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Author Topic: My Story  (Read 5570 times)
MightyMike
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Why do bad things always happen to good people?
« on: September 15, 2012, 11:48:11 AM »
Hello Everyone,
My name is Mike I'm 32 years old and from New Jersey.  My story begins in December of 2003 when I was first diagnosed with IgA Nephropathy and 80% function left almost 3months after I had got married.  In October of 2004 I started In-Center hemodialysis through a perma-cath with less then 5% function left.  2 weeks later on a day after dialysis I ended up in the hospital with a priapism (erection lasting more then 4 hours).  They said the cause was from too much fluid being drained.  I had 2 surgeries over the next 3 days to try and correct it.  The first surgery never healed so I had to have another surgery in April 2005 to fix that.  Too this date I still have Erectile Dysfunction.  In September 2005 I received a living related donor transplant from my mother.  In March of 2008 I ended up in the hospital with rejection and had to be given a series of Thymoglobulin to pretty much kill my immune system.  May of 2008 me and my wife seperated.  June of 2008 back in the hospital with a Deep Vein Thrombosis(blood clot) in my pelvis.  August of 2008 I met my eventual fiance.  In March of 2009 I ended up back in the hospital for rejection again they had to put in a perma-cath but the nurse fed me before the procedure so all they could use was lidocain no sedation and shoved it in.  This time they tried plasmapharesis and IVIG to fix it but my body couldn't tolerate the IVIG.  I was diagnosed with CKD and that the IgA Nephropathy had returned.  July of 2009 my divorce was finalized. August of 2009 I had a fistula done in my upper left arm.  November 2009 I started In-center Hemo.  February of 2010 I got engaged.  December 2010 I started Home hemo.  August of 2011 was found to have a herniated disc in my lower back cause chronic pain in my back and legs.  Due to stress on my fiance because of her job and having to come home and help me with dialysis I wen back to in-center hemo in January 2012 to this date.  I have high donor antibody making it tough to get a match for a transplant.  August of 2012 after 4 years together my fiance had broke it off.  I currently have High bp, chronic pain, ED, anxiety, depression, anemia, edema.  I'm glad to have found a community with similar issues as I, knowing I'm not the only one with this issues.  Thank you for reading I look forward to reading all your stories.
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"The greatest pleasure in life is doing what people say you cannot do."
   -Walter Bagehot
==========================
December 2003 diagnosed with IgA Nephropathy 80% Function.
October 2004 started In-Center Hemo Dialysis Perma-Cath 5% Function.
September 2005 Living Related Donor (Mother) Transplant.
March 2009 Diagnosed CKD and IgA Nephropathy.
August 2009 Upper Left Arm Fistula.
November 2009 started In-Center Hemo Dialysis.
December 2010 started Home Hemo Dialysis.
January 2012 went back to In-Center Hemo Dialysis.
chinksnicky
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« Reply #1 on: September 15, 2012, 12:17:33 PM »
Welcome Mike,you sure make my situation seem not so bad,I thought starting hemo at 52 was young.at our center we also have a guy about your age.I started not long after you in April 2010.I'm reluctantly considering transplant but really I hear more bad than good.Good Luck       Nick
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cassandra
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When all else fails run in circles, shout loudly
« Reply #2 on: September 15, 2012, 03:39:46 PM »

    :welcomesign;  to the site MightyMike

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
2020 start Gambro AK96

       still on waitinglist, still ok I think
MommyChick
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Me & my precious Miracle !!!
« Reply #3 on: September 15, 2012, 05:25:07 PM »
Hello & Welcome MightyMike :waving;
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~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
Leanne
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« Reply #4 on: September 15, 2012, 05:48:49 PM »
Hi Mike and welcome.  Dialysis is definitely stressful to our family and to us.  Glad to meet you.
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Leanne

I am more than a patient.  I am a mama, friend, wife, sister, and most of all a person.

