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Who's in charge?


Guest vanessa

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Guest vanessa

Hi all - I'm hoping someone can give me a little insight as I'm relatively new to this. Since my mom's diagnosis last year, this is the first time she has been hospitalized.

She went to the emergency room with chest pains a few weeks ago, and they sent her home saying it looks like acid reflux and "nocturnal" asthma. Less than a week later, she went to her GP with more acute pain, and they sent her to the Cardiac Care unit at Indianapolis University Hospital.

Meanwhile, her oncologist was never informed. The doctors never contacted him to get an overview of her case. They inserted a catheter in her chest to drain fluid from the pericardial sack and then had to perform surgery to put semi-permenent drains from the sack out of her body. Her oncologist did not know this was going on until I had him paged.

In addition, on the day before we thought she was getting discharged, the cardiology team found that fluid was also building up around her lung, so inserted a chest tube to drain that. Still, the oncologist was not called.

I understand the oncologist does not specialize in these other areas, but can't there be room for error if they are not in direct contact with her main doctor? I feel like I'm being neurotic when I call the oncologist to keep him in the loop -- he keeps saying he will wait to decide the next course of action until she is discharged from the Cardiac unit. Meanwhile, his office is across the street. I just don't understand the chain of command. Any thoughts?

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Vanessa.

I can certainly understand your frustration. I am glad that you asked, because I don't get it either!! I can never figure this out. I liked that in oncodoc's practice, he said that once they were dx with cancer that he was then the primary doc and was in charge. I don't know if that is the way in all practices or not. I would also like to know.

In the meantime...holy buckets. Looks like your mom has been through the wringer. Are you still separated by distance?

Cindi o'h

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Guest vanessa

Thanks - Yes, lately she has been through the ringer. She was lucky in the beginning -- as Iressa was the first recommended treatment. Hopefully she will be a candidate for Tarceva or Alimta or one of those.

Yes, we're still far apart. All this actually happened in the middle of a family vacation. She was supposed to fly out and join us in Seattle, luckily she went to the doctor first. I spent the last 5 days with her but had to come back to work for now. Leaving her yesterday broke my heart but she was already on the road to recovery. I'll fly back once she meets with the Oncologist. It's really hard to be so far away. Although, my sister is staying with her so she is not without a family member.

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Sorry your mom is having so much trouble. As to the question of who is in charge, the answer is "the patient". In case the patient cannot, then the primary caregiver. We have found that WE have to be sure everyone is in the loop

We were fortunate in that our GP usually coordinates things for us, and he told us when Lucie was diagnosed with LC that the medical oncologist would now be the focal point. And he has been. We still have to help fill in the gaps at times. That is one reason why each patient needs a proactive primary caregiver. Hope things smooth out soon. Don

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Vanessa, I went through that same ringer, and finally decided that I'm in charge! Seriously, I keep copies of all scans and tests, and a comprehensive history of my lab results. I know better than to "just call us anytime" like the Oncologist's office says, because it takes hours for someone to even call you back. I figure if it's that bad, I'll go to the ER and have them paged. To heck with their lousy answering service.

I got tired of being shuffled around from one doctor to another, namely when I had a gallstone and a stopped up bile duct and was miserable for weeks -- way longer than I should have been.

Now, I stay more watchful about who is doing what, and make sure that I always have copies of scans and tests (I keep this all in a notebook) in case I need emergency care or have to go elsewhere.

Much luck to you -- making your way through the medical care maze is something we don't always count on until we're already knee deep. I think once they know you are paying attention to details, they may pay more attention themselves.

My best to you and your mom.

Di

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Guest vanessa

Di - what an obvious and smart thing to do. (although I hadn't thought of it) I am definately going to have my sister work on getting copies of everything this week while she is sitting in the hospital with my mom. It will make us all feel like we have a little more control over what is going on.

Thanks!

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Vanessa - I think that will help you a great deal. Sometimes it will seem like it's more trouble than it's worth, but then will come that ONE time when having all those records helps a lot!

Beware though -- some places will try to charge you an arm and a leg or two for copies, yet they will send them to a doctor's office for no charge. (Go figure - the one place who could afford to pay for them 25 times isn't charged, and we pay through the nose. :roll: )

When your mother goes for scans, be sure and tell them when they start that you want a copy on CD to take with you. If they make you wait more than 20 minutes for it, tell them you'll come back and pick it up. That has helped a few times too, just to make sure that radiologists have the most recent scans as a point of reference.

Good luck!!

Di

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You can not be charged for medical records if you state on the

ROI form

The purpose of the release is

'To Hand Carry for Further Care'.

As long as the records are for furher care they are free................you needn't state when you may be seeking the further care...........just that that is the reason for the request as opposed to

'for insurance purposes'

'for an attorney'

P

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I guess I'll have to inform the hospital where I get my copies of stuff done there. Their policy is that they will send them directly to another physician's office, but if I request them and pick them up - for any reason - there is a charge.

