I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: carson on August 27, 2010, 11:07:35 AM
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Ok, I've seen more than one person say they're happy to have a fistula and not a line so please fill me in! I'm SCARED TO DEATH to get a fistula, but I'm becoming even more scared about having a line for a long time. Please tell me about your experiences and why one is better than the other. Thanks, Lisa
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I'm in the same boat, so I'll add my concerns on here and hope we get some opinions.
I'm afraid of getting a fistula because I'm afraid of turning this into a visible illness. Aside from looking a little pale and tired, and having a hard-to-see lump under my shirt (the catheter), I look "normal." I'm afraid that if I get a fistula, I'll have this big deformity on my scrawny little arm, and people will look at me differently and treat me differently. Is that a justified fear?
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The day of my fistula surgery was the worst day of my life, and I made sure that everyone in the hospital knew it. I told the anesthesiologist to forget about giving me "just a shoulder block" and to knock me out because I didn't want to be left with the merest shred of a memory of that day. That was back in March. Since then, many people on IHD can attest to my whining about my damned fistula. I hate it. It buzzes and thrills and drives me to distraction. When I hold the phone in my fistula-armed hand, I can hear it through the receiver. It has been kind of sore lately, as if the walls of my veins are hurting because they are being stretched (which is exactly what the point is), so I bugged the surgeon into taking a look at it. He declared it "excellent" and "as good as it gets." I still hate it. And I haven't even used it yet!
So, as you see, I will not sugarcoat this. But despite my sheer hatred of the thing, I am really glad that it's ready to go when I need it and that I won't have to worry about having to get a permacath. My mother had one for 18 months, and every single day she worried about infection and hated the fact that she couldn't have a decent shower. She ended up with a fabulous fistula, and I intend to do the same.
As for what it looks like, hell, my damn kidneys are failing!!!! The last thing I care about is how my arm looks. I spend most of the summer in a bathing suit.couldn't have gone swimming every day with a cath!! No one cares about what your arm looks like. People usually have more important things in their own lives to worry about. I discovered the truth of this thru my mom...she was scrawnier than a bird with a big, fat wonderful fistula, and no one on the planet cared one bit.
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You are right MM, I had my fistula put in 21 months before I went on D. I had a permacath put in when I started because the fistula hadn't mature. After 4 months of blood clots, infections and not being able to shower, I told them to try the smallest needle and it worked. After 1-1/2 weeks they took my permacath out, I had the longest shower I've had in years. When I first started D I notice a patient with a very large 3 inch lump on his wrist. I was very afraid thats what my arm was going to look but I ignored it after a while . I still am happy with fistula after 10 years.
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My husbands fistula was put in April of 2009. We started using it in Sept 2009. His arm looks no different then any other persons, with the exception of the 3 1/2 inch scar on his wrist. We were told when a persons arm gets narley and bumpy it is because of aneurysms. We were also told that if you use buttonholes you have less of a chance of getting aneurysms. His arm looks normal except for the two holes that we put his needles in and even they are not noticeable. It took me a while to get used to his "thrill" in the beginning it used to keep me up it was so loud, but now I don't notice it. My husband had his choice of accesses and he researched it on his own and decided he would much rather have a fistula so he could swim and shower. I know he does not regret his decision at all. He even said the pain he had after the surgery (which was not to bad) was well worth having a great access. :yahoo;
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Can i join this please? When i go for my fistula ive been told its the major op for me ! and i am terrified! Im going to end up being cut from elbow to armpit and hate the thought. But the thing that worries me most is the NEEDLES . We have people on our unit that have been doing hemo for a couple of years that still whine about the pain of the needles ..are they being soft or does it still hurt after all that time? I know you can numb the area but its only short term as it doesnt do much good for your fistula and no one seems to do that on our unit. Gawd what i would give to go back to pd ! At the moment ive got the neck line in ,so my time is coming !
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My husband has button holes, and they help with reducing the pain, but he still feels the needles. I wish he would try sticking himself, I have read on here that when you put your own needles in there is hardly any pain. I am not sure why that is. I guess its probably because you know yourself best and can directed the needle in the best way, or maybe because if your doing it your concentrating and don't realize the pain. Kickstart, I am sorry to hear they will cutting you from elbow to armpit. I guess maybe my hubby was just lucky with the small opening they did in his wrist. I'm pretty sure my hubby was terrified to, but everything with him happened so fast I don't really think he had time to really think. He decided real quick when they said if he didn't have an access and he got sick enough to need dialysis they would just put a cath in his neck. He was more afraid of that. I hope it all goes smooth for you. Good luck!
