Here we go again - Fistulagram #6

[Vt Big Rig]

Monday night my venus pressure grew, and grew, and grew. Asked Nurse how high can we go. She said in center they go to 400 but with my previous issues to not let it go much over 320.

After the 15 minute "2" they went from 260 to 280. Then crept up to 300. Lowered speed, crept up. Lowered speed again, crept up. After 2 hours of this I was running 330 consistently so we stopped.

Clinic yesterday so everybody gets to run their hands over it and fistulagram #6 scheduled for tomorrow. Yes, the SIXTH one since I started using this on 4/15/15.  Yes, only 5 months.

This time the guy who installed it is doing the procedure so maybe I will wind up with a revision. 

Unfortunate I am getting to be on a first name basis with the nurses at radiological intervention.

This is REALLY getting old.

[PrimeTimer]

Sorry you have to go thru that again. My husband has had several fistula grams and angioplasties this past year so we understand your frustration all too well but, on the positive side he gets to use the same fistula and hasn't needed a new one. We treat his fistula very gently. When I pull his needles, I only apply gentle pressure with the gauze, I don't push down as if I'm trying to plug a hole, I just apply gentle pressure with two fingers. Thought I read somewhere that repeatedly applying hard pressure can cause damage/narrowing/clotting.

[Michael Murphy]

I am sorry for your problems, fistulas seem to either work perfectly or constantly mess up.  Since yours is under 6 months old it probably hasn't fully matured yet.  Mine had yet to really enlarge in the first 6 months.  One guy in the center I use had also rats of problems at first but as time went on and it matured he started having fewer and fewer problems, I should note that was his second fistula.  Now he is problem free not happy but who on dialysis is.

[Vt Big Rig]

Micheal Murphy

Actually the fistula itself it over 18 months old. I had it over a year before I started using it. 

[caregivertech1]

My 2 cents. We were trained in march 2012 to use a Qb of 500 with 20L of dialysate.....in other words a 2 hour blast on the fistula 5 days a week. Our venous pressures averaged a little less than 290. We had multiple fistulagrams culminating with a revision in June 2014. Thanks to the help on this board, after the revision last year we now run a Qb of 350 with 30L of dialysate.....a 3.4hr run 5 days/wk. Our venous pressures are averaging 140!!!! Knock on wood but my wife's fistula is doing great. Don't know what speeds you're running but if you have a revision, dial the speeds down if you can.

[Michael Murphy]

Actually I had my fistula installed two years before its first use and while it was mature enough to use the size of it began to grow after about 6 month on dialysis.  Since the center does not cantu late in the same spot it's gotten larger from my wrist to my elbow.

[Angiepkd]

I feel your pain!  I had my fistula for a year prior to using it.  They first tried in my wrist, but it didn't mature properly, so they did a revision that also didn't work.  I ended up with an upper arm fistula that did mature.  However, my first dialysis session revealed it had a narrowing near the shoulder, so off to the fistula clinic to have it cleared.  This helped and for a couple weeks I had no problems.  Then my pressures started climbing, so back again for another roto-rooter session.  Worked great for another month, then high pressures again. Back to have another declot.  I had to go to another hospital to have a double nephrectomy performed, and they did the surgery with me laying on my left side on my fistula arm.  Woke up from surgery to no buzzing.  They put in a neck catheter and wanted to do a revision but I refused and scheduled back with my own fistula surgeon.  Two days after a major surgery, I was back at my normal hospital having my arm re-worked.  Once again, it narrowed and this time there was too much clot to clean out, so back to the surgeon, who tried to declot, but I ended up with a graft.  It couldn't be used right away, and my neck catheter was a temporary one, so back to the fistula clinic to have the temp catch removed and a better one put in.  What a pain in the butt!  Plus, I had to have someone drive me every time, and I hated asking for rides.  They scheduled my transplant around the time I was able to start using the graft, but I had a horrible time getting used to sticking myself through that tubing.  I always tried the graft, but mostly used the catheter until my surgery.  About two weeks after transplant, I was back at the fistula repair shop to have the catheter removed.  I knew everyone's name at the clinic, and most of their life stories.  Hang In there!  My brother had a really hard time for the first year, but was smooth sailing after that!

