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sideways
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« on: November 01, 2019, 11:21:29 PM »

Hiya folks --

I've been aware of this site since before I started hemodialysis in 2012. I finally was compelled to join because I have some questions about the HD process that I cant seem to find answers to.

I inherited polycystic kidney disease from my father. His was a strange case because no one else in his family has kidney issues. One of my siblings also inherited; he died over a year ago. He was 18 months younger than I. Thankfully the rest of my siblings have tested clear.

The hardest part of all this for me is trying to live on SSI. That and the anemia that plagues me. I am going to have to sell my house in the near future because I simply cannot afford to pay people to do all the work I used to do myself. I will probably end up in one of those subsidized government apartment buildings somewhere. It bums me out that I just cannot physically keep the place up anymore. I can't even cut grass anymore, much less clean gutters, wash windows etc. I especially miss gardening. I had a beautiful perennial border going before I got too sick to keep up with it. Gardening is sooooo labor intensive.

I'm in my 50's; female; live in a Detroit suburb.
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SooMK
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« Reply #1 on: November 04, 2019, 09:21:18 AM »

Oh sideways! I'm so sorry to read your story. You've come to a good place to get answers. My mother struggled just as you are for the same reasons. Trying to get by when there is never enough and not being able to maintain her house. Welcome to IHD.
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SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
Charlie B53
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« Reply #2 on: November 05, 2019, 03:01:03 AM »


Hi Sideways and Welcome to IHD!

I fully understand how the constant exhaustion keeps us from getting much done that we used to freely do arounod the place.  I have 3 acres of yard that isn't being cared for like I used to do.  Ditto my garden.

Son does come over about once a month and we hit the yard, but the rest of the time it looks pretty sad.

Selling and downsizing isn't an option, settling of the basement and cracks have pretty much ruined the value until I find a way to afford repairsd, which won't be easy or cheap.

We are always glad to have new members as we all have a little different adventure and sharing experiences really can help get through this.

Take Care,

Charlie B53
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cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: November 05, 2019, 11:54:30 AM »

Welcome to the site Sideways


 :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
LorinnPKD
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« Reply #4 on: November 10, 2019, 04:09:59 AM »

Hi there,

Just wanted to say hello & send you a little PKD solidarity.

I'm glad you found us.

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fightingPKD
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« Reply #5 on: November 12, 2019, 07:43:49 AM »

Hiya folks --

I've been aware of this site since before I started hemodialysis in 2012. I finally was compelled to join because I have some questions about the HD process that I cant seem to find answers to.

I inherited polycystic kidney disease from my father. His was a strange case because no one else in his family has kidney issues. One of my siblings also inherited; he died over a year ago. He was 18 months younger than I. Thankfully the rest of my siblings have tested clear.

The hardest part of all this for me is trying to live on SSI. That and the anemia that plagues me. I am going to have to sell my house in the near future because I simply cannot afford to pay people to do all the work I used to do myself. I will probably end up in one of those subsidized government apartment buildings somewhere. It bums me out that I just cannot physically keep the place up anymore. I can't even cut grass anymore, much less clean gutters, wash windows etc. I especially miss gardening. I had a beautiful perennial border going before I got too sick to keep up with it. Gardening is sooooo labor intensive.

I'm in my 50's; female; live in a Detroit suburb.

PKD crew checking in.

This post hit me a little hard.  Mostly because of the underlined.

I picked up adult onset PKD (or whatever they call it) also through spontaneous mutation/losing the genetic lottery.   No idea I had it until one of my kidneys actually broke apart and I nearly died at 31.  I'm 46 now.
We almost didn't have a child because I had a VERY difficult time convincing myself to have one knowing there's a 50/50 chance he'll be afflicted by this disease.   Only had one son - part of it was being married to someone older, part of it was because he was a high maintenance kid and we had no family support system to help.  When we were finally ready for #2, she aged out.  Probably for the best.

...but yeah, every year I worry about him getting it.  He's already exhibiting moderately high blood pressure at 13.  Not enough for medication, but it just gives me flashback to 30-35 years ago when I was in the same boat.  I realize having high blood presure <> having PKD, but it's still discouraging.

Welcome to the forums. 
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