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i've had 3 permacaths and 2 fistulas.. the hardest part of the permacaths was the doctor's paranoia that i would get a massive infection. i didn't but i like the neph anyway. the first fistula was in my wrist, very easy outpatient surgery. but only worked for a few weeks after we started using it before becoming blocked. the surgery in my upper arm for the second fistula was a real bugger. thank god for very strong pain pills and 2 days in the hospital. they do cut you pretty much from arm pit to elbow but it's on the inside of the arm and doesn't show. i have seen some fistulas that are raised lumps, but neither of mine have done that. i know that the "trill" can be annoying but after 3 years i find it rather comforting. everyone is different, so what happened to me won't necessarily happen to you.
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KS, when I started using my site it hurt like H#$l even when they used the smallest needle but I got through it after a few weeks. I have a absolute fear of needles but I get through it by saying a very short prayer and plus I do kick my legs a little. If the PCTs see my one of legs have a bit more action they ask me if they are hurting me. After all these years I still do it but it isn't noticable except with a new PCT. Also most of the time I hardly notice it. Other Patients may have other ways of coping with this fear.
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I got my second fistula 3mths ago and even though I do hate the way my arm looks, it will someday sustain my life. It buzzes and drives me crazy and often wakes me up.
The positive of a fistual vs a cath is the infection rate is a lot lower. I work in the cardiac field and often see nasty staph infections on heart valves caused by the dialysis cath. I've seen many young people die and I feel that my best chance of avoiding an infection in my heart is having a fistula. I work in a huge cardiac hospital and it is not unusual to see 1-2 cases a week. Sad and scary stuff. All it takes is a tech that doesn't really want to be there and is careless about cleaning the site before hooking you up.
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I do both PD and hemo(once a week) and have had two permacaths. I shower every day and have never had an infection. I have a plastic bag that I seal very tightly to waterproof and then shower normally. The good thing about the permacath is NO NEEDLES! I also have an elbow fistula right up to the armpit. It has a great thrill but is unuseable due to being too deep, even thought I had the second surgery to raise the vein. With the permacath, you do need to keep sterile and dry.
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Those of you who have to be cut all the way up to your armpit...why is that?
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MM the reason for this is because making a fistula is a lot more complicated as out arteries are buried deep below the surface. They do 2 op's the first one is to create the fistula , the second one is to raise it nearer to the surface ( :puke;) Some people over here have the option of having the fistula done first , then if it works , a second op to have it raised , or take a chance and have the whole lot done in one go. As my surgeon said to me ..i can do it all in one go but please dont blame me if it doesnt work and you end up looking butchered ....great eh ! The reason it hasnt been done yet is because of my breathing/cough problems because the op is done under a general, so they wont touch me till im sorted!
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I think my fistula is just above the crook of my left elbow. I haven't had to use it yet, but that's where the surgeon drew all over me to explain where it was. After the op, he told my husband that he had raised the vein so that it was closer to the surface for reasons you already know, but I was left with a scar "only" 2 inches long located just below the crook. So I still don't understand why having the vein "lifted" would result in such a massive scar in your case. I'm sure there is a good reason, but I don't know what it is... I'm not surprised you're freaked out by the whole thing!
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I started D w/a permacath. Took forever to clean up in the am as the tubes can't get wet. Considered tegraderm, But at #3.75 each, and still not quite large enough to cover the incision site and tubes, it wasn't worth the cost.
Had fistula put in upper left arm, and the surgery was not at all a big deal - neither was the recovery. After 4 weeks, I returned to working out, able to curl a 20 lb wt. Between cardio and weights, my fistula matured really quickly.
As for needles, they don't bother me. However a 15 gauge needle is intimidating. When in Nxstage training, you just accept that you got to do it! Use needle slowly and the pain is no more than a prick.
If you are in otherwise good health and active - no sweat!
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I think my fistula is just above the crook of my left elbow. I haven't had to use it yet, but that's where the surgeon drew all over me to explain where it was. After the op, he told my husband that he had raised the vein so that it was closer to the surface for reasons you already know, but I was left with a scar "only" 2 inches long located just below the crook. So I still don't understand why having the vein "lifted" would result in such a massive scar in your case. I'm sure there is a good reason, but I don't know what it is... I'm not surprised you're freaked out by the whole thing!
