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Author Topic: what comments have you gotten on your access?  (Read 4173 times)
sullidog
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« on: February 07, 2010, 04:58:05 PM »

what comments if any have you gotten on your fistula/graft in the spring/summer when waring a t-shirt? For me no one really has commented, accept a nurse once at the indoskaphy center asked me what was that thing implanted in my arm. Of course I just had my access put in in the fall so that's when t-shirt weather was winding down.
Troy
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
cdwbrooklyn
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« Reply #1 on: February 07, 2010, 05:45:15 PM »

I had my fistula for 10 years now and the most comments I received was, "What wrong with your arm?" I responded that I had an operation and that was the outcome.  However, most of the times, people just stare but don't really comment.   I'm to the point where I really don't care anymore.  When people stare at it I just pretend I don't really see them.  However, they always turn their head when I catch them watching.    ;D
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Dailysis patient for since 1999 and still kicking it strong.  I was called for a transplant but could not get it due to damage veins from extremely high blood pressure.  Have it under control now, on NxStage System but will receive dailysis for the rest of my life.  Does life sucks because of this.  ABOLUTELY NOT!  Life is what you make it good, bad, sick, or healthy.  Praise God I'm still functioning as a normal person just have to take extra steps.
kitkatz
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« Reply #2 on: February 07, 2010, 06:59:45 PM »

When the kids at school ask I just tell them I had surgery on my arm. It usually shuts them up.
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« Reply #3 on: February 07, 2010, 10:05:09 PM »

"Oh my god! What did you do to your arm?"
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fc2821
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« Reply #4 on: February 08, 2010, 08:31:56 AM »

    Female relative upon accidently touching my fistula, "Does it hurt?"   Answer, "Only when I laugh."     :rofl; :rofl; :rofl;
« Last Edit: February 08, 2010, 08:33:06 AM by fc2821 » Logged

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This will be me...... Next spring.... I earned it.

« Reply #5 on: February 08, 2010, 08:39:40 AM »

   my Daughter told me that she thought that my buttonholes looked like a vampire bit me.......   

     thank you Sara
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
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  Hello from the Oregon Coast.....

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kellyt
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« Reply #6 on: February 08, 2010, 09:39:08 AM »

I told my nephew I had a bee in my arm.  He thought that was super cool.  When the buzz stopped after transplant he was disappointed.

I don't go sleeveless, as I have big arms and the my fistula scar is really large and ugly (he did a horrible job with the closure).  My vein never got large and I fortunately never had to do dialysis, so for me the scar is just a story to tell....with a really good ending.   :2thumbsup;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Bub
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« Reply #7 on: February 08, 2010, 10:54:10 AM »

At work I was letting people put their finger on my fistula and feel the "buzz".  One lady ask me to stop and said that has personal and disgusting.  I replied that it was only my blood coursing through my veins and it meant that I was indeed alive.
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staceyand joe92
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« Reply #8 on: February 08, 2010, 11:53:57 AM »

Since my transplant two months ago I have had people ask me "when are you going to have that ugly thing in your arm removed?"
My fistula has a few bumpy/lumpy places on it from infiltrations. It doesn't bother me usually. I don't even think about it until someone makes a comment. 
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fc2821
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« Reply #9 on: February 08, 2010, 12:18:12 PM »

      Told this before, but it is worth repeating.  My wife is afriad of my fistula.  When she touches it, it is in my upper left arm, she says it is "creepy".   :rofl; :rofl; :rofl; :rofl; :rofl;
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In center hemo dialysis since Feb 14, 2007. 

If I could type properly, I'd be dangerous!

You may be only one person in the universe but you may mean the the universe to someone else.
sullidog
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« Reply #10 on: February 08, 2010, 04:27:37 PM »

I told my family I had a kittie cat in there (talking about the thrill)
Troy
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
jbeany
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« Reply #11 on: February 08, 2010, 04:53:25 PM »

Well, my cat has offered her opinion now that mine has stopped - she's not happy that I don't purr any more!