41 years old, hemo since November 2011, trained for PD and tried numerous times.  PD did not work for me , it was a nightmare :(
Jill Marie Evans
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« Reply #5 on: September 16, 2012, 11:34:09 AM »
Wow, what a story! Makes you wonder, doesn't it? I don't look so good "on paper" myself!  It makes me wonder if I was a Nazi or something in my last life..LOL...geez...
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Poppylicious
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WWW
« Reply #6 on: September 17, 2012, 01:16:28 PM »
 :welcomesign; Mike!
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
MightyMike
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Why do bad things always happen to good people?
« Reply #7 on: September 19, 2012, 04:43:24 PM »
Thank you everyone for your welcomes.  I hope I can contribute some of my experiences and knowledge to those who need it.
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"The greatest pleasure in life is doing what people say you cannot do."
   -Walter Bagehot
==========================
December 2003 diagnosed with IgA Nephropathy 80% Function.
October 2004 started In-Center Hemo Dialysis Perma-Cath 5% Function.
September 2005 Living Related Donor (Mother) Transplant.
March 2009 Diagnosed CKD and IgA Nephropathy.
August 2009 Upper Left Arm Fistula.
November 2009 started In-Center Hemo Dialysis.
December 2010 started Home Hemo Dialysis.
January 2012 went back to In-Center Hemo Dialysis.
babycake
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« Reply #8 on: September 23, 2012, 09:44:17 AM »
we have a tech.. that was a former dialyis patient
he was 6yrs old when he started dialyis
he was on dialyis for 22yrs and had 5 transplants done

and when he told me that
i said and you wanted to be a tech
i guess it was showing
what he wanted
iin order to
help others
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Jean
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« Reply #9 on: September 24, 2012, 12:07:18 AM »
Wow Mike, sounds like you have already been thru the wringer. Hope things get better for you  soon and hope you enjoy it here. This a great site and you, I am certain, will be a welcome addition to the crew.   :welcomesign; :welcomesign;
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One day at a time, thats all I can do.
JennyGirl595
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I used to have a handle on life, but it broke.

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« Reply #10 on: September 24, 2012, 06:47:47 AM »
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny
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June 2008 - diagnosed with Chronic Interstitial Nephritis
Aug 2009 - developed neuropathy in legs
Jan 2010 - renal biopsy
Feb 2011 - developed negative myoclonus in hands
Sept 2011 - took medical leave from my job (transitioned into long-term disability)
July 11, 2012 - peritoneal dialysis catheter placed
July 27, 2012 - began using Baxter HomeChoice cycler
March 20, 2013 - got the most amazing phone call! A kidney swap/chain thingie was put together and they were looking at April for the transplants to take place. My sister would be a donor in the exchange. My angel :)
April 9, 2013 - last dialysis!
April 10, 2013 - Transplant at Emory University Hospital in Atlanta (they also removed my PD catheter)
April 25, 2013 - my sister donated a kidney as my partner in the kidney swap
May 10, 2013 - my surgeon at Emory arranged for all six of us involved in the kidney exchange to "meet" via Skype call. It made the FOX 5 news!
May 23, 2013 - had renal stent removed
October 19, 2013 - All six of us involved in the kidney exchange met face-to-face. We came from six different states but once we were together, it was like we knew each other forever and we truly became family.
http://insearchofusedkidney.blogspot.com - Jenny's Journey - my blog (not updated much anymore...)
Lillupie
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wedding 12-10-11

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« Reply #11 on: September 24, 2012, 07:37:52 AM »
Welcome Mike,
 You have said a few things in my posts. I am so sorry you have had to go through so much and your divorce is hard. Do you have any siblings or nearby family?

Lisa
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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
Lillupie
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wedding 12-10-11

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« Reply #12 on: September 24, 2012, 07:38:46 AM »
Quote from: babycake on September 23, 2012, 09:44:17 AM
we have a tech.. that was a former dialyis patient
he was 6yrs old when he started dialyis
he was on dialyis for 22yrs and had 5 transplants done

and when he told me that
i said and you wanted to be a tech
i guess it was showing
what he wanted
iin order to
help others

5 transplants? Wow. And he is ok with being  atech?

