I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kitkatz on December 08, 2016, 08:28:13 PM
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I toddled off to an ultrasound on a fistula that was working last night perfectly well after dialysis, to find it is clotted now. I have an appointment tomorrow morning at 6:30 a.m. to get ready for a declot procedure. I am not a happy camper right now.
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Sorry to hear about your continuing fistula troubles. What a drag! Wishing you luck.
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Dear Kitkatz,
I am very sorry and I send you my good luck wishes from Kristina. :grouphug;
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Please let us know how it went. Not sure of your time zone, so I didn't know when to think of you.
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How are you doing Kitkatz?
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I can't begin to imagine how discouraging this must be. :banghead; :banghead;
I am hoping that you have better news by now. :'(
Aleta
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Since I know very little about hemp, fistulas, etc., I just being switched today from PD to hemo on a Perma Cath, I have a whole bunch pf questions that I will be asking Clinic staff over the next couple three months.
Clotting in a 'vessel' makes me wonder if some of us clot much easier than others. Isn't there a clotting factor that should be tested and 'thinners' prescribed for those that need it?
They back flushed a line, filled one with saline, the other with heperin. I assume the heperin line is the one most likely for blood to enter and the heperin keep it fluid, and they do not worry so much about the other. A fistula or graft entirely different always having flow.
This is a whole new world for me. I'm sure there is still a lot the Dr's are struggling to figure out.
I hope you can get this cleared and they come up with a plan to prevent future occurrences.
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Hoping everything went well for your procedure!
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Everything went well. Hurts like hell, I went to dialysis afterwards and made it through all seven hours barely.
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Good to here they got it going, sorry for the pain, I'm with you girl. Thinking of you a lot. More good vibes coming your way.
:cuddle; :cuddle;
Lots of love, luck and strength, Cas
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Hopefully it is going to get better as soon as possible,
thinking of you,
Kristina :grouphug;
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Ugh. Just ugh.
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Seven HOURS? Is this a normal time for you or because you needed that much to get back well within range?
Glad to hear your functioning again. Pain can be a bitch, but it should pass soon. Hopefully.
Just before I came in, actually that day I got sick, I received a package from the VA with my Lidocaine patches for when my low back decides to leave me in bed. Slap one of these big stickies on, within a few hours the pain is reduced, almost gone. Almost scares me. Thinking I can easily go ahead and do things I maybe shouldn't do and cause real damage.
Could something like that help? Ask your Dr.
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Everything went well. Hurts like hell, I went to dialysis afterwards and made it through all seven hours barely.
Whoever came up with the saying "no pain, no gain" didn't have a fistula.
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Sending signal sentence showing ship shape sincerity Sebastian style!
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Not fun at all hope your feeling better. take it easy.
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And it happens so fast. You have plans for the week and then a declot screws the whole week up.
Sorry. You should be good for a while now.
:flower;
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Hi Kitkatz how are you?
:cuddle;
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Seven HOURS? Is this a normal time for you or because you needed that much to get back well within range?
Glad to hear your functioning again. Pain can be a bitch, but it should pass soon. Hopefully.
Just before I came in, actually that day I got sick, I received a package from the VA with my Lidocaine patches for when my low back decides to leave me in bed. Slap one of these big stickies on, within a few hours the pain is reduced, almost gone. Almost scares me. Thinking I can easily go ahead and do things I maybe shouldn't do and cause real damage.
Could something like that help? Ask your Dr.
Without totally hijacking KK's thread, I suggest you read this
http://homedialysis.org/news-and-research/blog/140-doc-how-long-do-i-need-to-be-on-dialysis
and this
http://homedialysis.org/news-and-research/blog/38-dont-flog-fistulas-slow-hemodialysis-blood-flow
to understand longer hemo treatment. BTW, why is 7 hours so bad? You run 10 hours every night on the PD cycler!
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BTW, why is 7 hours so bad? You run 10 hours every night on the PD cycler!
PD is different. You're able to move around, even stand up, disconnect, go to the bathroom, etc. I remember one time, hooking up, doing a run, then disconnecting and going out to a movie with some friends. When I came home, I hooked back up and continued with my treatment.
I do 4 hours on hemo. By the end of it, I'm really to pull the needles out myself and run.
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BTW, why is 7 hours so bad? You run 10 hours every night on the PD cycler!
PD is different. You're able to move around, even stand up, disconnect, go to the bathroom, etc. I remember one time, hooking up, doing a run, then disconnecting and going out to a movie with some friends. When I came home, I hooked back up and continued with my treatment.
I do 4 hours on hemo. By the end of it, I'm really to pull the needles out myself and run.
