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Just got rug pulled UPDATE.....

ddpekks's picture
ddpekks
Posts: 162
Joined: Sep 2011

11/7 PET scan after year fighting colorectal cancer.

11/14 Chemo doc says husband has new liver/lung/prostate cancer, must start different chemo right away. We make appt. with Onc.

11/17 Onc concurs, says it's inoperable, chemo is only hope of buying some time. We make appt w/surgeon for port.

11/21 Surgeon says "wow, this looks bad, we must get started w/chemo". Will get authorization from insurance and schedule port, probably 12/9.

12/9 Husband calls surgeon because we heard nothing....they are waiting for authorization from insurance. He calls Chemo doc who advises him to call insurance. He calls insurance who says "we faxed that on 12/1" to primary care doc to sign off on. Calls primary care doc who says "we faxed that on 12/2" to surgeon. Calls surgeon back and demands to talk to someone else who says "oh, yes, we have that. We will schedule your port at hospital and call you back." He waits from morning till afternoon, calls back again and they say "why, yes, that's scheduled for 12/15, thought someone called you back".

HOLLY CRAPPIT, BATMAN..................

This isn't getting the oil changed in your car, for God's sake. This is someone's life.
Kinda makes ya go hmmmmm. Guess the patient is the only one that seems to care.

I feel better now.....I've screamed out loud.

Deb
******************

You won't believe what happened yesterday (Monday 12/12)! Husband had blood work appt w/chemo doc at 1:45 PM. I pulled my back out and left work cause I was so miserable and got home around 1:30 PM. The phone rings, it's his chemo doc's office asking me when we are going to start his chemo because their records show he now has a port. Now, remember, he doesn't get it till 12/15 (Thursday). I'm baffled, trying to explain that he does not have a port yet and getting kinda pisthy with her because you "freaking drs don't communicate or even write notes in the file when we call you". Then I hear my husband's voice in the background. I say to her "why don't you turn your a$$ around and ask him? He's standing in your window." I immediately appologized for my tone and language (though I didn't mean it) and told her I was frustrated with this whole thing.

When he got home he said the girl appologized to him for calling me, that she had the wrong file in front of her. He said, "well, if I were you, I'd appologize to my wife, because she's a pitbull with a bone and she aint going to let it go."

Buckle up Sweetheart, cause it's gonna be a long and bumpy ride!
Deb

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

That's horrible. As if you aren't going through enough
already.

Hugs,

Jim

Noellesmom
Posts: 1279
Joined: Aug 2010

Even when we have the best of health insurances, it's up to us to advocate, advocate, advocate for our patient.

Deb, he should never have been put through this and neither should you.

It sucks. It just does.

Barbara53's picture
Barbara53
Posts: 659
Joined: Aug 2009

Unfortunately, to many of these people it is like scheduling an oil change.

When you have a primary oncologist, I suggest developing a relationship with his/her nurse. Get email and phone, and always give your husband's name in the subject line and date of birth in the message. This has been the best mode of communication for Mom and I, who have been negotiating these rapids for 3 years. Good luck with this day.

ketziah35
Posts: 1143
Joined: Jun 2010

I have developed some new variations of curse words for these types of occasions! I will be happy to lend you some. Unfortunately, it takes a bullheaded advocate to push these issues. Healthcare workers are overloaded. Hang in there!

northa914
Posts: 88
Joined: Mar 2011

Thank goodness you advocated on your husband's behalf. While you shouldn't have to bear that burden also, you said it best with the the oil change vs life analogy. My previous oncologist tried to hang me out with my chemotherapy claiming a shortage for my particular drug. After speaking with my surgical oncologist, insurance company and primary care physician, I found out that there was no shortage! He most likely had a cash-flow problem and wasn't able to obtain what I needed. The drug (Gemzar, or gemcitabine)was not listed on the FDA website of drugs that were suffering a shotage and still has not been listed to this day. He hung me out for six weeks until he found out I was seeking other treatment, then decided he would get my meds from my insurance company's propietary dispensary. My primary care physician was FURIOUS and scheduled an appointment with another oncologist stat. I didn't realize what terrible care I was receiving until I went to this new doctor. She draws blood every week to make sure my treatments aren't taking too much of a toll on my body and works in conjunction with my surgical oncologist to ensure I'm getting the best care. My former oncologist NEVER did either; he didn't even weigh me or take my blood pressure, just dispensed my chemo and checked my blood tests when they were ordered by my surgeon. I guess when he had to choose between his pocketbook and my life...you get the picture.

Hang in there, Deb! Keep your chin up. I have stage IV cholangiocarcinoma and wasn't supposed to make it more than three months...and that was decided in June 2010. I feel better now than I did 18 months ago! :)

grandmafay's picture
grandmafay
Posts: 1612
Joined: Aug 2009

I can remember spending several hours on the phone getting approval for one of Doug's drugs. My calls kept getting forwarded. Then they decided that that drug had to come from a different provider. We also got bills from places that were supposed to bill the insurance. We often had to tell the same people multiple times where to send the bill. Tests got lost. Appointments got canceled, sometimes when we had already traveled to get to them. A couple of times we were told we didn't have an appointment while we were standing there with an appointment card in hand. I'm sure these kind of things happen regularly in all kinds of situations, but it takes on a whole new urgency when we're are talking life and death. Hope,the surgery goes well. A port is the way to go. It makes things a lot easier. Now, take a deep breath. Let out a few screams. Then move on. You have much more important things to concentrate on. As my husband used to say when I was stressed about these things, "Let it go." Get ready to fight the next battle. Fay

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Deb
Thanks for the run down and recent update. Holy Moly Batman! It is not unusual that things went this way for you guys. Unfortunately it is the way it all works. I felt like I had to make my own dx for my dad. The Onc actually asked me...are you in the nursing field? You are very knowledgeable! No, but I made plenty of phone calls and follow ups and person to person appointments in my dad's 16 month journey. At one point, we were all snowed in. My dad in the hospital, us at our homes. I demanded my dad be put in a private room, and demanded to have his onc. cell phone #. They gave me what I wanted. Squeaky wheel. His onc was snowed in at his home in NC and called my dad at the hospital in VA. After the phone call, dad was 100% better mentally. Anyway...water under the bridge, but I just wanted to let you know you are not alone in this cancer journey. Keep up the good work, keep being that squeaky wheel. Keep us up to date.
Tina in Va

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

I'm sorry Deb for all your frustration and back (and heart) ache. But you made me laugh out loud! Sometimes people need a verbal slap back to earth! Kinda scarey that they had the WRONG file too! Hubby indeed has a great protector and caretaker. Best wishes to you both!
Cat

terryspencer
Posts: 1
Joined: Dec 2011

I totally understand your frustration. This sort of thing happens all the time but when you have this to deal with also, it is quite upsetting. You will run across some Drs. and nurses that are great and some not so great. Keep a firm upper lip and remember we love you and keep all in our prayers.

Love you lots
Terry

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