Got my fistula

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Got my fistula

Postby msdiva » Tue Aug 17, 2004 5:15 pm

Well, I'm back to work after spending a week off getting my fistula, i thought it would look a lot worse than it does, besides from the scars you cant even tell its in my arm (the surgeon) did a good job) I still have quite a bit of swelling and i have a graft b/c my veins were so small they couldn't do a regular fistula. So tell me how long did it take for your arms and when i start my HD will the needle insertion just KILL me the tube starts at my wrist and ends at the crook of my elbow. That just seems like it will hurt a lot, I guess you just get used to it. (im shaking in my boots) I've been reading a lot of post about weight, and i got a question...My appetite has seem to decreased a lot lately and i seem to be throwing up a lot after i eat, does this stop once i start HD or will it get worse, Im so tired of Up-Chuckin everything, but its really trippin me out that i dont have a healthy appetite anymore.
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Postby JMan » Tue Aug 17, 2004 8:01 pm

Re pain..

Erm... it depends on your fistula really.. my needles went in DEEP..

at a much sharper angle than most other ppls do.. (most go in at a slight angle)

there ARE things available to ease any pain you may get. Cold spray, lignocaine local anaestetic and creams. Some people need them and some don't. I chose to use them.

I also eventually started to do my own needles as it gave me more control (and was less painful)

As far as appetite, a lot of people do have poor appetite on haemodialysis .. Ideally a reasonable amount of protein and a decent amount of calories are important for good health..

With EPO and iron to keep anemia at bay hopefully your appetite should be fine and you WILL feel better..
"Dialysis! What is this? The dark ages!"
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Postby Anne in Va » Tue Aug 17, 2004 9:38 pm

Hi Marie,

Glad your surgery went so well and good to hear you are back at work. I don't know the answers to most of your questions as I was a PD patient, however, I think your lack of appetite, nausea etc is probably a symptom of your advanced renal failure. It's very common as one approaches the time to begin dialysis. From what I understand, once you get established on hemo, you will start to feel much better.

Best Wishes, Anne
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Postby GSinCA » Tue Aug 17, 2004 9:52 pm

Msdiva,

I have a fistulla and have been using it for about 6 months now. When they first used the fistulla they offered me lidocaine, but I decided not to use it. It didn't make sense to me to get stuck with a neddle 4 times instead of just 2 times. Although, just about every technician that has stuck me has commented that I have a very good fistulla, (got lucky that time). Like Jman I would like to get to the point where I can stick myself, I did it once. So far anticiaption of the biospy, insertion of the fistulla and using the fistulla, all seem to have been more nerve racking than the actual procedures.

As for throwing up, I occassionly have that problem. It ussually occurs after I have drank more fluids than I should, and certain foods seem to affect it too. My Dr. prescribed some Zantac but since I can't predict when I will throw up, I don't like taking them. I have noticed that about 5 - 10 minutes before I throw up my stomach doesn't feel right. I now stop eating when I get that feeling and it seems to help. Best of wishes.
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congrats, Marie!

Postby Cheryl in CT » Wed Aug 18, 2004 5:31 am

Hi, Marie, and congrats on getting thru the fistula surgery. Here's hoping it heals beautifully and works like a charm for you! I didn't do hemo myself, so I don't know much about fistulas and how they feel, but I'm sure you'll hear plenty from some of the others here.

What I do know WAY TOO MUCH about is getting sick, every single day for months on end.... Before my short time on PD and then my transplant, not a single day went by when I didn't get sick at least a couple of times. It didn't have anything to do with what I was eating, either, because I quite literally ate nothing but rice and certain vegetables for many months. I could get sick anytime and anywhere, which was just such a wonderful experience.... I took Rx Ranitidine, too, but I threw them up almost as often as I kept them down. My neph said it was a pretty "normal" part of renal disease, particularly when toxins are building up in your body (as in, when you're not on dialysis...) and that some patients simply suffer from it more than others. Dialysis really should offer some relief from it for you.

I developed the worst gag reflex at that time, too. I was taking a lot of meds and would choke down one or two, wait to see if they stayed down, then take a couple more, wait again, etc. I actually used to take the biggest (hardest to swallow) ones FIRST, so if they didn't stay down, at least I wouldn't have to re-take everything.... (The funny thing is that I STILL do the biggest-to-smallest thing with my post-transplant meds, even tho the gag reflex disappeared and I haven't had the vomitting problem at all since the transplant...)

