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Biomarker for Diffuse Scleroderma skin has been discovered!


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You'll have to wait until your next appt to discuss that...


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#1 Jordan's Mommy

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Posted 21 March 2008 - 05:33 PM

Hi All,

So I'm a little bothered with a phone call I received from someone at Children's Hospital where Jordan is a patient. Maybe I'm out of line--please be honest!...

Jordan had her labs done about 10 days ago. Having several vials of blood drawn from a 7 year old is never pleasant to begin with, and waiting for results is no picnic either. After 7 days, I called to get her results--no one called back. I called again the following day and left another message. The lady called back later that day and told me that Jordan's rheumatologist looked at her labs, and everything was fine. "And by the way, we usually don't discuss lab results over the phone--you can discuss them with your doctor at the next appointment."

Well, that had my blood boiling!! I told her that Jordan's appointments are 4 months apart, that we are going to see a specialist in New York (we are in So Cal) and that I needed to know in order to present a clear picture to the sclero specialist. We all know doctors can make mistakes, overlook important information, etc. Calling for the results is my way as a parent to make sure there is no change in her disease, and making sure that her results have actually been received and reviewed by the appropriate doctor.

Am I asking too much? Is a little peace of mind that extravagant?


Anyway--Have a great holiday--we leave for New York on Sunday. I'm excited and nervous. Wish us luck!

jennifer

#2 Sweet

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Posted 21 March 2008 - 06:20 PM

Jen, you are absolutely NOT out of line. My guess is the person you talked to has no idea what your schedule holds for appts with Jordon. She's not seeing the big picture. Just make sure you get a copy of the labs. If you have any questions, call the doctor back and insist on talking with him/her, and/or throw them out to us here.

Hang in there love,
Warm and gentle hugs,

Pamela
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#3 epasen

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Posted 21 March 2008 - 09:25 PM

Jennifer, I'm with u and Pam! U really should get those results. Good luck and take care, Emmi

#4 jefa

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Posted 21 March 2008 - 11:53 PM

Hi, Jennifer. It is frustrating, but the world is full of people who are frustrated by the constraints of their own jobs and feel they must follow the written procedures exactly. Who knows, she may have been shouted at by someone for giving out the results over the phone. You have enough to worry about without letting these little things upset you.

Have a great time in New York. I hope your visit with the doctors is productive.
Warm wishes,
Jefa

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#5 janey

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Posted 22 March 2008 - 04:34 AM

Jennifer,
Call the office back and ask them to send you a copy (fax or snail mail - either one). You may have to go through "medical records" to get a copy. Sometimes I've gone through my doctor's nurse. I ask them to have the nurse call me and then I request a copy of the test results through her. Works every time. Be sure to mention that you need a copy for the specialist in NY. Four months is way too long to know the results of lab tests!

Good luck! When does Jordon see the specialist?

Big Hugs to you both,
Janey Willis
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#6 relicmom1

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Posted 22 March 2008 - 06:06 AM

Jennifer, I agree with you. I worked in a Primary Practice Dr.s Office for 25 years. We told our patients that if they hadn't heard from us in a week, to call, sometimes the lab would not send us the results and the only way we could catch it is if a patient called for the results. My primary care physician now automatically mails a copy of the results with written instructions if there is a change in meds. I also know what it's like to have a child needing labs. My daughter was diagnosed with Itopathic Thrombocytopenia (low platelet blood count) when she was only 9 months old. She is in remission at this point (she's 18 years old now), but it has flared a couple of times. Once she was 7 and she had to have blood drawn everyday for a month.And no, it's not fun. I wish you luck with your appointment in NY!
Peace :)
Barbara aka relicmom1

#7 Sheryl

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Posted 22 March 2008 - 06:06 AM

Jennifer, I am wishing for you and Jordan a good experience while in New York. I hope her doctor's help clarify things for you and find things that with benefit Jordan. Hopefully, they won't have to re-do the blood work all over again. Have fun if you can while you are in New York. I don't know if they just got the snow we got last night or not. We have 6 fresh inches. It is pretty and very cold. Let us know of any developements when you return home. Sheryl
Strength and Warmth,
Sheryl

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#8 Margaret

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Posted 22 March 2008 - 07:52 AM

Hi Jennifer ,

Best of luck to you and Jordan in NYC. I hope the weather warms up for you......our spring has not started off on a good start here in the east. We had 4 " of snow last night here in central Pa.

As for doctors' offices.....the other 'thing' that REALLY irks me is them charging a dollar a page for copies of G's lab work. Like they don't charge enough for the office visits!!!

Enjoy the sights!!!

Take care, Everyone.
Margaret

#9 LisaBulman

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Posted 23 March 2008 - 12:51 AM

Jennifer,
Definately get a copy of the results to bring with you. Being a mom with a child who has an illness is so very difficult and having to travel to a specialist out of state can make things even more stressful. Try to focus on your trip and have fun while you are there! Let us know how everything goes!

Hugs,
Lisa

Hopefully you'll have good weather in NY. We were there a few weeks ago and it poured the whole time we were there!!
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