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Erika1212
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« on: May 18, 2016, 05:50:31 PM »

Hello, My name is Erika. I am 39 years old and I have PKD stage 5. My father had the disease and I just found out after I was diagnosed that my 13 year old and my 11 year old daughters also have the disease. My kidney function is at 11% and I just had a PD catheter placed May 6th. I am doing training at this time for dialysis.
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kickingandscreaming
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« Reply #1 on: May 18, 2016, 07:04:44 PM »

That must be so hard, Erica, to deal with so many loved ones with the same diagnosis at the same time.  I'm sorry, but I welcome you to IHD.  I am just a couple of months ahead of you doing PD on the cycler now.  I think it's a good way to start out on this inevitable journey.  Best of luck to you.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Vt Big Rig
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« Reply #2 on: May 19, 2016, 03:49:31 AM »

Welcome to the site, Erica.

Glad you found us but sorry you are on the journey.

None of us want to be here but you will find support, information, and advice here that should help you.

Good Fortune
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Charlie B53
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« Reply #3 on: May 19, 2016, 04:19:15 AM »


Welcome to IHD!

I can imagine how much turmoil your heads is right now.   Relief that you are starting therapy that will help you feel better and shock knowing that your girls are developing the same problem, and will eventually be in the exact situation you are now.

There are a number on here that had done well amending their diets to more 'renal friendly' diets and reduced the deterioration of their kidneys for quite some time before finally getting where they did have to begin Dialysis.    This is the time to seriously begin educating all.  I am sure those girls mean everything to you and you will be studying everything.

We are all here to share.   Ask anything, we are all 'Family'.   Glad that you have found us!

Take Care,

Charlie B53
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Rerun
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Going through life tied to a chair!

« Reply #4 on: May 19, 2016, 06:29:06 AM »

Hi Erika, I'm so glad  you found us.  PKD is so devastating for families.  How is your Dad doing?  I hope they find a cure before your kids have to worry about this.  Hang in there.  You are in the right spot to talk about this and to get questions answered.
Thank you for joining. 

Welcome, Rerun - Admin.    :welcomesign; 

 
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Michael Murphy
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« Reply #5 on: May 19, 2016, 09:15:40 AM »

Erika there is no doubt that dialysis sucks but I no longer view it as a treatment but as a bridge to a better future. There is amazing research that is just starting to reach the testing stage that may eliminate the hardships of dialysis. Implantable Artifical Kidneys, Wearable Artificial kidney, cloning, better filters, easier to use machine.  Read the research and you will be amazed.  It appears the future will be better for ESRD patients.  I am 65 and I hope this arrives in my lifetime, but I am sure it will have arrived for your children.  I look for a better future, it makes being a dialysis inmate bearable.
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Erika1212
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« Reply #6 on: May 19, 2016, 02:03:33 PM »

   
Re: new member
Reply #4 on: Today at 06:29:06 AM
Reply with quote
Hi Erika, I'm so glad  you found us.  PKD is so devastating for families.  How is your Dad doing?  I hope they find a cure before your kids have to worry about this.  Hang in there.  You are in the right spot to talk about this and to get questions answered.
Thank you for joining. 

My father passed away 10 years ago. He was 52. He struggled with dialysis, got a kidney it failed and then went back on dialysis. He ultimately had a stroke which from there on he just steadily declined and passes. I don't want my kids memories to be the same as mine. He would tell me don't worry by the time your kidneys fail they will be producing them on a production line, and here I am. I am young my kids make me feel younger. I am very active with my kids. My 13 year old plays travel softball. She practices 4 days a week and plays 3 weekends out of a month. They play minimum 5 games in a weekend. I want my life to stay as normal as possible. Any advice is welcome.
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Michael Murphy
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« Reply #7 on: May 19, 2016, 03:38:58 PM »

I am a hemo patient but I know some dialysis patients live extrondiary lives, there is one individual Bill Pekham who took a trip down the Colorado River through the Grand Canyon. Amazingly he brought a dialysis machine and did his own treatments. Zach posted a picture of him sitting in a raft being treated with the Canyon as background. If he can do that I believe you can do what ever you need to do. 
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SooMK
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« Reply #8 on: May 20, 2016, 07:37:23 AM »

Welcome Erika! Having genetic kidney diseases means we have to hope that great strides will be made for the future of our families. I'm sure you'll find IHD helpful.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
cassandra
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When all else fails run in circles, shout loudly

« Reply #9 on: May 21, 2016, 03:45:27 PM »

Welcome to the site Erica

    :welcomesign;

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
       still on waitinglist, still ok I think
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