Fistula location

[tyefly]

I am getting my fistula in a couple of days...   They did the mapping and I was told that my arm branched in the upper arm part and that putting the fistula in my upper arm would be best.  I told my doctor that I am planning on doing home hemo and placing the needles my self... and wanted to be sure that I would be able to do that in my upper arm.... He said   that it is more challenging but it can be done  if not that just have someone else do it...... That is not what I want to do is have someone else do the needles.... He said that not all centers let you do your needles.....  I kept telling him that I will do it at home and he just looked at me funny.....   So    the question is  how many people are doing home hemo and doing there needles their self in the upper arm.... I keep seeing video's and utubes and everyone who is doing them at home has there fistula in their lower arm....my goal is to do it at home  and go extended.... or nocturnal    which is another story too.....    Should I get another opinion....  my insurance is paying for this.....    thx

[Rerun]

I don't do my own needles but I like the upper arm for other reasons. 

It doesn't get bumped as much as the forearm.  There is more to the upper arm (meat).  You can hide the ugly thing easier. 

I know!  That didn't answer your question.

             

[tyefly]

I was thinking the same with the forearm....  I like to do things and I am always bumping my arms up....scraping them on bushes out fishing or hiking or just moving too fast and hit that door going from room to room....   sometimes the wall...... LOL       

[Stoday]

My fistula's in my left lower arm.

I was initially worried that it might be exposed to being knocked, but in praciice it's not. It's on the thumb side of my arm and that seems not to be exposed so much as the rest of my forearm.

On the other hand it's only a month old so it's just maturing. Maybe when it grows bigger it'll be more of a risk.

[Hemodoc]

There are two issues to consider that your vascular surgeon does not appear to be paying attention to.  First, using the upper arm will sacrifice the lower forearm veins so you won't be able to use them at a later time.  That is because the usual upper arm fistula is what we call a brachiocephalic fistula.  They cut the cephalic vein near the elbow leaving the distal or lower part not usable in the future.  Why do they use this more often, it has a higher success rate than the lower approach.  Thus, out of the two usual access sites you can have in your lifetime in that arm, they are using both at the same time.

You mentioned that he believed it is the best for access.  Obviously,  can't give advice on whether you can use the lower, he read and interpreted the vein mapping and it will be his call based on that factor.  The only thing that I could advise is that second opinions are your right.

Secondly, I have an upper arm fistula and I self cannulate.  However, I MUST have an assistant to hold the skin stable which would not be needed if I had a lower forearm fistula.  I was not aware of these issues when my surgeon chose the upper arm fistula because it was an easier operation for him.

Lastly, America has terrible knowledge of home dialysis especially those that should be thinking of these things.  I wrote a post on this a few months ago. Take a look at some of the issues that I brought up and then go discuss these issues with your surgeon or your nephrologist.

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/fistula-first-american-surgeons-are-still-last.html

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/which-fistula-first.html

Once again, since I have not examined you or know of your complete medical history, I cannot in any manner give medical advice to your specific situation.  I am simply relaying issues that i have personally encountered and information that I wish someone had told me before i consented to the brachiocephalic fistula.  All of these issues should be discussed with your own MDs and it is there knowledge of your personal situation that would be construed as your medical advice.  I am only offering you some external sources of information.

Lastly, you will need to become your own medical expert on your own personal dialysis issues.  You will need to be well versed in all issues to be able to stand on your own when you know you have encountered the wrong approach on many different issues.

It saddens me that you report your surgeon didn't seem to approve of home dialysis.  It is time for American MDs to get with what the rest of the world already does routinely.  So, you asked if you should get a second opinion and all I can say is that is your right to do that.  You may consider contacting the centers in your city that do the most home dialysis and see if they know of a vascular surgeon that takes special interest in home dialysis issues.  If you find someone like that, you will be in a very rare situation from all that I have  been able to find in my own searches.  Once again, my post is for informational purposes only and you will need to obtain personal and specific medical advice from those physicians that you consult.

