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Author Topic: First came the end ,then the beginning and 2 shall be joined as 1  (Read 3291 times)
Katonsdad
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« on: November 25, 2007, 01:50:55 PM »

My donor is part of me . I am part of him , We need each other we are 2 that became 1 within this
shell called a body .

( I have introduced myself and posted some . Here is the story of my transplant . more stories about treatments later)

The Doctor told  me it was a young person from Southern California . I received my transplant in August 1999 .
I felt I would never know from who . Sure enough letters to the family went unanswered . I thank them to this
day for the choice they made .  I will survive .

The call came shortly after my wife left for work , I needed to head into LA and get to the hospital . I called my wife
after she got to work . I called mt in laws and my sister , to let them know.   I drove to my wifes office and
we left her car there with the keys and they said they would pull the car into the warehouse after work to keep it
safe .  We drove to the hospital , UCLA in Westwood . 

Inside we went to admitting and they had all the paperwork already . The Transplant Center had planned for everything .
I thought about life without that darn machine . and special diets and all those other things that we do when being treated,
I was taken to a room and the tests started. Blood , Urine and xrays were all done .  The doctors came in and said it was all
looking good and the transplant teams were on the way for the recovery . I was getting a Kidney and Pancreas ,
They wanted me to take one more session of Dialysis before the surgery , they wanted me to be as clean and fresh  as possible.
I felt like I was in a whirlwind , everything seemed to be going around and around .   While in the Dialysis center I heard
the Helicopters landing  , Were those the doctors coming with the organs ?

Flash ahead to ICU , I was in recovery . The pain is tremendous , I had a breathing tube . I didn't need it , I wanted it out .
I tried to take it out and they tied my hands down .  Back to sleep I went . Waking up . again I realized it was all over .
I was in ICU and I was calmer. The tube was finally removed and I could speak .  The drugs they used created wild vivid
dreams  . I was racing around the hospital in racing pods from Star Wars . I did not even like Star Wars . Was this the Donore
speaking out ?  That was never answered  , Neither was the reason why in the beginning I only wanted to eat  food
that was Orange , Nothing but Orange food , that really limits your diet . That need slowly went away , except the only
Jello I eat now is orange.

The medicine regime started , Lots of it .  prednisone , Cell Cept , Prograf , Vitamins , so many I can not remember hem all
here and now.  I have my records and I will check and let you know which ones I took .  64 pills aday I believe it was.
They wondered why I wasn't hungry .    During the 4th day of recovery , I sneezed and shortly had a lot of pain .
It was determined that when I sneezed I tore the sutures where the Pancreas was sewn at and hand to go back for
more surgery .  What a bummer that was,  This time was not as bad and a quick recovery was upon me .  I spent about
9 days in the hospital ,  Some of this time was recovering from a bout with depression . and the doctors felt I was better
staying in the hospital a little while longer .

The depression came from the medicines I was on .  It just brought out weird feelins . My Older brother had offered me a Kidney ,
but he had a younger daughter , and if she ever needed one and I had taken it , well I just couldn't  He died  6 months
before my transplant due to a heart attack , and his widow was asked if she was able to donate any organs , Her response was
" He was leaving with what he came into the world with "   I said nothing when I heard her say this , know what she was going
through . I delivered a Eulogy for him with my arm wrapped in bandages recovering from surgery to repair my arm from a
botched graft implant . ( more later on this) 

After getting sorted out as the doctor put it , I was released and needed to be in Clinic every other day for 3 weeks . Mt
Insurance paid for me to stay at House next to the hospital provided for patients and family who had to travel far.
I would travel 40 miles if I did not stay there .  They had a small store there and you could order meals in from surrounding
eateries . My labs were looking good  . I was sent home to recover more and the trips went to once a week at the clinic.

Then it hit , The rejection . I showed its ugly head during a clinic visit . I had a fever and the labs were up . Off to the Hospital
I went . A biopsy was ordered and done and the kidney was rejecting me . I wasn't rejecting it as I wanted it . :banghead;
With very strong medicine I was able to beat the rejection . My doses of medicine went up and things have settled in .
The meds have gone down and I am still feeling great .
I use Predisone , Prograff , Lisinpril and Zocor along with over the counter vitamins and rantodine for stomach upset ,
I also use SPF 50 sunscreen as I have developed skin cancer from the imunosupressant drugs . It is not Melanoma but
squamish cell type . So transplant patients need to be careful

Katonsdad
Logged

Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



Soft kitty, warm kitty,
 little ball of fur,
happy kitty,sleepy kitty,
 purr purr purr ::
Sheldon and Penny on The Big Bng Theory
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: November 25, 2007, 02:08:43 PM »

Thanks for telling your story.
Sorry about your brother.
 :cuddle;
Logged


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
kellyt
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« Reply #2 on: November 25, 2007, 02:27:04 PM »

Amazing story!   Thanks for sharing!   I can't wait to hear more...
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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
KT0930
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« Reply #3 on: November 29, 2007, 08:38:10 AM »

"While in the Dialysis center I heard the Helicopters landing, Were those the doctors coming with the organs ?"

What an amazing feeling that must have been!

