I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: cattlekid on April 07, 2011, 07:15:29 AM
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For all sorts of reasons, my clinic is continually pushing me to obtain a fistula in lieu of my current cathether.
I am being worked up for a transplant and have one live donor (my mom) also going through testing and a few others contemplating being tested as well. I started D at the end of January and so far, I've been able to appease the clinic manager by telling him that if this current set of donors doesn't pan out, I'll get the fistula.
However, after seeing pictures of fistulas (my apologies to those who have them), I'm worried and nervous about how the fistula will look - truly, that's why I've been putting it off this long. I really don't want to have a permanent fistula if a transplant is around the corner.
I happened to come across a thread here (or maybe somewhere else, I don't remember) about the ability to have plastic surgery post-transplant to have the fistula dealt with. Has anyone been through this? Did your insurance cover the surgery?
Any advice would be greatly appreciated!!
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I guess the way I see it, is my fistula is my life line. I don't want it to EVER go away. Even if I get another transplant. It will always be there for me. Mine is on my upper left arm and runs to my inner elbow. It is pretty big, but it doesn't bother me. I still wear short sleeved shirts and such. If anyone asks me What is that on your arm, I just tell them the truth. It is nothing to be ashamed of or embarrassed about.
I wouldn't worry about it so much. You will be alright! :waving;
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Hello Tracy!
Thank you for your reply! All I can think about is an elderly gentleman at my clinic whose arm is black and blue from the shoulder to the elbow. Is this common? Is there a way to prevent it?
Also, there are a couple of patients at my clinic who scream and cry when they are being stuck. I am pretty stoic when it comes to getting IVs placed and blood drawn. Is the sticking process about the same level of pain or is it much more painful?
I just wish there was someone I could talk to who didn't have a vested interest in me getting a fistula so I could get the real scoop on the pros & cons.
I guess the way I see it, is my fistula is my life line. I don't want it to EVER go away. Even if I get another transplant. It will always be there for me. Mine is on my upper left arm and runs to my inner elbow. It is pretty big, but it doesn't bother me. I still wear short sleeved shirts and such. If anyone asks me What is that on your arm, I just tell them the truth. It is nothing to be ashamed of or embarrassed about.
I wouldn't worry about it so much. You will be alright! :waving;
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Hi cattlekid…
My guess is that the reason your center is pushing you to have a fistula done is because catheters in general though not always tend to be very infection prone.
An AV fistula is really not that bad. Mine is on the upper inside of my left arm and yes it has left a long visible pink scar but as Tracy explained it is your life line. Short sleeves hide mine completely, so when not in use I tend not to even think about it. The needles never have to hurt, your center should offer but some do not, or you can ask for lydacain injections which numbs the area and makes the needle insertion completely painless. As for the bruising, some might bruise because too much heparin is being used or lousy idiot techs. I have had slight bruising and it was caused by some minor bleeding under the skin, which happens on occasion.
AV fistulas in general take about 3 o 4 months to completely heal and it is very important not to use them until they are. Make sure you research your vascular surgeon and ask how often he or she does this. Better yet ask your nephrologist to recommend one they trust.
I am also looking forward to a transplant but I am very glad I had my fistula done early making the dialysis process as easy as it can be. We all go through enough stress, worrying about infection is just one less item to cross off your list. And in the event your donor is not a good candidate or for some reason your transplant were to fail , your AV fistula is always there to save your life. I am guessing a plastic surgeon could help minimize the scar but scars do fade over time. AV fistulas can also be reversed but when done well they are painless and always ready if and when you need them. It is wise to have a back up plan, as murphy's law is, if you have it you will never need it.
Take care …
RedHairedGirl
:flower;
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I've seen some that are barely visible, and some that are really scary. it's kind of tough call if you are worried about your appearance. I've had two grafts, upper and lower left arm. The bottom never got used (failed in a week), but the top one is pretty ugly from the spots where I was repeatedly stuck. I don't wear sleeveless shirts in public, but then, if I didn't have flabby upper arms, I probably would anyhow when it got warm. You do get used to it, and there are some really effective creams you can put on scars to minimize them, like Mederma. If you use them right after surgery, the scars are very faint.
