Wondering if Kidney School has anything on a maintenance plan for fistulas? I have been fortunate to have my fistula problem-free for years now. Our clinic did have a non-invasive device for checking how good the flow is on a once a month basis (can’t recall the name of the device- would anyone here know?) Sadly, they got too busy and don’t provide the check anymore. In my thinking, this should be mandatory not optional. I read where another patient said she gets regular ultrasounds, because waiting until pressures are elevated may be too late.
I am told that there is a good access surgeon in my area, but he is an hour away. I’m thinking that is too far if I ever needed an intervention quick, Wondering what are ways to check out if a radiologist or surgeon, locally, is skilled? The thought of going to someone in an emergency only to find out he is not that skilled concerns me. I’ve heard of this happening to patients quite often.
Hi Jane,
I’m not exactly sure what you mean by a “maintenance plan” for a fistula. As far as finding a good surgeon, showing up at the ER is probably not the way to do it. You might try checking with your ESRD Network or getting referrals from other folks in your area who have good fistulas or from a nephrologist you trust. You want to find someone who does LOTS of fistulas, and the fistulas work.
Hi Dori,
By maintenance plan I mean, one should not wait until art and ven #s are excessive and the thrill is gone to have ones access checked. I recalled the name of the device I spoke of- believe it is a Transonic. Despite being on dialysis for many years, the professionals have never even mentioned this subject to me. The other day I spoke to my nurse about putting a plan in effect. Her response was that one simply goes to the hospital if there is a problem and get’s declotted. I thought wow this is all my nurse knows on this subject?! I am wondering what I can do as a patient to find a reputable radiologist/surgeon, I want to have these #s where I can find them, I want to check with them from time to time to make sure they haven’t moved away, need to know how often my access should be checked to make sure it is working properly, what the procedures are to check it, need to know what types of things can go wrong with it, need to know how much time I have to get to someone if I have a problem with my access and anything else I haven’t thought of.
I’ve read about access issues for years and you would think I would have a plan by now, but it’s just another area I haven’t addressed yet as I get no education in the clinic and have to always think of the questions to ask. I don’t know that I have ever read about a specific maintenance plan before. Just know that some say they have regular checks of their access. I did try to set something up like this through my neph once, but in clinics I have been in they don’t seem to take things like this seriously. I don’t know what could be more serious then protecting ones access. So, I was wondering if kidney school covers this or if there are any articles anywhere. I have read brief little articles through the kidney groups, but nothing more substantial.
I have a monthly test done, called Transonics, that measures the flows through my fistula… also shows whether or not there is recirculation. Is this what you mean?
I should specify, this occurs while I am on dialysis, there are little clips that attach to each the arterial and venous blood lines, which are then attached to the Transonics monitored… it is diplayed in graph form on a computer like monitor.
Essentially, each patient develops a base line, and when there is a drastic change after a month, they order an angiograhm and or /angioplasty to determine the performance of the fistula.
Hi Kidney_Mom,
Yes thank you, this is the device I referred to. I knew that it measured the flow through the access, but didn’t know the other part about recirculation. I always had a flow of over 2000 and was told my access was very clear. We had a tech that would come around to each patient to test. The part about the graph display on a computer-like monitor was never explained to me. Was just told no recirculation.
So, I see what you mean about the next step being an agiogram. I just need all this spelled out for me more so I know everything I need to know to be able to act swiftly if there is an issue. I’ve read that timing is very essential when there is an access problem yet in clinics like I’ve been in education is so lacking access failures are routine. And I don’t know what the care is like in Canada, but here it is important to find a good radiologist/surgeon as skill can vary a lot.
It WOULD be a terrific thing to track possible developing stenosis (narrowing) of a fistula, either by using a Transonic (or something like it) or by charting venous pressures during treatments and watching for subtle changes over time. When you said “access plan,” I thought you meant more like what Dr. Vo Nguyen has suggested, which is, if this fistula fails, our next option is to use X artery and Y vein, and after that we’d do… He and his vascular surgeon plan out the next two or three access options for each patient, and his practice has the highest fistula rate in the US.
Good morning Dori,
This name is new to me. Where is he located? As I stated, there is a top surgeon in my area and maybe he knows some of this doctor’s techniques. But I need to begin with step #1. I need answers on everything I need to know to develop a plan for my access care. Someone with this knowledge could explain it to me in 5 min. I’m sure. Maybe one of your expert associations could share a linc to a good article or do a post on it?
