I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on January 09, 2018, 07:41:45 PM
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Sunday morning early, early, I discovered my fistula was clotted. I ended up in the interventional radiology trying to declot it. The declot procedure took me up over my pain thresholds. I was crying for them to stop after four hours of trying to declot it. Ended up back in the IR of Kaiser today and now have a catheter on the left side. The insertion of the catheter was not too bad today. Surgeon plans to take a look at what he can do to the fistula arm.
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Kitkatz you will be in my prayers for a fistula revival. Good luck I am rooting for you.
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The very best of luck, Kitz.....
Hope it's fixed really soon!....
Darth....
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Sorry, I hope the future goes smoother.
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Hate to hear this. Do they not administer at least local anesthesia while doing this? I had a vein ligated off of my fistula Monday and significant pain was not an issue during the process due to local anesthesia. Its been sore for the last 2 days but they gave me a script for pain killers. Good luck and I hope they can save your fistula with no more pain.
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My sympathies, hope they work it out in the end. But a catheter ain't so bad, and it means you can use both hands when on dialysis.
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Sorry for your pain. Guess as you approach your 3,000th treatment something exciting JUST HAD TO happen. ::) Well, this is NO WAY to celebrate! I don't know but since you've been at this 19 years something tells me nothing can keep you from your conga line plans. Be sure to let the docs know that nothing is to interfere with that. Hope you feel better soon.
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I'm sorry Kitkatz, I'm pretty sure they gave me morphine during that once. That helped.
I'll be thinking of you, and sending lots of positive, and healing vibes your way. Like Paul says: enjoy the positives for now, can't do much else.
Lots of love, luck and strength, Cas
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Oh, Kitkatz! I am so sorry! I hope everything works out with your fistula!
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Here they always use some sort of anesthesia for declots. They said it would be far too painful to perform without it. They even use a local before they insert the probe.
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Well that sucks.. I hope they can get it figured out for you
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Mine is still too new for a clot, yet, but I'm sure my time WILL come.
The angio-plasty 'fistula-gram' was a surprise. Initially didn't hurt as Dr used a good amount of local at the entry point. HOWEVER, I felt a strangeness sorta like a big fat worm crawling up my arm inside the vein. That wasn't so bad either. It's when that worm puffed up like a blowfish that I really felt it. Then the Anesthesiologist pumped a shot of fentenyal into my other arm IV. Pretty quickly the burn didn't matter much.
Then the worm moved, and repeated everything. About a dozen times.
All in all still not so bad I could withstand it again, if I had to, but I hope it won't have to be too soon.
Now that clod in the illiac area of my right leg is another story. The TPI chemical drip Dr used to 'melt' it worked just fine. But it was FIVE DAYS of laying there feeling like the whole leg was buried in the BAR-B-Q Pit in a mountain of coals turned up on Hell. Dr had me full of morphine, but it was no where near enough. Maybe should have used Fentenyal?
But I still have the leg so I guess I shouldn't complain too much.
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Take your left arm , lie it flat and roll a steamroller of it once or twice. That might approach the pain I felt during my procedure.
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:grouphug; :grouphug;
Love, luck and strength, Cas
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Take your left arm , lie it flat and roll a steamroller of it once or twice. That might approach the pain I felt during my procedure.
I'm guessing on a scale of 1-10 (10 being the worst) your pain was at a 10 plus plus plus. That's the kind of pain that make a person feel like putting their head thru a wall....or someone elses head thru a wall. You need to get you and Victor a couple of Dammit Dolls.
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Sounds just awful, Kitkatz. Sorry you had to go through all that.
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Sunday morning early, early, I discovered my fistula was clotted. I ended up in the interventional radiology trying to declot it. The declot procedure took me up over my pain thresholds. I was crying for them to stop after four hours of trying to declot it. Ended up back in the IR of Kaiser today and now have a catheter on the left side. The insertion of the catheter was not too bad today. Surgeon plans to take a look at what he can do to the fistula arm.
Dear Kitkatz,
I very much hope you are being sorted out as soon as possible and I feel for you!
Perhaps you could continue with the catheter? I had my chest-catheter for over three years and it works alright (and hopefully it continues like that ...)
Please take great care of yourself and I send you cyber-hugs and best wishes from Kristina. :grouphug;
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Well, SHIT HOLE, Anyway, I hope it all turns out. At least you have a catheter in. Even though I hate those.
