I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: cassandra on August 18, 2016, 11:27:25 AM
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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
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Great news, Cass. As a PD person with no experience with fistulae I can't really appreciate all the implications of your story. But I'm happy for you and I hope this doctor has a long successful stretch until retirement.
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Thanx KaS, and I hope you'll have a looooong stretch yet on PD.
:cheer: :cheer: :cheer:
Love, Cas
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The old guy came through, speaking as a old guy, it's good news.
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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.
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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.
O SutureSelf I'm so sorry that your fistula is so bad now. It was mainly your experience with the collateral veins that kept me believing it would be okay for a while, and it was. My now better working fistula will still have to be replaced, just no rush, and I am very grateful for that. My new one will also go in my previous fistula arm ('83/'85) where they happened to have found a vein which,with some operations, is going to work.
I went into the plasti scared stiffless as it might go wrong, stop working etc just the normal things.
But the morning of the plasti I decided to be positive. I don't know if it was something I'd read or something I'd heard of someone on the Olympics (don't loose me here, I've not gone mad or something) I decided to be positive, positive going into the theater, positive to the surgeon, the radiologist at the end of the bed, the person who moves the screens, and table, even the junior doctor I told to wash his hands again, cos I didn't see him do it. And to the assistant at my head of the bed.
I don't know if it helped, but being positive makes people achieve more. If people feel believed in they can achieve more.
I'm not saying if something doesn't work, I or you or whoever didn't believe enough, but it might work, and it's the only thing you can do.
You believe already in your vasc surgeon, so tell him, before, during and after. And the whole team. Also believe in yourself that you WILL come through this.
I also went in thinking I would refuse a femoral line if all went wrong, but I would try a HeRo graft. I would not have been prepared to loose everything yet, even when it's 'just' living on D, it's still My life, and it happens to be the only one we've got.
Tomorrow's scoping WILL go positive, because you are going to be positive, and make the people working on you positive.
Good luck my dear friend, it WILL go well, and I'll be thinking of you, and sending more positive vibes your way.
Lots of love, luck and strength, Cas
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The old guy came through, speaking as a old guy, it's good news.
Oops I forgot to mention it was a lady surgeon. Huge respect for her. So 40 odd years ago she must have had to fight really hard in this men dominated world.
And thanx Michael, it is really good news. More time for a new one to be created in ex-fistula arm.
Love, Cas
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Wow. Being fortunate that PD is working well I know so little about the Hemo world. And the general public hasn't a clue.
I had no idea that access could go bad in so many different ways. And NOT always able to be repaired.
I am a Mechanic/Machinist, metals may be hard but they are very simple when compared to a soft and squishy human. Even underground piping can be easy. Neighbor operates a machine that snakes through a pipe expanding and breaking the pipe, enlarging the 'tunnel' through the ground, while dragging a new plastic pipe along behind it. Very neat system to repair/replace old failing plumbing.
Just not something that can be done within the human body. Damn. Where it so easy.
I don't know if it is courage, or desperation that drives you to allow the Dr's to continue. Perhaps a bit of both. Either way, you have my Respect, and Prayers.
But I do have to ask a couple of things are not yet familiar to me.
What is a heRO?
What are the problems, reasons, a femoral cath may not be wanted?
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I am happy for your success.
But I know the feeling.. The day it was decided my right lower wrist fistula was done for was the hardest day I had since I first started dialysis. Lots of bad thoughts going through my head. But I should be thankful. My left upper arm fistula was placed 11 months ago and we are working on developing that ........ Finally got a full run in yesterday after a week of problems.
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Thanx Vt Big Rig, and great to hear your new fistula is working well.
Charlie as you probably do know, a fistula is a connection between a vein and an arterie. That connected piece of vein than develops into an 'artery' so it can handle the amount of blood needed to go through the machine. A HeRo graft is a piece of plastic that is placed in your arterie and vein junction to keep the flow better so the graft develops quicker. It's quite a new thing, but can develop some problems that you don't really want.
If you don't have a usable fistula or can't have a Central catheter or other neckline, you can get a catheter in your femoral arterie (in your groin). Than you stay in hosp and can basically do not very much.
