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miocean

I Should Have Seen It Coming

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I was scheduled for a secretion selection test yesterday by my GI doctor due to high gastric serum levels and an elevated CEA. I have never had colon cancer and my nephrologist has questioned why she is using a CEA test as it is not a diagnostic tool. My GI doctor said the test is for benign tumors than can turn malignant and since it is just an injection of the hormone into you and subsequent blood draws I agreed to the test.

 

To make a long story short, I spoke with the both scheduling department and the doctor the day before the procedure. I showed up at the hospital in the morning. It took two tries to get the IV in. Two and a half hours later I was told the drug for the test was coming from the pharmacy, then doctor came and questioned why the test hadn't been started, returned to say the pharmacy was mixing the medicine, and then showed up and said, "You won''t believe it." I looked at her and said, "They don't have the medicine." Bingo. She was very frustrated but had to go on to her other patients who were there for tests and told them to bring me a breakfast tray. 

 

I am amazed at how calm I stayed. I am so used to things going wrong and therapy really does help! I asked to see the manager as I did not want to get billed for anything and was told she was going down to billing to make sure. They brought me a breakfast tray with a bagel, banana and coffee and I asked if I ate it would I be charged $5,000. :D I then requested to see the manger herself, got her card so I have her name and went home.

 

In the meanwhile, I had my pulmonary tests at my scleroderma hospital 10 days ago and still haven't heard from my doctor even though they told me she would have the results in a few days. I am concerned because I desaturated on the 6 minute walk test very quickly, where usually it is in the 3-4 minute mark and I have been shorter of breath. I have an email in to the doctor.

 

Keep in mind I live in a part of the U.S. where there are good medical centers. I can't imagine living where you don't have access to them if this is what I encounter here.

 

Another chapter in 'How I Fell Prey To The Medical Machine And How It Killed Me."

 

miocean


ISN Artist

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Hi Miocean,

 

Congrats on staying so calm; I suspect I would have been tearing my hair out with frustration!! It's worrying enough to have to prepare for any medical procedure, without then having the let down of not actually having it done!!

 

I do hope that when you eventually get your pulmonary tests results they will be okay.

 

Best wishes,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hi mio,

 

Frustrating is putting it mildly, you did well to keep your cool.   I too have been at the mercy of the Hospital system here, and am as always so thankful for the way it works for us.

 

I was in from Monday until yesterday and then sent home with a 'plan' mainly because the procedure they want to use on me, Balloon Enteroscopy, is done by one person only and he is on holiday :rolleyes:   Just hope it is a 2 or 3 week summer holiday and not a trip to Europe.

 

Best wishes to you and everybody else.

Judyt

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How annoying is that! I don't know how you managed to keep cool about it all! So are they going too reschedule the test for you?

 

Buttons

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The test will be rescheduled, but I don't know when. It must not be too important if my doctor isn't pressing for it to be done immediately. 

 

I had a response from my scleroderma doctor about my PFT's. Since the numbers went down she wants me to have a CT scan. She is "trying to find" the 6 Minute Walk Test.

 

miocean


ISN Artist

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Hello Miocean

 

My first hospital stay was for Iloprost and supposed to be over 5 days but ended up being 6. I arrived on the ward as planned and you guessed it, no Iloprost. Really? Pathetic.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

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(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Miocean,

 

What a zoo. I admire your calmness in the eye of the storm. So, have you had the secretion test yet, or gotten the results of your lung test?

 

Sometimes I think the only way to approach anything is to assume that nothing is ever going to go right, and then just be pleasantly surprised when things by some miracle go smoothly.  And that seems to be the approach that you took!

 

I have to keep reminding myself that the purpose of medical care is to heal. That's a real challenge when stress can topple our applecart so easily, isn't it?  Thank you for modeling healthy patient patience for us. Next time I'm left waiting and wondering, I'll think to myself, if Miocean can handle that, I can handle this!

 

But meanwhile, do you have any results, yet, already?!

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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:emoticon-dont-know:  :emoticons-clap:  :terrific: Hey I know...what would Miocean do!! :emoticon-dont-know:  :emoticons-yes:  :terrific:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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