I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Rerun on September 21, 2012, 03:41:24 PM
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I had a loop graft put in my right lower arm because my main fustula needs fixed but we need an access before we do the big surgery. So I have been using my loop graft and where it was hooked up was narrowing. So, we did a fistulagram or graftgram today and when I got home I was still sleepy so slept for a couple of hours. When I woke up I went to feel of it and it was zero, nothing, no pulse not thrill.
I'm so pissed. Now I have to go back in Tuesday for a surgery! I still have my main fistula which STILL needs to be fixed but at least it is still working for now.
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Will it be usable though? When is that surgery scheduled for? >:(
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Yes, my old one still works. We were going to do the surgery on the old one.... but he found that my loop had a narrowing so wanted to fix that first. Then it stopped and now has to be fixed before we can do the surgery on my old fistula.
:banghead;
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what ,dialysis
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what ,dialysis
:lol;
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Yes, my old one still works. We were going to do the surgery on the old one.... but he found that my loop had a narrowing so wanted to fix that first. Then it stopped and now has to be fixed before we can do the surgery on my old fistula.
My head hurts now.
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I hate access problems. Good luck with yours.
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It is really annoying ,as if just being on dialysis isn't enough .I got the balloon treatment on mine 6 months ago and they are threatening to look into it again as my Kt/v is falling.Good Luck,Nick
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Boy, now I'm REALLY not looking forward to getting my first fistula next week... :sarcasm;
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I empathize with your frustration. I had my first fistulagram about three weeks ago, which I have decided is a nice name for fixing a messed up fistula that shouldn't be messed up in the first place. But if they had to call it a mistake, well....anyways, I am new at this. When I started, I wasn't even afraid of needles. Thanks to the brutality of the techs, I am now. I had hopes after the surgery that things would be better, because my artery was apparently "severely narrow", but my doctor didn't look at the ultrasound for weeks as he was on vacation, so the techs kept sticking my narrow artery to the effect of much pain until a nurse found the report from the vascular surgeon and I had the fistulagram done, like the next day (they scrambled when they realized they dropped the ball). High hopes for things being better, since she did the balloon thing and also sliced off a rogue vein. (I had to fight for a better surgeon to do the second one. I wasn't letting the same one do it.) Well, it has been painful every day since. The third time after the fistulagram they infiltrated. If it doesn't hurt going in, just when I think I'm safe, they pull it out roughly. I am starting to think they are doing it on purpose because I say something. I am going to start a new thread, because I went to bed crying and I woke up crying and I just want to quit. And I am alone. I mean, alone. I hope yours gets better, I really do. I find if I don't say anything, I get hurt and if I do say anything, I get hurt. So I don't think it matters if I'm nice all the time. And how nice am I supposed to be as I sit there while they inflict pain? All I keep thinking is, this is the best the medical community came up with, then they can have it? They don't even give us enough of anything to keep us comfortable through it. There is no dignity in a room full of people. I love puking, snoring and farting in the company of strangers, for one. What kind of horrible crime did I commit in another life to warrant this torture? I'm sorry, as I started writing I realized I was also very upset. I hope things improve. I am obviously not in the best head space.
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My graft clotted off once after a fistulagram but not the same day but a week later, clotted, fixed it, reclotted off again within the week, this time put a new cover stint in, that was back in May, knock on wood running fine ever since, I asked my surgeon if he knew why it clotted after the fistulagram he didn't know he said that his theory is that a pease of the vesil wall broke loose after the fistulagram causing the clott, then I asked an interventional radiologists the same question and his response is sometimes the vein renarrows after the fistulagram so in short I don't think anyone knows.
Good luck!
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Step 2 of this horrible trilogy lands on Tuesday, December 11. I will finally have my upper left arm fistula revised and the aneurysms cut out and hopefully a good fistula for a year or two. I hope I will still be able to enjoy Christmas. I feel bad for my sister who has to put her life on hold to come help me for a few days. But, I live in the city and she lives in the boondocks so maybe she can get some shopping done while I'm sleeping.
The third part will be getting my cataracts off so I can SEE and READ again.
I really HATE dialysis and what it has done to my normal life which I can't even remember now!
:pray; that all goes well on Tuesday for me.
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Praying for successful surgery with minimal pain and NO complications! I'm glad your sister will be staying with you while you recover. :grouphug; to you and your sister.
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I'll be keeping you in my thoughts and prayers, Rerun. All the best to you, as always.
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Battle on, Rerun!
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Thanks Guys! I just got the pre-surgery call asking the thousand questions. I hate that but better today then tomorrow when I'm freaking out.
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:cuddle;
Hoping everything works out...
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I made it out of surgery on Tuesday but had to stay the night. No one pissed me off too bad. Then I got home and had to go to dialysis on Thursday night. I had a hard time with low BP and they had to leave 600 on but I'll just be careful until Sunday night.
Just at home digging myself to the top again....
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good to hear from ya Rerun and hope it's an upward trend from here. All goodness to you :grouphug;
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No one pissed me off too bad.
A Christmas Miracle! :santahat;
Just keep on digging! Send us a shovel so that we can help. :grouphug;
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An overnight stay for a revision? They must have tied you in some big knots then!
Hope this settles some of your access issues for a nice long time.
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Love ya Rerun. I hope you can still enjoy Christmas after all this. Pain management?
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Hope all is well.
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I'm doing really good this time around. I should get my staples (20+) out on Friday.
:yahoo;
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Oh, I'm really glad to hear this, Rerun. Twenty or more staples? Oh my goodness, that's a LOT! Good luck on Friday; we will be awaiting your report!