I have gotten a few "Omigod, what happened to your arm?" comments.  Same with my neck from the para surgery.  That one looks like someone tried to slash my throat.  I usually just shrug and say, "My doctor did it to me."  I have told a few gullible people that the fistula scar is a "freshwater shark bite".  That's always fun . . . . >:D
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dwcrawford
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« Reply #12 on: February 09, 2010, 05:20:08 AM »

I am not understanding comments about the fistula.  I have a little bump the size of a BB at the bend of my arm (opposite the elbow).  You can't actually see the line other than where some really bad needles were inserted.  And then they look like maybe a freckle or a skin mole or something.  Did I miss something?  Granted I require a more trained nurse to insert the needles, but that's the center's concern, right?  Not mine?  Am I odd? (That's rhetorical.  Please don't answer.)  Once I thought it was going to bulge and give the appearance of a muscle.  At that time I wanted one in the other arm too, but alas -- doesn't look like a muscle.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
fc2821
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« Reply #13 on: February 09, 2010, 10:08:00 AM »

I am not understanding comments about the fistula.  I have a little bump the size of a BB at the bend of my arm (opposite the elbow).  You can't actually see the line other than where some really bad needles were inserted.  And then they look like maybe a freckle or a skin mole or something.  Did I miss something?  Granted I require a more trained nurse to insert the needles, but that's the center's concern, right?  Not mine?  Am I odd? (That's rhetorical.  Please don't answer.)  Once I thought it was going to bulge and give the appearance of a muscle.  At that time I wanted one in the other arm too, but alas -- doesn't look like a muscle.

   You and I are lucky Dan, some people's ( sorry folk don't mean to rude) look awful.  Depends on how much trouble they had putting it "in" and how it has been "used" and "accessed". From what I've been able to tell in my limited experience during the past three years, different people's look different.  In other words, not everyone's looks like everyone elses.  Of course, I could be wrong. 
   
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In center hemo dialysis since Feb 14, 2007. 

If I could type properly, I'd be dangerous!

You may be only one person in the universe but you may mean the the universe to someone else.
kellyt
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« Reply #14 on: February 09, 2010, 05:11:35 PM »

My vein never bulged, but was told it probably would have had I started dialysis.  My scar is so bad that I don't know what my arm would have looked like with a bulging vein, not to mention the needle marks and all.   :puke;
I'll try to find, or I'll take, a photo of my arm/scar.   I posted a photo back in Feb 2009 when I fell and cut my arm near the fistula - I'll try to find that one again.  With all the bruising I'm not sure you can see the fistula surgery scar or not.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
Meinuk
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« Reply #15 on: February 09, 2010, 05:29:06 PM »

My fistula is up arm and pretty ugly (I have an aneurysm) That being said, I don't hide it, it comes with the package, and when the kids freak out, I remind them that this bulge saved my life.  Most of the time it is like show and tell, (the kids will just come up and touch it, and then look at their friends like they have a secret.)  Patrick (who is 2 call is my Fistularrrr), Robbie when he was younger called me "Mrs. Throbbing Arm" - I am neither a Mrs. or does my fistula throb (it does have a good bruit though!), but hey, he was 14 when this all stared.

I've gone on dates, the fistula has never been an issue - even in the more "private" moments.

My advice, wear a t-shirt with pride.  You are alive. Every day is a bonus.  At some point, vanity has to take a back seat (and I type this as a single woman looking for love...)

But don't think that I haven't lifted my sleeve for sympathy points - it just depends on the situation.   ;D

I'll never forget the first IHD meet up in Vegas.  Paris and her daughter had come to visit me, and I showed Beth my fistula.  It may be ugly, but you know, it is so much better than the alternative.

Now that I have had a transplant, the scars are there, my buttonholes have closed, unless my surgeon has a fit (he wants to tie it off ASAP) I'm gonna keep it.  It is my insurance policy.  If this kidney fails, It'll be one less surgery.  Yeah, I am superstitious.
« Last Edit: February 09, 2010, 05:32:50 PM by Meinuk » Logged

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52 with PKD
deceased donor transplant 11/2/08
nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

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« Reply #16 on: February 09, 2010, 06:00:35 PM »

"Why would they do that to you"?