As I understood the surgeon, it depends which vein is used. DH's first fistula used the cephalic vein - quick surgery, small scar, no lift. He just had stage one surgery for a fistula in the same arm using the brachial vein. Longer surgery, and was told he would require the lift after six weeks or so, to move the fistula to an accessible spot. We were told the scar for the lift surgery would be armpit to elbow.
We are not looking forward to it.
- rocker
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I'll throw in my 2 cents, too. I had a catheter placed (in sub-clavian vein) on March 3 of this year. It was to be just a temporary thing as my mom was all lined up to be my donor. Definitely didn't want a fistula for some of the same reasons mentioned-afraid of the surgery, didn't want a deformed arm, or a permanent thing done to my arm. Well, long story somewhat shorter, my mom was disqualified towards the end of her testing and I'll have to do dialysis long-term. I had a fistula done on July 7 (though it hasn't been used yet, since I'm doing PD), but the catheter was nothing but problems! In 5 months I went through 5 of them with the last 4 being exchanged in the last 2 months. The cuff would never heal to my skin and 2 of them fell out and 2 of them just clotted up and wouldn't pull at all. Also got an exit site staph infection, plus sometimes profuse bleeding from the exit site when starting a hemo session. All this additional trauma/drama just to go through hemo! I go at the end of the week to have the fistula looked at by the surgeon (it's slow developing) but I would go through the fistual surgery again in a heartbeat to avoid the catheter. To be fair, the nurses/docs all said that my experience with the catheters was unusual, but it seemed like I kept experiencing all the weird and unlikely complications. Plus, besides the scar in the crook of my arm no one could ever tell there was a fistula and the healing process was a lot less painful than I thought it would be. So from my personal experience go for the fistula.
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After what I have been thru with pd, we did the fistula surgeries and they didnt work on my right arm. When it was time I had a permacath put in and had problems with bloodflow the cath not working them putting tpa in and then replacing it. I tried again with a real good surgeon and he got mine to work in my upper left arm then when it was time to use it I infiltrated and some treatments I would have four to five needles which is no fun. So now I have a huge lovely scar on my arm but it works and my husband can put my needles in.
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I want to contrast some of the "fistula surgery is bad mkay" talk with a positive experience. I had mine put in in June 2004. The procedure did not hurt nor bother me. Started using it two years later, so it was nice and mature. I've never had a catheter in, nor do I want one(because of the infection risk). The fistula is known to be the best form of access and I get good dialysis (clearance) through mine and in over 4 years of use have had few problems with it (I had one needle blow 2 years ago).
Yes, it is scary to see the arm look like it does. My fistula is formed at the wrist, and I have some rather large bumps (no buttonholes for me :( ) but hey that's life. You know what? I can go swimming and stuff... and I could care less if I walk down the street in short sleeves and people look at it and think I'm a drug user or something - hey that's their issue - NOT mine. I was actually asked once when I was ordering some food "hey man what happened to your arm?!" - not in a rude way.. so I just explained. No biggie. It keeps me alive and that's more important than personal vanity for me.
I do support going for buttonholes - that should make any effects of the fistula minimal - but I definitely agree that the fistula is the way to go.
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My fistula starts 4-5 inches from my wrist. It works so well that one of the more experienced PCT can feel it past my elbow. She has been able to stick me there some what consistently with a much smaller needle. That area is less mature than the rest of the arm.
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My fistula surgery also was no big deal. I had the most beautiful cephalic vein developing all the way up my arm. I was so proud, until it suddenly stopped flowing a month after the operation. Since I was not on D and using it yet, there wasn't anything that could be done, so I am having the same surgery again this month, hopefully using the same vein. I really became emotionally attached to seeing that thing develop and was very sad when it failed. :'(
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Well, I just finished reading the posts and I have to say I feel sick. I am hot, my legs feel funny and I feel like I'm going to :puke;
I am so afraid of needles and of sticking myself but I am also afraid of getting another infection. I had one a year ago and nobody knows, to this day, what it was. It was almost untreatable. I thought I was going to die!
I have little caps on the end of my cath called Tego caps. They're waterproof so I can shower without worrying about infection. I can rest assured that I wont leak or get air while sleeping.
Trikkechick, I'm curious that you can curl 20 lbs with the fistula. I didn't think you were allowed to weight train with one, and I LOVE my weights!!
