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Author Topic: Hello from Richmond, California  (Read 3498 times)
stuman413
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Have been an on and off dialysis for 15 years

« on: December 03, 2010, 09:11:42 PM »

Hello everyone!   My name is Stuart, I live in Richmond, California.  I'm a divorced 35 y/o male.  I've been on dialysis for a little under two years now.  This is my second time on dialysis.  The first was from 1999 through 2003.  I received a kidney transplant in January 2003.  In June 2009 I lost the transplanted kidney and have been on dialysis ever since.  I go four times a week, Monday, Wednesday, Friday and Saturday. 

I was born with a blockage on my bladder, which caused urine to back up into my kidneys and eventually my blood causing serious infection.  When the doctors finally figured out what was wrong with me, the damage had been done.  The scarring on my kidneys eventually led to their failure when I was 23.  The kidney I received was from my cousin.  I lived for six years with a transplant, probably the greatest six years of my adult life.

Anyways thats my story so far.  I'm really glad to have found this forum.  Just knowing that there are people out there like myself who are willing to express themselves online so openly is refreshing.  I look forward to getting to know you all.
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-Born in !975 with blockage on bladder
-Doctors do not realize this fact until 8 days after I'm born
-Perform surgery to pull ureters out my back so I can pee (called a eurethrarostomy)
-At 3 years of age the doctors fix the bladder and return my anatomy to normal
-23 years old I have pain in my chest/cannot breath, rushed to hospital, find that my kidneys have failed
-March 1999 - first dialysis in hospital
-January 2003   Living donor transplant from cousin
-April 2009  kidney fails  back on dialysis - present 4x per week
-January 2013 - started nocturnal dialysis 3x week for 6 hours per treatment
-April 2013 - Nocturnal shift is discontinued, treatments reduced to 5 hrs apiece
July 3 2016 Received 2nd transplant from cadaver doner
Two years post transplant doing fantastic so far
galvo
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« Reply #1 on: December 03, 2010, 10:44:48 PM »

G'day Stuart and :welcomesign;.
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Galvo
elihup
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« Reply #2 on: December 04, 2010, 12:39:30 AM »

Hello Stewart,
Hope you dont mind my asking, but what happened that caused you to lose your transplant?  My story is similar to yours, but you are a bit farther along.  I was diagnosed when I was 24, and have now had a transplant for 3 years and hoping it keeps going for much longer.
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Rerun
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Going through life tied to a chair!

« Reply #3 on: December 04, 2010, 09:11:53 AM »

Hi Stuart and welcome to IHD.  I'm so glad you found us.  My kidneys failed when I was 24 but I'm now almost 50 but I can relate to being so young and living with dialysis or transplant whatever.  It remains; we were robbed of a normal young adult life.  Anyway, onward..... right?

I hope you come here to vent and learn and teach.

Rerun, Moderator             :welcomesign;
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looneytunes
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Wishin' I was Fishin'

« Reply #4 on: December 04, 2010, 11:18:10 AM »

Hi Stuman and I also want to welcome you to our little corner of the web.  It's a great site with a lot of members who can relate to each other.  Please come back often to read, post or just have a little fun with us.    :welcomesign;
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"The key to being patient is having something to do in the meantime" AU
Nancy
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One of many caregivers to my Dad.

« Reply #5 on: December 04, 2010, 08:20:47 PM »

 :waving; Hello










EDITED: Corrected Icon Error - Bajanne, Moderator
« Last Edit: September 20, 2011, 11:06:33 AM by Bajanne » Logged

Nancy
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« Reply #6 on: December 04, 2010, 11:05:24 PM »

I think you'll like it here!! :yahoo;
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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."
Jean
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« Reply #7 on: December 04, 2010, 11:39:57 PM »

Hi there Stuart and   :welcomesign;  to IHD. Glad you joined us, this is a great place for support and information.
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One day at a time, thats all I can do.
Mizar
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« Reply #8 on: December 05, 2010, 04:50:44 PM »

 :welcomesign;
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rsudock
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will of the healthy makes up the fate of the sick.

