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Author Topic: My renal sabbatical on a scale of 1-10  (Read 3158 times)
girliekick
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« on: March 16, 2009, 05:13:07 PM »
Babygirlsmom's Daughter....


Im 26 and have been on dialysis for 9 mo. I found out I had kidney failure at the age of 21. I refused a biopsy bc I was told they would have to do it on my larger kidney (appx8cm other 5cm) I couldn't bear the thought of being 21 and being on dialysis. I wonder about this alot. I started school and officially started working on my depression/anxiety issues. 

I have a clotting disorder, and markers for an autoimmune disorder. My body hates every thing I put in it. (giving me obvious concerns about transplant) I have had 16 surgeries in since June 28. I keep hoping that I will only have one more.

I did hemo until dec. and since then cycled through capd, the cycler and hemo. I still have a perma cath in that we know is clotted but we leave it in just in case it has to be replaced (less damage in my increasingly damaged veins) It annoys me :stressed; !!! I have many scars, and tubes hanging out my body, tape everywhere (it seems) I've gained enough weight that I think there is a baby inside of me and no one is telling me. JK

My main problem right now is I have deep pelvic pain or lower abdomen pain when I drain and sometimes when I fill.   My doctors are out of answers and questions it seem. So I am just dealing the best I can. My pcp put me on diludan......I had withdraws horrible withdraws after the first pill.   Im looking for pain mgm techniques. Im tired of spending my time at the docs office, clinic, and hospital.

The psychological and physical pains are both hard to rate on a scale of 1-10. I find my self stressing the number ten and saying the world help alot more than I ever imagined.

I try and tell myself this is a break from my old life and it will return. Some days I believe myself and some I dont.

This is what I call my renal sabbatical. soon I hope to get back in school, where I was studding photography, and eventually will persue a degree in art therapy..... maybe Ill even study pain  :rofl;

My family is great, a Lil crazy. But I am so glad to have them to lean on.

Pray for my Lil (19) brother. Something is abnormal in his blood. Pray its nothing major..... He is terribly scared of needles.

Thanks for listening
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
pelagia
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« Reply #1 on: March 16, 2009, 05:22:54 PM »
Wow, that is really a lot to deal with.  Much more than anyone your age should even contemplate.  I am sorry that you are in pain.  I hope that the docs can figure it out and get your condition stabilized.  No one should have to be in pain.  Hopefully the IHD PD experts will weigh in on the issues you are having with pain on draining.  Others here have had the same and there have been some suggestions which I am not remembering right now.  Through all of this, your spirit shines through.  :cuddle;
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
paris
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« Reply #2 on: March 16, 2009, 05:29:02 PM »
 :welcomesign;    I just want to hug you  :cuddle;   You have been dealt so much and it isn't fair for a 21 yr old.   There are several members who have kidney problems since childhood and hopefully they can give you strength with their stories.  This is a great place for support.  We really do care about each other.   Looking forward to hearing more from you.   Glad you joined us!




paris, Moderator
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Romona
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« Reply #3 on: March 16, 2009, 05:57:09 PM »
 :welcomesign;
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Rerun
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Going through life tied to a chair!
« Reply #4 on: March 16, 2009, 06:29:45 PM »
I think you would like the T-Shirts on this site:

http://www.cafepress.com/ihatedialysis

It has one that says:  Detour.... Life.... Dialysis

                   :welcomesign;
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Dan.Larrabee
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Dialysis Dan
« Reply #5 on: March 16, 2009, 07:32:40 PM »
  :waving; Hi.
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AKA Dialysis Dan
Feeling the best I can because of Home Hemo
Doing it the best way I can by making it Nocturnal
Sharing it to help everyone feel they best they can
www.youtube.com/dialysisdan
G-Ma
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« Reply #6 on: March 16, 2009, 07:34:12 PM »
 :welcomesign;
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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
MIbarra
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Stopping to smell the bluebonnets
« Reply #7 on: March 16, 2009, 07:43:08 PM »
 :welcomesign;! I hope this site helps you. It does me.
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Cadaver transplant April 29, 2007
monrein
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Might as well smile
« Reply #8 on: March 16, 2009, 09:01:39 PM »
I'm so very sorry that you must deal with so much and so young.  Not fair in the slightest.  Now you have TWO slightly crazy families...yours and this one.   :welcomesign;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
paul.karen
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« Reply #9 on: March 17, 2009, 09:26:22 AM »
 :waving; Girl
Welcome to IHD.

