TJ903

Last Chance Appeal Hearing for SCOT

19 posts in this topic

I usually just read everyone's posts to boost my moral and get my daily dose of vicarious hugs, but today I am frightened. Tomorrow at 1:15 I face a panel of seven who will decide whether or not I can participate n the SCOT study. Does anyone have any last minute advice for me? I've killed a bunch of bushes in paperwork and am prone to tears if I get frustrated, angry or just plain tired. I have letters of support from six of my various doctors but these two words "experimental and investigational" will be my downfall. They want information from sources they (my insurance) company deems worthy of considering and they will decide if it applies or not.

 

There is no time left for anymore research, my brain has shut down in mutiny and at this point I am ready to crumble... :(

 

Thanks to all who have saved me from my sadness on a daily basis! TJ :)

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TJ903:

 

I have no knowledge of the study that you refer to, but the tone of your post is tugging at my heartstrings.

 

Tonight you are in my thoughts.

 

 

TJ, what will be will be; we are given some heavy blows throughout these days and with this illness. Please be comforted that we are here for you. If you're up at 2,3,4 in the morning, post us because you know what? We're up too. and if you can't wait for the moderator to view the post, do a personal email. Mine notifies me when they come in.

 

You are not alone, please let us know the outcome. Thinking about you..

 

Linda


Tru

 

It is what it is...........

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I wish I knew what to tell You. Please know that You are in my thoughts.

I hope things turnout well for You.

Sadie

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Thanks guys! :) especially for keeping me in your thoughts. That helps tremendously! My wonderful hubby has just informed me that regardless of what happens-we are going to Charleston, SC to MUSC for treatment with the SCOT trial doctors. It won't be the trial, but a slower course of treatment. At least it will be something, I just don't like this daily grind- just want it to go away....

 

Thanks again!! TJ

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TJ-

 

My thoughts are with you tomorrow. The SCOT study is so important, and has the potential to help so many. I truly hope that it all goes well for you!

 

Take Care,

Bunky

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TJ,

I hope you get a good night's sleep so you'll be alert for tomorrow. I'll have my finger crossed for you.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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TJ,

Good luck!! We are all rooting for you! Please let us know what happens...hopefully it is great news!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Best of luck to you TJ! Let us know how it went.

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TJ,

I feel for you. I was denied by the my insurance co. for the SCT at Northwestern. It was so frustrating and hard not to cry when talking to BCBS. I remember at the time almost feeling like BCBS was condeming me to die. I don't have any great advice for you. I know one thing we did was try to make sure that the BCBS consultant was a Rhuematologist that had good knowledge of sclero. Also, Dr. Burt at Northwestern had conference calls directly with the BCBS consultant/representatives in order to directly answer there questions. In the end I was denied based on the SCT being experimental, however, I felt that Dr. Burt did his best to get approval. In my case, because my companies plan was self-funded, the issue of medical necessity was not a factor in the denial -- just if the procedure was experimental. The only hope for me was if BCBS had approved someone else for a SCT in which case, they could not have denied me as the prior approval would have set "prescendence". But BCBS aren't going to readily give you this info, so unless you can come by it some other way -- maybe by going to court -- or if your doctor knows of someone with a prior approval, it will be difficult to get the info under the HIPPA laws. Good Luck. Wishing you a speedy approval. Gidget

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I've just gotten upright after spending a couple of days down and out. I've no more tears which my husband says is good because the more you cry the less you pee!!! They said we'll let you know in five days, but we already know the answer. I am here at Charleston, SC to see Dr. Brown to start treatment. My body is so rigid and my skin so tight, the pain is awful. Thankfully my husband used to work in a nursing home and can help with this stuff.

 

Thank you everyone for the uplifting comments- this group is the greatest. TJ

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Hi TJ. It is so wonderful to have a loving husband who supports you and your decisions and has the knowledge to help with what needs to be done. With him by your side and your true internal fortitude... welll, that's a winning combination for you both.

 

I will hold you in my thoughts as you walk through this.

 

Soft Hugs,

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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TJ, I was so happy to read that you went on to S. Carolina and started your treatments. Sometimes one would be willing to spend their life paying for the possibility of health, or at least a healthier body. I wish you the best and I hope this treatment series works for you. Keep us informed on your well being. I hope the pain can be brought to a minimun quickly. Small warm hugs sent your way. No more tears, unless they are tears of joy. Then you won't mind the puddles. Best Wishes.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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