I don't know what this is.

[MooseMom]

Please forgive me for yet another thread about my fistula, but I just want to know if this has happened to anyone else.  I had an upper arm fistula created back in March.  Everyone says it's "excellent".  I think it is too good.  I don't know what is going on, but my guess is that it is something like this....as it has matured, I can feel the "thrill" further and further up my arm.  It's as if the vessels are all growing to accomodate increased blood flow.  I can now feel the thrill in my neck just over my left collarbone.  In fact, I can feel a slight swelling...I'm thinking that is the blood vessel getting larger.  I know this is normal because the cardiologist I saw to give me approval for transplantation did a doppler ultrasound on my neck to make sure that the bruit she was hearing on my left side was from the fistula.  It was.

OK, so here's the odd bit.  In the last few days, I imagine that now I can feel the thrill in my heart.  It feels like instead of my heart being encased in my rib cage, it is instead just under my skin.  The result is that I can feel my heart beat all the damn time.  I aced all of my cardiac tests (altho those were back in the summer), and during my visit to the neph just a few weeks ago, he said my heart was "boring" (which is code for "OK").  So I'm not really worried that anything is wrong, per se, but it is a very disconcerting sensation.  I feel the thrill all the way from the inside of my left elbow, up my arm, in my neck and now in my chest.  Any thoughts?  Does this make sense to any one at all?  Thanks for any and all replies.  I'm not very happy right now.

[Tracy]

I'm sitting here feeling of my fistula.  It is in the upper left arm.  I can feel it from my inner elbow to almost my underarm.  But, that is as far as I can feel the beat.  I am thinking you must have GREAT blood flow.  I can't imagine having that beating all the time though and can understand how frustrating that must be.

I hope you can find out exactly what it is and maybe find some relief some how.

Good Luck!  Tracy  

[Pam]

My fistula is in my upper left arm also nut my armpit is as far as I can feel it. Hope you get it figure out. I'm interested to hear the answer to this one

[monrein]

I also can feel this thrill just below my collarbone on the left side.  What's more, if I press on that spot and look at my fistula it will bulge up in that spot as the flow is temporarily stopped.  After reading about potential issues with the heart with the fistula continuing after transplant I went to see my vascular surgeon in whom I have great confidence.  He said he could tie the thing off but all looks good and my heart function is great.  No LVH, even after a total of 6 years on D and when I did my stress test pre-transplant the tech thought I was donating instead of receiving and told me I could quit well before I felt the need to.  My doc said to just keep exercising and eating healthily so that's my plan.

I don't like the look of this fistula..bigger than my first which was in my forearm but I will say that I (bizarre I know) find it somewhat comforting that I still have this "lifeline" just in case.  I also use the feel of my fistula and that spot below my collarbone as a comfort if I can't sleep.  The pulsing seems to soothe me and I think good thoughts about healthy blood moving around my body...hey I never said I was "normal".   

[KICKSTART]

I dont want to alarm you but the 'thrill' you feel from your heart may be a sign of high potassium ! As this is what it does , it makes your heart race ! I wouldnt just take it that its from your fistula and travelling .

[MooseMom]

I just had my potassium checked, and it is normal.  My heart is not racing.  And it's not like it is beating extra hard.  It just feels like there is more blood travelling through it.  I just don't know how else to explain it.

Monrein, I can understand how even after all this time, being able to feel your fistula is a comfort.

Again, I don't think anything is wrong.  It's just an odd sensation that I didn't expect.  Feeling a thrill in your arm is weird enough, but then when it grows into your arm and then neck and then chest...well, just in time for Halloween because it kinda creeps me out.  I'm not at the "comfort" stage yet.

[texasstyle]

I am amazed when I feel my husband's fistula. That "thrill feels so strong! He says when he has his arm under a pillow with his head on it, he can hear it loudly through the pillow. I can only imagine how pressure goes through that. After all I believe they take an artery & a vein and fuse them together to make a hose! lol. Just a reminder that I'm sure you all know, becare to keep that arm safe. You would certainly not want to get cut there. When we were in the hosp. they used a tag on that arm that said no BP on that arm either. I also understand that you always want to feel that thrill  there. Have a great day everyone!

[Stoday]

You must be a very sensitive person MooseMom. 

[Riki]

I've had my fistula for almost a year now. it was a little slow to develop, and I think it's still developing.  I have a spot near my shoulder that will probably be a good needling spot eventually.  It was tried a few times, but didn't work right.  I had a transonic done today, and the flow was over 2000.  I'm told that's good, but I don't know what it means.. *L*

[Bruno]

Are you still on BP meds? My fistula has moved but it's in my wrist so now it's not even up to mid arm. Have you seen a heart specialist?
I can hear my heart beat through my ear when I lie in my right side at night. It's a bummer, I have to turn over.

[MooseMom]

Yep, I'm still on the same bp meds I've been on since 2004; my bp has been well controlled since then.  I had all sorts of cardiac testing done as part of my pre-transplant evaluation, and I had a consult with a cardiologist who said I was healthy as a horse.  Every time I see the neph, he checks my heart, and no one has ever mentioned any problems.

I really don't think anything is wrong, but like I said, this just feels weird.  Perhaps as was mentioned before, I have really good blood flow.  That would be putting a good spin on things.  I guess I'll get used to this sensation like I've gotten used to so many things.  I just wondered what other people have experienced in this regard.

[sullidog]

I can feel my thrill in my colorbone as well and I have a graft.
Troy

[gothiclovemonkey]

Moosemom, we have quite a bit in common lol
I have a fistula, i got it in 07, its funky looking(see boring side note**), and i also have this thing ner my collar bone. It vibrates and pulsates, i do believe its my fistula, my doctor agrrees and did not seem concerned, so thats a plus....
   Funny story about it... I was going to see a Chiropractor for the very first time, he when to do my vitals, and put his hand on my shoulder neck area.... he looked at me like WTF and proceeded to ask me.... "Maam, are you wearing a stimulation device?" I looked at him like, huh? because my first thought of course is "Did u seriously just asked if im wearing vibrating panties???" But I am seriously hoping that means something else! LOL  I just said, um no... and he kept looking at me strangely...

**And side note :
I had alot(like 19 so far) of proceedures and surgies to fix it, also had mrsa in it, and a few other things, causing it to be very ugly and mishapen and scarred, every new person that sees it in the medical field comments on how ugly this thing is and "should not look like that" BUT it works finally stopped hurting all the time, only occationly now, and i have only been infultrated a handful of times this year, instead of 2/3 sessions, and no cath, id rather have a very ugly thing in me than all that again....

[MooseMom]

LOL@gothic's vibrating panties.

Thanks, everyone, for your replies.  I guess that what I am feeling is not so odd after all, which is what I expected.  I know I should be happy that the thing is working so well (in a pre-dialysis sort of way), and I AM grateful for that, but it's nice to know that others know what I am talking about!

[Riki]

I'm told that it gets bigger with use... so.. uh.. you'll probably have great transonic results. *L*