Hi Jane, Dr. Nguyen is in Olympia, WA, if I recall correctly. We were planning to do another couple of webinars on vascular access–Stuart Mott would like to do another one (yes, we’re working on getting the recording up), and Debbie Brouwer has agreed to do one, too. We could ask Debbie if she could do something on planning.
Dori,
Note my post to Beth. Webinars are certainly the wave of the future. A systematic approach to dialysis topics would save lives no doubt! It is past time for dialysis education to be revamped into a format that really reaches the dialysis population. Webinar School has arrived!!
Thanks Dori, I wonder, too, why more don’t reach out for education. And thanks to the info and encouragement I got at this board and elsewhere, I recently finally made it to nocturnal txs which has taken me to a whole new level of wellness. I will have a lot to share in time about the cadilac tx. for those who want nocturnal as badly as I did. With what I’ve been through, I have a passion to see patients get the best tx, and get educated about their tx in the shortest possible time so they can feel well and get back to productivity.
Hi Jane,
Wow, that’s terrific news! How is it going for you? What do you do to secure your lines and needles while you sleep? Alarms? Are you using a bed or a recliner? Enquiring minds want to know.
I met the management team from Transonics last week in DC and had dinner with them…or should I call it a drinkfest. They’re great guys and actually picked up the tab for about 12 of us. They obviously had so much to drink they didn’t realize what they were doing. Just ask Pat. ANyways, I sure hope they don’t do any design work after a night like that.
There also is a new device from Medisystems which will measure pressure called Access Alert.
Dori,
Not to keep you in suspense, but I plan to write a post one day soon that covers all your questions. Let me just say for now that things are going great and there is a simple solution to each thing you mentioned.
Before I made it to nocturnal, I used to think but how do you do this and how do you do that. It is so simple that it shocks me even now that a better explanation of nocturnal was not available when I was searching for information. I plan to write a little something that will open eyes that nocturnal is totally doable and should be the preferred tx.
Getting back to access care plans, I brought this up to my neph this week. He told me the top vascular surgeon in our area is retiring soon and as far as the other ones, one was as good as another-no one as talented as the one who is retiring. Seems the talented one was a one-act show and did not train anyone under him. And he said it is not always possible to secure one of the better surgeons or radiologists as they are part of a team and the teams have both average good and less then good members. He said access problems are usually emergencies and you get who you get. Just what I did not want to hear ugh! So, I sure hope we can get some answers on how one can know he won’t get pot luck when an access procedure is needed. The thought of leaving it to chance really gets me down- surely there is a way to know one will have a competent professional when the time comes for an access procedure.
[quote=Jane;17696]Wondering if Kidney School has anything on a maintenance plan for fistulas? I have been fortunate to have my fistula problem-free for years now. Our clinic did have a non-invasive device for checking how good the flow is on a once a month basis (can’t recall the name of the device- would anyone here know?) Sadly, they got too busy and don’t provide the check anymore. In my thinking, this should be mandatory not optional. I read where another patient said she gets regular ultrasounds, because waiting until pressures are elevated may be too late.
I am told that there is a good access surgeon in my area, but he is an hour away. I’m thinking that is too far if I ever needed an intervention quick, Wondering what are ways to check out if a radiologist or surgeon, locally, is skilled? The thought of going to someone in an emergency only to find out he is not that skilled concerns me. I’ve heard of this happening to patients quite often.[/quote]
Long term dialysis does require fistula revisions and/or maintenance. The quickest way you will know whether your fistula needs checking is when pressures on the dialysis machine are way off. Your labs may still show normnal but pressures will not. Other visual signs include steal syndrome that cannot be solved and pain on the arm at night while trying to sleep, including edema. After 20+ years with fistula you may also start having carpal tunnel at wrists which later may require surgery. For troublesome fistulas that block after 1st year of angioplasty it then may require to have a stent placed. Take a look at this video by Dr Kenneth who explains about: Angioplasty & Vascular Stenting
Recent research studies have found thata combination of aspirin and the anti-platelet drug dipyridamole has been shown to significantly reduce blockages. read more about it below.
