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Author Topic: Really? It went right this time?  (Read 7579 times)
cassandra
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When all else fails run in circles, shout loudly

« Reply #25 on: September 25, 2016, 01:24:50 PM »

Thank you jag2325, nobody knows what is causing this. I've never had this before either.
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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
cassandra
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When all else fails run in circles, shout loudly

« Reply #26 on: September 29, 2016, 11:27:48 AM »

Well I just came back from hosp. Nil by mouth since last night. I had rung the department, spoke with nurse to say my arm was an awful lot less swollen and the lump in my neck had disappeared. I didn't think it would be necessary to do a plasti as my flow is fine. No I had to come in.
So I waited in the pretreatment cubicle for close to 2 hrs. Dr came, had a look, asked me if I could D, went away to speak to my neph, came back and said I could go.
I'm happy they didn't risk scr....ng up my fistula, but I'll never get used to these wasted days.      :banghead;

But Portugal trip is coming into sight though.

Love y'all, 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
Michael Murphy
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« Reply #27 on: September 29, 2016, 12:23:13 PM »

I hope it all works out and you have a wicked good time in Portugal.  I feel all the good work you do here should have gotten you enough karma points so that you get an outstanding trip.






sp mod Cas
« Last Edit: September 29, 2016, 12:46:06 PM by cassandra » Logged
cassandra
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Posts: 4974


When all else fails run in circles, shout loudly

« Reply #28 on: September 29, 2016, 12:50:32 PM »

Thanx Michael, I don't know about all that good work, and karma points but it's very sweet of you to say it anyway.

Love, Cas
Logged

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
jmintuck
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« Reply #29 on: October 11, 2016, 10:16:40 PM »

I can't believe it, 3 different interventional radiologists could not reopen my fistula with all sorts of plasti 'trials'. But this last fantastic near retirement age radiologist managed to open it. I can't believe it, a starting venous pressure of 133 (that's one hundred and thirty three). That's like 5 years ago when all was fine, after all normal plastis it was like that.
I might jinx it of course, but I thought it so important to share it with y'all, that I risk that one.


Love and luck to all of you, Cas

I like to hear success stories such as this.  Good for you, Cas!  Short story...I'm going in tomorrow morning for vein mapping of my left arm - originally used during my first run on dialysis from 1978-90.  I thought it was fairly well shot, but my vasc. surgeon wants to see if maybe he can get a working graft placed.

Long version...I finally lost the use of my 11 year old upper right arm  graft about 2 months ago due to unopenable venous stenosis in the chest area just past my arm pit.  My intervention radiologist and vasc. surgeon have been afraid to force a balloon into it for the past 3 years thinking the chances of causing irreparable damage was extremely high.  And, unfortunately, my collaterals could no longer take the pressure off the main vein and I began experiencing horrible recirculation problems.  During the last treatment I used the graft, the saline in the venous blood line at hook up was being totally sucked back into the arterial needle and back up the arterial blood line.  Fascinating and horrific at the same time to watch.  I was feeling pretty poor going in that night - to the point of having someone come wheel me in from the car.  I asked the charge nurse to draw a potassium sample and she contacted my Neph to have it run stat at the hospital. By the time the results came back about 90, minutes later, I was getting a bit delirious.  Potassium level was 8.5.  Off to the hospital ER and massive amounts of kayexalate and a perm cath for treatment.

What's a bit frustrating, my graft is still percolating well enough that I can still use it at least for an arterial site if having problems with one side of the perm cath.  Hopefully, tomorrow's scoping will come back positive.  I have a great deal of faith in my vasc. surgeon for his ability to think out side the box.  However, I draw the line if it comes down to femoral caths or a HeRO graft.

I like hearing success stories, myself, no matter what it is. But, the Kayexalate tastes like Hell in a Handbasket! I had 2 cupfuls at 2 different occasions and nearly vomited both of those. OMG they tasted HORRIBLe! i HOPE never again DO i HAVE TO EVER TASTE THAT AGAIN.So Horrible. -URPPP"!!
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