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Tora66
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« on: July 06, 2017, 05:54:55 PM »

Hi all, I'm new to the site. I've been on dialysis for 3 yrs and 8 months. As per new waitlist standard I've been officially on the list for the same amount of time. I live in Tacoma, WA. I'm 53 yrs old and ended up with end-stage renal failure due to high blood pressure. Just got a new graft put in about three weeks ago due to my fistula no longer working. I'm in pain right now due to the 27 staples in my arm. I'm not able to do much right now because of the pain. I feel bad because hubby and my 17 yr old twin boys are left with all the chores. Not fun when you just turned seventeen a few days ago and want to spend the summer hanging out with friends. Hopefully the staples will be out soon and we can get back into the routine which leaves me doing all the household work. Ha ha ha!

I came close to getting a xplant last Halloween. Got the call and went up to Seattle to the UW Hospital. I was the second person on standby. I got prepped and was ready to go. Turned out the person ahead of me needed both kidneys. (Hope they're doing well now some 8 months later.)  I haven't received a call since and to be honest I'm kinda feeling like it may be a few years before I do if at all.  But good things have happened since. More people at my dialysis center have received xplants including my good friend who received one three weeks ago! She been waiting for 6 yrs. due to undergoing weight loss surgery and a few medical problems that actually took her off the list twice. The average wait time at her hospital, Swedish Medical Center is 7 yrs. The average wait time for my hospital with a PRA greater than 80% is over four years.i fit in that category.

So I wait like so many others. I've gotten used to life on the list. Some days good. Some days are hard, but always happy to be alive!






post moved to more fitting section mod Cas
« Last Edit: July 06, 2017, 09:19:28 PM by cassandra » Logged
Blake nighsonger
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« Reply #1 on: July 06, 2017, 09:26:58 PM »

Welcome to the site. 
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Charlie B53
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« Reply #2 on: July 07, 2017, 04:48:21 AM »


Welcome to IHS Tora66.

You were fortunate to have gotten 'the call', but I can only try to imagine the frustration/depression after going, laying there prepped and ready, only to be told not today, go home.   What a HUGE disappointment can't even begin to describe it.

Alas, this same experience has happened to far too many others, and will yet again.

We don't really have much choice, either do, or simply remain of dialysis forever.  That isn't much of a choice.

I Pray that the next 'call' comes soon, and that it really is 'the' one.

As Ever,  Take Care,

Charlie B53
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iolaire
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« Reply #3 on: July 07, 2017, 05:32:31 AM »

Welcome, that had to be a let down getting prepped and then turned away.  I've received many calls but never had to go into the hospital and always get turned down sometime in the middle of the night.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: July 07, 2017, 08:04:05 AM »

Welcome to the site Tora66

   :welcomesign;


Take care, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Michelle2016
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« Reply #5 on: July 07, 2017, 11:49:38 AM »

Keep the hope and do your best. When the next call is coming, your life will change for the best.

Best wishes and good luck.
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Tora66
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« Reply #6 on: July 07, 2017, 02:28:47 PM »

Thank you all for the encouragement. I hope all of us get a kidney soon!
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MooseMom
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« Reply #7 on: July 07, 2017, 03:05:38 PM »

Welcome to our community!  I do hope that you will find the support and information here that you need.  I'm very glad you've joined us.
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"Empathy is the soul of democracy."  Jeremy Rifkin
Tora66
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« Reply #8 on: July 07, 2017, 07:12:27 PM »

Thank u everyone for the support. I have to make a correction. My PRA is actually 35. I don't know how I got that wrong. Anyway I spoke to a coordinator from the hospital today. The chance of getting a xplant doesn't look good. The coordinator informed me that there is a very high number of people on the hospital's waitlist. Since I don't have a living donor lined up she suggested a seek a donor on FB. I really don't think this will be successful. Well, I'm coming up on four years. I hope something happens within ten years. Maybe I should get on multiple lists.
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smartcookie
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« Reply #9 on: July 11, 2017, 12:16:16 PM »

Hi Tora!   :welcomesign;  I am so glad you found us! 

I would definitely get on as many transplant lists as you can.  And Facebook is not a bad place to advertise, as OKarol can attest to!  You never know who you will reach.  I have seen people put bumper stickers on their cars or hand out flyers at local events to get the word out. 
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I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
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