I did 8 hour nocturnal home hemo treatments for a while, which I could handle since I was sleeping for most of it. I agree about the 4 hour treatments! My butt and back would ache and I'd feel restless towards the end. My treatments on NxStage now are running about 3:17 and I do fine. That extra hour is a killer! Or maybe it's the horrible recliners the clinics have! ;D
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BTW, why is 7 hours so bad? You run 10 hours every night on the PD cycler!
Because I am in my comfortable bed, sleeping through most of it. It doesn't intrude on my day at all (I do dry days). When I did in-center hemo for 4.5 hours it nearly drove me insane. The discomfort, the boredom, the constant alarms, the glaring lights. Just dreadful.
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TO: KickingandScreaming and Rikki - did either of you at least read the article in the first link? Dr. Agar lays out the reasons why running 4 hours or less x3 weekly leads to the bad side effects with higher morbidity and mortality rates. Running longer and slower patients experience fewer treatment complications. Overall, it actually provides for a better lifestyle if nocturnal is performed at home and even at the clinic. However, I agree that PD at home is a better option than conventional incenter hemo - at least in the short run since peritoneum functionality for dialysis usually diminishes after 5 years. BTW, at the clinic, it's not so uncommon to be unhooked if one needs to make a pit stop, especially on the extended hours treatment shift.
"The slower, the more gentle, the longer and the more frequent your dialysis treatment is ... the better you will feel, the less symptomatic your treatment will be, the more stable you will find your blood pressure will become, the less will be your pill burden, the more healthy you will feel, the longer you will live, and as you move towards an acceptance of your (sadly essential) treatment, the more at peace with both the dialysis process and yourself you will become." - John Agar, MD
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did either of you at least read the article in the first link?
I have been reading Agar's articles for a while now. I fully understand why --in hemo-- longer is better. I wasn't commenting on that. I was merely commenting on how intolerable I find so many hours tied to a chair. It was clear--during my hemo days-- that if I got up and did something else, it would merely prolong the agony and i'd never get home. When my peritoneum goes, I will consider conservative care and death over in-center hemo. That's how much I consider that life style anathema to my well being and QOL.
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Kit, by now, I assume it is working better, the damned thing. You sure have had a tough road of it during your 18 years of it. Will be thinking of you and if you hadnt moved so far away, would have brought you some dark chocolate. Hang in there baby!!! :waving;
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Oh drat Jean! I would loved to have seen you and the dark chocolate!
I run 7 hours due to my request for nocturnal dialysis around 8 years ago. I feel better on the longer hours and my blood work is bang on pretty much despite my eating crap sometimes.
I think it is the only reason I have made it 18 years on dialysis.
My fistula is banging along, every now and then it aches, I did a good run on Monday.
Friday sucked though. The radiologist did not give me enough pain meds in my opinion and I hurt when I left and could take nothing for four hours.
The dialysis center of 2 Tylenol 250mg did not touch my pain. To even touch a headache for me it takes 2 500 mg Tylenols.
Friday night I was in tears when I got off the machine.
I do not think anyone in the medical field realizes that a procedure, then dialysis tends to hurt like hell for the patient.
I came home and knocked Norco down and had some dinner, then off to bed to recover a little bit.
I was such a grump at the nurse at Kaiser so I could get out of there and get some lunch and get to dialysis on time at my clinic.
She knew I wanted out of there by noon, we made it to the car by 12:30pm. Not bad for Kaiser timing.
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TO: KickingandScreaming and Rikki - did either of you at least read the article in the first link?
In all honesty, I didn't read it, at least not lately. i'm sure I've read it or others like it which say the same thing. It's not something I didn't already know. I was just pointing out that there is a difference between 7 hours on hemo and 10 hours on PD, at least where comfort is concerned. I wouldn't be able to handle it, not being able to move. 4 hours is bad enough. I'm not saying that it wouldn't work for others, just not me. It seems to work fine for Kitz, and she's been at this dialysis thing a bit longer than I have.
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Hi Kitkatz how are you doing?
TO: KickingandScreaming and Rikki - did either of you at least read the article in the first link?
In all honesty, I didn't read it, at least not lately. i'm sure I've read it or others like it which say the same thing. It's not something I didn't already know. I was just pointing out that there is a difference between 7 hours on hemo and 10 hours on PD, at least where comfort is concerned. I wouldn't be able to handle it, not being able to move. 4 hours is bad enough. I'm not saying that it wouldn't work for others, just not me. It seems to work fine for Kitz, and she's been at this dialysis thing a bit longer than I have.
And Riki there is a huge difference between hanging on the machine for 7 hrs with sharps or with blunts. With blunts you can do nearly every thing. Sleep a bit, walk, pick up things, open de door, knit, write, sleep a bit. It's in the middle of APD and HD with sharps I'd say.