We'll all be thinking of you & hoping that the fistula does what it's supposed to and leaves you feeling better every day!

all the best,
Cheryl
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Postby debbie » Wed Aug 18, 2004 7:24 am

Hi,
My fistula also starts at my wrist and initially went as far as my elbow, however after 5 yrs of use it has grown now and I have a lot in my upper arm I can use, although it is deeper and not so easy to needle. I also do my own needles and feel more in control, I don't check the car park anymore to see whose cars are there as certain needlers always got my needles wrong!! Whilst your fistula is in this early stage you need to ask the surgeon when you can start doing your exercises. Just a soft ball in the palm of your hand and squeeze it and let go, repeat for about 5 mins at a time as often as you remember. That's what I had to do and it seemed to help build it up, someone on one of the other boards also recommends warm soaks every day but I've never done that.
I agree with the others about the vomiting, it seems to be your body trying to get rid of the toxins, once you are established on dialysis it should stop. Take care
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Ok just plain mad

Postby msdiva » Wed Aug 18, 2004 1:37 pm

It just seems to make me wonder how we as a renal community get through all this sometimes, to me right now at this very minute it seems soooooo frightening to know that soon, very soon, someone is going to stick two big fat needles in my arm on a regular basis and eventually i will get used to this and survive. (i know im being mello dramatic) but just to think about this is depressing. I think im more mad than depressed though. Why can't medicine come up with a better way than this? I've read and listened to all of youse and know what to expect, read so much cant stand to hear about it anymore. I dont want to be stuck with needles I just dont want this, i dont want to have to go to some god forsaken place and be hurt three to four times a week. Im sorry if im venting, I just know if science, medicine, hell the smart people of the world put thier heads together, theres got to be a better way
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Postby wing » Wed Aug 18, 2004 3:15 pm

We get through it because it's preferable to the alternative!
You're allowed to be mad, angry, fed up, down in the dumps and generally p****d off with the whole thing - it's only natural - just don't hang on to those feelings though as they become self distructive.
As for medical science, while it's not perfect and they can't cure evrything, they are making advances all the time - who knows what's round the corner? In the meantime, we just have to take a deep breath and get on with it - as I said, it's better than the alternative.
Good luck with it all - you will cope with it!
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Postby Rik » Wed Aug 18, 2004 3:58 pm

You vent away MsD ... your only saying what anyone who has been through what you are facing has said at one time or another ...
I know I did ...

being a complete needlephobe I am 100% behind you on this ... (lets just make it clear ... I do mean BEHIND you ... I dont want them thinking its me they need to stick needles into :shock: ) ... I still go queasy just when reading some of the messages here!!!! ...

I know others on this board are big and brave ... not me lady!!!! ...
an hour before I was due at the unit I would embalm myself with Emla Cream its an anaesthetic cream ... (the brave ones here know it as 'kiddie cream'!!!) ... it was my first stage in numbing the area ... personally I have never been one to follow the 'no pain no gain' theory!!!! (what idiot came up with that one??!!!!!) ...

on arriving at the unit I would unpack my bag ... and then I would start my ussual warm up routine ...
you know ... a few simple whimpers ... working through to a more meaningful eye contact plea for mercy (you need a mirror to practice that one by the way!!) ... until I reached the high fever pitched banshee tear stained wails begging to be released from hell ...
that done .. I would turn on the small personal TV ... sit back and read up on relaxation techniques ... and munch on a tasty baguette whilst awaiting my nurse ...

she would walk in with a rather deviously calming 'good evening and how are you feeling today??' ... my small practiced whimpering making no obvious headway ... as she checked over the machine ...

I would try the eye contact pleadings ... (I even bought a rather smart pair of knee pads so my pleadings could be done in a more servile position!!) ... but this only ever seemed to please the cleaner who once suggested I put dusters on my knee pads so that I could clean the floor at the same time!! ...

finally ... after some hem kissing the nurse would agree to use some freezing cold localised anaesthetic spray (now you know why I used the emla cream ;) ) ... then she would go about preparing the rest of her stuff (I'm trying desperately not to say needles here ... DAMN!!! said it anyway!!! ... am now feeling a little faint as I type!! :( )

whilst she continued her preparations ... my pleadings would get louder ... (let me tell you ... my high pitch screams have been known to crack glass madam!!!) ... normally ... after many complaints from fellow patients ... (sometimes on from 3 floors away!!) ... the nurse would cave in to my pleadings ... at which point (I hope your making notes MsDiva??!!) she would administer the lignocaine local anaesthetic (now you can understand why I needed the freezing cold spray!!)

