Topic: Hospital Communication

Warning:  VENTING!

I am getting so frustrated with the hospital that is involved with my case.  I feel like I am out in left field trying to cope with all the symptoms, pain and downward progression of this cc by myself.

I have virtually no communication from the hospital and at this point don't even know what is normal to expect for communication.

For example I have a major liver resection scheduled for Wednesday, it's Monday and I have had no confirmation on surgery, no time or preparation briefing, no check-in to see how I've fared with this last stent replacement since the procedure was done over a week ago.

I haven't had a sit-down talk with a doctor where they explain what my diagnosis is about, what to expect, how to proceed, who to contact when I'm having problems.....

I'm having all kinds of problems with this new stent, from losing 6 more pounds this week to only peeing twice this weekend and not yet today, to constant pain in the stent area and can't get the saline flush to go through the line......who am I supposed to call?????

I get such a runaround.......the first stent that didn't work took me 2 weeks to get replaced and when I was trying to call to tell them I think something is wrong with it they referred me to a pychologist, I guess they thought I was a pest or freaking out or something. 

I feel like my life is on the line here and I have to beg for help and don't know who I am supposed to call.....it's been so frustrating.  Is this a typical hospital experience or not???

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: Hospital Communication

Hi Rose May. What hospital are you going to? Do you have your own Oncologist you are dealing with outside of the hospital? I would call that ONC and tell him what has been happening. Then I would call scheduling at the hospital, although sometimes they call the day before the surgery to talk to you and to pre register you. You most definitely should not be doing this all by yourself. In rereading your post, it sounds like you don't have your own ONC. If that's the case call the hospital and ask who you can talk to as they certainly should not be dealing with you this way. And no, we had no experiences like this from any of 5 different hospitals over the last 3 years.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospital Communication

Hi Rose May,

I was just resected in February, and prior to surgery I met with the surgeon (surgical oncologist) about a week or so prior to surgery, and then had pre-op registration about 4 days prior to surgery.   It seems very strange that you don't have a pre-op appt this close to you surgery date.

Also, I knew the surgery date and time 2-3 weeks prior to surgery.  Which doctor scheduled the surgery?  That is the doc I would go back to.  Do you know who is doing the surgery?  These are things the scheduling doc should have told you.

I don't know what hospital you're dealing with, but this seems very unusual.  Don't be afraid to call and make some noise.  I know things are overwhelming at this point so close to such a huge surgery, but take control of the situation by making some phone calls to your doctor that scheduled the surgery or to the hospital, or the surgeon's office.  I always feel more in control when I've made myself make the calls, instead of fretting over whatever it is I'm worried about (which I'm really good at!).

Good luck to you on Wednesday!  I am 1 month past my surgery and the surgeon says I am recovering ahead of schedule.  I know you will too.   We are very close in age (I'm 43), so I know you will handle the surgery and the recovery just great!

- Suzanne

Re: Hospital Communication

Rose May,

You have good reason to be frustrated.  You should not have to be doing all of this yourself. This is not typical of anything we experienced.  I agree, I think you need to make some phone calls to get answers to your questions. Just having CC is enough to cope with. You don't need all this aggrevation & uncertainty, too.

I will be thinking of you & hoping for the best.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospital Communication

Rose May,

Venting is good but feeling informed will make you feel way better. Many hospitals don

Re: Hospital Communication

I spent the day on the phone and finally got some answers about the surgery.  I guess the surgery is a go for Wednesday morning, they will contact me tomorrow with a time and pre-op instructions.

I also discovered I had a clinic appointment early tomorrow morning that I was not notified of, so they canceled it (I live two hours out of town).  Also I learned that the NP was supposed to have done a bowel prep, whatever that is, and failed to do that, I never even heard about it. 

I do plan to file a grievance (after the surgery) because I feel my case has been mishandled by the failure in communication.  It has been at cost of my health and mental stress and delayed my surgery for over 2 weeks.

I am hoping for better treatment now that I'll be front and center on the operating table and a little harder to ignore. 

After surgery if follow-up care continues in this vein, I will definitely be looking to change doctors or facilities.

Thanks for your supportive replies, it really helps.......

O my Father, if it be possible, let this cup pass from me; nevertheless not my will but thine be done.  Matt 26:39

Re: Hospital Communication

Rose May,

I am glad that you finally got some answers. At least it is still on for Wednesday, so that is a good thing.   I am also happy to hear that you plan to file a grievance. You have every right to. Waiting until after the surgery is probably a real good idea, too.  I think I saw somewhere that you are being treated at the University of Madison. If it is any consulation, I have heard nothing but good about them.

I will be thinking about you on Wednesday and hoping that everything goes smoothly from here on in.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hospital Communication

Rose May at least you now have some answers. Feel free to come here to vent anytime you want, that is what we are here for.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hospital Communication

Hi Rose being in a different country I dont know how your health system works.It always sounds so complicated-but I didnt like the sound of your symptoms.Fingers crossed for wednesday    Janet

Re: Hospital Communication

Rose May...I am hoping for everything to be straightened out by tomorrow.  Please, keep us posted. 
Good luck,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hospital Communication

Hope all is well for you Rose     Janet  x

Re: Hospital Communication

Rose

I will be thinking and praying for you on Wednesday.  May God hold you in the palm of His hand.

Hugs and love
Michelle

"My dad, Tony, passed away on 4 October 2010, after a 19 month battle with CC"   - I carry you in my heart, Dad, forever.

Re: Hospital Communication

Rose May, we are all thinking of you, praying for you, and sending you healing thoughts.

I know how incredibly stressful it is waiting for surgery-- before my second one, they FORGOT to tell me the CAT scan results so until the day before I didn't actually know if the surgery was a "go" (they couldn't do it if there were more than the three tumors they already knew about.) Why do people do things like that?!

But all will be well, soon.

Hugs,

Kristin (Wisconsinite in exile!)

Peace, hope, and healing to all!

Re: Hospital Communication

Rose May,
Will keep you in my thoughts. Hope you have a very successful surgery.

And VENT away....it always makes you feel better. smile
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Hospital Communication

Good to hear you have made progress! Only one item in your last post casues me concern on your behalf.  Please call your NP and determine if the bowel prep is required for the surgery. You still have time to do this before your surgery tomorrow and I would hate to learn that your surgery was delayed for failure to complete prior admission.

Know that you have many prayers and good thoughts coming your way. Hoping you have the best possible outcome!

Bz