Lisa
Logged
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
Lillupie
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wedding 12-10-11

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« Reply #13 on: September 24, 2012, 07:39:36 AM »
Quote from: JennyGirl595 on September 24, 2012, 06:47:47 AM
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny

Can I ask, what do you have so many antibodies?? I have a lot too through pregnancy, and I had 4 blood transfusions.

Lisa
Logged
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
MightyMike
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Why do bad things always happen to good people?
« Reply #14 on: September 24, 2012, 08:23:10 AM »
I developed the antibodies through my transplant.  Tested negative until about 2 1/2 years in.  Just another thing that caused it to fail.
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"The greatest pleasure in life is doing what people say you cannot do."
   -Walter Bagehot
==========================
December 2003 diagnosed with IgA Nephropathy 80% Function.
October 2004 started In-Center Hemo Dialysis Perma-Cath 5% Function.
September 2005 Living Related Donor (Mother) Transplant.
March 2009 Diagnosed CKD and IgA Nephropathy.
August 2009 Upper Left Arm Fistula.
November 2009 started In-Center Hemo Dialysis.
December 2010 started Home Hemo Dialysis.
January 2012 went back to In-Center Hemo Dialysis.
babycake
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« Reply #15 on: September 24, 2012, 08:34:12 PM »
Quote from: Lillupie on September 24, 2012, 07:39:36 AM
Quote from: JennyGirl595 on September 24, 2012, 06:47:47 AM
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny

Can I ask, what do you have so many antibodies?? I have a lot too through pregnancy, and I had 4 blood transfusions.

Lisa
Quote from: Lillupie on September 24, 2012, 07:38:46 AM
Quote from: babycake on September 23, 2012, 09:44:17 AM
we have a tech.. that was a former dialyis patient
he was 6yrs old when he started dialyis
he was on dialyis for 22yrs and had 5 transplants done

and when he told me that
i said and you wanted to be a tech
i guess it was showing
what he wanted
iin order to
help others

5 transplants? Wow. And he is ok with being  atech?

Lisa

yea he seem to be fine.
it doesnt bother him
 there are several other davita centers in town
so he comes to where im at every so often
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boswife
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us and fam easter 2013
« Reply #16 on: September 24, 2012, 08:55:27 PM »
wow and welcome ;)   its great you found your way here and looks like you'll be right at home.. you have lots of stuff to share and help.  Hope you get lots of help too  :flower;
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im a california wife and cargiver to my hubby
He started dialysis April 09
We thank God for every day we are blessed to have together.
november 2010, patiently (ha!) waiting our turn for NxStage training
January 14,2011 home with NxStage
lmunchkin
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"There Is No Place Like Home!"
« Reply #17 on: October 01, 2012, 06:49:51 PM »
Hello & Welcome Mike!  Looks like you have a story to share!

God Bless,
lmunchkin :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
babycake
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« Reply #18 on: November 06, 2012, 07:17:34 AM »
Quote from: Lillupie on September 24, 2012, 07:39:36 AM
Quote from: JennyGirl595 on September 24, 2012, 06:47:47 AM
Hello Mike!  I'm new too.  It's nice to have this community where we can all relate to one another and offer support.

I also have a high antibody count (90), which will make finding a transplant match kind of tough.  But I believe one day we will both find our perfect kidney and our health will be restored.  Keep the faith.  I know it's hard to do, but we must do it for ourselves.  In the meantime, lean on us, we are here for you.   :grouphug;

Jenny

Can I ask, what do you have so many antibodies?? I have a lot too through pregnancy, and I had 4 blood transfusions.

Lisa



LISA....

you stated you had 4 blood transfusions

i had if i recall right i had about 5
my blood level was so low.. it went down to 5
they were going to do a transversion on a sat
and i was out of it on a wed when a friend of mine came over
and she said Bonnie i dont think
your going to make it untill sat
that nite on wed.. i was in the hospitol and they did the cross match and the
transfusion that following morning
my blood level when last check was 10.9 which is very good
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