after that I would sit back relax and while away the next 5 hours until haemo was done ... :)

so remember ... its ...
1)Emla cream to numb any foreseen pain from the freezing cold spray
2)the freezing cold spray to numb any foreseen pain from the lignocaine local anaesthetic injections
3)lignocaine local anaesthetic injections ... erm?? ...not sure why I had this ... but it was free ... and someone once said to someone else who's neighbour told a bloke they worked with who told the woman on the bus who told me that she thought it helped ...

what?? ... oh sorry!!! ... the actual haemo stick things?? ... OH!!!! those!!!! ...
nah ... nothing to worry about .. they would put them in whilst I sat back ... drank my coffee and watched the TV ... to be honest ... I hardly noticed ... I dont know why everybody makes a fuss about it all!!!!! ;)

all the best MsD ... just you look after that fistula ... and dont let yourself dehydrate or it can affect your fistula ...

any more tips and suggestions you just ask ;)
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Postby JMan » Wed Aug 18, 2004 5:28 pm

Definitley agree with Wing on this one.. Rant if you need it.

Having 2 bits of steel stuck into you is NOT something to be normally happy about (OK there are probably a few exceptions but thats out of context!)

EMLA cream.. good stuff. You may be told, oh we only use that for children, or, we don't use that here.. Don't have any of it.. If you find lignocaine injections alone 2 painful then press for it.

Everyone IS different.. If a fistula is just below the skin then I can quite believe its possible to needle with no pain control. EMLA Needs to be applied 45 mins - 1 hour before needling tho and the timing is fairly crucial.. I found it wore off after about 90 - 120 mins onwards.

Lignocaine itself stings, but its temporary.. I didn't find it much use on my deep fistula, which is why I used EMLA.

Why isn't there something better.? Good question.. At the moment a fistula 'is' the 'something better' at least better than the original methods. See http://renux.dmed.ed.ac.uk/EdREN/Unitbi ... ccess.html (or you may not wish to.. depending)
Scribner kinda saved the day with his 'shunts' (I had one in the 80's) He died last year by falling off his housebout and drowning.

New stuff is being developed all the time. Trialling in the UK is the 'LifeSite' which is supposed to be a kind of 'plug and play' port for dialysis (hemo or PD)

I've hear varying things about trials and to be honest it really just mechanically duplicates a needling technique known as buttonholing, which itself has both patients and medical staff on the for and against arguments. Forgot to put this link in:

http://www.vasca.com/products/prod_101a.asp

Like I said there are a lot of arguments for and against buttonholing even 'normal' fistulas.... For hygiene, access health, access longevity different people and units have different policies, attitudes and ideas.
I won't go into it deeply here.. But there's plenty to read on the web. PM Me if you want more info or have Q's

I digress....

As to self needling.. Erm... I'm not sure what it takes to do that.. Insanity, Desperation, Frustration.

What I do know is that I was practically suicidal with fear and angst of dialysis before I went down that path and had sessions with the clinical psychologist as a result.

Even when I was 'stable' and self needling (cannulating, whatever) I used to think.. 'I must be bl**dy insane to do this' each time I went for dialysis. However it was STILL better than having a ham handed nurse shove the needles in. There were a few who had the 'knack' of just sliding it in, with no pain.. I'm not quite sure how they did that? Technique? Skill? 6th sense? Who knows? Either way I was thankful for those nurses at the beginning of dialysis.

I've rambled enough. Apologies for making anyone squeamish..
Last edited by JMan on Wed Aug 18, 2004 6:52 pm, edited 1 time in total.
"Dialysis! What is this? The dark ages!"
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Postby msdiva » Wed Aug 18, 2004 6:25 pm