Good luck and keep learning.

Peter

[dwcrawford]

I think there might be another reason for using the upper non dominant arm.  I have two nephrologists and a vascular surgeon that I trust implicitly.  They agreed that the veins in my lower arms are simply too small.  I actually saw the pictures as did my Internist (a very good friend and protector or all things medical) and we all concured. 

[Hemodoc]

One more issue, in children they routinely use microscopic surgery techniques to get better results.  That would be one more issue to increase the success rate in a lower arm fistula.  The basic state of your veins is the most important factor in considering which vein to use.  There is specific criteria developed that will give you an idea of how much of a chance the lower fistula will work for you or not based partly on the size of the vein.  There are many good articles that outline these criteria that you can easily find on the internet.

You may want to do some google searches on these two issues so that you understand how a surgeon makes his decisions on which approach to use.  In general, you should always try to preserve the lower access first and only sacrifice this vein if it is not a good success rate candidate based on well established criteria.

You should also discuss whether using aspirin or other platelet inhibitors will be of value for your specific case in improving the chances of your fistula maturing and be ready for use when you need it.  You can look this up on a google search as well so you can discuss that with your doctors as well.

Those are the major issues that I have learned about since I did my own fistula surgery nearly three years ago.  Knowing what I know now, I would have made different choices than I did.

Good luck, learn about all of the issues I have mentioned in my posts and then go armed with your own knowledge and make a truly informed consent with your own doctors.  There are many choices and many consequences to our choices.  For a dialysis patient, we must absolutely become informed enough to be able to incorporate our own information with that of our doctors.  It is the only way that we can make a true informed consent.  So, if you are considering requesting a second opinion, you will need to do that before you have the surgery, otherwise you will simply have to live with your choices.

Once again,  even though I am an MD, I am only relating to you my own personal knowledge of this issue that I have learned from my own experience as a patient.  I am more than happy to relate what I have learned as a patient who is on home dialysis, and have an upper arm fistula and self cannulate.  The ultimate decision that you make must be based on your own personal research and consultation with your own doctors who understand your entire case.  It may turn out that the upper arm is the best in your situation just as you have been advised.  However, ultimately, you must take responsibility for your own decisions once made.  So, if you have a doubt that you are making the right decision as you appear to in your post, then a second opinion may be helpful.

Good luck and keep learning.

Peter

[dwcrawford]

or ask billybill.....if you have any doubts

[Hemodoc]

One more issue that I have found with my upper arm fistula.  Like you plan before you start dialysis, I have planned on home dialysis as well right from the start.  With this in mind, I started my buttonholes as soon as my fistula matured enough to handle a 15 ga needle.  What I found was that the lower arterial buttonhole scarred between the skin and vein allowing me to use the dull buttonhole needle right from the start. 

However, with the looser skin on my upper arm, or perhaps too much fat, the venous site has never scarred down and I must still use a sharp needle to cannulate.  The problem with a sharp needle is that you can get "one sititis" leading to a weakening of the fistula wall and aneurysm formation.  That is what is happening with my venous buttonhole even though it is still a very small aneurysm.  The skin is more stable and moves less on the lower forearm giving you a better chance of using the buttonhole on both arterial and venous access.  Avoiding aneurysms should improve the life of your fistula.

The specific reference to what happened with my upper fistula venous site is called trampolining where the needle will go through the skin but bounce off the vein. It appears to what I have seen with other patients, the risk of trampolining is less with the forearm fistula.  That is why I am a strong advocate of the radiocephalic approach (Lower arm) unless there are some real contraindications to using that approach.

Seeing how I am sitting here with my NxStage System One going full tilt, all of the issues that I have discussed in my three replies to your post I have personally encountered this afternoon alone.  So, which fistula is a very important medical and personal issue to me.