                 :waiting;
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RichardMEL
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« Reply #17 on: February 09, 2010, 10:26:44 PM »

Yep I've mentioned this before but onetime someone asked me if I had batteries in there and if they set the airport detectors off  :rofl; Another time I was in a fast food place (shhh don't tell the dietician) and a guy next to me just out and out said "Mate  what happened to your arm?"  :rofl;

One time after I left D with my fistula taped up over the access sites and went to the supermarket the check out chick asked me if I was OK and needed any help. I looked to my arm thinking "shit is it bleeding?!" but it was dry. lol.

Yes, lots of people stare and probably think I'm a drug user.. I don't care.. that's their probkem.

Dan - you're indeed lucky. Mine (lower arm) is quite large in spots and sticks out (specially with good looking young ladies are around!  :rofl;)

Also my cat loves my fistula she often lies with her head against the fistula snuggling against the "purr" - it's gorgeous :)
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
glitter
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« Reply #18 on: February 10, 2010, 09:24:25 AM »

I think they are beautiful- i saw a man in the store last week and he had a huge one- all I could think was that I hoped it worked really well for him, and how awesome it was!  I say wear your T-shirt with pride- your access is glorious! ( And if some thought it was less so- they are a DGI- a dont get it, and they dont matter)
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cariad
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« Reply #19 on: February 10, 2010, 09:52:20 AM »

I think they are beautiful- i saw a man in the store last week and he had a huge one- all I could think was that I hoped it worked really well for him, and how awesome it was!  I say wear your T-shirt with pride- your access is glorious! ( And if some thought it was less so- they are a DGI- a dont get it, and they dont matter)

That is such a nice outlook, Glitter. Thanks!

I just have scars, very faint, on both wrists from my old accesses. I have had people ask what happened, and even speculate that I tried to kill myself. I think it is that suicide suspicion that keeps people quiet, actually. Now the only comments I get are from doctors that are some variation of "Holy heck! You had a Scribner shunt!" My nephrologist in Long Beach had never seen one before (maybe he was too young, or maybe it was because he got his degree in his home country). I explained to him that I used to have a tube of blood that came out one side of my wrist, arched over the radial side, and went back under the skin. He couldn't get over that the tube of blood was exposed. I suppose it was pretty dangerous. I can remember being told that if it ever started leaking, to tell my parents immediately, and torturing my mother with clarification questions like "Even if you're on the phone? Even if you're asleep? Even if you're in the shower?"  :rofl;
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RichardMEL
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« Reply #20 on: February 10, 2010, 04:14:09 PM »

Well Glitter you are in a minority in that you know what it is and what it means for the guy you saw(ie: his lifeline). Vast majority of the public wouldn't have a clue and will form their own opinions.

It's funny but I kind of hang out to see one "in the wild"(as it were) - it would make me feel more normal! LOL
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
sullidog
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« Reply #21 on: February 10, 2010, 04:57:20 PM »

That's what I'll do, show my pride! Plus I'm blind myself so I don't really care what it looks like, to me it feels like a line underneath the skin.
Troy
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
Stacy Without An E
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« Reply #22 on: February 11, 2010, 01:01:55 PM »

Top 5 Responses When People See My Fistula:

5) Did you get bitten by a shark?

4) Dude, you should get a doctor to take a look at that.

3) Ooh, gross.  We're never going out again.  Ever.  Never.  Ever.

2) I would get that thing drained before it pops.

1) You crank too?  Can you score me some?
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

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jbeany
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« Reply #23 on: February 11, 2010, 02:48:46 PM »



I just have scars, very faint, on both wrists from my old accesses. I have had people ask what happened, and even speculate that I tried to kill myself. I think it is that suicide suspicion that keeps people quiet, actually.

I've got one there, too.    It's along the length of my wrist, but off to the left side.  Love the bulging eyeballs that go with that.  (Right, so I'm smart enough to cut length wise instead of across, but not smart enough to do it at the center where the majority of the veins are?)  You're right, though - they all stare, but no one ever comments on that!  Mine is pretty faded now, but when it was fresh and still bright red, I got stared at a lot in the check out lane at the store.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

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