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Author Topic: long time no see, so here's an update!  (Read 6620 times)
tubes
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Miss you so much Susie. Will always <3 you!
« on: November 09, 2009, 10:47:43 PM »
Hey my IHD family! I was thinking about this place so I had to come drop in. So I might as well fill y'all in on whats been going on lately.
This past summer I completed the transplant evaluation. It was probably the scariest thing I've ever done. I've tried completing the transplant evaluation "stuff" in the past. I always freaked out and told myself I didn't deserve it. That is all behind me now. I do deserve it and I will get it! Yet, the selfworth issues come into play now and again.
So, I finished the evaluation in July and on August 7, 2009 while at dialysis I got a fax saying I was officially on the transplant list.  :bandance; WOW, getting that fax just about gave me a heart attack. Later that night I told my mom and stepdad. They were so happy. Myself, I couldn't stop crying. The thought of living without dialysis is very scary. Considering I'm 29 now and have been on dialysis since I was 16. I don't know anything else. What am I going to do now at 6am on Monday, Wednesday and Friday mornings. Hmmm, guess I will get to sleep in.  :yahoo; Oh wait, maybe I will finally get to work full time again. That would be nice. Uh oh, I think I've gotten off track somewhere. So yea, I cried my eyes out and my mom reassured me I wouldn't be going through this alone. I'm very glad to be back in Omaha with my family, without them I would  of never completed the evaluation process.
The next step is for my mom, stepdad, dad and both my sisters to complete their donor packets and get them sent in. Since we are all going to be together for Thankgiving we are gonna sit down together and get the donor packets filled out.
I really feel like I've accomplished something. I've been on dialysis for 13 yrs now and have started transplant eval. so many times but flaked out. This is the farthest I've ever gone in this process and now I hope to see it to the end. One day, I hope to hang up my, "Member of the No pee Society" t-shirt. What a glorious day it will be to one day look that smug porcelain bowl in the face, unzip my pants.....well, you know the rest!  :rofl;
So, there you have it. Sorry if I got off track.
Thanks for reading,
Robert (aka-tubes)
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"To be happy is the choice I wish to make in spite of the circumstances that are strewn in my path."

1996 - started incenter hemo
a few months later, started PD
2005 - started incenter hemo
AGAIN
  - on transplant list as of August 7, 2009.
2011/June - 15 years on "D"
Transplant - Tuesday October 18th 2011
sico
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« Reply #1 on: November 09, 2009, 11:14:08 PM »
Good to here you're back dude. I have read some of your older posts.
Best of luck with getting a kidney, been a long time coming.

Cheers Brad.
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Brad      "Got myself a one way ticket, going the wrong way" - Bon Scott

6/11/08 diagnosed with ESRF, dialysis that day

HD and PD

8th of April 2010 Live kidney transplant from my father.
Jean
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« Reply #2 on: November 09, 2009, 11:47:17 PM »
Wonderful news Brad, hope it happens soon and all is successful for you.
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One day at a time, thats all I can do.
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« Reply #3 on: November 10, 2009, 12:21:59 AM »
Oh Tubes it is so good to hear from you.  It has been a long time. Glad you've finished the evaluation, it sounds wonderful to hear you
may be getting a kidney soon.  IHD has missed you and I hope you will continue to keep us updated about what is going on in your life.  In
the meanwhile take care and stay happy.
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Death is not extinguishing the light;
it is putting out the lamp because the dawn has come.
lizabee
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« Reply #4 on: November 10, 2009, 04:44:07 AM »
That's great news!  Good luck!
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paris
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« Reply #5 on: November 10, 2009, 08:16:38 AM »
Tubes!  You have been so missed!!  I am so very excited that you got listed!  Susie would be so proud of you.  I'll be thinking of you on Thanksgiving. What a great day for all of your family to fill out the paperwork together.  Please keep us updated.  Come back to us!!   We love you   :cuddle;    :cuddle;
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kelliOR
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« Reply #6 on: November 10, 2009, 08:30:12 AM »
 :)  Great news, indeed !

kelli
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Shoot for the Moon.....Even if you miss, you'll end up among the Stars ........


Denied PKD for years (Boy, was I good at it!)
Dragged kicking and screaming to dialysis (in center hemo)
Transplant from a friend March 24, 2006 at OHSU
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« Reply #7 on: November 10, 2009, 09:28:36 AM »
 :waving; Tubes!!