Here is a great lecture that will get you up to speed on the buttonhole technique.

http://www.esrdnetwork18.org/pdfs/QI%20-%20Educ%20Resources%20PP%20Presentations/Buttonhole%20Cannulation%20Technique%201%2007.pdf

Good luck and talk all of these issues with your doctors to get the appropriate medical advise from those that know your case in full detail.

Peter

[jbeany]

I have an upper arm fistula and did self-cannulation on it when I was on home hemo.  It's awkward, but possible.

[tyefly]

  OH  Thank you for all the great information..... I never thought about the movement of the upper arm skin..... and yes it does move.... I was not told that my veins were not good in my lower arm just that they are on the small size and the surgery would be challenging.....  so.... I think you are right   the choice of the surgeon wanting to do the upper arm is probably just the easier of the two..... I am going to cancel my surgery and get another opinion and also talk to the surgeon and express my preference of a fistula in my lower arm..... I want to do home hemo and I do not want to depend on someone else to help.... I am a independant type of person with I really need to learn all I can to make good informed decisions for ME.......    Thx  Peter......   You saved my upper arm and probably a mistake that I could not undo....       

[tyefly]

I am a kaiser insurance member and kaiser has me going to another provider for the surgery..... I will  call Kaiser and ask for a second opinion for access.....  I went to the center that kaiser has for home hemo training and was told that they only have 7 people who do home hemo.... I live in Portland Oregon  I was sure surprised that more were not doing home hemo......  I sure have alot to learn.... I was also told that they dont do extended home hemo and  that I will only be able to do what they tell me to do as far a times and speeds and all of that stuff.....  I was so hoping to do extended so that I would not have the problems that some have with blood pressures and crashing and all of that .... I would rather do it slow and stay on the machine longer than to do it quickly and feel bad ........ That is why I want to do it my self.......  I hope kaiser is not going to be a problem with all of this.......

[MIbarra]

I agree! Thanks for all the info Hemodoc. No one discussed any of this with me when I had to get my fistula. They just said, "That's where we're going to put it. See you in surgery." No discussion, nothing. I was in such bad shape and shock and had no idea truly what was going on, that I just followed along! Since I am relatively young, I worry about access sites later on in life.

[Sunny]

As always, good advice Hemodoc.
I live in a small County where people don't do home hemo, so I'll be heading somewhere else for my 2nd opinion. My nephrologist knows almost nothing about Nxstage. That's when I knew I needed to go back to my General Practitioner and plead my case. When I asked my General Practitioner for an Experienced vascular surgeon who'd done at least 200 Fistulas and that I wanted to do buttonholes myself, she agreed I'd need a referral out of the County. We must be our own advocates. Otherwise some doctors are just using us for their training.

[Hemodoc]

Once again, since I am not privileged to know the details of your case nor have I examined you in person, I can't give you specific advice on how to proceed.  I am only relating to you the things that I have learned for myself going through the same process.  All of the issues that I have discussed are my own insights I have learned as a patient with an upper arm fistula and what I prefer and don't prefer.  These lessons were not learned by me as a doctor, only as a patient facing the same situation that you are now facing.

You are certainly free to decide as you feel is right for you, remember having any fistula is better than no fistula, so keep in mind when you will need to use the fistula and how long the upper or lower one will be usable.  Once again, you need to discuss all of these considerations with your own MDs as a team decision.  Make sure you can get a second opinion quickly if that is what you choose.  Since you have Kaiser, you are eligible to consider all of our resources whether in Portland or elsewhere.

I have learned that Seattle is just way ahead of all other areas as far as dialysis goes.  You are not that far away, so you may want to see if they have an experienced vascular surgeon with Kaiser in Seattle which is not too far away, I believe just a couple of hours if I am correct.  But Seattle is the home dialysis capital of America.

Good luck but please discuss all of these issues with your treatment team.  I do not know your case to give you specific advice, I can only relate my own personal findings and experiences as source of information for you.