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I need to know what the hell is thrill sound of a fistula, i never read anything about this... crap more stuff.. :Kit n Stik;
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I need to know what the hell is thrill sound of a fistula, i never read anything about this... crap more stuff.. :Kit n Stik;
Oh, you won't be able to miss it. If your fistula is done right, as it matures, you'll be able to just feel the blood going through it. You'll be able to place your hand over it and, again, feel the blood rush through. Mine is in my left upper arm, and it's fully matured now; if I hold the phone in my left hand, I can hear my fistula through the phone. And if I sleep sorta on my arm (which people say you're not supposed to do, but I do), I can hear it through the pillow. You sound like a healthy, outdoorsy guy, and I know your surgeon said your veins look great, so I don't think you'll have a problem.
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I need to know what the hell is thrill sound of a fistula, i never read anything about this... crap more stuff.. :Kit n Stik;
Oh, you won't be able to miss it. If your fistula is done right, as it matures, you'll be able to just feel the blood going through it. You'll be able to place your hand over it and, again, feel the blood rush through. Mine is in my left upper arm, and it's fully matured now; if I hold the phone in my left hand, I can hear my fistula through the phone. And if I sleep sorta on my arm (which people say you're not supposed to do, but I do), I can hear it through the pillow. You sound like a healthy, outdoorsy guy, and I know your surgeon said your veins look great, so I don't think you'll have a problem.
Is it not kind of weird hearing your own blood moving??. Oh man... I am for the most part a healthy guy i just turned 54 and have never been ill or hospitalized ever. Some stitches but nothing else so it is all new to me.
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My surgeon says it sounds like a kitten purring, I can watch mine raise up and down to beat of my heart, my scar is from my shoulder to the bend in my arm, the scar looks better now May will be 2 years since it was raised.
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Yep, woodsman, it is weird. I'm still getting used to it. I've had it only since March; I'm still pretty new at this stuff. I've known for years that I would eventually be on dialysis, but it has only been since T-giving last year that my egfr dipped below 20, which is the cutoff point for being eligible for getting on the transplant list. And that's pretty much when it all hit that fan. But like everything else, I'll get used to it, and you will, too. We'll both reach the point where feeling the thrill will be reassuring.
I hope you will be able to take some comfort from the fact that you are basically a healthy man. It really does make all the difference. I'm sorry, I don't remember...are you considering transplantation?
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Carson,
My Neph told me it was okay to go up to 20lbs. My fistula is in my upper left arm and I have done weights on and off most of my life. Maybe since I was "in shape" I could do the weight with out alot of strain.
Get rid of those damn catheters - they drove me crazy. As far as needles, at first I was apprehensive, but then I just decided to "DO IT". Now is you get a medical instrument which name ends in "scopy" (colonoscope, etc), then I start running - FAST!
Cindy
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I had my fistula done about 18 months ago in my wrist under local anaesthetic. It wasn't a pleasant experience but if you feel any pain they just keep giving more and more local until the site is totally numb. Immediately after the op. there didn't seem to any 'buzz...trill...thrill' but the surgeon said it was there but very faint. I must admit I didn't feel too optimistic but when I woke up the next morning amazingly it was buzzing away.
What has since happened is that the vein has split off into two! Sort of like a letter 'Y'. with the single vein starting about 4 inches above the op scar in my wrist and after about an inch further up my arm the vein development branches out into two. Its the left side of the 'Y' which is needled and this left side has now developed in my upper arm so I have about a 6 inch gap between the arterial and venous which means minimum recirculation which is good.
They say my fistula is good and there is never any problem needling it but I can only achieve a 350 pump speed when they have needled dead centre. Most of the time I run at 300. Several posts on this thread say that they can actually hear their fistula but the only time I hear it is if I rest it on my pillow or put my ear to my arm .
Overall, although it is working well it doesn't seem to have developed into the large robust looking vein I expected (perhaps I should be thankful for that as my arm still looks a pretty normal shape) Maybe its because the blood flow is divided over the two veins and one compromises the other. At first the doctor considered tying off the other vein then decided not to because since I'm getting an adequate D the branched out vein could be considered as an alternative if ever I had a bad blow to give vein being used a rest.
As for the needles, at first it did hurt like hell but at the end of the day you've got to tell yourself that its only momentarily as the needle pierces the skin. Today I hardly feel anything at the arterial site because I think the skin has toughend up, sort of 'numbed out' Still feel a bit of pain at my venous but even that's starting to toughen up a bit.