Thank you for sharing your story in such detail. Even though I've been through it twice, it's nice to be able to read and process it.
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"Dialysis ain't for sissies" ~My wonderful husband
~~~~~~~
I received a 6 out of 6 antigen match transplant on January 9, 2008. Third transplant, first time on The List.
paddbear0000
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Dogs & IHDer's are always glad to see you!

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« Reply #4 on: November 29, 2007, 12:40:05 PM »

Thanks for sharing your story. I am (someday) getting a kidney/pancreas transplant, and this helped me a lot.
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********************************************************
I HAVE DESIGNED CKD RELATED PRODUCTS FOR SALE TO BENEFIT THE NKF'S 2009 DAYTON KIDNEY WALK (I'M A TEAM CAPTAIN)! CHECK IT OUT @ www.cafepress.com/RetroDogDesigns!!

...or sponsor me at http://walk.kidney.org/goto/janetschnittger
********************************************************
Twitter.com/NKFKidneyWalker
www.facebook.com/profile.php?id=1659267443&ref=nf 
www.caringbridge.org/visit/janetschnittger

Diagnosed type 1 diabetic at age 6, CKD (stage 3) diagnosed at 28 after hospital error a year before, started dialysis February '09. Listed for kidney/pancreas transplant at Ohio State & Univ. of Cincinnati.
Romona
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« Reply #5 on: November 29, 2007, 04:24:11 PM »

Beautiful Story! :)
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kidney4traci
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« Reply #6 on: November 29, 2007, 06:06:52 PM »

Thanks for sharing.  That is one reason I love this web sight.  For those of us who have not gone through this yet, you paint a good picture for us.  Sorry to hear about your brother.  Keep posting.  Thanks.
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Married - three children.
Alports female, diagnosed ESRD 10/04
11/04  Hemo in clinic
6/07 hemo at HOME! 
2/3/09 - Transplant from an angel of a friend!!!
goofynina
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He is the love of my life......

« Reply #7 on: December 03, 2007, 04:30:17 PM »

Thank you for sharing your story Katsondad, had to laugh about the Star Wars dream, (and the orange food)  :clap; thanks again  :waving;
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....and i think to myself, what a wonderful world....

www.kidneyoogle.com
Katonsdad
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« Reply #8 on: August 05, 2008, 04:46:59 PM »

As of today 08/05/08 , it has been 9 years since my transplant . A bit depressed today , I should be happy . I am feeling
great . My labs all looked good the last time we checked a few months back .  Everything seems good .

I still wonder about my donor and the family that gave such a great gift to me .  I hope they are doing good.
I pray good blessings for them .
I had some Nacho Cheese Doritos and Orange soda to commerate today .

Katonsdad
Logged

Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



Soft kitty, warm kitty,
 little ball of fur,
happy kitty,sleepy kitty,
 purr purr purr ::
Sheldon and Penny on The Big Bng Theory
okarol
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Posts: 100933


Photo is Jenna - after Disneyland - 1988

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« Reply #9 on: August 05, 2008, 05:09:43 PM »

 :flower; NINE YEARS! That's really fabulous!
Take care my friend!  :cuddle;
Logged


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
Chris
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« Reply #10 on: August 05, 2008, 05:25:14 PM »

My labs all looked good the last time we checked a few months back .  Everything seems good .



Katonsdad
You only get labs done every few months? I wish I could do that, my arm is still sore from so many blood draws in the last few months.
Glad you are doing good and gives me hope my k/p will last long. It will be 8 years for me this year, but still fear rejection. I don't want to go back on dialysis, not do I want to worry about diabetes  and what vision I have left.
Stay Healthy Katonsdad,
Chris
Logged

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?
Katonsdad
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Posts: 338


« Reply #11 on: August 05, 2008, 05:55:11 PM »

The rejection fear will always be in the back of my mind ....You can not let it rule .
I take my meds ,,and visit the doctor regularly . I dp the labs when he says to do them.

I too have had severe eye problems and I had a check up last week and all is good their also.
I will deal with what ever comes my way as it comes . I can not fear the unknown .

I know some day I may reject but will start all over again if needed .

Katonsdad
Logged

Diabetes 1976
Eye issues 1987
Kidney Failure 1997
CAPD 1997 , Stopped 1997 due to infections evey 28 days
Started In Center Hemo 1997
Received Kidney/Pancreas transplant 1999 at UCLA
Wife and I had son in 2001 , by donor for my part (Stopping the illness train)
Kidney failed 2011 , Back on Hemo . Looking to retransplant as the Kidney is still working



Soft kitty, warm kitty,
 little ball of fur,
happy kitty,sleepy kitty,
 purr purr purr ::
Sheldon and Penny on The Big Bng Theory
G-Ma
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Posts: 2191


« Reply #12 on: August 05, 2008, 06:03:47 PM »

Thank you so much for your story.  I still don't know about transplant, still thinking.
Logged

Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Chris
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« Reply #13 on: August 05, 2008, 06:06:44 PM »

The biggest fear I have is the loss of my sight. I know I have a surgery coming up and the last time they did work there I lost sight for 2 months and didn't recover till 4 months fully. Which in one effect that fear should have been mentioned in another post of being alone. I think I can handle rejection, but when the diabetes complications start their regular routine again, then I have a bigger fear.

So much to do, so little time
Logged

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?
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