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Brooklynite
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« on: July 22, 2019, 01:53:19 PM »

My name is Brooklynite and I've been on dialysis for 20 years.   I was in center for 11 years and now I'm home on HHD for 8 years.

I can't believe 20 years went by.  I remember a former primary doctor told me that I will only live 5 years on dialysis.  I laughed at him because he was so smart until his was stupid.

Anyhoo, my kidney failure comes from high blood pressure.  I now have it under control that sometimes it's too low. 

The first time I went for a transplant, my doctor opened me up and realized my veins were clotted so he closed me back up.  Twelve years later after the first try, I went again to a difference hospital.  They did some testings and said the same thing.  My veins are clotted so I will not be getting a kidney and will be on dialysis the rest of my life unless something changes.   

Now don't get it twisted, I'm living my life and it has been okay until recently when I'm running into PTH problems and it's taking a toll on my body. 

I stopped peeing two years ago and trying to cope with fluid restrictions.  It's hard but I try every day.  Some days I succeeds and some days I go over board but I'm trying.   I don't like swollen ankles and/or legs so I try to keep my fluid low.  It's hard when it's 100 degree outside but I'm trying.

Hope to interact with everyone soon.

Enjoy the rest of your day. 
   
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On dialysis since 1999
In-Center 11 years
Home HD 8 years - still at home
One attempt for transplant - didn't get it due to clotted veins
Another attempt for transplant - testing done and same results | clotted veins
Been on dialysis for 20 years and still trying to live my life everyday
MooseMom
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« Reply #1 on: July 22, 2019, 02:18:09 PM »

Hello, Brooklynite, and welcome to our renally insufficient little community!

You are apparently quite the pro when it comes to dialysis, so I'm sure you will have plenty of insight and advice for those who are new to this gig.

I've seen many posts here on IHD about PTH problems and the different ways of coping with it.  I am assuming you are on meds?  What kind of "toll" is this taking on YOUR body?

The current heat wave is really brutal, isn't it.  Are you taking it a bit more fluid to compensate?

Thanks for joining us! 
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kickingandscreaming
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« Reply #2 on: July 22, 2019, 03:11:55 PM »

 :welcomesign;, You are clearly a pro at this "game".
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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
Aaisha.Dar
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« Reply #3 on: July 22, 2019, 08:53:01 PM »

Hi! Welcome! My name is Aaisha been on dialysis for 9 years started when i was 15 :)
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lulu836
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« Reply #4 on: July 22, 2019, 09:34:43 PM »

 Hi Brooklynite. my kidneys died from high blood pressure.  It was a very long, drawn out process but the "getting there" finally stopped and reality came to stay.  I dialyze "in center" and have been on D for 4 years.  I am older than dirt and have loved every minute of all my accumulated years.  I have slowed down some but stopping is not an option.

Glad to have you here and hope to hear more about you.   :popcorn;
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Of all the things I've lost, I miss my kidneys the most.
Charlie B53
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« Reply #5 on: July 22, 2019, 10:12:53 PM »


Welcome to IHD!

20 years and doing your own treatments at home, you have got this.

I still think of myself as relatively new doing in-center Hemo barely 2 1/2 years. 3 1/2 years PD prior to that.

Sadly, my Needle-phobia is a huge bar to even thinking about doing home hemo.  I may someday manage to place the needles but I can even begin to imagine how you pull them one handed.

No doubot you can teach us things we haven't even thought of yet.

Glad to have you join us.

Take Care,

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

« Reply #6 on: July 23, 2019, 09:22:22 AM »

Welcome to the site Brooklynite


   :welcomesign;




Take care, Cas







......I may someday manage to place the needles but I can even begin to imagine how you pull them one handed.......


Charlie B53


Charlie the tubing on most blunt needles is much longer, and so are the sharp ones for HHD . :secret;
 
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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
Brooklynite
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« Reply #7 on: July 23, 2019, 10:20:37 AM »

Thanks everyone!

I've learned so much regarding HHD.  I have a good doctor that hears me out and allows me to take charge of my treatments. 

PTH is now causing me problems.  I am having a hard time walking and going up and down steps.  I walk so slow at times that everyone is moving much faster then I.   If I sit too long my legs feel very heavy and it's hard to walk but I'm walking just not at a normal speed.   I push everyday because I enjoy making money. Yes, I work fulltime.  My daughter wants me to start working from home.   However, I don't want t stay home. She thinks she my mother.

Anyhoo, as far as putting in needles, I thought putting the needles in would be hard but it's not.  Its very easy once you've  developed good button holes and don't let no one mess with your button holes.  I mean NOONE!   :Kit n Stik;



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On dialysis since 1999
In-Center 11 years
Home HD 8 years - still at home
One attempt for transplant - didn't get it due to clotted veins
Another attempt for transplant - testing done and same results | clotted veins
Been on dialysis for 20 years and still trying to live my life everyday
Charlie B53
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« Reply #8 on: July 23, 2019, 04:04:27 PM »








......I may someday manage to place the needles but I can't even begin to imagine how you pull them one handed.......


Charlie B53


Charlie the tubing on most blunt needles is much longer, and so are the sharp ones for HHD . :secret;

Long enough to grab the line with my toes and pull while using my hand to hold the gauze?

I'm at a loss here.  I think I would need to see it done at least once before even thinking about doing it myself.

I suspect I'm rapidly becooing a Whimp.
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cassandra
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When all else fails run in circles, shout loudly

« Reply #9 on: July 26, 2019, 06:27:02 AM »








......I may someday manage to place the needles but I can't even begin to imagine how you pull them one handed.......


Charlie B53


Charlie the tubing on most blunt needles is much longer, and so are the sharp ones for HHD . :secret;

Long enough to grab the line with my toes and pull while using my hand to hold the gauze?

I'm at a loss here.  I think I would need to see it done at least once before even thinking about doing it myself.

I suspect I'm rapidly becooing a Whimp.



There’s a YouTube demo I might find and post.


But you hold with yr fingers, the end of the needle with yr fistula arm stretched, and slowly pull the needle out, while using your ‘free hand’ to pull the needle
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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
cassandra
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When all else fails run in circles, shout loudly

« Reply #10 on: July 26, 2019, 06:30:23 AM »

Found it https://www.youtube.com/watch?v=wHdO1sFOIFE
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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
fightingPKD
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« Reply #11 on: July 26, 2019, 12:04:17 PM »

Welcome to the support group!

20 years on dialysis. Damn. That's incredible.

That's all I wanted to add.
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