What a story.
Hope to see you on many of the threads.
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
Joe Paul
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« Reply #10 on: March 17, 2009, 11:24:56 AM »
Welcome Girl, good to have you aboard.
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
willieandwinnie
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« Reply #11 on: March 17, 2009, 03:49:04 PM »
 :welcomesign; girliekick. Great introduction and I'm really sorry you have gone through so much in your short life. That really sucks. We are so glad you joined us and we can add to the crazy family you already have. We offer great support and loads of information. Please post often.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
RichardMEL
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« Reply #12 on: March 17, 2009, 08:39:03 PM »
Welcome girl!! Lots of hugs  :cuddle; to you!! So much to go through yet you still find time to worry about others (your brother) and being realistic about your own traumas and battles. I think you will fit in OK here.. hopefully we can help you during the harder times with support and of course pray for the day things improve.. or at least settle down!!

 :welcomesign;
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
TeenHatesDialysis
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WWW
« Reply #13 on: March 18, 2009, 09:12:26 PM »
 :welcomesign; GirlieKick,

Sorry that you have to go through all of this crap. ??? I am glad that you have the support of your family and lots of friends here. This group is the greatest for support.  Great information here.


I am sending positive vibes your way.  :flower;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
Laurie
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May 13, 2008
« Reply #14 on: March 19, 2009, 06:07:56 PM »
 :welcomesign; Glad you found this site. It sucks to be so young and have to go through this. I was 21 when I started. Hang in there, it will get better.
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
mikey07840
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Her royal highness Queen Ruth on her throne, RIP
« Reply #15 on: March 25, 2009, 10:51:55 PM »
 :welcomesign;
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

• Don't Knock on Death's door; Ring the bell and run away. Death hates that.

• I'm not a complete Idiot -- some parts are missing.
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #16 on: March 26, 2009, 08:33:16 AM »
Welcome to our community!  You have really been handed some challenges!  You have made a good decision to join us.  This is just the place for information and support; also caring and understanding ears when you need to rant, vent, rage or rave!  In fact, please consider this your online family  :grouphug;  Just keep reading and keep posting.



Bajanne, Moderator
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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;
girliekick
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« Reply #17 on: March 26, 2009, 03:41:33 PM »
Thank you all, I am glad to have found you :flower;
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
MandaMe1986
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« Reply #18 on: March 26, 2009, 04:11:06 PM »
I feel you, I am glad you found this site.  I am 22 and I found out I had kidney problems 8 years ago.  I have so had good times and really bad. And it is reall hard to deal with sometimes.  If you never want to talk to someone your age, hit me up. I am always around. Hope to see you around more too.
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
girliekick
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« Reply #19 on: March 26, 2009, 04:58:52 PM »
Thanks, I often find myself wondering what it feels like to be young.

Talk to you soon manda :cuddle;
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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
MandaMe1986
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« Reply #20 on: March 26, 2009, 05:07:06 PM »
haha me too.  And sounds good
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Blessed are the poor in spirit, for theres is the kingdom of heaven.
Blessed are they who mourn, for they will be comforted.
Blessed are the meek, for they will inherit the land.
Blessed are they whohunger and thirst for righteousness, for theywill be satisfied.
Blessed are the merciful, for they will be shown mercy.
Blessed are the clean of heart, for they will see God.
Blessed are the peacemakers, for they will be called children of God.

Matthew 5:3-9
Sluff
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« Reply #21 on: March 26, 2009, 07:21:46 PM »
Welcome to Ihatedialysis.com

Take advantage of all this site has to offer.  We have become a real family, caring and sharing.  You will definitely enjoy it here.  Keep posting and let us know what is happening in your life.  If it is nothing to do with kidneys, check out our Off-Topic section.  But keep posting. You have been through alot, maybe some of our members will learn from your experiences.

Sluff/Admin
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