Interestingly, they get all kinds of stuff for me whenever I check in for something, and I have to initial/sign 47 pieces of paper about privacy rights, then when I got copies of my records ($195.00 the first time around) about 20 pages were someone else's records. So much for privacy. I at least got a credit for the extra copies.

Also, some of the places I go want to see a drivers license, and then make a copy of it, and I've stopped letting them do that every time. I've told them that if they have it once, they can pull out their record and make sure it's me, because I'm not copying it again. (That's a good way to suffer identity theft, and we think how my sister's business info got into the wrong hands a few years ago just after she spent a week in the same hospital.) At the radiation oncologist's office, they took their own picture and it was on the front inside cover of my chart so every time someone opened it, they could ID me quickly. Smart. The others are just lazy, but I'm not playing their games any more. After all, who is going to steal someone's identity and undergo chemo, radiation, or one of the other procedures we all have to go through? Only someone verrrrry strange!

Di

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Wow Vanessa, you poor mom. Goes away for vacation and all this happens. This is so stressful, not to say hurtful for her.

Good idea about the records.

Keep us updated on her progress.

Maryanne

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Hi Vanessa: I hope your mom gets out of the hospital soon and can start a new treatment.

Whenever I have scans or whatever, I always ask for a copy of the report be faxed to my gp. they give me a copy whenever I ask for it. I keep a notebook too.

Your mom has my prayers.

Don M

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Three weeks ago our primary care doctor said that we might need a release from him for Gary's surgery.We went to moffett monday for his pre op and nothing was said about a release from our primary. I then called when we got home our nurse that we will use at moffitt for the surgery and she said isn't your primary your oncologist? I said our primary is according to our ins. our gp so she said for him to fax over a release. Gary got to see our gp yesterday who just asked how he felt and then gave us the release. So i guess I will also ask our oncoligist who is gary's primary?

I also am against giving out our drivers lisc all the time but when I said for them to look at their records they said they had to see and copy it all the time. I just thought it was this state since even if we go to the vet they will copy our drivers lics. Again back in calif it is not allowed because of identity theft.

Lorrie

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Lorrie, I don't know about state law here regarding copies of DLs, but it is my personal policy that I will NOT do it. If the hospital where I go doesn't like it, I know and worked with their CEO, so have no problem marching up to his office to explain why. If that doesn't work, there are plenty of places in this city where I can go for treatment, and I'm sure any of them would be glad to get the big bucks paid out by my insurance company every year.

This must stop, IMO. And I'm stopping it myself. My SS number is for social security, and I don't give it out much any more either -- only if necessary. Same with the DL number and making copies. Until they get a handle on identity theft and it doesn't ruin people's lives, I just won't be so loose with personal information.

But then, I'm a stubborn ol' coot anyway. Go figure! :wink:

Di

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vanessa,

the lack of coordination can be VERY frustrating. we just experienced a little of it with my mom, until they tracked her surgeon down on vaca and he gave the last word.

all the concrete suggestions above sound good, and I encourage you to "be in charge", so nothing falls through the cracks. it's what I've learned I have to do. the distance makes it more challenging, for sure, but between you and your sister, or others, you can do it.

hang in there, and I hope mom is feeling better.

xoxo (your neighbor)

amie

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Lorrie, I don't know about state law here regarding copies of DLs, but it is my personal policy that I will NOT do it. If the hospital where I go doesn't like it, I know and worked with their CEO, so have no problem marching up to his office to explain why. If that doesn't work, there are plenty of places in this city where I can go for treatment, and I'm sure any of them would be glad to get the big bucks paid out by my insurance company every year.

This must stop, IMO. And I'm stopping it myself. My SS number is for social security, and I don't give it out much any more either -- only if necessary. Same with the DL number and making copies. Until they get a handle on identity theft and it doesn't ruin people's lives, I just won't be so loose with personal information.

But then, I'm a stubborn ol' coot anyway. Go figure! :wink:

Di

This state has no regard for privicy. When we first moved here last year we needed to take our three dogs to a vet.The 1st vet needed to see and copy our dl and we said no. they said it was the law and if we wanted to ask we should ask the sheriffs dept which we did. They said it wasn't the law but that every business requires it.We then tried another vet who said the same as did the thrid vet.I will never give my ss # either and I go one step further. When we go out to eat I never let my credit card out of sight. I make sure I pay the bill and never give the waiter my credit card to take out of my sight. Sometimes it is a hassle but worth piece of mind.

When we lived in Ca I worked in decorating and needed to see credit cards and checks all the time. In the early 80's we could even write dl # on the check but in the early 90's all we could do was look at someones dl to see if it was up to date and a credit card was always handled by the customer until I would slide it through the machine.Oh well I quess I am really off topic. Sorry

Lorrie

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