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Author Topic: Meet SassyArizona  (Read 2043 times)
SassyArizona
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« on: August 25, 2010, 06:02:04 PM »

How in the world do you get through a transplant evaluation including psych with pain confusion and near delierium.  I am scared to death, regretting my visit, already rescheduled it, and can't for the life of me figure out how I am supposed to get through this successfully while unable to think clear and coherently.

Edited: Split topic and moved to Introduce Yourself - okarol/admin
« Last Edit: August 26, 2010, 12:41:03 AM by okarol » Logged
SassyArizona
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« Reply #1 on: August 25, 2010, 06:17:57 PM »

My serum potassium levels are at 2.3 down from 2.4 yesterday, evaluation scheduled for tomorrow morning.
« Last Edit: August 26, 2010, 12:39:42 AM by okarol » Logged
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: August 26, 2010, 12:44:01 AM »

I moved this here and hope you'll introduce yourself SassyArizona. Welcome to IHD! Good luck with your evaluation. They know you're dealing with illness and do not expect you to be perfect. Just do your best and you will be fine. Ask questions, take notes. Hope all goes well!
 :welcomesign;

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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
paris
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« Reply #3 on: August 26, 2010, 01:08:02 PM »

Welcome SassyArizona.  We are glad you found this site and hope we can be of some help to you.   Regarding the psych evaluation sounds much worse than it is.  Mine was a casual conversation with a social worker.  We talked about my fears, my support system, how my family felt about a transplant, what my expectations were for the transplant, etc.  It lasted maybe 20 minutes.  The fear of the unknown is worse that the actual event.   They see very sick kidney patients everyday, so they are use to our befuddled minds and lack of focus.   Ask lots of questions here. There is always someone with an answer and lots of us to give you support.      One transplant surgeon told me to relax, that they weren't trying to rule me out for a transplant, just catching things that could be fixed before major surgery.  That helped me a lot.   Good luck with everything. 


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It's not what you gather, but what you scatter that tells what kind of life you have lived.
RichardMEL
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« Reply #4 on: August 26, 2010, 09:21:41 PM »

Welcome Sassy! Cool name for someone living in a hot place :)

I wouldn't worry too much about the psych test and all that for the evaluation. Just be honest. They should evaluate you in relation to what you're dealing with, and that includes pain and confusion. Is this for a live donation or the cadaveric list (I didn't think there was psych involved with that, but that could be a US thing). I can tell you the psych test I did for my live donation evaluation was the biggest waste of time ever. This woman sat there with my sister and I and just asked us how we'd feel about donating, or receiving etc. I was just honest about my feeling responsible blah blah blah, she was honest about wanting to do it blah blah blah. We passed...

Hope it went well...
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
RedMist
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I see your point. Now what?

« Reply #5 on: August 27, 2010, 09:29:42 AM »

Hi Sassy,

I have my psych eval this Monday.  In addition to the bad habit of thinking for myself, I have very non-mainstream ideas about ethics, issues with authority figures, and I come from a long line of nasty sarcasts.  On top of that I have bipolar disorder aka: manic depression.   About 7 weeks ago I decided I should retire after an hour long shouting match with the president of the school.   My nephrologist said that none of that matters.  The psych eval is intended to find out if an applicant can deal with the issues that accompany transplants.  If an applicant has some iffy thoughts or feelings then patient education or counseling or talking with other transplant patients may resolve them.   

Regarding the pain: take someone with you who can help you remember things or even speak for you.  And by all means tell the interviewer(s) about the pain etc.  I have my wife accompany me to help jog my memory but she always ends up speaking for me.  I haven't addressed this with her because she's usually accurate, is a social worker, and I've learned a couple of things about marital harmony in the last 20 years.

BTW, I'm in AZ too.

Joe
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Red Mist

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SassyArizona
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« Reply #6 on: August 27, 2010, 10:16:09 AM »

Oh thank you so much for your responses, just reading them makes me feel better and so relieved.  I've lurked forever but never posted, chatted in the chat room once months ago, but came back when I needed answers and I guess obviously closer to being more in need.

I'm still at Mayo in Scottsdale, round 1 of testing I guess is now done and I am waiting in the hospital for the balance this afternoon and next week, I guess then I may get some definitive answers or direction...just wish I was thinking clearly in the meantime!!!

I do have potential donors (two sisters and four children, the neph said with my blood type I can accept from anyone that is healthy 10-70 years old, family relation and type don't matter for me, that I am a universal recipient? (I find that odd, but with AB+ blood and not such an easy time qualifying for a heart transplant, which I also did 5 years ago, I'll take it), so I am a bit confused at the process, I mean why do I need to get through all of this for a potential cadaver if I can accept a live donation already and come with healthy potentials, what's the point of being wait-listed or is it more of an overlapping function?

Where are you in AZ, Redmist, your out of the box thinking makes me SMILE!
« Last Edit: August 27, 2010, 10:20:30 AM by SassyArizona » Logged
RedMist
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I see your point. Now what?

« Reply #7 on: August 27, 2010, 10:50:05 AM »

Oh good.  It feels great to help people.   I'm in Ft. Stinken Desert, AKA:  Tucson.   

I'm afraid I don't have the technical knowledge to give you definitive answers but I can spin some yarns...hypotheses about the why's.
First, I think that Type AB blood doesn't regard either A or B as foreign and so they don't trigger an immune response that could cause (among other things) multiple clots.  Second, Type O is considered universal donor but I can't remember why.  Third, kidney and heart tissue are very different.  Rejection and match markers could be different for each organ.  The transplant drugs might also be different; which may or may not be problematic. 

One thing I tell any doctor attending me is that I want all my questions answered.  If they aren't comfortable doing that I move on to a different doc.  Usually though I'm quite straightforward about communication problems.  When I met my renal surgeon I told him, "I want be dealt with the way I deal with my patients.  I'm a highly trained expert with years of experience but you own you and your body.  Paternalism only makes me want to fight.  In one way I'm your worst nightmare, a patient with a degree in Chinese medicine, a Merck Manual of Diagnosis, and bipolar disorder.   So, inform me, make suggestions, help me sort it through, and then please respect my decision. 

So in 6 weeks Dr. Yurkanin will remove my remaining kidney.  This will be the 4th surgery he's done on me.  I'm not worried at all.  I'm happily counting down to getting this football out of my abdomen.  Important factors in decreasing my fears are that Dr. Yurkanin does everything I asked, he's taken excellent care of me 3 times before, and patients I've referred to him also think he's wonderful.   

Another thing to remember.  We pay health care providers and therefore we are more than patients, we're CUSTOMERS. 


Joe
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Red Mist

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Des
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« Reply #8 on: September 01, 2010, 04:21:27 AM »

O bloodgroup is a universal donor, all bloodgroup can receive it.
but O can only receive from O that is why the O lists are relativaly longer than the others.

D
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
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