Paris is right, Goofynina would be damn happy! I am proud of you too because I KNOW you deserve a transplant and I pray everything works out. It's great to hear from you - it's been too long!
 :-* :-* :-*
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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
thegrammalady
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« Reply #8 on: November 10, 2009, 11:00:56 AM »
yes, you do deserve a transplant!! it's gret to see you back, you've been missed.
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain.

Some mistakes are too much fun to only make once.

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« Reply #9 on: November 10, 2009, 01:35:11 PM »
Go for it Brad! Wonderful!

 :yahoo;
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
Zach
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« Reply #10 on: November 10, 2009, 01:43:29 PM »
So glad to hear from you, Tubes!!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
tubes
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Miss you so much Susie. Will always <3 you!
« Reply #11 on: November 10, 2009, 04:16:31 PM »
Thank you for the replies and encouragements.   :grouphug;

With my blood type, (B+) I think I was told. It is a 3-5 yr wait. So I have a while but it's still a short wait compared to other people. Plus with my family getting tested I'm hoping to have a new kidney before my 30th birthday or around that time. I know thats a huge wish. So a more reasonable expectation would be by this time next yr.  ;)

Thanks again,
Robert
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"To be happy is the choice I wish to make in spite of the circumstances that are strewn in my path."

1996 - started incenter hemo
a few months later, started PD
2005 - started incenter hemo
AGAIN
  - on transplant list as of August 7, 2009.
2011/June - 15 years on "D"
Transplant - Tuesday October 18th 2011
kellyt
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« Reply #12 on: November 10, 2009, 05:44:22 PM »
God Bless you Tubes!  And congratulations on making "the list"!!!   I hope you get off dialysis soon!  You will love it!    :bestwishes;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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« Reply #13 on: November 10, 2009, 08:57:58 PM »
Good to hear from you tubes

And yet somedays I do miss dialysis so i wouldn't have to visit the porcelin bowl  ;D :rofl;

Hope you have an easy journey tubes through this.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Maker
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« Reply #14 on: November 11, 2009, 12:41:51 PM »
Hi Tubes,

Congrats on getting listed  :bandance;

 I hope it works out for someone in your family to donate.  I am just beginning the process to qualify for a transplant and have some of my family tested as well.  I know what you mean about feeling at times like you don't deserve it...but remember, our families want us around for a long time, and so we do it as much for them as for ourselves  :) 

Keep us updated!
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- Lori

33 years old
Diagnosed February 2007
Started In-Center Hemo October 2009
Trying to qualify for a living donor transplant

"I can do all things through Christ who strengthens me"  Philippians 4:13
MissyKew
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« Reply #15 on: November 11, 2009, 02:28:07 PM »
Congrats on getting listed Tubes!
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paris
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« Reply #16 on: November 11, 2009, 03:39:15 PM »
Robert, I told AlohaBeth yesterday about you getting listed and I thought she was going to cry!  She is very excited for you  :2thumbsup;   She will meet you in Vegas after the transplant and go clubbing!!     :rofl;      We are both excited for the possibilities ahead for you.     We love you!    :cuddle;
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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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« Reply #17 on: November 11, 2009, 08:48:10 PM »
wow that is amazing. How soon are you going to get a kidney? I would think you would get one pretty fast for being on dialysis for so long. I thought now they put you on depending on how long you have been on dialysis. There are other patients like you.

Lisa
P.S. you are only two years older then me. What caused you to go on dialysis? Did people pressure you to get on the list?
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Check out my Facebook profile for CKD "Help Lisa Spread Awareness for Kidney Disease"

It is my utmost dream and desire to reach out to other kidney patients for them to know that they are not alone in this, also to reach out to those who one day have to go on dialysis though my book i am writing!

dx with lupus nephritis 5/99'
daughter born 11/2005
stage IV CKD 11/2005-6/2007
8/2007- PD cathater inserted
9/2007- revision of PD Cathater
10/2007 started PD
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« Reply #18 on: November 13, 2009, 08:30:45 PM »
That is great news Robert! I am sure your family is so excited that you have made the giant step. My guess is they have been waiting for an opportunity to help. Big hugs to all of you!  :cuddle; :cuddle;
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Diagnosed with FSGS in1990.
Started hemodialysis in April 2006.
Received a new kidney from my sister on Dec. 5, 2006.
Transplant rejection in March, 2009
Approved for second transplant in May 2009
Sister-in-law approved as donor in Dec 2009
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« Reply #19 on: November 26, 2009, 04:52:55 AM »
Great news, Tubes!   :yahoo;  And absolutely great to have you back. :grouphug;  My caring thoughts and prayers are with you all the way. :cuddle;
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
tubes
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Miss you so much Susie. Will always <3 you!
« Reply #20 on: November 26, 2009, 09:48:29 AM »
Thanks again everyone.   :grouphug;

It's great to be back, Bajanne.

