I have an upper arm fistula and wish to do extended dialysis. my problem is that my fistula is very positional with respect to alarms, and since it is superficial to the skin surface, very little pressure over the top of the fistula also affects this. in you and Dori’s book ‘Help I need Dialysis’, you mention use of splints/arm immobilizers. Since I respect your knowledge and judgement, I thought I would ask you if have any ideas for dealing with this? My idea is to make a tunnel out of something such as a used plastic lotion bottle, cut in half and padded to provide prrotection from the edges. I was also considering adding a taped flange to enable me to tape it in place. A bit Heath-Robinson, I know and I was wondering if you have ambetter idea. I have ordered an elbow immobilizer that gives a slight fixed flexion to,the elbow,and secures with velcro. I would like to know of your thoughts about this, and wonder if you have some additional information that you may have to,overcome this issue. I reallymwant to optimize my dialysiis as I am still relatively young, have a 20+ year history of ESRD, and need to be around for a good few hears yet as I still have a school-age son. thank you in advance for your reply. Amanda
Dear Amanda
The first prerequisite for successful home HD – and especially long overnight nocturnal haemodialysis = in my view, the best, most efficient and least symptom-related/fluid and biochemistry distorting of all dialysis – is a good, reliable and easy-to-needle AVF. Here, in Australia and in my own unit, we insist on self-needling and self-care … also, in our view, the most effective, empowering and safest form of home HD.
That said – and I will come back to this – we also are not keen to immobilize joints … especially the elbow … as immobilization is (a) mightily uncomfortable, (b) the discomfort breeds poor sleep, and © it is not, in the loner run, in the best interests of the joint itself. In my view, if there is a need for or there must be a resort to immobilization, this is simply hiding the underlying fact that the fistula is not ideal for the job it is meant to be doing.
Back to a good fistula …
First: an upper arm AVF is never as ideal for dialysis – or for self-needling – than is a forearm fistula. That said, not everyone can get a suitable forearm fistula – though this can sometimes be more due to a lack of surgical creativity than to a lack of vein or artery suitability.
We have had a strong nocturnal program for a decade and a half, and have been blessed by a quite superb vascular surgical team, the members of which have taken great pride in AVF creation and made it a minor local art-form. Sadly, that cannot be said for some others, who find AVF surgery a bit of a chore and one that gets in the way of their ‘more important’ vascular work. The point of this ‘soap-box’ comment is that our guys just know how important it is to get as good, straight, superficial, and wide as a super-highway segment of vein as they can, as they know this is to be a patient life-line and needs to be patient-punctured. They apply this surgical principle and practice equally to forearm and upper arm AVF.
To this end, they transpose (move), superficialize, use segments from leg veins (if they must) as skips or patches … but, mainly, work to achieve good length superficialization!
Reading through your post, I am left wondering if you have had your graft superficialized? The majority (not all) of upper veins that we use as nocturnal AVF do need to be. Further, the cephalic vein … not the one on the inside of the upper arm – that’s the basilic vein – but the one that usually goes straight up over the bicep muscle and is the ideal one to augment (though that said, we have a number of brachio-basilic veins in our nocturnal AVF fleet … some transposed, some not) … the cephalic vein often dives deeply into the arm an inch or two up from the elbow crease. This leaves a very short segment (too short for most) to use for double needle HD access.
Oh … and remember here … BOTH needles must be inserted so that their tips are directed upwards to the shoulder, not as was taught years ago that the arterial should face downwards in the direction of the hand … see an old Webinar I did for HDC years ago on needling direction … ask Dori if it is still available.
If this ‘dive’ issue is yours … and I suspect it is … it can be corrected by relatively simple surgery to lift the vein from its ‘dip’ into the deeper tissues such that it runs long and straight, just under the surface of the skin in the superficial layers of the flesh of the upper arm – all the way up to the shoulder.
I am guessing here, but I suspect this ‘diving deep’ problem + a lack (so-far) of surgical superficialization may be your problem. I may be being unkind to you and your surgeons – I don’t mean to be – and I may be guessing wrong (but a ‘guess’ is the best I can do for afar) … and if you have been superficialized with all this stuff ticked off, than my apologies to your team for thinking otherwise … but, to be honest, we wouldn’t send someone home till this was all sorted out.