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:bandance; Glad to hear you're doing so well! I hope this takes care of all your access problems and that it will be smooth going from here on out! :cuddle;
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:cheer: :flower; :2thumbsup;
Glad to hear you're doing better in time for Christmas, Rerun. Hope you have a Merry Christmas/Happy New Year without any complications. This is really good news.
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I'm glad it worked out for you! :beer1; Hope you have a wonderful Christmas....
Anne
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Have you considered PD? I love it. I had three fistula surgeries, one when the first fistula failed, and two more for the next one, before I went on PD. My thrill is good, but I decided to try PD instead. I hate having thick needles stuck in my arm for four hours, and the cramps I'd get at the end of too many sessions. Now I hook up, have 18 feet of line and freedom to walk around my room, go to the bathroom, and spend most of the 10 hours asleep. You just have to follow the PD procedures to the letter, and never take shortcuts.
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Have you considered PD? I love it. I had three fistula surgeries, one when the first fistula failed, and two more for the next one, before I went on PD. My thrill is good, but I decided to try PD instead. I hate having thick needles stuck in my arm for four hours, and the cramps I'd get at the end of too many sessions. Now I hook up, have 18 feet of line and freedom to walk around my room, go to the bathroom, and spend most of the 10 hours asleep. You just have to follow the PD procedures to the letter, and never take shortcuts.
Thanks. Yes I was on PD 25 years ago and loved it. They didn't even have the cycler then. Just manual exchanges but no needles. Then I had my transplant and at the end of that (17 yrs) I had some abdominal surgeries (about 3) so now there is too much scar tissue for the peritoneum to be permeable enough for PD to do its thing. I LOVED PD.
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It will get better. take care.
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My graft clotted off once after a fistulagram but not the same day but a week later, clotted, fixed it, reclotted off again within the week, this time put a new cover stint in, that was back in May, knock on wood running fine ever since, I asked my surgeon if he knew why it clotted after the fistulagram he didn't know he said that his theory is that a pease of the vesil wall broke loose after the fistulagram causing the clott, then I asked an interventional radiologists the same question and his response is sometimes the vein renarrows after the fistulagram so in short I don't think anyone knows.
Good luck!
Do you ever wonder if "no one knows" by design? If they had to admit they screwed up in any way, there would be accountability, and they are all paranoid about lawsuits. I am noticing several "pat" answers to certain questions -. such as: "The fistula tends to move", "We just don't know why - everyone's different" (I love that one - I always want to say, then what am I paying you for and why are you here?) and so on. One of my favorites is, "Other patients don't have that problem". I have finally learned to say, "I don't care about your other patients, I want you to care about and focus on me." I am so tired of them deflecting every problem and mistake. And, if you try to point it out or "fight" for proper care, as we must do, they take it personally, as if it was ever really about any individual one of them at all - doctors, techs, nurses and so on. I am not trying to marry them or be their best friend, I just want them to do their jobs. You'd think I was asking them to change the weather. I am getting other people involved in my advocacy, but find that people generally do not know how to advocate for themselves or others if they haven't dealt with this situation before. I liken it to teaching them how to deal with bullies. I have had to explain that advocacy is speaking up for the patient who, for whatever reason, physical illness or simple emotional frustration and exhaustion, and it means standing up for their rights. Not just asking, for instance if a prescription can be filled when an error was made, but correcting the error and so on. I find it takes constant diligence and pretty much all of my extra effort to just keep my head above water, and that depends on the day. Hang in there, all. I have personally improved since my last post, for now, of course, and did my first buttonhole needle myself today. Take care everyone, and keep on keeping on.
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Hey Rerun, just wanted to say I hope you are feeling better.
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Hi Rerun
Long time since i have been on this site. Don't use my laptop much. have a ipad 4 which i use, so thought i would wake up the old Rerun (sorry :banghead;) laptop.
Hope your fistula is working ok, well a lot better than mine (still on lines) they had a go at starting the fistula 44staples thay cut up the vein from my wrist to under my arm. I have 2 inches of fistula sort of working in an emergency. This site as grown Bill would have been proud.
hope you are well
Kevno (Manchester)
p.s Happy new year.
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Hi Rerun
Long time since i have been on this site. Don't use my laptop much. have a ipad 4 which i use, so thought i would wake up the old Rerun (sorry :banghead;) laptop.
Hope your fistula is working ok, well a lot better than mine (still on lines) they had a go at starting the fistula 44staples thay cut up the vein from my wrist to under my arm. I have 2 inches of fistula sort of working in an emergency. This site as grown Bill would have been proud.
hope you are well
Kevno (Manchester)
p.s Happy new year.
KEVNO! Hi mate! I'm so glad to hear from you. Geoff Camp has just posted again. Old Home Week!!!
Happy New Year!
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I just got back from the six week check up on my left upper arm fistula revision. Surgeon says we can start using it.
Always full of good news, he told me my right forearm graft is narrowing off again and will eventually fail. He won't use stints. I get so mad. Why not put a stint in there and keep it open. I think it is job security!
So we could do a fistulagram now and try to keep it open. Oh, yeah, like that worked last time! I'm not falling for that again. Or, we could just wait until it fails and then deal with it. OK, let's do that.
This will all end someday. Thank God! :pray;
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Glad to hear the new fistula is working, especially if the graft is going to narrow off. I don't understand why he won't do a stent. I know you only need one good access, but I'd think a spare would be a nice alternative (just in case). You have been known to be slightly unpredictable in the past! ::)