[Vt Big Rig]

Well not so good news. 

Surgeon says my present fistula is not going  to work. After six tries to correct it, he likens it to a "lemon" car and thinks we should try something else. He says too many "irregularities" in the vein and too many "bumps" so it will continue to clot, and cause problems. Not sure what that means but I really trust this guy. By chance I know a lady that tracks  all the vascular surgeons in the area for a dialysis provider and she guided me to him in the first place as he has he best results. I guess I am not helping his numbers.

So; veins in lower left arm are not big enough, veins in upper left arm are not big enough. (A first for me, I am a BIG man, smallness is not usually a problem)

He is going to try and transplant a vein from deeper in my left upper arm (I think he said basilic vein) to the top of my left upper arm and if that does not look big enough when he goes in, he will install a graft in upper left arm. I am terribly disappointed that I have lost one site already after only six months. Also that I will have to start with smaller needles, less flow, longer time .... all over again.

Now, trying to find a silver lining .... I get my right arm back I guess. That will be nice.

[iolaire]

Sorry you lost your gold standard access... Did he look at your leg veins?  Just wondering, one guy in our clinic wears shorts because his access is on his left leg maybe 6-8 inches from his groin area.  It seems like a almost private area, the techs put in the needles and he tapes himself up after holding the bandages.

[Vt Big Rig]

Did he look at your leg veins? 

He did not ... he said that is the next step. I do not know the success rate of grafts but I am hopeful. But then .. what else can I be??

[Angiepkd]

Hang in there!  The vascular surgeons have amazing capabilities!  I still have my graft, and my dad had his for 13 years.   

[Vt Big Rig]

A question for those that might have gone through this ... If I have a graft in left arm and a half working fistula in right arm I guess I have to do BP in my leg. My present machine does not have a "hose" long enough for that.

And of course the clinic says " that is all we have". Anybody know how to get around this?

[PrimeTimer]

A question for those that might have gone through this ... If I have a graft in left arm and a half working fistula in right arm I guess I have to do BP in my leg. My present machine does not have a "hose" long enough for that.

And of course the clinic says " that is all we have". Anybody know how to get around this?

Ask your Neph if one of those wrist BP cuffs/monitors will be okay to use. I don't know if doctors can write a prescription for one so that it may be covered by insurance but heck, you'd think it would fall under the "medical device" category. Or maybe you can get one online or at a pharmacy. My dentist uses one...I don't like it but only because they have to fiddle with it several times before they can get a reading on it. They put it around my wrist and then have me hold it up over my chest.

[Simon Dog]

My clinic (Fresenius) just issued me a Contec ABPM50 blood pressure monitor.   The got this for me since it can be programmed to take pressures evern 30 minutes while I sleep so there is a record of how my vitals respond to nocturnal dialysis.  A quick eBay search shows that replacement cuffs in various sizes are available for about $15, including the adult leg cuff.

The ABPM50 runs $180-$250 on ebay.

[iolaire]

And of course the clinic says " that is all we have". Anybody know how to get around this?

 
Suggest they should not do blood pressure since everyone always says you are NEVER to do blood pressure on those arms....  Or suggest that maybe they have the manual cuff and can come around every so often and cuff your leg and listen with the stethoscope!

[Vt Big Rig]

I am a home hemo patient so nobody will be "coming by". Lol.

My frustration is with the clinic (also Fresenius) who always seems to have the attitude that everything is my problem and I have to find solution.  They are no help at all.

[Simon Dog]

My frustration is with the clinic (also Fresenius) who always seems to have the attitude that everything is my problem and I have to find solution.  They are no help at all.

You either have a medical director or facility manager who will not allow the RN to order special products not on their standard menu, or an RN suffering from ergophobia.

[Vt Big Rig]

I'm sure it is not my nurse. She is as frustrated as I am.

[Michael Murphy]

Several years ago I had rotator cuff surgery on my right shoulder they put a blood pressure cuff on my right arm, every time it inflated it felt like they were ripping my arm off.  With the pain my blood pressure kept going up so they kept checking it.  As they were torturing me and I kept explaining that stop taking my bp and it would stop going up.  Finally a more experienced nurse listened to me and left and came back with a leg cuff the pain stopped and my BP dropped to normal.  The leg cuff was not as accurate but if you are looking for changes in bp it worked great.

