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For first time readers...my journey begins here: THE VERY FIRST BLOG POST (CC1)

Meaning of life

"The meaning of life is to find your gift. The purpose of life is to give it away." ~ Pablo Picasso

Saturday, December 17, 2011

The Cancer Chronicles 42

Appointments; Lack of Communication and Respect!


I booked my appointments with MD Anderson back in early in the year. After finding the lump I emailed my doctor on October 25th to inform him and also ask that I be informed if my schedule changes because of this, to please inform me before I book my tickets around any changes.

On November 3rd I booked my tickets from San Francisco to Houston after double checking my schedule on the MD Anderson patient web site. I only had appointments booked December 12 and 13. So, I booked my flight to arrive on Sunday the 11th and depart Wednesday the 14th. At the same time I called the American Cancer Society to help me find a room at a discounted rate. They are very good with this if you give them enough time and sometimes get rooms for free.

With my flights and hotel booked I was feeling very confident all would go well. It hasn’t always in the past. On November 29 I was looking over my billing invoices on the MD Anderson web site when on a whim I decided to check my schedule again. SOMEONE had changed my schedule without informing me. There was no message left on the MD Anderson web site, no email, no snail mail, and no phone call. If I just didn’t happen upon the schedule change I would have never known about it.

The problem was, someone moved a doctor’s appointment to December 14th, the day of my departure and there was no way to make it unless I changed my flight and called the American Cancer Society to change my hotel arrangements. I checked with the airline and they wanted $150 change fee plus $57 more because the ticket price had gone up. This on top of the already pricey $550 plane ticket, plus $50 in baggage fees. Now, I don’t have a problem if it was absolutely necessary and vital to my health, but it was NEVER even discussed with me and my appointment was scheduled earlier in the year and they had plenty of notice when I called asking if I they needed me longer given the lump on the back of my neck. I really have a problem with some unknown person forcing me to spend my money for no real reason and with no communication.

It's not like I live nearby and can just make a change easily. I have been going there for four years. I have spent a lot of my own money that insurance doesn't cover, on top of the $250,000 that's been dropped in that hospital to cover my all cancer bills. You would think being an out-of-towner and spending that kind of cash would make you a priority customer. Anywhere else in the world it would, but not at MD Anderson. I'm a pee-on that doesn't even deserve a real person communicating on the phone and expecting me to fork out even more money without explaination! I'm sorry...BULLSHIT!

I rifled off a terse email to Dr. E. Kim requesting he forward it to whoever made the changes to my schedule without my knowledge or permission. I sincerely explained I have no grievance against him…after all, gotta love a man that helped save your life. He quickly returned my email explaining, “It happens sometime.” Unfortunately for me it has happened oh too many times in the last 4 years and I’m getting tired of the lack of communication and respect.

Dr. Kim informed me that he was on call 24-7 for the next few weeks and that he would pull himself out of a call to see me and to accommodate my schedule. His appointment with me was changed due to this on call status. He was the only one who communicated this to me. I have to question, why someone would be placed on call when appointments were booked with this doctor six months ago? Again, this is not the doctors fault. The hospital itself is at fault. I very much appreciate Dr. Kim doing this and at this time I felt everything was a go and I no longer needed to worry about my appointments. WRONG!

Days before I’m scheduled to leave I get an automated phone message reminding me of my appointment at 6:00 AM on SUNDAY December 11. WHAT??? When did that change? Someone AGAIN changed my schedule at the last minute, 3 days before I’m scheduled to fly to Houston without any communication other than an automated phone message?? I was pissed! I don’t even arrive until 3:00 PM that day. My flight and hotel are already booked around my original schedule.

On December 8th, I rifle off another email to Dr. E. Kim and a nice long bitchy one to the scheduling department on the MD Anderson web site. I even contact my friend Julie who works at the hospital as the Senior Clinical Dietitian. She was the one who first help with to set everything up and learn how to use my feeding tube. I was so distraught I wanted to inform EVERYONE that enough is enough.

Julie recommended I seek the help of Patient Advocacy, a division of the hospital that helps patients if the run into problems that can't get resolved. If you recall back when I first began with MD Anderson, I used them. I was pretty much given a lollipop to calm me down, pacify me, and an avenue to blow off steam, but nothing was truly accomplished. I know the problems here are much bigger than Advocacy and from experience I don't have much faith in them anyway.

Because of this I have sent an ultimatum. Either accommodate my original schedule, pay for my flight changes, or cancel all my appointments and get my records ready for transfer. I’m serious about going to another hospital. Every time I go there my schedules get screwed up. I’m now looking at the services that Sloan-Kettering has to offer as I might give them a chance. Not because of my doctors, because nobody at the support staff level can make a phone call to communicate changes and understand the aggravation and money it costs to make these changes…not to mention letting the patients know!.

Why is it, when you are kind to incompetent people you get nothing done, but when you become an asshole they all become smart? 6:40 AM on Friday the hospital calls..."how soon can you get to the hospital on Sunday?" after getting up at 3 AM, flying 5 hours with a lay-over to Houston, taking cabs, skip checking in at hotel, FASTING FOR 24 HOURS, and get to the hospital ASAP for blood work, only to be asked to be at the hospital... at 6:00 AM on SUNDAY? When two weeks ago this was scheduled on Monday AND when asked WHY THEY WOULD MAKE A CHANGE LIKE THAT WITHOUT CONSULTING ME...SHE SAID...SHE SAID..."""""We must have made the change to accommodate another patient"""" WTF??? Did I mention I booked my appointments 6 months ago? WRONG ANSWER!!! Now I’m more than pissed.

After receiving 4 phone calls, appointments have been moved back to normal. The schedule is still screwed up, but it fits my time frame. But when I pointed out that blood work needs to be done first BEFORE my CT scan and they had me drawing blood dead last on the schedule...there was a long pause (crickets) on the phone. Then I got...OK just come in around 7AM (my schedule says 6AM) get your blood drawn, wait about 45 minutes for results and then go to your CT scan, we will fit you in.

They need to test BUN (blood urea nitrogen) and Creatinine blood levels before a scan. Blood has to be drawn FIRST, mostly to make sure the patient's kidneys are properly functioning and can take the radioactive dye they inject...but what do I know about that, right? I'm just the patient.  I guess I'm really being too picky at this point huh? It's really scary when you begin to think you know more than they do! Knowledge is a dangerous tool that could save your life...remember that.

Wait until you hear what comes next as I descend upon MD Anderson with an attitude! Stay tuned.

Peace B

***The saga will continue after the holiday! Merry-Happy to all!


Maureen said...

I'm so sorry you have to deal with all the BS on top of dealing with your health issues. It is indeed a bunch of bullshit and MD Anderson should be ashamed of themselves.

I can't wait to hear how you gave them the what-to-for with a major attitude!

I'm sure your chart is marked as you being from out of town, so there should be, needs to be, better communication from THEM.

I hope in the long run everything worked out ok. And how did your check-up go.

Prayers and {{HUGS}} to you.


Leah said...

You better hope they know the difference between a thermometer and a rectal exam or you will have worse troubles!
The hospitals focus too much on business instead of on customer service. For some reason, they don't realize you need one to keep the other.
I am praying your story ends well. Given the beginning, I am sincerely worried. Please let the tests turn out well so you can enjoy your holidays.
Love ya lots,

Words To Live By:

"The best way to find yourself is to lose yourself in the service to others." -Mahatma Gandhi