I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Adam_W on October 09, 2007, 08:19:08 PM
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:rant; :rant; :rant; OK, a week ago my access clotted, and the next day it was successfully de-clotted. It has been working very well up to this point. But now, only a week later, the same symptoms are coming back! The "whistling" bruit. The high pressures on the machine. The excessive bleeding on cannulation and needle pulling. It started yesterday, and was worse today. I'm now feeling like I'M the one responsible for this. It doesn't seem normal for a graft to have to have two fistulagrams and a de-clot in such a short time. I've only been using this f***ing thing since June, and I'm getting to the point where I WANT MY F***ING CATHETER BACK! I honestly don't know how much longer I can deal with this shit before I march my happy ass into the kidney centre and don't leave until I have a permacath sticking out of my chest again. I just feel like I must be doing something wrong with cannulation or needle pulling. I haven't talked to my nurse yet, because I just thought the bleeding and the high pressures were just an isolated incident, until my treatment today, but I'm going to call her first thing tomorrow. I'm sure I will have to have ANOTHER F***ING FISTULAGRAM. If I'm getting stenosis in the same place, and it's NOT me doing something wrong that's causing it, I wonder if they can put a stent in to hold it open instead of just ballooning it open only to have it narrow again in a week. I don't know whether to cry, cuss, scream, or all three, but I do know I'm getting VERY SICK OF THIS! I've been on my home dialysis for over four months now, and I've felt better than I've felt in a long time. I feel now this damn stupid graft of mine is trying to take over where in-centre dialysis left off. I DO NOT want that to happen. Most of you know how bad I was before I left the centre. OK, I've blown off enough steam for one evening.
Adam
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Aww, I wish I could help, I just hope things work for you hun.. :grouphug;
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Man Adam, I am sorry you are going through this! I hope you get everything worked out :grouphug; dangit...the crap we all go through is just complete BS!!!
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Oh Adam! I'm so sorry that it is happening again. :grouphug; I truly hope that this gets better. :cuddle; :cuddle;
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:grouphug; :yahoo; :grouphug;<------ The guy in the middle is yelling for you!
I hope things go better. Keep us informed.
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You have every right to be upset Adam, and i am glad you came to vent, thats the best thing to do, let it all out, hopefully they will get you your catheter and get you up and running again, sorry for all the problems you are having, Take care my friend... :cuddle;
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Probably not anything you are doing.
If you have a graft its more likely just because its a graft instead of a fistula. Grafts are more likely to clot or get infected. They do not to last as long, usually only a few year . Grafts tend to need revisions in the hospital one or more times a year to remove clots or fix narrow places.
In any case hope you get it taken care of.
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Wishing you better days ahead. I hope your graft problems get resolved. Take care.
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Sorry about this Adam, I don't blame you for being frustrated - I don't understand why it has to be so hard! :banghead;
Take care :cuddle;
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Hope it all clears up ASAP otherwise :boxing;
Take Care Adam Thinkin of Ya
Tamara xxx ooo :grouphug; :cuddle;
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Sorry to hear you are having more troubles. Hope they get you fixed up and soon!!
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Wow! This has been really rough for you. I too have a graft and for 2 years it has been going well. All of a sudden, the nurses are getting problems putting in my needle in my arterial. It goes in well, pumping well and as they push it in fully, it stops. Last week I ended up with 3 different bandaids (sureseal) on my aterial on Mon. Then on Wednesday, it took 2. Thankfully, on Friday it only took 1.
The things we go through!
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Adam, I'm really sorry you're having these problems. I hope they can fix it for you, or at least give you a catheter until they figure out a permanent fix. :grouphug; :grouphug;
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Adam,
So very sorry to read of your access problems. I can truly feel your frustration. My husband has them, also. Will be thinking and
praying for you from New Jersey that it will all get worked out real soon
Anne and Les
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oh, Adam. Dang it. all. I so hope it comes out well, I understand your frustration all too well!!!