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Well, SHIT HOLE, Anyway, I hope it all turns out. At least you have a catheter in. Even though I hate those.
Hello again Rerun,
I was just thinking that maybe I had no problems with my chest-cath so far (touch wood it continues like that :bow;), because, when it was inserted I was shaking all over my body so much, that perhaps the cath "was helped into the right position" by my constant shaking? To tell the truth, I was completely petrified at the time ... :secret;
Best wishes and good luck from Kristina.
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Thankfully, I was totally unconscious when my cath was put in.
The day is coming that it will come out. I am hoping to put that off for a while yet. Wishing to be unconscious dr has already told me NOT..Qwap!
Fistula has only been used the last few weeks. Many times already the 'upper' needle has failed and after repeated sticks have finally given in and used one side of the cath. Nurse is calling Vascular trying to get me in ASAP for pictures and/or a rotor-rooter.
Wanna bet Dr won't knock me out? Qwap AGAIN!
I really REALLY LIKE my cath!
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The day is coming that it will come out. I am hoping to put that off for a while yet. Wishing to be unconscious dr has already told me NOT..Qwap!
Taking out is not as bad as going in, or so I'm told. I've not yet experienced a dialysis catheter being removed, but I have had a pic line removed, which is a similar thing, and that was a lot easier than insertion.
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Charlie, I did not even feel them taking the catheter out, just the feel of them working and knowing what they wete doing. It only took a few minutes and was done in the office, though the office was in an office building connected to the hospital. Anyway, did not hurt at all. A plus was that the after-effects of dialysis really did become easier, as I had been told would happen.
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+1
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I am more curious what causes a clot? Is there, or are there, things we can do that help prevent clots?
My fistula isn't very fat, yet. I've seen some that look like a kielbasa sausage buried in the guys arm. That almost scares me as I'm sure the blood flow through there slows down much like a deep wide section of a river, g
That slow speed may contribute to the blood clotting, then needing to be 'cleaned' out.
We lost a Cat because of that. The Vet tells me that all too often a very old cat heartbeat slows soo much while sleeping that the blood can, and will, clot while within the still heart chamber, then when the heart beats it shoves the clot out into the aorta and down to the inguinal 'Y', blocking off one or both sides. The cat wakes up with the leg pain that I had when my leg clotted off, every muscle and nerve fiber starving for oxygen, screaming in pain. No cure for the cat but the needle to let her go. Vet proved this to me by cutting off one of her nails all the way back into the quick. NO Bleeding because no blood supply.
So the idea of a very well developed fistula while good that it may be much easier to stick scares me of the possibility for clots.
Should we be taking Plavix? Or would that make it too hard to clot off when they pull the needles after treatments?
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A part of what causes clots is narrowing of the fistula or graft. Another they always tell me about is applying too much pressure or applying it in the wrong way after the needles are removed. The vascular people always emphasize using two fingers to apply pressure, something the dialysis center people pooh-pooh. My thinking is the center epoele do this because using two fingers prevents people holding both sites at one time, thereby slowing down the procedure. I have asked the vascular center several times, what causes these clots, and they will usually say there just is no one answer. One suggestion I do have is if the vascular center inserts a stent due to narrowing, ask them where exactly. There is little more painful than having a needle catch a stent the wrong way, and it can push the stent oout of position.
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One Nurse has already told me that I 'push' too hard. Her opinion was the lowered pressure within the vein and a fast release lifting off, the sudden 'pressure shock' could blow out the newly formed clot and cause bleeding from the needle hole.
I never thought about the tourniquet effect of pressing too hard and forming a clot INSIDE the vein.
I am going to have to re-learn just how much LESS pressure to hold it.
GREAT point about knowing where any stent is!
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Update: My surgeon did not realize the fistula is working but slowly, so he wants it mapped and ballooned on the 6th of February. Hopefuly they will use the real drugs this time.
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That's good news!!! We're all hoping they'll get it going ánd figure out which drugs to give you.
Good luck honey.
:flower;
Love, luck and strength, Cas
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Tues the 6th is my appt for the same thing!
Ditto on the fentenyal. The other opiate based pain meds don't relieve my pain, they mwere make me feel like I've been drinking and getting drunk. There is no fun in being drunk and in pain.