[Simon Dog]

I'm sure it is not my nurse. She is as frustrated as I am.

Tell her "I have identified a blood pressure monitor that can be ordered with a leg size cuff - the Contec ABPM50.   Can you tell me who would have to approve the clinic buying one of these for my use?".    Somebody has the authority to make that decision.   You need to bother that person directly.  Bring a printout of the Amazon pages linking to the machine and cuff when you go to your meeting with that person.

I am starting nocturnal in a couple of days.  The RN literally "went shopping" for an appropriate blood pressure machine and enuresis alarm on the clinics $$, and had no trouble getting it approved.

Or, file a formal grievance using clinic policy.  Fresenius takes these seriously, especially if they done professionally and not accompanied with a great deal of yelling and screaming.   There is a FMC clinic in TX that no longer has a "no filter larger than 160 for transient patients" policy as a result of one I filed.

[Vt Big Rig]

I'm sure it is not my nurse. She is as frustrated as I am.

Tell her "I have identified a blood pressure monitor that can be ordered with a leg size cuff - the Contec ABPM50.   Can you tell me who would have to approve the clinic buying one of these for my use?".    Somebody has the authority to make that decision.   You need to bother that person directly.  Bring a printout of the Amazon pages linking to the machine and cuff when you go to your meeting with that person.

Yes, Simon Dog, I have already printed that out from your last post on this thread. I have mentioned my wife is a dietitian for Fresenius. When this stuff happens she goes to the regional manager, who she sees on a regular basis. That usually fixes it pretty quickly!!

[Vt Big Rig]

He is going to try and transplant a vein from deeper in my left upper arm (I think he said basilic vein) to the top of my left upper arm and if that does not look big enough when he goes in, he will install a graft in upper left arm. I am terribly disappointed that I have lost one site already after only six months. Also that I will have to start with smaller needles, less flow, longer time .... all over again.

Apparently I am more anxious about this than I thought. Surgery is in the morning and I am in one REAL CRAPPY mood. Jumping at people at work for no real reason.  Is the vein transplant going to work? How long will the graft (if needed) last. How do I correlate ankle BP to my arm BP? The reading I have been taking on my ankle the last few days are all over the scale and no where near the ones on my arm.
If vein transplanted how long before I can use it? Will present fistula last till then? How long will starting over with smaller needles take?  Already cant use right arm for anything, now can't use left either???. What do I do now? Dear wife has to relearn cannulation on the graft. ( I know I should learn but she refuses to let me).

All this stuff running through my feeble mind. Maybe getting put to sleep tomorrow for surgery will be a relief!!!

Then just deal with whatever happens. Lots of praying going on here......when I can stop thinking of all this stuff!!!!

[Vt Big Rig]

Well, I think the surgeon would say operation was a success. He did transplant the vein to the top of my left upper arm. So now we just hope the one in right arm last until this one heals. Based on my history of a fistulagram a month we will probably need at least one more.

From my perspective this one HURTS more than the first one. And doing dialysis last night it really started hurting. Dear wife says ......Well, dummy, you are filtering stuff out of your blood, apparently it takes out pain killers also!!!!

Last night was a comedy routine trying to get BP readings on lower leg.  Should have taped some of this stuff!!!!

[PrimeTimer]

Well, I think the surgeon would say operation was a success. He did transplant the vein to the top of my left upper arm. 

VT Big Rig: My husband had the same procedure when a surgeon created his fistula. Other vascular surgeons that have seen it call it a "beautiful fistula", which over time I began to realize that is a term they seem to like to use to describe another surgeon's "good work". Anyway, he's had the same fistula a little more than 2 years now, has worked great but has needed several angioplasties, almost like clockwork every 3-4 months. In fact, he goes for another next week. The good part is that both he and I, along with his Neph keep a close eye on it and have learned when it is about to get "iffy".   

[Vt Big Rig]

Well, Prime Time, I think I would be happy with 3-4 months. I has been closer to 3-4 weeks on the first one.