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Damn Adam, sorry to hear you have to go through all that crap. I hope all turns out okay with your Graft. I will be thinking of you. :cuddle;
Amanda
xxoo
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Thanks for all the support. I just got off the phone with my nurse, and she suggested that I go ahead and dialyze today, even though Wednesday is normally my day off, and see how it goes. If everything with the treatment is fine, than there is the possibility that this was just an isolated incident. If I have problems again, then we will know I need to have it looked at AGAIN. Today I've also had some minor circulation problems in my access arm, and I haven't had anything like that for a long time. I've been wondering if maybe I'm inadvertently causing these problems by rolling over on the access in my sleep. I woke up at one point last night, and the whole arm was numb, and it felt like I had rolled over right onto the access. I'm going to try sleeping only on my right side and hopefully I won't risk hurting the graft in my sleep. I'll keep you all updated.
Adam
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Maybe you can try nocturnal dialysis they run the blood flow at 250, and its not as hard on your fistula...
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I know sleeping on your arm can DEFINETLY cause problems, (found out the hard way) :P It seemed like i couldnt even bend my arm without it clotting, i hope things work out for you soon Adam, but whatever happens, dont let it get you down ok, :2thumbsup; Love ya friend :cuddle;
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I find it utterly incomprehensible that, despite the overwhelming and obvious advantages of a permcath as a dialysis access, both nephrologists and most patients persist in the belief that it is an inferior method. I have several times listed its advantages, to which I can now add the fact that you don't have to worry about your sleeping position if you have a permcath. I suspect that much of the undervaluing of permcaths has to do with the fact that people have not taken note of how much better the more modern versions are than the older ones. I always had a pump speed of 450 with mine, no problems with recirculation, no clotting, no pain, and only three changes (through the same tunnel over a guide wire -- a very simple procedure) of catheter over more than 8 years of dialysis.
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AV fistulas are by far the more healthy form of vascular access for people on hemodialysis. Eight years of catheter use has most likely caused the artery you used to narrow at the site. Perceived convenience advantages do not outweigh clinical disadvantages.
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Oh, Adam, I'm so sorry. Good rant though. ;D
Have they done vein mapping to see if there is another vein available which can be used for a natural A/V fistula? If you haven't had vein mapping done in the past several months I'd request it be done ASAP. It sure would be nice to have a healing natural A/V fistula while you use a cath.
As a last resort maybe try the other arm? Try to get at least two opinions if you don't like the first one. You have improved so much with the NxStage, do what you have to be able to stay home. You will be in my prayers.
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Adam one thing to consider is: are you getting too dry? Since you just made the switch to more frequent it would be understandable if you had gained actual weight from eating better. Low blood pressures could cause access complications - see beachy's thread on HDC. What have your BPs been running?
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Adam one thing to consider is: are you getting too dry? Since you just made the switch to more frequent it would be understandable if you had gained actual weight from eating better. Low blood pressures could cause access complications - see beachy's thread on HDC. What have your BPs been running?
Good point, Bill. When I did my treatment today, I was having even more problems with the access (higher pressures, etc.), particularly toward the end of the tx. I ended up getting a false reading on my scale, which led to me setting the UF a bit too high, and when I got off, my BP was like 110/75, which is pretty low for me. For a while, I actually lost the thrill, and I thought, "oh no, here we go again", but it came back shortly after I took the needles out. I'm also wondering if my graft may be losing performance because of a high blood flow rate. I know a high BFR can be hard on some accesses, and my BFR is 450. I'm supposed to be starting nocturnal after I switch doctors, but that is being delayed right now. I really wonder if I would have so many access problems if I was doing longer, gentler dialysis with a low BFR and UFR. I'm going to be going to the kidney institute AGAIN tomorrow or Friday (I don't have tx tomorrow), and we'll see what happens. Sheesh, they're going to end up naming the kidney institute after me if this keeps up :lol; I'll keep everyone posted as "Adam's Access Adventures" continue.
Adam
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One way to see how you are in relation to dry weight is to have a friend observe your neck veins. When you lie down your neck veins should be visible, and then they should go away when you sit/stand up. If they are visible all the time you may be too heavy/ if they are never visible you may be to dry. One thing to consider is that carrying half a kilo extra should not a be a problem since you are dialyzing daily. I tend to error on the side of carrying extra fluid as opposed to getting too dry.