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Good luck on the 6th. Glad your fistula is being given another looksy. Hopefully a good balloon job will put it back in business. I don't know if they will knock you out this next go around but maybe you can be given a sedative prior to the appt. I don't know if they can do a nerve block in the armpit ??? and numb the entire arm. Hopefully it will be a relatively short procedure and just something localized will be all that is needed. My husband says that the angioplasties performed near his arterial don't hurt but the higher up they go near the venous hurts a bit. They usually take about 10 minutes with him so hopefully your procedure will be short too. Wish you all the best!
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Hopefully they give you something before this time. I have a graft. They tried a fisula that did not take. After six weeks of waiting for it, they did a mapping and determined the veins were too narrow to form a fistula and put the graft in. Still seems to me maybe they should do the mapping before trying a fistula. Oh well.
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Hopefully they give you something before this time. I have a graft. They tried a fisula that did not take. After six weeks of waiting for it, they did a mapping and determined the veins were too narrow to form a fistula and put the graft in. Still seems to me maybe they should do the mapping before trying a fistula. Oh well.
Vein mapping was the first thing they did before creating my husband's fistula. The vascular "fistula" surgeon had to see the results before doing surgery. Maybe they did yours early on before your actual fistula surgery. Sorry it didn't work out. Hope the graft has served you well.
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Nope, after the fistula failed to develop, THEN they did vein mapping and decided on a graft. The graft has done well and I have no complaints, just seemed an odd sequence. I have seen others at our clinic do the same.
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I went in today 6 am for 8 am procedure on the fistula. They had to seriously balloon it under my arm. They said it was working so off I go to D
tomorrow. Thank goodness the doctor listened to me about pain meds and gave them to me. It was not as bad as last time and was very quick.
I was out of there by 10am. A burrito and fries for lunch and then a power nap.
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Fantastic news! Good luck for tomorrow!!
I'm sending positive vibes to you, your fistula, and whoever is putting your needles in.
Love, luck and strength, Cas
:flower;
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Thank goodness the doctor listened to me about pain meds and gave them to me. It was not as bad as last time and was very quick.
Glad it worked out well. I really wonder why they would not have numbed the pain previously. Each time I was in for angioplasty on the fistula it was numbed good. But also each time I had serious staining in my arm from either blood or die, so my arm would have huge dark splotches that took about a week to dissipate.
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The staining I notice is bruising, everywhere the balloon was used. I suspect stretching the vessel walls cause some small external bleeding, almost immediate bruising. I also had mine done yesterday. For some reason Dr made TWO different entries. Prior to beginning Dr told me that I still have a measurable narrowing, reducing flow, proven by the obvious visible pulse in the first two inches which initially grew after creation of the fistula.
It's not pulsing visibly now. And I swear I can also see further 'growth',, maturation,
Todays treatment was still a chore getting the upper needle to flow properly, but it did. Afterwards I 'gushed'. That lower site shot a stream out from under the gauze up and over my shoulder. Tech says bleeding the day after can be common. Here again, I suspect the stretched walls of the vessel stretch thinner, less able to seal well. And may remain like this until they 'grow' and recover from the trauma.
Yea us!
I did call the clinic a short time after I got home. This is my first time seeing blood under all the tape. It doesn't look like the gauze is soaked, just a bit has oozed out from under and getting under the tape. None outside anywhere making a mess. I ain't touching it. If it ain't broke, I ain't fixing it. Wife can't see and I don't want to risk trying to stop a bleed one-handed. I'll leave well enough alone. Clinic agreed.
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kitkatz: That is verrry good news! Whew! Glad they can still suck blood out of you. Oh wait. Maybe that didn't sound right....well, you know what I mean. ;D
Charlie B53: When we were still doing home hemo I remember my husband's bleed times were a little longer for a few sessions after an angioplasty. At the moment I can't think of why but the bleeding was never major. One time had the dreaded spurt event happen. We "peaked" under the gauze too soon. Never did that again. Better to hold pressure and not mess with it than to try to take a peak at it.
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Gosh Kit, thru the years you have had so many procedures and you have never complained. Must have been a real doozy. Happy to hear this one was easier. Keep on keeping on.
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I remember having the spurt thing after one declot. Wife wanted to call 911, SMH. They do my graft about every four months as a precaution. Much rather have it planned than an emergency declot. There is a LOT less bruising, and they anesthesia is much more gentle because they can give it through the graft after they get inside. Still seems I average about one clot a year.