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I was scared to death to get my Fistula (upper left arm). But afterwards, it was really no big deal. I was more scared and nervous than I needed to be.
My Surgeon put me on the Twilight meds, so I was "awake" the entire time. I didn't feel anything, but a little pressure at times.
I have about a 3 inch Scar just above the bend in my elbow, that is hardly noticeable. But, since they have used it for the last 6 months, I have scaring up and down the length of my arm from the needle punctures. THAT PART doesn't look so great!
I've been told that a Cath is much harder on the blood vessels and in the long run can do harm to you, VS. the Fistula. Good luck.
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Hi, Lisa -
I see this post is a little old, but I will throw in my :twocents; anyway.
I had my permacath inserted and fistula created within three days of each other. The permacath scares the crap out of me because I've read all the studies about infection rates. The sooner I can get this thing out the better, and I can't WAIT to get a shower again. A catheter - while great for avoiding needles - will never be a permanent solution for me. They're just too risky in the long run. My nephrologist tells me they have a 100% infection rate at the 12 month mark.
I experienced far more anxiety about the fistula surgery than was strictly called for; it actually turned out to be rather anticlimactic. My scar starts just above my wrist and is only two inches long. My surgeon cleared it for use at five weeks out, but my training nurses and I didn't want to push it so we waited till seven weeks out. I went straight to buttonholes with 15 ga needles. I had to stick the arterial with sharps nine times - and the venous side 11 times - before switching to blunts. The venous side has continued to be just a little bit tricky, as the act of creating the buttonhole seems to have caused that one to turn ever so slightly, so I have to palpate it very carefully to make sure I've got the angle right. But with every cannulation it has gotten easier and easier and I hope to get both buttonholes cannulated on the first try by the end of this week.
The most painful part of it right now is just getting through the skin; it's very tight around the needle and I really have to push to get it through. The pain (for me) is just about the same as if you hadn't worn earrings in a long time and the hole closed up; ever have that happen? I expect it will just take time and repetition for the hole to remain open and the scar tissue to toughen up. In the meantime, it's only five minutes of pain out of my day; as soon as I get flashback and get the needle taped the pain is gone.
I actually find the thrill and the bruit to be quite comforting, as it means my lifeline is alive and well! The only time it freaks me out is when I feel a palpitation in my heart and then half a second later I can hear it in my fistula. Otherwise I imagine with time I could use it to lull me to sleep.
As far as what it looks like: who cares? Vanity fights a losing battle there. As a matter of fact, I'm trying to come up with a few really tall tales to tell children if they notice it and ask (as children will). You can get little kids to believe anything. >:D
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I was not worried about what a fistula would look like, in fact I was hoping it would be very prominent and make people stop and stare, and then I could tell them about it. ;D I joked to friends that I wanted it to look like I had AA batteries in there. I've always been very "vascular" and somewhat muscular, so I thought the fistula would look like that only bigger.
Well it took 3 surgeries over 6 months, but I finally found a doc who knew how to do it, and I got a great one. Here is a picture of it 2 WEEKS after it was done. Do you think they'll be able to hit it? :rofl;
As for the thrill, I think of it just like a cat's purring, feels exactly like that.
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man .... what nice arms you have...... and your fistula too..............LOL
YUP I think your right..... they WILL hit that.....first shot......LUCKY DUCK...
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We felt the same way. Aside from the scars, my husband has no bulging. He sticks himself through button holes and feels little discomfort.
My surgeon said it is usually the patients with grafts that have the issue with clots and gross arms. We had a fistula clot on the wrist due to low blood pressure. It was reworked and a site on the upper arm is functioning great.
We were in a car accident and the seat belt jiggled my husband's catheter a little. It could cause major damage if it was ripped out or damaged. You would have to get flat on the ground and have a third party apply direct, intense pressure for 15 minutes compared to being able to apply pressure yourself to a fistula or tying it off. There is not even time to call 911 if the catheter comes out.
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I had a permacath and loved it. It served me well for 7 months.
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Fistula= shower
Fistula= better clearance rates (usually)
Fistula= can last a very long time (if you take really good care of it and have 'good' veins)
Enough said................... ;D
I PERSONALLY love my CAPD cath out of ALL The "other" dialysis access' .................... just saying ;D