« Reply #9 on: December 12, 2010, 12:37:20 AM »

Hello and welcome D comrade!!

xo,
R
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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?
stuman413
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Have been an on and off dialysis for 15 years

« Reply #10 on: September 14, 2011, 01:28:06 PM »

Thanks for all the welcomes from everyone.  I believe there was a question about how I lost my transplanted kidney.  The simple answer to that is that I lost my insurance (primarily Medicare) and was unable to get my medicine.  Without the medicine, a transplanted kidney will fail, maybe not immediately as was in my case, but it will always fail.  If there is any advice I can give, it is this:

Medicare provides insurance to us for 36 months after our transplant.  They do this so that we can get on our feet.  It is our responsibility to make sure that we have some sort of insurance outside of Medicare setup so that when Medicare coverage does end, the secondary insurance will kick in and take over our care.  This is something that I did not fully understand until it was too late, and I lost my kidney. 

I have a lot of experience dealing with Social Security, Department of Rehabilitation, doctors, nurses, and staff from the dialysis units and I know the right questions to ask.  If anyone needs help with anything, please ask me.  I might just be able to help.  I have lots of experience with the different things that can happen to you during treatment, after treatment, with depression, and other things that I am willing to discuss with anyone.  I love to help people and I think that this is a way I can be helpful. 
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-Born in !975 with blockage on bladder
-Doctors do not realize this fact until 8 days after I'm born
-Perform surgery to pull ureters out my back so I can pee (called a eurethrarostomy)
-At 3 years of age the doctors fix the bladder and return my anatomy to normal
-23 years old I have pain in my chest/cannot breath, rushed to hospital, find that my kidneys have failed
-March 1999 - first dialysis in hospital
-January 2003   Living donor transplant from cousin
-April 2009  kidney fails  back on dialysis - present 4x per week
-January 2013 - started nocturnal dialysis 3x week for 6 hours per treatment
-April 2013 - Nocturnal shift is discontinued, treatments reduced to 5 hrs apiece
July 3 2016 Received 2nd transplant from cadaver doner
Two years post transplant doing fantastic so far
gkcoley
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« Reply #11 on: September 14, 2011, 01:43:17 PM »

thats exactly what caused my kidney failure stuart :D but consider yourself lucky, they found mine when i was 3 weeks old and the damage had been done, failed transplant when i was 6 and got on dialysis at 8, now im 24 and been on dialysis ever since
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There's No Smile Of An Angel Without The Wrath Of God
Marina
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God Bless my donor family!! :)

« Reply #12 on: September 14, 2011, 01:58:13 PM »

Hi  Stuart,

 :beer1;  welcome  to  IHD!!!    :beer1;

We're  almost  neighbors, well not  exactly  but  I'm  just  across the  bay  from you.

Sorry  to hear you  lost your  kidney.

Are you currently on the  list,  or  are you  eligible  to  get on  the list???

Where  did you have your  TX?

I'm  10 months out,  I had  mine  at  California  pacific   (CPMC).

Take  care!!  :)

Marina
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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
CebuShan
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« Reply #13 on: September 14, 2011, 02:46:30 PM »

     :welcomesign;  Stuart! Glad you found us!
I was born in SF and lived in Moss Beach. My grandparents were in Fremont. So good to hear from someone from my neck of the woods!
Marina, what part of the Bay Area are you from?
I am in Illinois now. (Not by choice, my husband got transferred)
Anyway,    :beer1;  glad to meet you!

 :welcomesign;


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Think GOD doesn't have a sense of humor?
HE created marriage and children.
Think about it! LOL!
stuman413
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Have been an on and off dialysis for 15 years

« Reply #14 on: September 14, 2011, 02:53:58 PM »

Hi Marina, congratulations on your transplant!  I hope you're doing well.  To answer your question, I am currently awaiting the doctors at UCSF (where I got my first transplant) to finish all the tests for a pre-transplant evaluation.  I should be getting the letter in the mail any time now.  Then the waiting game begins, lol.  I hate dialysis, but it's keeping me alive so I am making the best of the situation. 