And yes it's desperation to continue having drs continuing. I suppose I really am going to try to keep living till I'm 57. It's a principle thing. (A 'sort of' annuity/life insurance will pay out if I get to 56. It's not that much, but my mum and dad started that one when I was 13. I remember the 'guy' saying that with the average 'dying' age then being 70, that it would be impossible not to make that haha. When I was 20 I asked for an early pay out on compassionate grounds, as was arranged with people with HIV. I didn't get it, so I must make that 56th birthday. So call it desperation, or call it what you want. But whatever 'they' can do to keep me on this planet for 6 more years, 'they' have done a hundred times worse in the last 33 years.
Love, Cas
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O SutureSelf I'm so sorry that your fistula is so bad now. It was mainly your experience with the collateral veins that kept me believing it would be okay for a while, and it was. My now better working fistula will still have to be replaced, just no rush, and I am very grateful for that. My new one will also go in my previous fistula arm ('83/'85) where they happened to have found a vein which,with some operations, is going to work.
I went into the plasti scared stiffless as it might go wrong, stop working etc just the normal things.
But the morning of the plasti I decided to be positive. I don't know if it was something I'd read or something I'd heard of someone on the Olympics (don't loose me here, I've not gone mad or something) I decided to be positive, positive going into the theater, positive to the surgeon, the radiologist at the end of the bed, the person who moves the screens, and table, even the junior doctor I told to wash his hands again, cos I didn't see him do it. And to the assistant at my head of the bed.
I don't know if it helped, but being positive makes people achieve more. If people feel believed in they can achieve more.
I'm not saying if something doesn't work, I or you or whoever didn't believe enough, but it might work, and it's the only thing you can do.
You believe already in your vasc surgeon, so tell him, before, during and after. And the whole team. Also believe in yourself that you WILL come through this.
I also went in thinking I would refuse a femoral line if all went wrong, but I would try a HeRo graft. I would not have been prepared to loose everything yet, even when it's 'just' living on D, it's still My life, and it happens to be the only one we've got.
Tomorrow's scoping WILL go positive, because you are going to be positive, and make the people working on you positive.
Good luck my dear friend, it WILL go well, and I'll be thinking of you, and sending more positive vibes your way.
Lots of love, luck and strength, Cas
Thanks, Cas. Can't argue with being positive.
Exploratory went will. Seems that although I've had both a graft and fistula, with numerous revisions and balloonings, my vasc. surgeon feels that my upper arm basilic vein is ok to use. However, the fistula will be deep and need to be transposed. He's also considering going with a bovine graft. I challenged him on that given how my gortex graft lasted 11 years. However, he feels that the current bovine versions are superior to the gortex and don't take as much time to heal. I don't know - it's all a crap shoot. All I can do is use good technique and take care of whatever is placed. I have no control over my anatomy. Go in next week to meet with vasc. surgeon to discuss and finalize plans.
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Glad to hear it went pretty okay Sutureself. Amazing your gortex graft lasted so long. They'll use my basilic vein too, which then will be transported. Besides the extra op, why would you want to go for a graft? Of any creed?
Love, Cas
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Cas if your surgeon is a women and started 40 years ago she must be a remarkably talented doctor to be come a surgeon.if I remember 40 years ago was the middle of the 70's a remarkably misogynistic decade. I have memories of women being pushed to be nurses and companies still having male and female job ads. Still the doctor was a pioneer during a time it was not fun to be a pioneer.
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Exactly, a woman's signature wasn't even 'legal' either.
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cassandra: Happy things went right for you! Hope it continues that way. Positive affirmations do come in handy! No, but seriously, I think you're terrific in taking things by the reigns like you do.
SutureSelf: Your attitude is amazing. Seems no matter what you go through, you are looking ahead for solutions and the positives. You seem so much like my old track coach. The Olympic Games are held every few years, meanwhile, life happens. Right now you seem to be in the winners circle.
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SutureSelf: Your attitude is amazing. Seems no matter what you go through, you are looking ahead for solutions and the positives. You seem so much like my old track coach. The Olympic Games are held every few years, meanwhile, life happens. Right now you seem to be in the winners circle.
Thank you, but you're giving me way too much credit. With all that's going on, healthwise, I'm not doing much better than one day at a time right now.
