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Bajanne
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« on: June 22, 2011, 06:25:56 PM »

As many of you know, I just returned from my sister's funeral in Barbados.  I am not totally sure where this post should go, whether it should be in the Off-Topic, but this is particularly for those of us dealing with renal failure, although it concerns every one.
My sister lived alone, and except for giving one of our nephews her PINs for her ATM and credit card, she left no information with anyone.  She even had a Samsonite suitcase locked with a combination lock that no one knew. She was a very disciplined person and all her utilities, etc were up to date.  She used the internet extensively to look after her affairs.
No one knew where she kept her jewellry and we fear that one of the ladies looking after her in the last days may have gone with lots of her things.
Why am I saying this?
None of us will live forever, and it is no use trying to make it seem different.  We all need to have an 'exit plan'.  We talked about it years ago.  I hope that Kitkatz will come up with something that we can all work on - some kind of template or questionnaire to cover all the things we need to have covered.
It makes it so much easier for those who are left behind, as I have come to realize from this recent experience.

About a month or two before she died, my sister said "I feel I am dying".  Instead of helping her to set things in order, I just told her she was joking. I didn't want to face up to it.
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natnnnat
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« Reply #1 on: June 22, 2011, 06:34:59 PM »

Yes this is important.  My dad commented to me after my mum died, that he didn't know her password for her computer or her banking.  Made it difficult.  Thought I think there was a workaround with the bank, he may have lost access to some of the stuff they "shared" in her laptop.  Photos and things.

He has extensive collections of family genealogy information and photos, information going back generations, and has started putting it all into an online space called SugarSynch, and has made sure I have access to it. 

Actually digital storage space is useful full stop.  I have copies of "everything" in SugarSynch and also in Dropbox, they give you free space.  Dropbox gives about 2gig free, and SugarSynch 4?  or something?
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
jbeany
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« Reply #2 on: June 22, 2011, 06:44:07 PM »

Hmm... been there, done that -
My dad didn't leave a will - he left it all up to my step-mother - who kept pretty much everything, including things of only sentimental value, like Christmas decorations my mother had made.  :P
At least my gram was well prepared financially.  EVERYTHING had someone else's name on it already.  All we had to do was file change of titles and deeds to the property since they were already made out with survivorship rights, and bank accounts simply belonged to the other family member already named.  Of course, she left behind her hoard with the house......but you can't have everything!

I've got my sister's name on everything, folders clearly labeled with insurance policies and everything else in the fire safe.  She's got her own copy of my power of atty papers, so she can make all medical and financial decisions for me as needed.  She's got keys to my apartment and my car, and her name is my emergency contact on my lease, so if anything happens, she simply owns whatever I've left. 
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Sluff
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« Reply #3 on: June 23, 2011, 10:07:47 AM »

Sorry for your loss Aurora, and yes it is a very important topic.
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Poppylicious
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« Reply #4 on: June 23, 2011, 01:41:49 PM »

Absolutely.  I constantly worry about not knowing ANYTHING about the mortgage, etc. and Blokey is always saying that he'll make sure everything is readily available for me, but he's been saying that for three years now ... !
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- wife of kidney recepient (10/2011) -
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Everything was beautiful, and nothing hurt.
kitkatz
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« Reply #5 on: June 23, 2011, 02:17:09 PM »

Oh boy.  I will have to think long and hard on it before I can come up with a checklist.  How about everyone pitching in some ideas.
What does your family need to know about your life before you should pass?
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
jbeany
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« Reply #6 on: June 23, 2011, 04:04:39 PM »

Funeral wishes.  Cremation?  Burial?  (Shot into space?  ;D)  Choice of minister? Choice of cemetery?  Deed to cemetery plot? Music preferred?  Do you want an obit in local paper?  Do you have the funeral prepaid?
Last will - last date changed, location, lawyer who drew it up if applicable.
Any sentimental objects you wish to give to certain friends or family members that weren't named in a will?
Preference on donations of collections, valuable or practical?  Local museum, library, genealogy society, etc?
Life insurance information.  Company?  Amount? Beneficiary?
List of every bank account, checking or saving and approximate amount in it.
List of stocks, bonds, CD's.
Location of important papers.  House?  Safe? (Combo to safe?)  Bank box?  Which bank, and where is the key?
Computer passwords to log on to main computer, and any important accounts or websites.
List of friends to notify and their contact info.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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« Reply #7 on: June 23, 2011, 04:47:59 PM »

Don't forge your will, living will, power of attorney and health care power of attorney. All of them important for your last days and after.
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del
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« Reply #8 on: June 23, 2011, 04:53:41 PM »

