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Author Topic: Hello Out There!  (Read 3027 times)
HelloKidney
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« on: May 30, 2012, 10:52:48 AM »

Hello -

I was diagnosed with PKD when I was around 5 yrs old. It runs pretty aggressive in my family everyone was in ESRD by their late 30's/middle 40's.

My doc has told me it is time to get a fistula surgery (I decided against peri) and while my family is a great resource to me, I think it is good to get opinions from others as well!

I am really impressed with this forum, and I am looking forward to getting to know everyone!

Denise


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MooseMom
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« Reply #1 on: May 30, 2012, 11:40:45 AM »

There are quite a few members who have PKD, too, and can empathize with your situation.  I'm really glad you found us and hope you will post often.  If there's any questions you may have, please feel free to ask.
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"Empathy is the soul of democracy."  Jeremy Rifkin
Sue
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« Reply #2 on: May 30, 2012, 07:50:30 PM »

Hi Denise  :waving;
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Life is not measured by the number of breaths we take, but by the moments that take our breath away.
HelloKidney
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« Reply #3 on: May 30, 2012, 08:32:53 PM »

MooseMom - Thanks for your note, I  already posted my first question. :)

Sue - I like the smiley face!

 
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SugarBear
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« Reply #4 on: May 30, 2012, 09:34:16 PM »

 :welcomesign;

Glad to have you join us!

Nelson
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CKD due to FSGS 1999
Drop from Stage 4 to Stage 2 ESRD 2000
ESRD 2005
Started Dialysis September 13, 2006
Short Daily Home Hemo March 2009
Back to In Center Hemo August 2009 (Too Many Hours)
Nocturnal Home Hemo May 2010
Received Transplant March 1, 2012
Poppylicious
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WWW
« Reply #5 on: May 31, 2012, 01:40:39 AM »

 :welcomesign; Denise!
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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.
conchman
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« Reply #6 on: May 31, 2012, 05:00:54 AM »

Hi Denise.  I am PKD also.  My dad had it, and my son is confirmed.  I am just turning 50, I have taken pretty good care of myself, don't drink or smoke, and am now about 30%.  How are your levels?  I will be following in your footsteps so it's great to have you onboard...Keep coming back...

 :welcomesign; :bandance; :welcomesign; :bandance;
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"If I had trouble the warranty said, breathe in, breathe out, move on"- J.Buffett

1991 diagnosed PKD (kidneys, liver)
2010 kidneys at 35% (left 2x size)
2011 kidneys at 30% (left 2x size)
willowtreewren
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My two beautifull granddaughters

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« Reply #7 on: May 31, 2012, 05:04:53 AM »

Hi, Denise!

 :welcomesign;

As you can see by my information under my post, our family is also stricken by PKD!

My daughter is now in her mid-thirties and expecting her third child. I worry about how that will affect her PKD.

There is much to learn here and also much support.

 :cuddle;

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. :)
lmunchkin
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"There Is No Place Like Home!"

« Reply #8 on: May 31, 2012, 04:36:48 PM »

Hi & Welcome Denise!  Lots of great people here.  So glad you found us.

Again welcome & God Bless,
lmunchkin
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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
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #9 on: May 31, 2012, 04:39:36 PM »

 :welcomesign;

Glad you found us!

 :flower; :flower; :flower;
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Bajanne
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Goofynina and Epoman - Gone But Not Forgotten

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« Reply #10 on: May 31, 2012, 04:45:07 PM »

Welcome to our community!  You have made a good choice in joining this group.  This is just the place for information and support.  We are more than a website - we are a genuine family  :grouphug; as you will find out.  Just keep on posting and keep on reading.  We are here for 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;
Butterfly7
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Butteryfly7

« Reply #11 on: June 13, 2012, 12:19:39 PM »

Hi HelloKidney
I too was diagnosed early with PKD.  I am hopeful to get a transplant in the next few years.
Mom =Johns hopkins   brother = charlotte med center CMC
Good luck to you.
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Polycystic Kidney Disease diagnosed 38 years old
Brother, Mom, 2 Aunts and Cousin all have kidney transplants and doing well.
Started in-center Hemodialysis 5-16-2016.  On transplant list 3 years 4 months.
Hoping for a miracle in 2017!!
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #12 on: June 13, 2012, 12:32:57 PM »

Hello and welcome!  I'm sorry that genetics have dealt a bad hand to you and your family, but look forward to seeing you on the forum.
 :welcomesign;
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
Cordelia
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« Reply #13 on: June 14, 2012, 06:05:30 PM »

Hi HelloKidney,

Welcome to the forum!          :welcomesign;

I have PKD too
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Rerun
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Going through life tied to a chair!

« Reply #14 on: June 15, 2012, 04:41:13 AM »

HelloKidney..... I love that ! 

Welcome!

Rerun, Moderator     :welcomesign;
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RichardMEL
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« Reply #15 on: June 17, 2012, 01:55:14 AM »

G'day Denise and welcome to IHD. I love that you like our forum already - I hope being part of our community can be helpful to you as another non-family perspective on what you're facing.. and somewhere to vent and discuss your concerns.

Welcome again to IHD!

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!
Butterfly7
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Butteryfly7

« Reply #16 on: April 12, 2017, 08:58:11 AM »

Hi there - did you get the Fistula Surgery?
It's not so bad a year in now....the initial scars are healing... Hope you are hanging in there.
Had a CT scan on size of kidneys -since it is PKD, but surgeons at Georgetown and VCU said no reason to remove them just yet -their still 'markedly enlarged' but maybe they will come out after transplant.
Have a great day...
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Polycystic Kidney Disease diagnosed 38 years old
Brother, Mom, 2 Aunts and Cousin all have kidney transplants and doing well.
Started in-center Hemodialysis 5-16-2016.  On transplant list 3 years 4 months.
Hoping for a miracle in 2017!!
Rerun
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Going through life tied to a chair!

« Reply #17 on: April 12, 2017, 12:01:02 PM »

This post is old.  2012...  you need to check the date...  You probably won't get a reply.
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Charlie B53
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« Reply #18 on: April 18, 2017, 05:28:11 AM »


For a minute I thought that I'd somehow missed a new member's first post.  Until I was scrolling down and saw a post from a deceased member.  Then I started looking at the dates and finally got down to the last two recent posts.

I can only Hope that all has gone well.  But this post serves as a reminder how this insidious desease strikes whole family's.

We have so much yet to learn before we can conquer this desease, and one day prevent the damage, to keeping our kidneys functioning well.
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