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In the course of my many medical examinations for the transplant I had after 8 years of using a permcath, there was found to be NO narrowing of the arteries around the heart.
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Adam, I just read this for the first time! I'm so sorry to hear about your troubles. I hope things get better soon! :cuddle;
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I'm scheduled for fistulagram number three tomorrow morning. There is so much concern over my access right now that my doctor personally called me about it, which is pretty rare. Usually it's the dr's medical assistant that makes calls. Depending on what is found tomorrow, they said that I may have to go back to my vascular surgeon who put the graft in, and he may have to go back in there and make a revision. That doesn't sound fun, but I'll do whatever is necessary to save this access. Sometimes I just want to find the biggest hole to curl up into.
Adam
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Hopefully they get it right this time! :grouphug;
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That sucks Adam, but I hope whatever they do works and isn't painful
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You will probably find me down in the hole when you get there!
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You will probably find me down in the hole when you get there!
Cool, we can have a "hole ho-down".
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Try and keep your HCT around 33 and not more even though they will try to push more EPO on you for financial purposes. Also, ask your surgeon or Neph if is would help taking a baby aspirin (81mg) once or twice a week to keep your vein cleaned out.
I would have quit dialysis if it had happened to me a week later. Seriously, one fistula revision EVER is too much for me.
Good Luck and hang in there.
Again,..... there is a "doctor" who dialyzes in my center with a catheter and no intentions of getting a fistula. What does that tell us?
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Again,..... there is a "doctor" who dialyzes in my center with a catheter and no intentions of getting a fistula. What does that tell us?
What that tells me is that 1) He doesn't like to swim. 2) He doesn't S.C.U.B.A Dive, 3) If he has to follow the same rules I do he's not taken a shower since it was put in.
I want to do all of those things again, so I can't wait to get this DAMN thing out of my chest!
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Hope the fistula gram goes well Adam. Rob knows your annoyance all too well as he has issues with his fistula too. Good Luck!
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Thinking of you, Adam. Hope it went/goes well today.
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Well, I just had the fistulagram, and they found NO stenosis. That's a good thing, but it still doesn't explain why I'm having these problems. I know an infection can cause the whistling sound that I'm having, but I have no other symptoms of infection. The thrill is still kind of going in and out. Sometimes it will be nice and strong, and sometimes I can't feel it at all. They didn't want to give me a catheter yet, because they are still sure these problems can be resolved. I wish I had the same confidence, and I'm probably going to talk directly to my doctor himself, and demand a catheter until we can find this mysterious problem with my graft. It's either that, or not dialyze, and I'm definitely not going to stop dialyzing any time soon. I'm waiting to hear back from my nurse who is getting all my records from the kidney institute. I am nervous about doing my dialysis today, but I didn't dialyze yesterday so I don't really have a choice. I am going to at least wait to get on the machine until after I talk to my nurse, and I may see if I can go into the centre so she can actually see for herself what's going on when I cannulate and do my treatment. I don't know when this is going to end. :banghead;
Adam
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Could your BP be fluctuating a lot? My BP can go from super high to super low and back again in a matter of hours or minutes. That might explain the fluctuations of thrill and excessive bleeding.
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Adam, I hope they get it figured out soon :grouphug;
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Good Luck. I hope they figure it all out SOON! :grouphug;
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Adam, I'm sorry to hear about your graft problems, and I hope they can get it repaired.
It seems like it's always SOMETHING, doesn't it??
I had been having problems with excessive bleeding and a spot on my fistula where it looks like the skin is getting kind of thin. I had a fistulagram and fistula-plasty (sp??) last week (it had been 6 months since my last one) and it seems to be working better now. There was one area of stenosis that was cleared out.
But they want me to go back to the vascular surgeon and see what he thinks about a revision or new fistula. So I am kind of pissed. Aren't fistulas supposed to last longer than 2 years? And did I do something wrong that this one has to be revised or replaced so soon?
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:grouphug; Hope everything goes well at dialysis!!! Saying a prayer for you Adam.
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... I may see if I can go into the centre so she can actually see for herself what's going on when I cannulate and do my treatment. I don't know when this is going to end. :banghead;
Adam
How did it go? What did the doc say? Did the nurse get to watch?