Lastly, although theoretically I would have preferred on some accounts a radiocephalic (lower arm) fistula, my current brachiocephalic fistula works exceptionally well.  The other plus is it allows me to consider shooting my rifles as I have always liked doing since growing up in Alaska.  Having a fistula starting at my wrist would put that out of commission altogether.  In essence, there are plusses and minuses for both approaches.  The duty of your medical team is to give you all of the information that you need to make your own informed choices.  Once again, Seattle is way ahead of the rest of the nation and if you can get in touch with someone in that area with Kaiser that has experience with home dialysis patients, you may be way ahead of the game.

I had a patient with severe scoliosis that had surgery up in Oakland CA 15 years before he came for a recurrent problem.  I worked in the LA area and had a patient that wanted to consult with him again.  I asked my local Kaiser phone operator to find the doctor in question, after less than 30 seconds, she connected me to his office.  I was able to send the patients X-Rays to his office where he did an evaluation and recommended against further surgery based on the condition of his bones.  The take home point is that Kaiser has an incredible number of docs who are med school professors.  You have the right to any of them in our entire system with a little bit of elbow grease applied to the situation.  It is likely that you will have to find the people that do these things on your own since in many cases, the case managers may simply not have the time to devote to searching these issues for you outside of their own medical service area.

Once again, you must include your medical team in all decisions and use my information as a source of information only and apply it with your team based on their professional recommendations understanding all details of your specific case.  Do your home work and then review it with your team.  I have provided you with several good resources, use them wisely in conjunction with your medical team's recommendations.  It is your and their opinions that will be the final pathway of decision for your current situation.

As far as the NxStage is concerned, they are already FDA approved for 4 hour sessions which is what I am doing now for the last 6 weeks since my unit does not yet do extended but Southern CA Kaiser is about to embark in nocturnal studies with NxStage and in center.  The main concern that I have with NxStage is that it has quite a bit lower clearance than in center FMC machines which I dialyzed on for over two years.  In such, I am doing 30 L over 4 hours at a blood flow rate of 370 that keeps my Arterial pressure at 140-150 and my venous at 150-170.  This is better than what I had incenter as far as the pressures go.  Further, doing a daily or last 5 times a week regimen should lower the risk of hypotension since you will avoid excess fluid gains.  From all that I have read, longer and slower is better.  There are no good studies showing the lower blood flow rates will reduce complications, but theoretically, it does reduce turbulence which may improve long term outcomes.  Once again, discuss these issues with your team since you still must work with tem in your medical service area.

You can learn all that you can, but if you don't have a nephrologist willing to increase your time or reduce your blood flow rate, you will not be able to do the home dialysis at all.  It is very difficult to educate renal MDs and nurses even with an MD  behind my name as in my case.  Since all home hemo must be prescribed by your specific renal team, you must learn the delicate art of educating them to the facts that longer and slower is better, but still be able to work with them.  You will need to have medical journal articles to do this, so start collecting and then gain your teams opinions on these matters.  You can't get around the fact that they will prescribe your treatment.  If they don't buy into this, then you will not get it, pure and simple.

Lastly, I have found the renal community to be quite overbearing and controlling more often than not in my opinion.  I did not see this in my own practice where I had to adhere to the laws and terms of informed consent.  In my opinion, I see much more paternalistic control over dialysis patients than in all other areas of medicine.  Finding independence and control over your own treatment options can lead to serious retaliation especially when they hold all the cards.   Please take this into consideration as you explore your options.  If your team does not approve of longer and slower, you will be dead in the water since you can't prescribe for yourself.  Gaining the trust of your renal team will be of tantamount need.  Thus, run all issues past them and work with them since you have no other choice in many ways.  If you can find a Kaiser home dialysis team in Seattle that is more user friendly then explore that avenue which is your right as a Kaiser member.  Pay attention to time constraints and understand that having a well timed functioning fistula is more important even than the "best fistula" that is not ready when you need it.  So, if you seek these second opinions you need to understand that you may be delaying obtaining a fistula in time to use it when you need it.

