Dear Troy
I am so sorry to read of your problems. Vascular access is the true Achilles heel of dialysis and causes us all, patients and professionals, more trouble than any other aspect of dialysis. Sadly, it is one of those areas where a small number of patients bear the brunt of the problems. Many have no issues at all - for years or decades - with the same access, while others take punch after punch. It can (and is) so often so unfair.
While I clearly cannot advise directly on your specific issues … I have not seen, touched, felt, your access, I know nothing of your medical history or your vascular status and your past history, nor do I have access to the x-ray pictures of your fistulogram … I can still make some general comments that may help.
Firstly, patients with a history of vascular disease - and especially if their history includes diabetes (sometimes the diabetes itself made more difficult by the added problem of excess weight) - commonly have the most trouble with vascular access. I do not know if you are diabetic or are overweight, but if so, these may be complicating factors in your access history.
Further, patients who ‘present late’ … in both the USA and Australia, this is about 20% or a little more of all patients coming into dialysis programs where end-stage kidney disease has not been discovered until just before dialysis has been needed … these patients do not have the ‘luxury’ of early and planned access surgery. ‘Luxury’ may seem to you to be an odd word to use, but by ‘luxury’, I mean the time and forethought to fashion a good and maturing fistula well ahead of the need to use it. We like to get a fistula (always, always, always native and never a graft) into place at least 6 months prior to any likelihood of the start of dialysis. Now, that does not always happen - for a start, 20% or more of patients present late to renal services (these are typically those who need dialysis in less than 3 months from 1st diagnosis) - and clearly these cannot have a fistula made in a timely fashion. But, at least six months aforehand should be an attainable goal for most patients. This gives time to sort out and correct fistula problems before dialysis use dependence interferes with and complicates the picture.
Late presenters or those who, for one reason or another, have their fistula formation delayed, may end up with a catheter. Years ago, these were often ‘subclavian’ catheters - but we have learned that subclavian catheters have a high central vein damage rate and lead commonly to stenosis (narrowing) of the vein at or near the point of entry. Straight ‘north/south’ internal jugular catheters have replaced subclavian catheters and though these are less likely to cause stenoses (narrowings) … they still can and do!
So … if you have has any prior central lines, I would want to know that the fisulography that you have had done has followed the vein right into the chest to the heart - including the great veins of the chest cavity, the (L) innominate vein and the superior venacava. Narrowings here can be major causes of peripheral fistula (or graft) malfunction, with high pressures, sluggish flows and recurrent clotting. One clue can be small visible (blueish) veins under the skin over the shoulder and across the chest wall on the side of the stenosis. Central vein ‘patency’ … In other words, good clear, open and unobstructed central veins should be assured … especially in your case … though I suspect that this has already been carefully checked and looked for. However, it can be easy to focus only on the arm fistula (or graft) and miss a central vein issue as a result.
Our vascular surgeons (I do love them so) have a rule of thumb … "if there is a vein large enough to successfully join a piece of ‘artificial vein’ to (i.e.: a graft) then it is large enough to join a native vein to. Indeed, you need a larger native vein to connect a graft to than to connect a native vein to … sorry, Troy, for the number of “to’s” in that sentence, but if you read it through a couple of times, you will get the sense of what I just wrote. Our surgeons prefer (as do we, their referring nephrologists) to use native veins at all cost. We transpose (move and relocate) native veins within the arms. We remove veins and reverse them (to avoid problems with their valves) from the legs … just as cardiac surgeons often do for bypass grafting in the heart. We will bend over backwards to find veins to form loops with, to use as skips or straight connectors, to use as vein patches … anything to avoid stents (which always block) or grafts (which never last and often fail). And, find them we do. All over the place. Again, our own personal preference, our ‘rule of thumb’ is … “always native, always”.
You have a graft. I do not know the circumstances of that graft - but it’s there. Sadly, angioplasties of vein stenoses almost always re-stenose (no, not always, just usually). Also sadly, stents tend to block … leading to another, and then another stent. This is the way of stents. This leads to repeated interventions - a frustration for the team and a nightmare for the patient. It may be worth trying to dilate (angioplasty) and stent a recurrently narrowing, clotting or blocking graft while an alternative access is being fashioned - though please, please, let it be a native fistula!
I do not know whether there is a prospect of forming an fistula on the other side, your other arm, or even in the thigh … we have had a number of very successful long term femoro-femoral native fistulae over the years both used in our facility program and for patient self-puncture by patients on home dialysis … But if there is, that’s where I would likely be going. Arms are clearly easier and best - there is no doubting that - but if the arms are exhausted, legs do well too. If the loop can be ‘looped’ well down and away from the groin skin fold (this area can get moist and a bit ‘whoofy’ in some people, they can be very clean, very big, very easy to cannulate loops. They can be very successful. Preferably that than another graft from and to small arm arteries and veins which may be doomed to the same risk of failure.
Depth is a real issue with fistulae. This is especially so in people who are carrying too much body weight. I have written previous answers to posts on this issue. Can I refer you back to my answer to the post entitled:
“Fistula/Needle Problems” posted by ‘needled88’ on December 18th 2009
Here I dealt with the problem (common) of fistula depth and the need for superficialisation of native fistulae.
I know yours is a graft … and for technical and scarring reasons, once a deep graft, always a deep graft as they don’t take kindly to being superficialised. It would be important to ensure, from the outset, that a graft (if a graft is being used and you will already now know my feelings about grafts) is superficially placed. Once too deep, all the wishing in the world wont bring it up.
For you, Troy, it would be important to take into account …
Your age, diagnosis, prior vascular history and diabetic status
Your prior (and present) smoking status
Your prior catheter history (if any)
Whether any prior surgical work has used or troubled your leg veins
Whether your ‘other’ arm is unused
Whether your great internal chest veins have been well examined
If your ‘imaging’ has had the benefit of rapid sequence CT 3D fistulography or has been simple 2D angiography
And other things as well …
That is probably the best I can do from afar
I hope things resolve for you. I feel your frustrations - but they are shared by many who are in the same boat.
Keep your courage up, ride the punches and keep asking questions.
I hope that has been some use to you.