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That's something I NEVER would have thought about. The slighest wiggle of the sharps cutting into the walls of the vessel and causing an infiltration. Great point (no pun intended) to remember. While on this cath I can easily one day end up with an access site.
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Blunts/buttonhole can be made available if you are an in-center patient, willing to self canulate, and have a cooperative MD. It's not the easiest path for the center since you have to be trained, but if you are an alert and oriented x4, and willing to take on the responsibility, it could be better on your fistula in the long term.
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TTL times have moved on, My centre did not have to put itself out at all. I had a technician stand by at the next chair (preparing another machine) while I stuck the first needle in. Learned everything from YouTube and other info from the worldwideweb and my own mistakes. Not only better for my fistula, better for me as a person.
:angel;
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Congratulations Cassandra. Hopefully others will follow your example.
I just finished up a week of in-center while traveling, and doing my own rather than having people I don't know, puncturing made the process much less stressful. It also saved the tech lament of "crap, a visitor....another person to put on".
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And Riki there is a huge difference between hanging on the machine for 7 hrs with sharps or with blunts. With blunts you can do nearly every thing. Sleep a bit, walk, pick up things, open de door, knit, write, sleep a bit. It's in the middle of APD and HD with sharps I'd say.
That's cool. I've never used blunts, because I don't have buttonholes. I've watched others in my unit use them, though, putting their own needles in. I found it fascinating. I didn't know about buttonholes when I started, or I might have mentioned it, but I also have an upper arm fistula, which would make it difficult. I also don't think my eyesight is good enough to put my own needles in.
sp mod Cas
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Been sticking my self awhile in center ,thought it would take 2 or three weeks to learn how to do it as home hemo" classes" nurse said I'd or we would be "up and running" ......well ,its been three months now in center still learning ( plan A ,give it a year ,then make decision as have caretaker issues ) then reevaluate ..... I'm on third button hole second one on upper arm was not" getting it" so this one ,the new upper hole one in upper arm is a interesting one too. the bottom hole I am sliding in or "sucking in" pretty good most allways now(knock on wood) even after two day lay over. That upper hole is a bitch. yesterday I had it lined out perfect and boom right in , so learning in center with access in upper arm is tougher doc. said because scar tissue is tougher he said. Coming back after 2 days the approach in has to be followed up with a umffff that I'm hesitant to administer, it is a skill that takes alot of practice , when i have trouble, the hardest part, but that's getting easier, is to ask for help. i never get a break. hello
sp mod Cas
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I have my buttonholes in my upper arm too. Very mature fistula, so it's never too late to try. My eyesight isn't too hot, so I'm glad it's an upper arm one.
Blake ns how long do you 'soak' your buttonholes for? I soak mine for at least 3 hrs, sometimes a day (if I had too much to drink, and I deem it unsafe to get myself on, or I've got a spontaneous cold or something)
Love, Cas
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how long do you 'soak' your buttonholes for?
What does it mean, to "soak" a buttonhole? I assume to soften the "scar tissue," but how do your soak it?
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Hi cas, just an hour,.. the drive to center is 40 min. so then scrub down good at center wish soap and hot water . that soaks the scabs pretty good , new one kinda smears off with pick i use about 8- or so alcohol packs then go at it ,clove, masked whole gambit. I try holding on behind flaps on needles but i have to go near vertical and deep' so to get better grip i feel it better holding on to wings( (flaps) especially the top one as after said 2 days its a.... that's where i have the problem exacting correct angle each time and knowing its on spot before i punch it through. .....i feel the tunnel but knowing the amount of pressure to exert as not to feel a crunch or- tear?' .... hard to describe it. ....... Following through. ? Should i concentrate on that ? Thank you. This is quite the time appreciate your help. ,Did it take you awhile to" get it"?. Why do you soak yours for 3 hours . Do you do top or bottom first ? thanks. Best to you. Blake ns.
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What does it mean, to "soak" a buttonhole? I assume to soften the "scar tissue," but how do your soak it?
Yes KaS it's to soften the scar tissue, and the skin around it, and the opening of the hole. I soak it by cutting 2 pieces of gauze. Soaking them with saline, placing them on top of the holes, I stick a Tegaderm film (big seethrough plaster) on, so no air can get to it, and no water out.
Blake ns by accident I 'discovered' that the needle goes in much easier the longer I soak. When the scab (and dead skin etc) is removed (with a blunt fill needle) the 'hole' is there to see. I hold the tube (I use a wet needle (so the needle and tube are filled with saline)) and squeeze so some saline comes nearly out. If I than come with that 'near drop' to the hole, it 'finds' its way in. Still pulling back a few times when going in. Mine is also 90 degrees down. I found that if I relax and bend my arm and rest my elbow on a pillow, it goes easier. I didn't created the hole like that, but it's as if a muscle is in the way when I stretch my arm like when I created the hole. I mainly hold the tube about 1 or 2 Cm's behind the flaps.
