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Author Topic: Hello! New to Dialysis and new here  (Read 2465 times)
ElaineJ
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« on: August 06, 2019, 10:20:05 PM »

Hello all,

My story starts with a diagnosis of kidney cancer in 2012.  I was 60 (67 now). The kidney was removed and after several different types of chemo, we found a drug that has shrunk most tumors and added years (probably) to my life.  Unfortunately the cancerous kidney was the “good” ie functioning kidney.  I’ve been fighting to prolong the effectiveness of the remaining kidney.  But last month it failed.  Because I didn’t recognize the signs & symptoms of AKI, I delayed going to hospital.  When I finally went (ok, my husband dragged me there) my creatinine was 11.75.  A neck catheter & several hemodialysis sessions brought it back down to 3.8 which is good for me, although it’s still considered high for people with good kidneys.

This past Friday an AV Graft was placed in my left upper arm.  I was not warned about the rather severe swelling that as of tonight now extends past my elbow almost to my wrist.  I’m not sure actually if it’s swelling or lymphedema.  I’ve tried googling but I’m not seeing much about it at all.  I’ll call the vascular surgeon tomorrow I guess. 

I’m really glad to have found a community of people going through this. It’s pretty scary to a newcomer.  I hope you’ll all put up with my probably dumb questions as I travel this new road.

Elaine
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Cowdog
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« Reply #1 on: August 07, 2019, 06:40:43 AM »

Welcome Elaine but sorry you had to find us. Lots of good info on this site!
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Hemo in Center since 11/2008
Self Cannulate since 2011
In Center Self Care since 2012
iolaire
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« Reply #2 on: August 07, 2019, 06:53:57 AM »

Welcome to the group. 

One refrain you will hear around here is to talk to your medical professional.  We all offer tons of advice in the forum of our own experiences, but if you are worried the best place to start is with team who put in your graft.  Especially in this type of situation where you recently had surgery go ahead and call that team to get their advice.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
cassandra
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When all else fails run in circles, shout loudly

« Reply #3 on: August 07, 2019, 12:24:53 PM »

Welcome to the site Elaine


   :welcomesign;


Definitely call your team, good luck, 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
2020 start Gambro AK96

       still on waitinglist, still ok I think
Cupcake
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a good year for Chevys

« Reply #4 on: August 07, 2019, 02:19:17 PM »

Welcome! I can't imagine how tough you must be to be, and ignoring how bad you felt--I started dialysis at about creatinine of 5! Welcome to the site.
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PD for 2 years then living donor transplant October 2018.
LorinnPKD
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« Reply #5 on: August 08, 2019, 07:48:23 AM »

Welcome, Elaine!
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Charlie B53
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« Reply #6 on: August 08, 2019, 05:48:27 PM »


Welcome to IHD!

While we can often be of help learning to adjust to the rigors of adjusting to living with a strict diet and fluid control, as already stated, when it comes to any serious medical side effects it can be best to immediately call your medical team as any redness, swelling of an area can be important signs that there may be a problem developing that needs attention.

There is a condition called 'Steel Hand' that can occur when a fistula is created.  As I understand it the poor remaining blood supply to the extremity causes this.

This is NOT what you are experiencing.  Yours may be a poor return blood flow causing swelling.  This can be serioous and you need to ask your Vascular Surgeon about it.

In time, the body should adjust for the changes in flow.  The remaining returns should adjust and handle the flows and the arm should normalize.  But ask your Dr first.

Ice may help for a time.  Both to help numb any pain but also to slow flows, preventing further swelling.  But again, it may be best to ask Vascular first.

Take Care,

Charlie B53
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ElaineJ
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« Reply #7 on: September 02, 2019, 03:27:27 PM »

Thank you for the welcome and suggestions. Doc says everyone is different and it may take another month for swelling to go down.  It’s been a month today since surgery so I’ve started light arm exercises in hopes to get things moving. And I bought a bunch of long sleeve shirts for the fall.  So my whack arm will be our little secret.  :)
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Simon Dog
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« Reply #8 on: September 02, 2019, 04:06:19 PM »

There is a condition called 'Steel Hand' that can occur when a fistula is created.  As I understand it the poor remaining blood supply to the extremity causes this.
"Steal Syndrome" - Steal as in bogart, convert, boost, take, etc.; not as in a carbonized ferrous metal.  It has to do with the blood being stolen from the hand causing ischemia.
« Last Edit: September 02, 2019, 04:07:26 PM by Simon Dog » Logged
Blake nighsonger
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« Reply #9 on: September 06, 2019, 03:43:09 PM »

Hi, Welcome Elaine!
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