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Author Topic: Hello! New to Dialysis and new here  (Read 112 times)
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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 ďgoodĒ ie functioning kidney.  Iíve been fighting to prolong the effectiveness of the remaining kidney.  But last month it failed.  Because I didnít 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 itís 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.  Iím not sure actually if itís swelling or lymphedema.  Iíve tried googling but Iím not seeing much about it at all.  Iíll call the vascular surgeon tomorrow I guess. 

Iím really glad to have found a community of people going through this. Itís pretty scary to a newcomer.  I hope youíll all put up with my probably dumb questions as I travel this new road.

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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!

Hemo in Center since 11/2008
Self Cannulate since 2011
In Center Self Care since 2012
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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.

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.
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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


Definitely call your team, good luck, Cas

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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« 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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« Reply #5 on: August 08, 2019, 07:48:23 AM »

Welcome, Elaine!
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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