I gather you D in-centre, and I would soak longer especially after your 'weekend'.
I do bottom first as that's my arterial, so if a clot forms because I'm taking longer to stick the venous (top) it doesn't matter.
Love and luck, Cas
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I tape 3 2x2 gauzes folder into quarters over each buttonhole, and soak eack with 5ml of saline I draw from the back when I set up my NxStage about 2 hours before the start of treatment. It makes insertion easier since the skin around the annulus is softer and more pliable and also makes scab removal much easier.
I dry canulate (no saline in the needle/tube when I puncture), and then draw blood into the line, and flush with saline. I only fill a 10cc syringe with 7cc saline to allow volume to draw back the blood if I need to get air bubbles are out of the line before I flush with saline.
sp mod Cas
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Hi cas, thank you , for the tips i will see if i can try ,the saline in needle tube sounds a type of syphon affect plus lubrication that helps draw or suck needle in?. i do in center will give this a go, thank you. much love and luck right back. Blake
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I tape 3 2x2 gauzes folder into quarters over each buttonhole, and soak eack with 5ml of saline I draw from the back when I set up my NxStage about 2 hours before the start of treatment. It makes insertion easier since the skin around the annulus is softer and more pliable and also makes scab removal much easier.
I dry canulate (no saline in the needle/tube when I puncture), and then draw blood into the line, and flush with saline. I only fill a 10cc syringe with 7cc saline to allow volume to draw back the blood if I need to get air bubbles are out of the line before I flush with saline.
attention: Cassandra , SimonDog, Thank you , the soaking has made world of difference. Having "2 days off". My next question is; will putting lanicane Hurt anything to cut down on needle sting going in or will a wet needle drip allow less drag going in tunnel hole to slid in,commence pain free? , concern also being Bactria . === can i soak 2 hs. saline then 2hr. numbing cream? what do you advise. ***********Asking nurse,they pass my questions to next hire up . ," who told you that? nurse ask (told her a friend that's been doing this most her life,...went from Rn to Manger of clinic to nurse practitioner and i am guess doctor now. Haven't ask or told N.P. yet and probably will just drop it and tell doctor what i discovered when i see him. He told me 90% of home hemo is learning ...or hardest part is the sticking , said humane body was not made to stick is-self, the rest is tought spisificlly for you, to take it home ..... But at any rate i am just amazed how big a difference soaking made. ^^^^^^^^^^^Also; wondering on policy and" historically the way we do things here due to staffing shortage" as head / manager RN told me when asked her if she would put me in a position as NOT to have specific tech. ^^^^^^^^^^^^ will i make history? how does that work" historically"? any thoughts .? thanks. ......can you see the flash in tube when you wet needle Cas? thank you so much.
sp mod Cas
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sorry still learning how to catorigize my point of question with blue ...
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Y'all talking like this makes my needle-paranoid bones chill. Shivers running up and down my spine.
Y'all are tough #$%^&'s.
I can't even force myself to Dream os needling myself.
This is going to be a serious challenge. I would sooner sign up to go through Escape and Evasion, again, than have to do this. Physically, I don't think I could do it again. But if you were standing behind me with a couple of those 15's, my motivation would be greatly increased
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Surly if i can do it you can do it . i never watched for 8 months no frigging way , i still am so on edge. but the soak, O the soak.Here my friends told me about the sweet soak. The soak. i like saying it.! Once i was committed south bound with a following sea and i had just what you are talking about (master- RN ,she infiltrated me the first day i did hemo. she was so sorry genuienlly. How so kind the techs and nurses were my first day, still are. Hello .. She Trained me , once i cleared the bridge.( Morgan city r.r. bridge in highwater in comparason on how fear riden i was to me.). ------------------Anyway, saying this for prosparity reasons ,--- after having her in my dialysis life for 10 months she left .... i welled up like a baby ' s,o.b. what was that .? Just loved her. thanks
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I have my buttonholes in my upper arm too. Very mature fistula, so it's never too late to try. My eyesight isn't too hot, so I'm glad it's an upper arm one.
I'm actually legally blind, with no peripheral vision at all, so I don't think that putting needles in my upper arm is the best idea. *G* Perhaps if I had the fistula in my upper legs, where I could see it and feel it with both hands, I might try it. I have a hard time putting tegaderm on my sites after putting emla on them because I can't look directly at my upper arm.