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SqueakyandLiza
(@squeakyandliza)
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December 2, 2019 2:35 pm  

Hi guys,

As I have mentioned before, I am trying to get a second opinion on my situation with a well respected teaching hospital in Portland.  It has taken quite a while going through the referral process, and I have left them a couple messages.  They finally called me when I was in California, to clarify exactly what the situation is and what I was looking for.  They had me give all my info to a registration person and they are supposed to be calling me to set up an appointment.

Here is my question.  When we got home from Portland last night, I had a letter in the mail from them.  It was their privacy policy to sign and return, and then a waiver saying they can use any extra of my tissues to use for research.  I am under no obligation to agree to this.

My first thought is to go ahead and sign it.  If they can do anything to help other people, I am all in favor of that.  Is there any reason any of you can think of that I shouldn't agree to this?  

If there is a concern about them cloning me, well, in my very humble opinion, the world would be a better place with more Lizas in it.  Ha ha ha.  :)

In all seriousness though, if anyone would have any concerns about something like this, I would be happy to hear them.  Thanks in advance.

-Liza
“May your day be bright and your bag be light.”


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Tony
 Tony
(@ileostony)
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December 2, 2019 4:04 pm  

Hi Liza,

 

No concerns here. I would consent. Unless you have some religious or other constraint regarding the use of your tissue or there is some other compelling concern that I'm not aware of, I say by all means. It sounds like that's what you want to do, and hey, maybe they should clone you. :-)

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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VeganOstomy
(@veganostomy)
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December 2, 2019 4:35 pm  

Great for you to consider helping science out! There should be no concerns about them violating Sixth Day laws (that was a movie reference for those who haven't seen this Arnold Schwarzenegger film)  ;) 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
(@dlkfiretruck)
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Posts: 689
December 2, 2019 7:09 pm  

Liza, going on take four here...there is no nice way to put this...but, I would be plenty concerned if I were you. Your  whole body is tissue. Bone tissue, muscle tissue, bowel tissue, vien  tissues, organ tissue and so on. Have they specified exactly under what circumstances they take this tissue under? Are you alive or a cadaver? They need to specify exactly what tissues, and  exactly  under what circumstances, they take this tissue. Does this paper mean "alive only",  or, " dead too"? Unless they specify exactly under what circumstances they take this tissue, you need  to be very careful here. A lawyer giving the paper a read over is not a bad idea at all.

A close friends  grandmother had died and had signed a paper for tissue donation to science they all thought it was for her TB lungs only.   The paper was legal and standing. Her body was donated to science so they could get all the tissues they could to learn from them. When my friend got to her science lab one day as a student doctor in training, she had to leave the class, her grandmother had joined them as a cadaver for her tissue donations. The  family only had a memorial service, no body to bury because of her signing for  tissue donation. Be very careful what papers you sign everyone. The family was  distraught to say the least discovering and then  knowing what was going to happen to Grammas body.

Linda


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sjlovestosing
(@sjlovestosing)
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December 2, 2019 7:19 pm  

I tend to agree with Linda. I would have a lawyer check this out.

Eric, call me naive, but what are Sixth Day laws???


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Dona
 Dona
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Posts: 738
December 2, 2019 8:11 pm  

I signed something similar when I got my colectomy surgery. It was so they could use anything they found out about the state ( of my by then pitiful colin) to further research in the area of inflammatory bowel diseases.  You might check back with them by phone as to what the tissue is for. Thats a far cry from donating your earthy remains to science. Which I would do, but I'm planning on using it all up before my demise.

And yes! If they clone you ...the world would be a better place!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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SqueakyandLiza
(@squeakyandliza)
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December 2, 2019 9:02 pm  

I reread the disclosure and it is pretty clear that they are referring to any samples (blood, bodily fluid, tissues) that they take for diagnosis.  If there is any extra they will store it, but only what is left over after any tests they need to do for diagnosis.

I'm pretty sure it has no effect on if I die.  But to be honest, if my body could help anyone if I die, I am okay with that.  I plan to be cremated upon my demise, so there just may be less to cremate, after removing any usable organs, and any scientific research uses.

Thanks for your input.  I always value hearing all opinions.  :)

-Liza
“May your day be bright and your bag be light.”


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LK
 LK
(@dlkfiretruck)
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December 2, 2019 9:35 pm  

Good job Liza!!! Better safe then sorry all around! I'm glad you checked. It would not hurt to double check with the office also. I hope you get your second opinion soon, waiting like this is no fun!

Linda


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SqueakyandLiza
(@squeakyandliza)
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December 2, 2019 9:45 pm  

Thanks Linda,

I feel like I have been waiting forever for them to schedule me.  My GP first made the referral in September!!  But I definitely am not going to let my current surgeon move forward with anything else until I have had the second opinion.  My aunt went to the same hospital for something that other doctors couldn't figure out, and they were able to help her at this hospital, so I am hopeful that once I get there it will help.  :)

-Liza
“May your day be bright and your bag be light.”


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LK
 LK
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December 3, 2019 5:28 am  

@squeakyandliza

Liza, I think you had mentioned that this particular Hospital is also a teaching hospital?

It has always been the teaching center's and University Hospitals that have figured out my non text book symptoms and issues.  For instance, I was  among  the first diagnosed with Fibromyalgia  thru U.B.C. Hospital.  Being  teaching centers, these are the places they share information with other universities and colleges throughout the world. They are on top of all the new stuff.  Most family GPs  seem to have a limited learning "availability" so I am always very happy when I go into a doctors office and I see magazines from teaching institutions on the tables for reading material. This tells me that they are at least trying to keep up on some of the newest discoveries and studies being done. I just heard recently from the doctors office that does the nerve conduction studies to see if my Carpal Tunnel and Tarsal Tunnel has become bad enough in my feet and hands, for clipping that nerve free in the joints causing such numbness, pain and weakness. I rec'd the letter 3 weeks ago and they are booking into MAY! My numb feet want me to rush into that office yesterday, but after  2-3 years  numb, that's not going to happen unless I can get on a cancellation list.

I think the waiting period is the worst of anything we have to go thru (except pain) when we are not well. I hope you get all the answers,  encouragement & infor-mation you need! Always ask if they are able to use the results of any of the tests on your records that have  already  been done,  before repeating them. Sometimes they have access to better & newer machines,  so repeats  are not always bad thing. Here's hoping for the best results Liza!!!

Linda


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