They may not be telling you is that fistulas and grafts frequently clot off days after a transplant, so the argument that you'll have one if you need to give the new kidney a boost isn't the best argument in my book. Mine stopped up days after my transplant, and I ended up with one of the horrid neck caths for a bit. You might want to weigh that thought in when you decide, too.
They are pushing the fistula because the risk of infection is lower, and caths don't give as good an access, at least in general, as fistulas. Long term health stats say you'll do better with one. (Really, they are trying to do the right thing for you, even if you don't agree with their reasoning that scars shouldn't matter. Well, sorry, sometimes they do, no matter how much you know you shouldn't be worried about your looks!) As for the screaming with the needles part - well, that varies by patient. I didn't like it, but I didn't think it hurt that much, unless they hit a nerve. That's a shock you never want to repeat - it feels like you just electrocuted your arm and set it on fire. But some people are just uncomfortable and in pain every time, and sometimes the whole time the needles are in. You can get the lido shots, but they tend to toughen your skin over time. EMLA cream can work too, if you get the timing right, with less effect on your skin.
I've never heard of anyone having plastic surgery afterward. I suppose it's possible, especially if yours clots off, but I doubt insurance is going to pay for anything they consider cosmetic.
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Hello RedHairedGirl!
Thanks so much for your reply.
I am very fair skinned and bruise easily. So I'm sure whatever scar I get from the fistula will be epic. ;D But like you and others have said, it definitely has its benefits. Unfortunately, I started dialysis on an emergency basis (i.e., call neph on Monday and state "I don't feel so good" and after a five minute discussion of symptoms, I had a bed waiting for me at the hospital at 8AM on Tuesday) so there was no time to start a fistula. He really thought that I would have a donor identified and tested by now so that's why I think there was no discussion of fistula until after a couple of weeks at the clinic.
The fact that the fistula takes time to mature also makes me very much on the fence about the fistula. If my donors work out, the fistula won't have time to mature before I will have my transplant. But like others have said, it's probably a good insurance policy.
Hi cattlekid…
My guess is that the reason your center is pushing you to have a fistula done is because catheters in general though not always tend to be very infection prone.
An AV fistula is really not that bad. Mine is on the upper inside of my left arm and yes it has left a long visible pink scar but as Tracy explained it is your life line. Short sleeves hide mine completely, so when not in use I tend not to even think about it. The needles never have to hurt, your center should offer but some do not, or you can ask for lydacain injections which numbs the area and makes the needle insertion completely painless. As for the bruising, some might bruise because too much heparin is being used or lousy idiot techs. I have had slight bruising and it was caused by some minor bleeding under the skin, which happens on occasion.
AV fistulas in general take about 3 o 4 months to completely heal and it is very important not to use them until they are. Make sure you research your vascular surgeon and ask how often he or she does this. Better yet ask your nephrologist to recommend one they trust.
I am also looking forward to a transplant but I am very glad I had my fistula done early making the dialysis process as easy as it can be. We all go through enough stress, worrying about infection is just one less item to cross off your list. And in the event your donor is not a good candidate or for some reason your transplant were to fail , your AV fistula is always there to save your life. I am guessing a plastic surgeon could help minimize the scar but scars do fade over time. AV fistulas can also be reversed but when done well they are painless and always ready if and when you need them. It is wise to have a back up plan, as murphy's law is, if you have it you will never need it.
Take care …
RedHairedGirl
:flower;
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Howdy jbeany!
Thanks for your reply! Here's anothe question - how much can you do at D when you're on the machine with a fistula? Right now, I have full use of both of my hands so I can use my work laptop to work (and to post on IHD! ;D). If I'm not on my work laptop, I'm using my Nook to read a book or do crosswords. Can you still use both hands when you have a fistula?
Thanks!
I've seen some that are barely visible, and some that are really scary. it's kind of tough call if you are worried about your appearance. I've had two grafts, upper and lower left arm. The bottom never got used (failed in a week), but the top one is pretty ugly from the spots where I was repeatedly stuck. I don't wear sleeveless shirts in public, but then, if I didn't have flabby upper arms, I probably would anyhow when it got warm. You do get used to it, and there are some really effective creams you can put on scars to minimize them, like Mederma. If you use them right after surgery, the scars are very faint.
