganized and I was feeling invisible. We couldn't understand anything anyone said to us and had to keep asking them to repeat themselves. We were shuffled around because the outpatient admitting staff weren't there yet and the regular admitting staff were treating us like I was inpatient. They handed me instructions on how to prepare for surgery! Um...gee...you think you could have passed that information along BEFORE I arrived for surgery that day? Thankfully, I had done all the legwork on my own to find out what prep was needed (again, because nobody bothered to take proactive steps to inform me). There was another patient there awaiting instructions for admitting and we overheard him tell a staff member that he'd been there yesterday for surgery but since nobody told him how to prepare he had breakfast before arriving and when they asked him when he last ate and he said that morning he was sent home and told to come back today. Obviously they have issues there. Hopeful that it was just the admitting staff/process that was at issue, we proceeded to the lab for blood work. Well, nobody was there and I was told to sit and wait on a stool in the hallway! Someone showed up 5 minutes later and drew my blood but didn't bother telling me where to go next. We wandered back to admitting to ask "what now?" and they sent us up to the short stay surgery unit. That's where things got worse. I was given a gown, told to undress and put it on and then the nurse came back to take vitals. Another nurse came in to start my IV and she jabbed my hand so hard that I screamed in agony and began sobbing from the pain. I could not believe she hurt me that badly. I'm not a wimp either - I've had soooooo many IVs, blood draws, injections, etc. over the past 2 years and never before has anyone hurt me like that before. And, despite the agony she put me in, she still didn't even manage to place it correctly and had to remove it. I told her to not touch me anymore and with my mom at my side we discussed what we thought we should do. It was clear to both of us that the staff at the hospital were not highly skilled and didn't seem to care about the patients because not a single person looked me in the eye or asked me how I was this morning. No attempt was made to put my mind at ease about what I'd be having done. I had no confidence in their ability to keep me safe or comfortable so I decided I couldn't go through with it and to leave. I got dressed, informed the nurse we weren't staying and we left. On the way out of there, my mom reminded me that Bernie Siegel, the physician and author of the books I've been reading, would have recommended I leave - he stresses the importance of taking charge of your care and following your gut instincts and making sure you have confidence in your healthcare providers. It was good for me to hear this reminder because I was feeling as though I had overreacted, that maybe I should have sucked it up and gotten it over with. But as we continued to talk I felt better and better about leaving. If they didn't care enough about me to look me in the eye, greet me with compassion, or do a solid job starting the IV, then how could I trust them to monitor my vital signs after surgery, or to do the right thing for me if things went wrong? If they didn't bother taking the time to give me proper instructions prior to my arrival, how can I trust that they themselves are adequately prepared for their part of this process? If they don't take their jobs seriously, patients are at risk. So we left. I called Dr.Glaspy's (my oncologist) office and requested the name of a surgeon at UCLA to have it done there. Got a name, called his office and spoke with his staff. Got their fax number so that the local oncologist can fax the order to him instead. It looks like I'll now have it down on the 13th down at UCLA. When I had my bilateral mastectomy at UCLA I had full confidence in the nurses and doctors there. Their admitting process was smooth and at no point did I ever feel any worry that I wasn't in good hands. That's where I need to be. I know that the local doctor that referred me to the doc for today's procedure has confidence in the guy that would have done it today, but I don't know if he has any idea what a crazy mess the hospital staff is over there. I plan to inform him. I also plan to write a letter to the hospital we were at this morning to inform them of what happened and how it made me feel. I am so grateful that I was blessed with courage and guts to speak up for myself. I can't imagine how awful it must be for those that aren't comfortable speaking up when they feel things are not OK. Patients have rights and unless you exert them and trust your gut, you can find yourself in a lot worse pain or trouble than you started with. I'm glad I trusted my gut and walked out.


  1. Julie - What you went through this morning is absolutely ridiculous. I have never heard of such inept staff. You definitely need to let the local Dr. know about what you went through. I would report the hospital to their governing body - just a thought. I am going to attempt to call you today.



  2. I'm glad you left. The last thing you need is to feel that your health is jeopardized right now by incompetent medical staff. Good for you for sticking to you guns!!

  3. If you have that uncomfortable feeling in the pit of your stomach all pre-op, imagine how "uncomfortable" things would have potentially become had you gone through with the port insertion today! Julie, you made a solid, sensible decision to leave. Michele is right, too, that someone higher up should know about everything that happened today. Let them know that they lost "business" as a result of their nonexistent pre-op contact, the ineptness of the IV nurse, and overall absurd lack of common courtesy and communication with patients. Advocacy is important and you, Julie, are the poster-woman for patient advocacy! :) Sounds as though they are in need of an overhaul and/or some basic training. I admire your "pair" as always, Julie!

  4. Nurses are not known for their bedside manner in general, but that one sounded like she takes the cake. She shouldn't even be in her profession. I'm glad you walked out. They sounded horrible. As someone who has difficulty standing up for herself in general, your posts really encourage me. Thank you!

  5. Were you at an Army hospital by chance??? Sounds like it! LOL My dad who is a retired police officer used to call that feeling "a danger alarm". Its great you showed them!

    Thank you for the beautiful card BTW! Loved it! It helped my last few days of grouchiness! :o)

  6. Hi Julie,
    As you know,having been there done that, I know a simple "how are you doing" works wonders. It is the most simple question, and it made me feel the best.
    You were so totally right to act as your own advocate and bail out of there. Who the hell knows what would have happend if you let them proceed with whatever it was they had planned. (Vasectomy?)

    If you want to vent, we are all there for you. You know that!! I'm so glad you had fun in the kiddie pool with Cooper and your Mom. These moments could be your visiulation tools. I remember thinking that the weed in front of my house could outlast me....IF I LET IT!!!! That weed is dead. Just like your cancer cells will be. Go forth you winner.
    Greg and the Girls

  7. I'm so sorry you had to go through all that. You absolutely did the right thing by walking out and opting for comfort and peace of mind. Good for you! The last thing you need to worry about is incompetence. You're so brave, and you will get through this! I've been thinking about you a lot, and I will continue to pray for you & your family that everything goes smoothly at UCLA.

  8. Good for you! You're important, your comfort and feelings are important, and don't take any crap from anybody!

  9. You are NOT a number and if your gut tells you to leave, you should leave. Period. End of story. Your gut instinct is Nature's warning bell and you need to listen to it! I'm so glad you left!