When my mom died nobody knew if she had her funeral prepaid.  Luckily it was a small town and my aunt called the couple of funeral homes that were there to find out.  I always tell hubby that I do not want to be open for viewing.  I don't want people who haven't bothered to see me for years to come look at me when I am dead!!  We have talked about prearranging our funerals for years but have never gotten around to it.  We have also talked about doing a will but have never gotten around to it.  We really should as we have no children and I don't want my family or hubby's to get anything we have. I want it all sold and the money donated to charities.
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Don't take your organs to heaven.  Heaven knows we need them here.
needlephobic
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« Reply #9 on: June 23, 2011, 06:04:05 PM »

I  a work book I think is called last wishes have to find it. Well it has very thing in it you need to to family your last wish. kinda like a will you give one to the hospital your doctors and familyand trhey have to go by it. I wilo have to locate it and put the web site here
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Cordelia
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« Reply #10 on: June 23, 2011, 06:23:54 PM »

I'm so sorry for your loss.    :grouphug;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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« Reply #11 on: July 15, 2011, 08:44:07 PM »

This is what I have been thinking about doing for the last week. I found a website that will allow you to engrave two 20 character lines on a personal thumb drive. The great thing is that they will allow you to buy one at a time. I plan on getting a 2GB thumb drive, using a program called TrueCrypt to encrypt the entire thumb drive. Why would I want to do that? Well I have some very private information that I only want my wife or someone very close to know about or have access to. I would leave the pass-phrase to decrypt the thumb drive with my lawyer and leave the thumb drive in my safety deposit box. I was thinking about leaving a sealed letter with the information about the pass-phrase and the thumb drive with the lawyer to give to my wife. Maybe that wax seal kit I got for my birthday will finally have a good use.

I know this all seems very paranoid but I am an IT Security Admin, or at least I was before I had to stop working. Darn kidneys!

So, what do you really think about my plan?

Here is a link to the website: https://www.pexagontech.com/products/flash-drives/personalized-swivel-drives.php
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Dining on Dialysis - www.diningondialysis.com
-------------------------------------------------------------
Kidney Transplant (December 31, 2014),
Dialysis-Hemo (Started May 17, 2011. Ended December 29, 2014),
AV Fistula #2 (This one is a Basilic Transposition),
CKD (IgA Nephropathy) Stage 5,
Hypertension (Under Control)
Stacy Without An E
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« Reply #12 on: July 19, 2011, 01:46:59 PM »

Many condolences on your loss Aurora.

This is something I've been thinking about for a while, because I'm going to leave everything to my sister and her kids, I just haven't spoken to her about it because she won't want to listen.

I've also been researching getting life insurance, but when you suffer from renal failure, finding a good policy is daunting.

I've been thinking about this more and more since turning 40.  My body has been enduring Dialysis for over 7 years, and I'm really starting to feel the effects.  Heart attacks, seizures, and the like can happen at any moment to any Dialysis patient at any time.  The last thing I want to be is a burden when I pass on.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
stacywithoutane.blogspot.com

Dialysis.  Two needles.  One machine.  No compassion.
Bill Peckham
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« Reply #13 on: July 19, 2011, 10:11:28 PM »

Funeral wishes.  Cremation?  Burial?  (Shot into space?  ;D )  Choice of minister? Choice of cemetery?  Deed to cemetery plot? Music preferred?  Do you want an obit in local paper?  Do you have the funeral prepaid?
Last will - last date changed, location, lawyer who drew it up if applicable.
Any sentimental objects you wish to give to certain friends or family members that weren't named in a will?
Preference on donations of collections, valuable or practical?  Local museum, library, genealogy society, etc?
Life insurance information.  Company?  Amount? Beneficiary?
List of every bank account, checking or saving and approximate amount in it.
List of stocks, bonds, CD's.
Location of important papers.  House?  Safe? (Combo to safe?)  Bank box?  Which bank, and where is the key?
Computer passwords to log on to main computer, and any important accounts or websites.
List of friends to notify and their contact info.



My condolences Aurora. Lots to think about - it is true that leaving a plan with clear wishes/intentions would be a gift to those having to deal with closing up my affairs - I don't think my brother(s) would be up to the task.


This is a good starting point jbeany. I have designated Northwest Kidney Centers as the beneficiary of my life insurance and told NKC how I would like it used but anything else is to be split by my brothers ... at least according to the will I made when I was preparing to have my Tx - in 1988. Not sure what would be a better option.



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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
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