Fistula Frustration

[Charlie B53]

My fistula is causing me a lot of frustration.  It didn't mature much at all when it was first created a little over two years ago.  It needed a revision and the Dr raised it a lot closer to the surface.

Still didn't mature.

Ballooned it.  a little growth but not much.

I was sent to the local Vascular Surgeon and ballooned a section near the beginning of it, and it started to grow.

So it toook aa whole year before we finally started using it for treatments.

It has always had quirks.  I think of it as sections, thirds.  The first third works fine for the arterial flow.  The middle third, doesn't want to do anything.  I am pretty sure it is narrowed and needs ballooning again.  The upper third worooks fine for the return.

The problem is I bleed easily.  And I mean BLEED.  Sometimes blowing out alongside the needle, gushing with every heartbeat.

Doppler flow studies show the flow dies off somewhere in my shoulder.  The major return isn't happening.   Dr finally had me in the Cath Lab today, planning on ballooning everything but before that he wanted dye studies so he would know what and where the restrictions are.

Problem.   The main return line is totally blocked off.  He couldn't get a wire through it.  Ended up giving up, and didn't bother ballooning anything.  Telling me I should have another access created in my other arm.

I didn't agree. I asked if there is any other way he can open or replace that clogged section.  Dr said he didn't think I would want him cutting into my chest.  Why not?  I've had my chest cracked open once before for my by-pass.  IIf that's what it would take I'm game.

He wants me back in the OR early Wed morning and he will try going in through my groin.  If successful most likely I will have to go back to have the fistula ballooned later.

Crazy how it is still working.  My adequacy is fine.  I've forgot the word, the flow tests the clinic does during treatments, those numbers aren't the best, but they aren't that bad either.

I told my Nurse I want to just keep using it until it clearly shows a decline in my labs.  When that happen stick a Perma Cath in then we  will talk about Plan B.

This Needle=Phobia is kicking my butt.  I have enough stress just going in, sitting still and letting them stick me for treatments.  And the Dr wants to poke me a bunch, and start cutting again.   

I'll go Wed but he and I are going to have a talk.  Take it slow.

[jambo101]

Has the doctor not suggestedf the possiblity of another fistula on a different area of the arm. many patients in my dialysis ward have fistulas that didnt work and are content to stay with the catheter.

[Charlie B53]

Initial vein mapping led to my bicept instead of forearm, so the left arm is or will be done.

I'm thinking it is still working, so use it until it doesn't.  Why should I cut into my good arm now if it is going to fail in just a few more years?

The flow through the co-laterals(Sp) is sufficient for dialysis, my access flows are still acceptable, if it ain't broke why fix it?

Save the other arm for later when this fails completely.

Dr and Nurses tell me I am one of those people that instead of a fistula continuing to 'develop' or swell, I close.   Just a little over two years, that ain't a long time.

I could drop dead tomorrow, then again, I could live another 40 years.  Two years per fistula would use up my other arm and both legs far too quickly.  I think it far better to make it last as long as possible before making any changes.  Far safer to go slow and easy.

[iolaire]

If your labs are ok then the return blood must be finding a path around the closed area?  Is there an option to not worry about the closure and let the blood continue on it’s path somewhere else?

[GA_DAWG]

Charlie, have they said why they won'y use a graft instead of a fistula. My attempt at a fistula did not work, and after mapping they decided I needed a graft instead. They put the graft in the same arm they had tried the fistula, though they tried the fistula lower than the biceps. I think you might be talking about your clearances are alright on your tests.

[Charlie B53]

The fistula itself can be ballooned in the middle area, the problem is much farther downstream, way up and around the corner of the shoulder the main return channel has closed off.

All flow is diverted through a few co-laterals so for now there is still enough flow for adequate dialysis.

This is why I am not so concerned as yet.  Why cut into  my other arm to create a new access if we can still keep using this one?

If I am one of those that access closes off instead of continuing to grow, why start another if this one isn't quite finished yet?

I rather save my other arm until it is 'required'.

If this one suddenly fails completely we can always poke in a perma-cath and use that while we work on the spare arm.

I don't want to use the arm until it is required.

Phone call, not 6 a.m..  OR at 9.  I'm second on the list for the OR Room.

Hopefully he can poke a hole through this spot from the groin side, then all this discussion is wasted. 

I'd cross my fingers if I really thought it would help.

They won't knock me out.  That's the hardest part.  This Needle=Phobia keeps kicking my butt.  Trying to just lay there, hold still and LET him stick that fat hole in me.  Jacks my Blood Pressure like nothing else.  They see that and give BP meds but those meds don't do a thing for what's going on inside my head.

I've told him before just Knock  Me Smooth OUT!!!!   No problem.  I'm fine with that.  Take a nap.    I like naps.

But they won't.

Qwap!

[SweetyPie]

Charlie,

Sorry you are going through a tough time. Although my situation is diff I am also frustrated so I understand. I would hate for you to keep getting revisions over and over again with no answer. I think the Perma cath for sometime will give you a little room to take a breath and just chill out and think of something. Getting poked and prodded at takes its toll on the body I’m on the same boat.

[cassandra]

Good luck Charlie


   


Lots of love, Cas

[UkrainianTracksuit]

Sending best wishes, Charlie. I've been to the quirky fistula carnival and it's not a fun ride. Take care.

[Charlie B53]

Wed morning I got a call very early, seems they wanted me to come in earlier than my scheduled 9.  I checked in at 8 and learned the 6 appt guy had called that he would be very late which is why they wanted to get me in and started.  He showed up about the same time I did so they went ahead and took him, 2 hrs late.  Which pushed me back at least 2 hours.  I didn't get wheeled in until Noon.

Dr still tried to convince me it would be best to make an appt to have a new access created in my right arm.  I flat refused, as long as these co-laterals keep flowing sufficient that my labs and access flows remain acceptable, I was going to keep using it. Period.

Anesthesia Dr came in, I told him how I hated Monday's procedure, all awake, covered head, couldn't see, Needle-Phobia and all.  He came in while the Nurse that usually sticks me perfectly fine was having a problem.  The moment he told me he was putting me out I relaxed and Nurse got my IV in.

I woke up about 5:30   What?   I thought I was supposed to have my Dialysis afterwards.  Day shift has already gone home.     Evidently I must have made a point to the Surgeon and he really wanted to make this work,  Cause he spent FOUR HOURS getting this thing opened up.

So a bunch of bruising, feels like I've been punched a few times, but it will all go away soon enough.  The before and after dye flows are hugely different.  It flows great. 

No choice but to spend the night, wait for treatment in the morning.  I guess they want to see it run rather than just let me skip.  O fogure I got an excuse to drink a bunch tonight as I'll be in my regular chair tomorrow.

I'm hooked up and running right now so I can go home once finished.  Dr came in and I Thanked him for the tremendous effort and time.  He wants me to start taking Comiden(Sp) to help be sure this doesn't clot again.  More flow tests within a month.  I feel sure this is going to work well.

[iolaire]

The problem is I bleed easily.  And I mean BLEED.  Sometimes blowing out alongside the needle, gushing with every heartbeat.

re: Coumadin/warfarin that will make you bleed more.  Make sure everyone knows about your current bleeding at the site before they start thinning your blood more...

[SweetyPie]

Charlie,
Despite the difficulties I’m very happy to hear we got the ball rolling again. One I’m glad you were knocked out. Few times I had to get my cath in I was kinda awake in and out of sleep with a cover. It’s scary you can’t see what’s going on and you can feel the pain but are too weak to say something. I think if we just tell doctors how uncomfortable we feel they will actually listen. Again, really happy take it easy.