Since I don't know the specifics of your case, keep all of these issues in mind and discuss them all openly with your medical team since they are the only members that can actually give you specific advice on what is your best option since they have all of your medical information directly at hand. My experiences and personal preferences are informational only.

Good luck,

Peter

[okarol]

Jenna had an upper arm fistula (at the elbow crease) in her non-dominate arm.
The surgeon felt that being so young she might be self conscious having it on her lower arm, and he knew that she planned to have a transplant as soon as possible. (The first one never worked but a different surgeon redid it and it saved her vein.)

[Jess21]

I got mine in the lower right arm...I was 21.
eh, cool battle scar, and I can scare people with my thrill.  mwuhahaha.

[Hemodoc]

I have seen less of a willingness to participate in true informed consent in my experieinces in the dialysis arena than in all other areas of medicine, leaving dialysis patients at a decided disadvantage in trying to participate in their own medical care.  I find it more so than any other medical area I have participated in.  In my own daily practice, documenting the discussions that I had in even giving an antibiotic was much more in depth than any decision I have had presented to me in the dialysis arena.

That is why IHD and other dialysis sites serve as a surogate of medical experience.  Nevertheless, it cannot replace the discussions and decisions that are made by your own medical team.  Ultimately, the experience of one patients may not apply to someone else's situation.  However, presenting information to your medical team and getting their response should hopefully gain a greater confidence in why they make the recommendations that they do.

IHD makes it clear that this site is not a place for medical advice, it is a support group where individual experiences may be helpful to others going through the same situation.  Ultimately, no case is the same, so all medical advice comes from your individual patient care medical team.  IHD is for informational purposes only.

[tyefly]

Thank you everyone esp Peter.....  I did have my surgery and had my fistula placed in my upper arm as I was shown the reason why this needed to be done in my upper arm on the left side.  If I had my fistula placed in my right arm  then I could of had the placement down on the forarm....  I am totally satisfied with the explaination and  I am glad that I did question the reasoning of the placement. Doesnt hurt to ask. and expect a good answer.....which I feel  I got....  Surgery went great, arm is sore but there is something happening inside there ... something that I have never felt before....tingleing sensations.....  I think that is a good thing...  I am concerned about the numbness in my forearm  but have no numbness in my hand.....  I am hoping that in time my feeling will come back.....now comes the wait..... and take care of my arm...  Is there anything that I really should not do.... I know that I should not go out and climb cliffs right now  but how much can I use my arm... are there weight restrictions or any restrictions..... I was not told much about any restriction except to keep the bandage on for three days and then take a shower...lol.....   

[kidneyless_In_PA]

I have a graft in my right thigh because as the Dr. here put it if he can't see the veins he can't operate on them. I should have went out of the area. Don't get me wrong my graft is working like a charm knock on wood, but when I stand up and I put a little bit of pressure on my foot I bleed somewhere and then I got to start all over, by then I let out a curse word or two, but who really don't at my clinic. 

[kellyt]

Great information everyone!   

I had my first one done in my left lower arm and it never worked.  Even after vein mapping, when he got in there he thought the vein was quite small, but did it anyway (what the hell, he gets paid either way).  I went back 30 days later and had it done in my left upper arm leaving a nasty scar from elbow to armpit (not uncommon I later found out here at IHD).  Anyway, it worled great although never got visibly large.  Fortunately I never had to use it and it stopped working the day after my transplant. 

The "thrill" is gone so to speak.   

[whiskeyfrank]

Mine was done on July 20th and in my upper arm - my veins were just to small lower down. Worked first time and was ready for use last week, so really quickly.

And as im from the UK it was done by our wonderful National Health Service (NHS) - and its worked (so no death panel yet Ms. Palin)

[lucyskid18]

I got a Fistulla in my left forearm and it never worked, I went back like 3 to 4 times so they could fix it and try to get my veins to work so it could be used.... It still never worked and I ended up doing PD Dialysis and it has been pretty good for me!!!!!