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cas and SutureSelf: I hope you both will have good news to share with us soon. I very much want to stay abreast of people's fistula's, grafts and caths. My husband's fistula is working very well but we don't take anything for granted. Like they say..."they are life lines" (and you guys are real gems for sharing this stuff with us, thanks!)
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Thanks, Cas. Can't argue with being positive.
Exploratory went will. Seems that although I've had both a graft and fistula, with numerous revisions and balloonings, my vasc. surgeon feels that my upper arm basilic vein is ok to use. However, the fistula will be deep and need to be transposed. He's also considering going with a bovine graft. I challenged him on that given how my gortex graft lasted 11 years. However, he feels that the current bovine versions are superior to the gortex and don't take as much time to heal. I don't know - it's all a crap shoot. All I can do is use good technique and take care of whatever is placed. I have no control over my anatomy. Go in next week to meet with vasc. surgeon to discuss and finalize plans.
SutureSelf: If you don't mind my asking, are things on track for you? Hope it goes well.
EDITED:Fixed quote tag error- kitkatz,ADmin
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At the moment I think I'm okay. I still have no date for another fistula op (plus the junior drs in the UK are talking and warning for yet more strikes which means more delays with surgeries.....) Venous and Arterial pressures still look fine. I call the hosp renal team 2 times a week to ask info about the ops.
Am now concentrating on research in prevention of further calcification of the fistula I'm using.
Vitamin B3 and vitamin K2 sound very promising.
Thanks for asking PT.
Love, Cas
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Well yesterday morning my fistula arm was even more swollen than normal, after an uneventful D the night before. Was getting a bit worse, so called nurse, went into hosp, had scan which showed apparently narrowings were back. I don't completely understand as the narrowing had been there for years without my hand looking like a balloon. So must be a different kind of narrowing.
Apparently I was taken off the 'urgent' list...... Now back on. Next Thursday a plasti again, not by Super Woman who is on holiday, and as we go on holiday to Viva El Portugal before she is back, it will be done by a 'stranger to me'. But 'they' were nice, and left me a phonenumber if I wanted to 'discuss' anything about that.
I reckon it will be a pretty dumb idea to go to Portugal with a dodgy fistula, and arm, so I'll be spreading lots of positiveness and believes onto my arm, and over every single person who will be looking, working or thinking of my arm.
Here's to being positive. :beer1;
And I'll take some diazepam too.
Love y'all, Cas
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Hope it works out well, Cas, and that you get to go to sunny Portugal.
When all else fails run in circles, shout loudly
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Well yesterday morning my fistula arm was even more swollen than normal, after an uneventful D the night before. Was getting a bit worse, so called nurse, went into hosp, had scan which showed apparently narrowings were back. I don't completely understand as the narrowing had been there for years without my hand looking like a balloon. So must be a different kind of narrowing.
Apparently I was taken off the 'urgent' list...... Now back on. Next Thursday a plasti again, not by Super Woman who is on holiday, and as we go on holiday to Viva El Portugal before she is back, it will be done by a 'stranger to me'. But 'they' were nice, and left me a phonenumber if I wanted to 'discuss' anything about that.
I reckon it will be a pretty dumb idea to go to Portugal with a dodgy fistula, and arm, so I'll be spreading lots of positiveness and believes onto my arm, and over every single person who will be looking, working or thinking of my arm.
Here's to being positive. :beer1;
And I'll take some diazepam too.
Love y'all, Cas
Hope the procedure works out so you can enjoy Portugal with no worries.
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Thanx Sutureself and KaS
When all else fails run in circles, shout loudly
Those circles seem to be never ending, and getting bigger and bigger though.
A swelling is growing in my neck now, when I go in for iron tomorrow I'll have someone looking at it. Maybe the plasti can be brought forward.
Love y'all, Cas
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You Hemo people seem to be able to take these things in stride. I think if I were ballooning all over the place I would be freaking out, big time. Carry on.
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I wonder what caused that (after like you say an uneventful dialysis). The only time I've ever seen his fistula arm swell was after I infiltrated him and it went away in a few hours. Good luck.
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Thank you jag2325, nobody knows what is causing this. I've never had this before either.
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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 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
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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
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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"!!