Quote from: paris on November 11, 2009, 03:39:15 PM
Robert, I told AlohaBeth yesterday about you getting listed and I thought she was going to cry!  She is very excited for you  :2thumbsup;   She will meet you in Vegas after the transplant and go clubbing!!     :rofl;      We are both excited for the possibilities ahead for you.     We love you!    :cuddle;

Paris, you tell Beth I'm ready to go clubbing NOW.  :yahoo;  :bandance;  :yahoo;

Quote from: Lillupie on November 11, 2009, 08:48:10 PM
wow that is amazing. How soon are you going to get a kidney? I would think you would get one pretty fast for being on dialysis for so long. I thought now they put you on depending on how long you have been on dialysis. There are other patients like you.

Lisa
P.S. you are only two years older then me. What caused you to go on dialysis? Did people pressure you to get on the list?
I was told a 3-5 yr wait with my blood type, Lisa. My kidneys failed because of Polycystic Kidney Kisease. (PKD) I was 2 weeks old when  my left kidney was removed because it was cystic. My parents were told I would be fine the rest of my life; live a normal life. At 14 found out my right kidney was failing then 16, I started dialysis.
It's been a hell of a ride every since then.  :o
Yes Lisa, I had been pressured to get on the transplant list. Many times in the past, and I tried. I never followed throu, never cared enough. Until now, this time it was my idea. I tell you, my entire family was shocked  beyond belief.

~Robert
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"To be happy is the choice I wish to make in spite of the circumstances that are strewn in my path."

1996 - started incenter hemo
a few months later, started PD
2005 - started incenter hemo
AGAIN
  - on transplant list as of August 7, 2009.
2011/June - 15 years on "D"
Transplant - Tuesday October 18th 2011
girliekick
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« Reply #21 on: November 27, 2009, 02:21:07 AM »
idk u, but i am crying with u, for the struggle and the fax. The day i got listed i was in the library parking lot about to drive home. It took me an hour to stop crying enough that i could drive. Its hard to know ur worth sometimes, and transplant ppl judge u(or so it seems) and then finally the verdict comes back approved. Wahhhooo. I too am afew yrs younger than u, w allot less D time. But i really look forward to my 30s as i believe they may be my wonder years.
U really deserve this i will be pulling for a brief stay on the list and strong living donor match
congrats
girl
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-Christmas '03 get news of esrd
-June '08 start hemo
-Thanksgiving '08 pd surg
-Feb '09 Stop hemo and manual exchanges
... start cycler
Setp 3 '09 On UNOS list (27th b day)
Dec 09 peritonitis
tubes
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Miss you so much Susie. Will always <3 you!
« Reply #22 on: November 27, 2009, 07:06:44 PM »
Thank you girl. It has been real hard. I dont understand my family. I thought they were going to fill out the donor packets or atleast discuss them this week. They can't seem to find the time to do it. My mom is bent on seeing her doctor first for a check up before she jumps into the donor packet. My mom said it took me 13 yrs before I got on the transplant list. So they are shocked that I did it. Now she says it will take her 13 yrs to get over the shock then she'll fill out the donor info.  Not sure if I should be laughing for freaking out.  :banghead;
I hope your stay on the list is short also.
 :cuddle;

~Robert
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"To be happy is the choice I wish to make in spite of the circumstances that are strewn in my path."

1996 - started incenter hemo
a few months later, started PD
2005 - started incenter hemo
AGAIN
  - on transplant list as of August 7, 2009.
2011/June - 15 years on "D"
Transplant - Tuesday October 18th 2011
Hanify
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Hadija, Athol, Me and Molly at Havelock North 09
« Reply #23 on: November 27, 2009, 09:37:07 PM »
Give them time.  It's a big decision to give away part of your body.  It's fantastic that they're talking about it.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
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« Reply #24 on: November 27, 2009, 09:58:25 PM »
Best of luck with the whole transplant deal.  You will do fine. 

                             :cuddle;
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