Failure of home dialysis is rarely (if ever) failure of patient resolve or intent. It is almost always failure of us: failure of system, failure of education, failure of adequate AVF construction, or failure of appropriate home support.
Don’t give away your resolve or intent. AVF problems are there to be solved. The answer is not in window-dressing a poorly suited AVF to NHD by playing catch-up with uncomfortable splints etc … no … the answer is solve the underlying problem of your fistula. No one should have to lie overnight with their arm tied to a board. We encourage and expect free-sleep, unfettered by restraints. This should be your goal. It is attainable. It just needs some creativity to have your surgeon fashion the best, long, straight, super-highway section of vein above your elbow that can be made.
NB: Dori … I still think this site construct gives me the best way of answering questions. FB just doesn’t give me the same answer/review/edit/expand/explain capabilities - but I guess that’s (a) a personal view and (b) the view of an aging communications luddite.
John, in answer to your thread. I have an upper arm (must be a basilic vein because it is on the inside) fistula, not graft. It has been transposed upwards, and at my insistence and further surgery, moved across to over the bicep (although it still to the inner side of this and not on top). I self-cannulate and the needles point upwards to my axilla, and not down. I am also completely self-caring, which I also believe to be very important, for sake of my marriage and also my strong desire to be in control of my own life!). I do not have a long segment of fistula (only about 2.5 inches total before it dives down again). I really want to do extended, because of the better outcomes and because I find short- daily a miserable existence. I really do not know how to go about finding a surgeon who will meet my needs. I tried 5 different ones just to get this fistula. I am beginning to wonder if I should have gone for a graft in my forearm but was so committed to getting a fistula since I know that this is generally considered to be the best option. Indeed, two of the doctors that I turned down , did talk straightaway about forearm grafts, although I think that they were just opting for the easy option. I am worried that now the issue is, I have a working fistula, it just doesn’t work in a way that is right for me.
If I start looking for a new vascular surgeon with a view to trying to get this sorted out, what questions do you think I should ask, and how should I word it in a way that stops them from just saying that I have a working fistula?
Ok … That makes it a bit clearer.
Of course I can’t see or touch or examine your AVF from here and that makes it still too difficult to know what to suggest but it does sound as if you have a dive problem. This can potentially be solved, either by superficializing the upper arm vein proximally (ie. beyond the dive spot and up towards the shoulder), or, if this cant be done, by considering a reverse saphenous vein forearm loop. We do these, not uncommonly. We have not put in graft material as an AVF for the best part of a couple of decades … we try always to use native vessels. Ok … I admit, we have used small PTFE segments as ‘skip bridges’, but not ever as the needle-accepting segment - for that, we use native vessels every time.
To allow this … much like the cardiac surgeons ‘harvest’ good veins from the leg(s) to use as coronary vein grafts in coronary artery revascularization surgery in the heart … our fistula surgeons prefer to leg-vein-harvest too. But in our case, we use the harvested leg vein for a reverse saphenous forearm loop - but not a PTFE loop - from the brachial artery to the cephalic vein at the elbow.
This gives a lovely long superficially tunneled AVF … but as the AVF will then have reversed valves within it that can inadvertently get in the road of needling, the position of these can be simply noted, or can be marked (or even tattooed) to guard against later needling problems. These do very well and, in addition, give the NHD patient a more stable (forearm vs upper arm), and more accessible (forearm vs upper arm), and more sleepable-with (forearm vs upper arm) AVF.
That’s likely the best I can do from afar. Believe me, the problems you have can be solved.
What surprises me in all this is that you say ‘you’ have to find a surgeon … that ‘you’ need to tell him/her all this … that is seems to be ‘your’ responsibility … that it is’your’ problem to solve!
Isn’t that why you have a nephrologist and a treating team? Surely, it should be their responsibility - to and for you - to sort all this out.
That last little bit leaves me more than a little bit bemused.