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Author Topic: One phone call and I'm ready for the listing process to be done!  (Read 3914 times)
Deanne
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« on: March 02, 2011, 04:06:24 PM »

I finally heard from the transplant center about my next (first) steps and I'm already soooo ready for this to be done! It's just little things and I know there'll be a lot of hassles to deal with. I need to learn to be more patient. I hate it that I have to ask one of my friends to go to my first (financial / social worker) meeting. It's a 2.5 hour meeting. I so don't understand why I have to do drag one of my friends to this, but she said it's required. My only friend who doesn't work / would be the most likely to be available is on vacation out of state, so I had to send her email asking if she'll be home by then and if she's willing to go with me. I don't know if she's checking email.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
MooseMom
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« Reply #1 on: March 02, 2011, 04:22:26 PM »

The whole transplant eval process is a true profile in patience.  Sheesh!

I don't know why your center requires that you have someone with you at the SW meeting.  My center didn't require that I be accompanied although my coordinator said that "it just looks better" if you do.  Maybe they don't want to give a kidney to some weird Johnny-No-Mates, I dunno.  It's just one more hoop to jump through and one more way in which you have no control over the whole damn thing. ::)
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #2 on: March 02, 2011, 07:29:53 PM »

Dont feel bad   I was told the same.... I had to come when I could bring my care partner..... with out Care partner   no meeting...  I guess they want you to prove that you have someone willing to help you if you need it....   There are so many hoops to go thru with all of this   either   Dialysis   or Transplant..... 

   what happened to the simple life.....  No  Pills...    No appointments.......No doctors....   
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
Des
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« Reply #3 on: March 03, 2011, 01:16:03 AM »

ready yourself for a lot of read tape.

the whole process is HURRY UP! and wait.
 :lol;

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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)
KarenInWA
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« Reply #4 on: March 03, 2011, 05:59:15 AM »

Deanne,

I had to bring someone with me also.  My friend went with me, then afterwards, we and another friend went to the theater and saw Hair from front row seats! My appr took longer than 2.5 hours, though.  I was there from 10am to about 5pm.  There was a lot of waiting inbetween dr's, etc.  I met with one of the coordinators, the social worker, dietician, transplant neph and transplant surgeon.  Then I went to the lab and "donated" 16 vials of blood.  Happy to say, I could stand up straight after all that! (Oh, and my friend went and got lunch during the whole ordeal, too.)

Yes, it is a lot of hoops to jump through.  I ended up having to get add'l breast imaging and a core needle biopsy to get on the list, all for a 7mm lump that can't be felt.  Thankfully (?) I have a history of these lumps, so that wasn't too surprising. I'm just really thankful I have really good insurance!

Good luck!!!
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
Deanne
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« Reply #5 on: March 03, 2011, 11:40:20 AM »

My first appointment is only with the social worker / financial person. I guess they don't want my blood unless I pass the bank account test. I'm wondering if I should take a copy of my tax returns and bank statements. Maybe my credit reports and credit score?  :rofl;
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #6 on: March 05, 2011, 09:42:35 AM »

Why is it the will of the healthy that makes up the fate of the sick??? So annoying this healthcare system!!


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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
MooseMom
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« Reply #7 on: March 05, 2011, 06:00:27 PM »

Why is it the will of the healthy that makes up the fate of the sick???

Because they can.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
paris
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« Reply #8 on: March 09, 2011, 04:35:42 PM »

I was required to have someone with me. I think it is so overwhelming and so much information, that I was glad to have someone else take notes and ask questions.    I like my financial co-ordinator.  She has been with me throughout all of this - for almost 6 years.  Basically, she just needed our insurance information; she contacts them. Then she showed us a complete list of procedures, drugs, etc and that gives you a good idea where you stand financially with the hospital and insurance payments.   I always came away feeling comforted.   The different people I saw explained to me that they weren't trying to rule me out, just trying to get everything ready for the day a kidney came available.     It took about 8-9 months for my approval, but I know others have received their's quicker.    Wishing you a smooth journey and LOTS of patience.  I am not a patiant person!   
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
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