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Annig83
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« on: June 23, 2011, 11:20:19 PM »

Hello everyone. :waving;

My name is Annie, I am 28 years old and have long struggled with kidney disease. 
I was diagnosed at 13 with having Nephrotic Syndrome, or GN.  I had shown no signs or symptoms of anything being wrong, until I went to the allergist. He performed a routine BP check, in which it was 170/120.  I was instantly referred to a nephrologist and was given the GN diagnosis, after a biopsy.
I had NEVER been sick.  I never even had the chicken pox as a child.
Over the years I was stable with my routine checks, healthy eating, and exercise.  About three years ago, my doctors noticed that my creatinine was rising in the low 2's, but they saw no cause for concern, and just adjusted my medications as necessary.  I developed rheumatoid arthritis at age 23, ovarian cysts, and moderate depression.  Doctors told me that I had a very low chance of getting pregnant, and should take precautions.  Three years ago, I met my soulmate, Landyn and regardless that we were careful, I ended up pregnant with my son.  My creatinine quickly rose to the high 3's throughout my 1st and 2nd trimester.  I saw all of the best high risk doctors, and watch my BP and creatinine weekly, needless to say I was a pin cushion.  At exactly seven months along, my BP soared and my creatinine hit 6.6.  My doctors had to deliver my son via C-section, and he was only 1 lb 12 oz.  He was in the NICU for 2 months.  Additionally, I was in the hospital for a month, recovering and having a PD cath. put in, and dealing with 3 blood clots in my arm.
The best day of my life was bringing Carson, (my son) home from the hospital.  He is now 13 pounds and growing like a weed.  :)   
I started doing dialysis back in March, but my first catheter failed to work.  It was removed and I had a month off to heal.  In April my catheter was placed back in on the opposite side.  It worked for about a week, but I had fatty tissue that was "grabbing" the cath. and pinching it off.  I had the most painful surgery ever, where the surgeon "tacked' up the tissue with stitches.  It pulls every once and a while and it almost takes my breath away when it pulls, but it thankfully does work now.  I use the CCPD machine (Liberty) and I have been feeling much better.  I just started about 2 weeks ago, and it's all new obviously, but I am so relieved to be able to play with my son now.  Before, I was so tired and rundown that I couldn't do anything.  I am just thankful for everything I've been through, I think I am much stronger.  :boxing;
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
RichardMEL
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« Reply #1 on: June 23, 2011, 11:37:02 PM »

Welcome to IHD Annie!!

You've been through a bit that's for sure. It can't have been easy being told of your kidney problems and potential future as a teenager - that would sure put a cramp in your decade - but you held up for a long time. Luckily you hopefully are in a bit of a routine with the liberty cycler and hopefully you can now have the energy to look after your son and live life more fully.

Hopefully being part of our community can help you on your journey.

 :welcomesign;

RichardMEL, Moderator
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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!
rsudock
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will of the healthy makes up the fate of the sick.

« Reply #2 on: June 24, 2011, 12:07:11 AM »

welcome!   :cuddle;
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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?
Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #3 on: June 24, 2011, 12:36:56 AM »

Welcome to our community, Annie! Thanks for sharing with us.  I am so happy to hear that Carson is doing well and you are able to enjoy him.  You are the same age as my daughter so from the start I was touched by your story.  You have found a great place for information, support and encouragement.  You will find that this is more than just a forum - it's a family :grouphug;  Your duty is to keep reading and keep posting.  We expect picts of Carson shortly.  Please let him know that he has tons of caring aunties and uncles all over the world.
Looking forward to hearing more from you.



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;
willowtreewren
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My two beautifull granddaughters

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« Reply #4 on: June 24, 2011, 06:11:45 AM »

 :welcomesign;

Annie!

I'm glad you found IHD for all the support and information you can find here.

Aleta
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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. :)
ihernandez
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« Reply #5 on: June 24, 2011, 09:19:15 AM »

welcome to ihd
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Dialysis is not a Diseas its a life style
jbeany
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Cattitude

« Reply #6 on: June 24, 2011, 11:58:33 AM »

Wow, what a roller coaster ride!  So good that both of you came through.

Welcome to IHD!

jbeany, Moderator
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Ang
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« Reply #7 on: June 24, 2011, 08:38:22 PM »

 :welcomesign;
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live  life  to  the  full  and you won't  die  wondering
galvo
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« Reply #8 on: June 25, 2011, 12:25:42 AM »

G'day, Annie, and  :welcomesign;:ausflag;
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Galvo
peleroja
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I have 16 hats, all the same style!

« Reply #9 on: June 25, 2011, 09:58:43 AM »

Welcome to the group, Annie.  Lots of good information and friends here.  Glad you found us!
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Rerun
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Going through life tied to a chair!

« Reply #10 on: June 27, 2011, 11:15:51 AM »

 :bump;
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Annig83
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« Reply #11 on: June 27, 2011, 05:23:17 PM »

Thanks all.  I admit I am neglectful in replying, but am doing my best to respond to you all... it's hard chasing after a 7 month old who thinks he can walk already haha.  I will post a pic of Carson :) 
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
Bruno
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TOFF (typical old Fart)

« Reply #12 on: July 03, 2011, 02:40:25 AM »

Hi Annie and good luck.
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