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Curious how fat are these fistula's that clot?
Physics taught me that the larger the diameter of the vessel the slower the speed of the fluid passing through that vessel. So it would seem to me that a very fat fistula the blood entering slows until it gets to a more 'normal' exiting where it speeds up to a more normal flow rate. Within that fattened section it could be moving slow enough to clot.
I think I've stated this earlier about this very similar problem occurring in our very old Cat. A large clot formed within her very slow heart.
So while my fistula has barely enlarged it isn't nearly as large as some of the sausages I've seen in some arms.
The graft using a cow vein sounds like a great alternative, possibly could be used to replace an overly enlarged fistula reducing the possibility of clotting?
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It is hard to get the folks at vascular to say anything definitive, ut when they do, they usually seem to point to mishandling at the dialysis center. As I said earlier, they are insistent it is better to use two fingers across the fistula or graft, not one and never in-line with the graft. This of course would eliinate being able to hold both sites at the same time and increase the amount of time people are in the chairs, so the folks at the centers are not fans. They have also mentioned tightly folded gauze that is too small then taped tight enough to depress the flow rate through the graft or fistula. There is also the natural tendency of veins to narrow over time necessitating stents or angioplasty.
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Which is exactly what we are doing wrong most every treatment, holding too tight for fear of bleeding. AND taping a small tight wad of gauge down depressing the site and reducing flow.
I can understand why we shouldn't be taking any blood thinners, but then again maybe a thinner should be used. Tough debate. Anti-clotting agents like Plavix I've taken for a couple of years after placement of stents, I have a BUNCH, all in the branches immediately after the 'Y' in the lower ab/groin feeding the legs. None in my heart, yet.
An anti-clotting agent could be the solution however it would definitely increase our 'hold time' when pulling needles. Further extending our chair time.
I haven't tried any of the clamps, yet. I'm told my fistula is still too new and could easily be 'damaged' using a clamp. Still being new I would take this to mean the stretched out walls of the vein needs more time to heal, that stretching damages it somewhat and only after it heals to normal will regain the resilience needed for a clamp.
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I can understand why we shouldn't be taking any blood thinners, but then again maybe a thinner should be used. Tough debate. Anti-clotting agents like Plavix I've taken for a couple of years after placement of stents, I have a BUNCH, all in the branches immediately after the 'Y' in the lower ab/groin feeding the legs. None in my heart, yet.
An anti-clotting agent could be the solution however it would definitely increase our 'hold time' when pulling needles. Further extending our chair time.
I haven't tried any of the clamps, yet. I'm told my fistula is still too new and could easily be 'damaged' using a clamp. Still being new I would take this to mean the stretched out walls of the vein needs more time to heal, that stretching damages it somewhat and only after it heals to normal will regain the resilience needed for a clamp.
I use Tinzaparin to stop clotting. It doesn't make much difference in chair time (haven't used Tinzap since stomachs bleed)
Moving the needle can cause clots as well.
Clamps are not used in my clinic, nor any clinic I've been.
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Tech or Nurse seem to be near constantly adjusting one or both of my needles. So maybe this is irratating the hole and making it more difficult to clot. Especially with a freshly ballooned fistula not having but a few days, barely beginning to heal and thicken the walls.
This makes a lot of sense. Maybe I should ask them if they would just leave the fistula alone for a few weeks to let it really heal undisturbed. They could very easily use my chest cath, just not run the pump speed near as high.
Nah! That would be far to easy. They ain't about to let me off that easy.
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Letting the fistula rest may be a good idea. After being worked on areas can be swollen and need time to heal. It would not hurt to ask.
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I just had my graft clot and I was sent to the local hospital. When they started the procedure to declot it was so painful. They stopped and gave me some more medicine and when they asked if I was ready to start again I was shocked to hear myself say yes. From that point on during the 45 minute procedure whenever I felt something pulling I would laugh not cry. As soon as I was out of recovery I was at my dialysis center. I know my pain threshold and I told them to drug me up. I have learned to be very vocal about what works for me (most of the time anyway).
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I have an appointment to see people for the catheter pull next Thursday. They want an ultrasound then a vascular surgeon look see then pull it. I cannot wait. I was forceful with the dialysis clinic to get with Kaiser and get me an appointment asap. They did.