I am still feeling nervous about the needles (oops, sorry rik, didnt mean to say that in front of you) but you can believe i will take all your advice and make sure i have all the necessary precautions of pain readily available to me. JMan, how deep is your fistula? i had really tiny veins the doctor said, matter of fact i had unsual tiny veins that went all the way up my arm which he said should have been bigger the farther up you go but mines stayed small. Also should i be feeling some "rush" going through or a "thrill" or something, i dont feel anything right now, everything is just "still" RIK after reading your post, i must have laugh for a half hour, (still LOL) knowing me, the people on the fourth floor is going to wonder whose voice that is peircing the air. Wing, thanks for your advice Im sure i will, i mean like you said the alternative is not good....right?! (just kidding) I'm sure I'll make it on a WING and a prayer. Still makes my panties get in a bunch though. But didn't the very FIRST time they stuck you, did they use all the stuff ya'll talked about to ease the pain, So would you think its best to make sure before i go to the clinic for my "first time" I call them to see what kind of pain relief they offer?, I guess one day i should just take a tour and really see whats going on, I'm one of those kinds of people that have to look before you shoot me, dont like the unknown, just dont sit well with me. I love the way RIK laid it down for me and Jman, humor is always good to settle my nerves. (Wish i had you all there to hold my hand, and sock the nurse it she/he hurts me) So let me ask another question...I know you all had big problems to get to this point of needing dialysis, but tell me the truth, after your first week of dialysis, did you feel better or worse, i just imagine me being sick all the time, throwing up, loosing all of my appetite, wore out....you know the absolute worse. Thanks for responding guys, its nice to know a girl has a few "blokes" in her corner.
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Lifesite - slightly OT

Postby Rachel in NY » Wed Aug 18, 2004 6:28 pm

1st of all, these posts are making me wince & twinge. :( I guess that's part of it. Anyway, i just wanted to comment on JMan's post about the "LifeSite".

I know this isnt' the current topic - but I'm aware there isn't much out there on the LifeSite. Jman bought it up - so I figured I'd explain it once and for all.

I couldn't have a fistula bc my veins were too thin..etc. I originally began dialyzing through a catheter in my jugular (neck). It was only temporary and then I had subclavian catheters (in my chest), and in my groin.

After that - I got the LifeSite. What it is is really two small (the size of a US Quarter coin) metal 'ports' that are surgically implanted just below the skin in the chest area. In my case anyway.. I've heard they can go anywhere. The ports are connected to the proper veins/bloodstream.

In a dialysis session, the needles are stuck right into the skin on TOP of the port, in the same area every day. through the skin, into the port. Once "in", they'd kinda give it a twist and push and pull - and it "locked" into place. There's some sorta lock spring mechanism in the port. So anyway, needles are stuck into the port, and dialysis is done that way.

Since the needles aren't going deep inside of you - rather the port - it isn't painful. Its almost painless. In the beginning, it hurts when it goes through the skin, but after using the exact same spot every single time (and they marked it), it becomes what is known as the "buttonhole" technique. meaning, the skin forms like a tract, a permanent hole. kinda like if you have pierced ears. At that point - it was virtually painless.

Downside is increased risk of infection. And daily maintenence required me to flush them both daily with an alcohol solution, and then rinsed. I had to basically use a needle/syringe & squirt into the port the solutions for the flushing. I had to do it daily, even if i wasn't having dialysis that day.

Overall, I have to say they worked very well for me. The dr.'s were pleased with the flow, it didn't hurt, etc. I eventually lost that means of access to an infection pocket (the ports are implanted into "pockets"). once I had a regular infection, and antibiotics combined with letting it rest, healed it. I dialyzed through my groin then. The second time sadly, the ports had to be removed, bc it was infected, and had begun "shifting" inside of me. So that was the end of that. I was transplanted right after that.

I'm just left with 2 tiny scars. One for each port (when they opened it up to put it in, and to take it out). The 'holes' have since closed up as well.

~Rachel
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Postby msdiva » Wed Aug 18, 2004 6:33 pm

Wow rachel, i wish it was some way to cut down on infections with that method, sound much better than what we have to do now, less painful at least.
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Postby JMan » Wed Aug 18, 2004 7:09 pm

In response..

My fistula is DEEP.. unusually so.. but its an elbow fistula and quite unusual. My needles went in at around 85degrees. supported by gauze pads and tape.

You should feel some sort of pulse or buzzing ,(its sometimes known as a thrill or more technically a 'bruit') If there's nothing mebbe give the unit a call..

Also you should get a sheet with exercises to develop the fistula.. consisting of raising your arm, and lowering and sqeezing something like a rubber ball or stress reliever. ASK your unit for these but in the meantime you may wish to search for 'fistula exercises' on google or see http://www.esrdnetwork.org/fistula_first_qip.htm#pte

THings NOT to do are to wear tight clothers, sleep or put pressure on it, or carry heavy bags/backpacks on that arm. Also keep it warm and don't get it very cold.

I don't really remember my first 6 months or on hemo. I was only about 12/13 and was having chemo therapy at the same time. I remember the first bits being as rough as hell and then things settled down.. Bear in mind that I completed my secondary edu and went through Uni on hemo so can't have been too bad:)

Hope this helps.. See amendments to previous post.
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