How are you doing with the meds?  I had a hard time with the meds at first, but as hard a time as I had with them, I enjoyed the ability to eat anything I wanted without having to down a buncha pills every meal.  Have fun with your diet (as much as you can being diabetic, I'm diabetic too).
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-Born in !975 with blockage on bladder
-Doctors do not realize this fact until 8 days after I'm born
-Perform surgery to pull ureters out my back so I can pee (called a eurethrarostomy)
-At 3 years of age the doctors fix the bladder and return my anatomy to normal
-23 years old I have pain in my chest/cannot breath, rushed to hospital, find that my kidneys have failed
-March 1999 - first dialysis in hospital
-January 2003   Living donor transplant from cousin
-April 2009  kidney fails  back on dialysis - present 4x per week
-January 2013 - started nocturnal dialysis 3x week for 6 hours per treatment
-April 2013 - Nocturnal shift is discontinued, treatments reduced to 5 hrs apiece
July 3 2016 Received 2nd transplant from cadaver doner
Two years post transplant doing fantastic so far
lmunchkin
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"There Is No Place Like Home!"

« Reply #15 on: September 15, 2011, 05:05:30 PM »

Welcome, Stuart!    :welcomesign;

lmunchkin     :flower;

 :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
Marina
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God Bless my donor family!! :)

« Reply #16 on: September 15, 2011, 10:02:45 PM »

Hi Marina, congratulations on your transplant!  I hope you're doing well.  To answer your question, I am currently awaiting the doctors at UCSF (where I got my first transplant) to finish all the tests for a pre-transplant evaluation.  I should be getting the letter in the mail any time now.  Then the waiting game begins, lol.  I hate dialysis, but it's keeping me alive so I am making the best of the situation. 
How are you doing with the meds?  I had a hard time with the meds at first, but as hard a time as I had with them, I enjoyed the ability to eat anything I wanted without having to down a buncha pills every meal.  Have fun with your diet (as much as you can being diabetic, I'm diabetic too).


Stuart,
I hope you  can  get your  GIFT  OF  LIFE  very  soon!!! 
Have  you looked  into  the  waiting  time  @ UCDavies?            It’s  a shorter  wait  time  there.             I  was  tempted to  see  if  my  insurance  would  pay  for  my  TX  there.  But,  then  I  thought  how  it’s   almost  4hrs  away,  and  having  to  live  there  for  a month  Post-TX    and  all the  follow-up  visits. 
I  decided to  stay  local .  Besides  my  estimated   wait  time  here  wasn’t  so  bad.  For  a kidney-Pancreas it  was  6months-2yrs. 
   
Oh  by  the  way,  since  I  now  have  a  pancreas,  I  can  eat  sweets  again.           But,  as  my  coordinator  said  at  discharge  “Your  medical  records  will  always  say  Type 1  diabetic,  but  now,  you have  a  pancreas  as  a    treatment   option  instead of  insulin.”
I’m  doing  good  with  the  meds.    Even  with  Prednisone.       I  was  so  afraid  it  was  going  to  put  me on a  emotional  rollercoaster  like  it  did in the  past,   but so  far  so  good   ***knocks on  wood***
Good  luck,  and  keep  on  with  those  dialysis  treatments  so they  can  keep  you  as  healthy  as  possible  for  when  Kidney   #2  becomes  available.    We  look  forward  to reading you  got   THE  CALL!!
Marina
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"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
Marina
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God Bless my donor family!! :)

« Reply #17 on: September 15, 2011, 10:04:15 PM »

     Marina, what part of the Bay Area are you from?

I'm    about   20  miles  south  of  San Francisco.
« Last Edit: September 16, 2011, 05:27:43 AM by Marina » Logged

"Anything is possible, if  you  BELIEVE....."  ~~~Joel  Osteen

"Yesterday is history, Tomorrow is a mystery, Today is a gift..... That is why it is called the present"

*************************************************
 Nov 1979 ~ Diabetes 
Apr. 2004- Nov 2010 ~ CAPD
Nov 9, 2010 ~  Received the  THE  GIFT OF LIFE at 
California Pacific  Medical  center  (CPMC)  in San  Francisco,  CA
Ang
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« Reply #18 on: September 16, 2011, 12:22:42 AM »

 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
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