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When they took my catheter out, I had an apointment with the vascular surgeon, just a follow up. As I got up to leave, he said we should decide when to take out the catheter. I told him I had thought we were goingto take it out that day. He said good idea, called a resident who took me into a surgical room at his office. About 15 minutes later, after a local, it was out. No ultrasound or anything else. Two little tools that looked kind of like what the dentists sticks in your tooth when you have a cavity and makes your rear end grab hold of the seat. No pain with getting the catherter out though. I had it about 7 or 8 months.
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makes your rear end grab hold of the seat.
I hate it when that happens!
Being a lifelong motorcycle rider you would think I would be used to that by now.
Nope! Unexpected things still happen.
every M - W - F still as Needle-Phobic as I am I am very near this at both needle sticks. Even using the Lidocaine, some sticks are far better than others. I swear, some of the nerves in my arm are soo large that needle pokes straight through them!
I laugh a very stupid laugh and hold VERY still. Gotta remember to breath once in a while. Once the tape is on I'm fine.
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If I think about the large needles, my mind goes nuts, so I just say okay do it to the tech and hold my breath when it goes into my arm.
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My fistula (left arm) and my graft (right arm) have done well for the last 14 months. But, my clearance is dropping in my graft and when I have them use my fistula arm there is a chance it will bleed. Big Bleed where I've had to go to ER and they just stick me in a room and have me hold for 45 minutes. Well, I can do that at home.
So, with regret already, I made the call to get an ultrasound and an appointment with my Vascular Surgeon.
Uggggh :bow;
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So some people do bleed far easier than others. They leave me sit over 15 minutes as I've spurted if we try to lift off any sooner. And even then once in a while it gushes again. I have slipped, failed holding. I thought I was doing fine but sitting still holding I can sometimes sort of nod off. You know, how the head starts to fall and you snap back awake. During that moment my finger might slightly slide down, sometimes too far.
I was playing with one of those holding clamps, wanted to know just how strong the spring is. Nurse took it from me and reminded me I am still way too new to try that. She explained my fistula could be damaged by the pressure.
I don't think it is pushing much, if any, harder than I am. Without some sort of scale how would you know the difference?
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Hi Charlie you really really don't want to put much pressure on your gauze pad. The less pressure you put on it, the quicker it stops bleeding. That's how I know it's not a clamp :laugh: And might be why my compromised fistula is still working after 20+ years
:angel;
Love, Cas
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No clamps! My surgeon said to baby the fistula as much as possible.
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Update:
Gosh darn it! I hate being caught in bureaucracy of medical people. I was to have had the catheter removed today, but no room on their schedule for me. I did everything I was supposed to do, made my appointments and did the ultrasound, but no room on their schedule for removing it. I yelled at the vascular nurse I was so frustrated. She knew I was coming for a removal and did not leave room in the schedule for me to have it done. She says she had to see the ultrasound first before scheduling the catheter removal. Utter bullshit, she should have put me on the schedule for a getting it out today. I am still pissed. I was so looking forward to a shower on Sunday. They will have time to remove it 9:15 Monday morning. Another F***ing appointment to go to.
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O men, sorry Kit. Take it easy, more stress ain't gonna do you no good. Monday afternoon it will have to be.
Keep strong Kit
Love, Cas
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Oh kk, that's so bloody annoying, and that's putting it politely. I can't believe they did that to you!
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Sorry for the disappointment Kitkatz. As to the needles, have you tried using the lidocaine cream? It really does work.
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Sorry for the disappointment Kitkatz. As to the needles, have you tried using the lidocaine cream? It really does work.
You can also consider EMLA (lidocaine + prilocaine), which research suggests is a bit better than Lidocaine only. Last I checked it was Rx only in the US. Put it on a hour before induction of subcutaneous apertures and hold it in place with taped on saran wrap and you will notice a difference.
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I have a box of lidocaine patches, 5% for my back when I mess it up which happens far too often.
I cut on lengthwise into thirds so it's a bit over an inch wide and almost 7 inches long. Fits over my fistula near perfectly. Well, not at the top where it turns left. But they don't stick there every day.
Anyway, These go on like a band-aid. No mess, no handi-wrap, and nothing to have to wash off! Just peel it off, wipe with the alcohol pad and stick!
Emla needs to read this post and think about making a strip! Wouldn't that be nice?