They may not be telling you is that fistulas and grafts frequently clot off days after a transplant, so the argument that you'll have one if you need to give the new kidney a boost isn't the best argument in my book. Mine stopped up days after my transplant, and I ended up with one of the horrid neck caths for a bit. You might want to weigh that thought in when you decide, too.
They are pushing the fistula because the risk of infection is lower, and caths don't give as good an access, at least in general, as fistulas. Long term health stats say you'll do better with one. (Really, they are trying to do the right thing for you, even if you don't agree with their reasoning that scars shouldn't matter. Well, sorry, sometimes they do, no matter how much you know you shouldn't be worried about your looks!) As for the screaming with the needles part - well, that varies by patient. I didn't like it, but I didn't think it hurt that much, unless they hit a nerve. That's a shock you never want to repeat - it feels like you just electrocuted your arm and set it on fire. But some people are just uncomfortable and in pain every time, and sometimes the whole time the needles are in. You can get the lido shots, but they tend to toughen your skin over time. EMLA cream can work too, if you get the timing right, with less effect on your skin.
I've never heard of anyone having plastic surgery afterward. I suppose it's possible, especially if yours clots off, but I doubt insurance is going to pay for anything they consider cosmetic.
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I have two grafts, one works, and one doesn't. I don't care about either one and how they look but I understand some do.
My neph pushes an access over a catheter but if one is waiting for a transplant he kind of lets them wait.
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buttonhole cannulation performed by the patient themselves in some studies have 0% aneurysm formation. I have had a fistula for over 5 years and I have only a very tiny pseudoaneurysm from the time I had to use sharps and not the dull buttonhole needles. In other words, having an ugly fistula filled with huge bumps and turns is not necessarily what you have to experience.
On top of that, catheters greatly increase your chance of dying before you ever have an opportunity to obtain a transplant. Many studies show this, although no one can state what the outcome will be for an individual person. Nevertheless, the data is clear that the chances of survival are enhanced with a well functioning fistula. Daily dialysis, especially nocturnal daily dialysis has equal survival in a 2009 study comparing this option to cadaveric transplant. Living donor transplant does have the best outcomes of any renal replacement option.
You may wish to discuss this information with your medical team to see if you are a candidate for these things.
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how much can you do at D when you're on the machine with a fistula? Right now, I have full use of both of my hands so I can use my work laptop to work (and to post on IHD! ;D). If I'm not on my work laptop, I'm using my Nook to read a book or do crosswords. Can you still use both hands when you have a fistula?
I used to sew, read, make jewelry, surf the web and even sculpt miniatures with clay. I had an upper arm graft. Depends on where yours is placed and how sensitive your machine is. Sometimes I had to just hold still and read if the needles were a bit off, or I'd just bleed, but mostly I could do quite a bit.
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Thank you for your reply. Yes, I am being worked up for a transplant, so far I have passed all the tests - the only ones left are a colonoscopy and endoscopy on Monday. I don't expect those to show anything out of the ordinary other than a few polyps that they always find on my colonoscopies (I've had ulcerative colitis for 20 years, no flareups in the last five years). I have one living donor currently being tested (my mom) and then a few others who are thinking about it.
buttonhole cannulation performed by the patient themselves in some studies have 0% aneurysm formation. I have had a fistula for over 5 years and I have only a very tiny pseudoaneurysm from the time I had to use sharps and not the dull buttonhole needles. In other words, having an ugly fistula filled with huge bumps and turns is not necessarily what you have to experience.
On top of that, catheters greatly increase your chance of dying before you ever have an opportunity to obtain a transplant. Many studies show this, although no one can state what the outcome will be for an individual person. Nevertheless, the data is clear that the chances of survival are enhanced with a well functioning fistula. Daily dialysis, especially nocturnal daily dialysis has equal survival in a 2009 study comparing this option to cadaveric transplant. Living donor transplant does have the best outcomes of any renal replacement option.
You may wish to discuss this information with your medical team to see if you are a candidate for these things.
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Hi, I use a lidocaine creme. You put it on your fistula about 45 minutes before your session. I always put my hand over the plastic (that covers the creme) and try to really warm the creme up. The warmer it is, the more it penetrates the skin. That makes the needles much less painful. I have a LOW tolerance to pain, so I will say the needles hurt. But, people say that you actually can get used to the needles. One lady has been going to D for 4 years and she doesn't use anything on her fistula. ouch... :)
I hope you do get your transplant soon. Good luck with that!!! :cuddle;
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Here is my 2 cents worth to give you another opinion, and I'm sorry if some of this is redundant of other replies. I agree that the benefits of the fistula definitely outweigh the negatives of how it may look, or the additional discomfort you may find from inserting needles versus just hooking up to a catheter.
You will have better clearance, much less chance of infection, and can shower or swim without issues. I had a catheter and fistula inserted at the same time so I could start D right away while the fistula matured. I was very happy to have the catheter removed after about 3 months and switch to using the fistula. With a catheter, even when you're not on dialysis you have this thing hanging off of you so I felt more freedom and normal once that was gone. I did get some occasional bruising initially but it didn't hurt, it just looked purple.
My mother is also on Dialysis(i inherited my pdk from her) and she recently had her catheter removed and started using her fistula. She is happy with it also as she was having infection issues with the catheter.
Have they told you where they might put the fistula? Mine is right at my wrist, so the incision was only about 3" long and there is just a faint straight scar and the vein looks a little big there. If you're not looking for it, you wouldn't notice it. In the 2 yrs I've had it, the only people who have noticed it have been massage therapists who could feel the 'thrill' in my arm.
I will say that before I started using the fistula I was heavily skeptical about being able to stick myself. After a month I was able to do it without thinking about it. I'd recommend learning to do it yourself eventually as you will get to know the nuances of your fistula and the best way to get a good 'stick' so to speak.
I can understand your thinking that if the transplant is right around the corner being hesitant to get the fistula. Whatever you decide, best of luck to you.
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For all sorts of reasons, my clinic is continually pushing me to obtain a fistula in lieu of my current cathether.
I am being worked up for a transplant and have one live donor (my mom) also going through testing and a few others contemplating being tested as well. I started D at the end of January and so far, I've been able to appease the clinic manager by telling him that if this current set of donors doesn't pan out, I'll get the fistula.
However, after seeing pictures of fistulas (my apologies to those who have them), I'm worried and nervous about how the fistula will look - truly, that's why I've been putting it off this long. I really don't want to have a permanent fistula if a transplant is around the corner.
I happened to come across a thread here (or maybe somewhere else, I don't remember) about the ability to have plastic surgery post-transplant to have the fistula dealt with. Has anyone been through this? Did your insurance cover the surgery?
Any advice would be greatly appreciated!!
Everyone is different in terms of what the fistula will look like on their arm. Mine is a small bump near the connection point but that's it. I'm going through the workup right now to have a transplant from my father and if everything works out, I will consider closing off the fistula but really it's barely visible
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The first fistula I ever had probably would have worked great, but it was never used. It was put in as a backup in case something should make PD impossible. It was removed (I'm not sure what they did to remove it, so don't ask) about a year after my first transplant. My current fistula was put in about a year and a half ago. It took about 3 months to mature, and it works great. I had issues with infiltration in the beginning but that happens until they figure out the best place to go. Mine is in my upper arm, going from inside my elbow, almost to my armpit. I have one psudoanyerism that you really can't see unless you're looking at it, although, my fistula is so strong that sometimes the psudoanyuerism pulsates and it freaks me out a bit. *L*
I am a huge believer in Emla cream. I put it on about an hour and a half before my appointment, and it works wonders. I don't feel the needle going through the skin, and all I really feel is the pop when the needle goes into the vein. Remember, those needles are huge. I've gone without the Emla, but I do not recommend it. Think of it this way, if the IV needle is the train, the dialysis needle is the tunnel.
As for movement, I don't move my arm that much when I'm on, just because I'm afraid of dislodging a needle. The needles are metal, and are not flexible like IV needles are, so the less movement, the better. I've learned how to do many things with one hand, from unwrapping candy, to pulling the battery from my blackberry. As the human race does with any problem like this, you learn to adapt.