Dialysis access and body image

[okarol]

Of course a fistula or PD catheter or tunnel catheter are lifelines for dialysis access, but how do they affect your body image? What was your first reaction when you had your access surgery? How do you feel about it now, in private and in public? Are you self conscious or are you comfortable and hardly notice it's there? Has anyone you know (or a stranger) ever mentioned it?

[cattlekid]

I hated the look of traditional fistulas and fought the fistula surgery for months.  I had a tunneled catheter and kept that while my live donors were being tested.  The catheter didn't bother me much except for the inability to swim all summer of 2011.  I gave in and had my fistula surgery a year ago because I knew that I was going to start home hemo with buttonholes and that I wouldn't have any random yahoo in the center sticking me. 

Now a year later, I love my buttonholes.  No one has ever said anything to me about them and I don't bother covering them in public.   The biggest complaint that I have is that they used surgical glue on me instead of sutures and my scars (four of them!) look like I was cut into by a drunk monkey. 

I can guarantee you that if I couldn't have done buttonholes with self-cannulation, I'd still be using a tunneled cath. 

[MaryD]

When I first saw my PD catheter I thought "Yuk!" and "What have I done?"  But now I think getting the catheter was a little like getting glasses.  I thought I would never get used to either of them, but within four weeks I didn't even notice either of them.

Now, the catheter is just another part of me.  I don't swim, and never usually did.  It doesn't show under my clothes.  I am quite happy to show anyone who is interested.  The only negative as far as image goes is my inability to answer the door elegantly while I'm hooked up.  I'm always a little concerned that I'm going to shock whoever is there.

[Sue]

My fistula is in my wrist, I am a little self- conscious about it I have to admit. A woman that I work with noticed it last week and said "eww is that that thing you had done to your wrist, why don't you keep it covered " ? I replied saying " One day it will be my lifeline, I'm sorry you find it offensive "  but to be honest I felt uncomfortable about it all day! Fact is fistulas are not pretty, I guess we just get used to them.

[MommyChick]

I have a fistula in my upper left arm.
When I first started dialysis I had a catheter in the chest. That only lasted a year before I had 2 nasty infections that made me hospitalized & very sick! That is when they put the fistula in my arm. The first year or two I didn't mind it b/c other then the scar from surgery it was nothing. Over the years my fistula built up & got uglier & made me very self conscious. Now 7 yrs later I still hate it but its my life line & at least now were in Fall so with the cooler weather comes long sleeves, haha 

I have heard you can get the fistulas removed over the years once you have a kidney that is working?? Has anyone else ever heard of that or known someone who has done that?
 

[Leanne]

When I started it was kind of sudden so I had a chest cath for hemo and then my PD cath was put in soon after.  I hated that the patch over my chest cath was visible.  I was stared at in public as well.  I had wanted to do PD thinking it would make for more normalcy for my son and my family.  But, from day one it made me very self concious and I lost most of my self esteem as an attractive young woman.  To me it was constant reminder of my now "patient" status.  I felt very ugly and really hated it.  Tubes hanging out of my chest and my stomach.  My husband was a sweetheart however.  He never once made me feel like he saw me any different.  To him I was as pretty as ever and he thinks I am the toughest person he knows, respects how I handle everything.  He would even just joke and say...."So you have a few new accessories?  You are beautiful and nothing changes that."  So, any problems were with my own interpretation.  But when PD didnt work?  I was so glad to get rid of that thing.  Now my chest cath is gone too. YAY!

My fistula is in my left upper arm and I have ascar in my wrist from a fistula that did not work.  Mostly my fistula doesnt bother me.  People in stores have whispered about the wrist scar thinking I done it trying to commit suicide.  I ignored them.  And sometimes I will hear whispers in public because all the needle marks make them wonder if Im an IV drug user.  It bothers me some but its usually people I dont know in a store somewhere.  Sometimes I will correct them.  Mostly I have learned to not let it bother me.  No tubes mean I can take awesome showers now and go swimming so I dont mind my fistula nearly as much. 

[ChrisEtc]

I have an upper arm fistula.  Never even thought about how it looks.  It's probably different for guys, I just don't really care what anyone thinks about it.  If anyone asks I just tell them and that's usually the end of it.  I actually get a lot more questions when I still have my bandage on after dialysis.

[Rain]

I tired everything to not get a fistula.  Button holes are not a practice here so I new it would get bigger and uglier.  I keep it covered most days and honesltly I am so use to it I don't see what other people see, but have had people look disgusted.  But it's my life line.  When  I first got it at 24 I was very self conscious but now who cares.  You get use to it, it's like glasses...

[MightyMike]

I have an upper right arm av fistula with buttonHoles.  I can tell you I'm not self conscious about it.  If someone does not like the way it looks I just say tuff s**t.  This is my lifeline and I have nothing to be ashamed off.  I have no regrets on choosinig to have it over other accesses.  I hope that it just last a long time i

[Lillupie]

I have a fistula in my upper left arm.
When I first started dialysis I had a catheter in the chest. That only lasted a year before I had 2 nasty infections that made me hospitalized & very sick! That is when they put the fistula in my arm. The first year or two I didn't mind it b/c other then the scar from surgery it was nothing. Over the years my fistula built up & got uglier & made me very self conscious. Now 7 yrs later I still hate it but its my life line & at least now were in Fall so with the cooler weather comes long sleeves, haha 

I have heard you can get the fistulas removed over the years once you have a kidney that is working?? Has anyone else ever heard of that or known someone who has done that?
 

Yes, I have heard they can do something to tie it off once you have a working transplant. My doctor said they can somehow tie it off.

For me, my PD cath is not that big of a deal.  I am soo, soo vain about my looks and always have its not even funny. Im flat chested, so Im stuck with a padded bra, shortest person there is, darker then most people, feel like im trapped in a 10 year olds body, for me, on top of having very bad stretch marks on my thighs and under arms. i dont care for an added fistula. I know very shallow of me. But I couldnt handle the fistula. I saw them when I went in for hemo, and thought "there is no way Im getting that". I have seen some people it really doesnt look that bad

[KatieV]

I have heard you can get the fistulas removed over the years once you have a kidney that is working?? Has anyone else ever heard of that or known someone who has done that?

My brother had his fistula removed.  Normally, they can tie them off at both ends, but his was so big they completely removed it along with a 2 x 10 inch strip of arm skin!  I have to admit, his fistula was the reason I didn't want a fistula.  It was huge, ugly, and the thrill freaked me out.  (He once stuck it up against my foot arch and made me jump!)

I was self conscious about my fistula when I first got it.  I mostly wore 3/4 length sleeves (the incision is at my elbow).  Now I don't care.  I have enough to worry about without worrying what people think of my fistula.  Now, I might still care if it was as big as my brother's was, but mine has stayed pretty tight to my arm.

[Joe]

When I first saw my PD catheter I thought "Yuk!" and "What have I done?"  But now I think getting the catheter was a little like getting glasses.  I thought I would never get used to either of them, but within four weeks I didn't even notice either of them.

Now, the catheter is just another part of me.  I don't swim, and never usually did.  It doesn't show under my clothes.  I am quite happy to show anyone who is interested.  The only negative as far as image goes is my inability to answer the door elegantly while I'm hooked up.  I'm always a little concerned that I'm going to shock whoever is there.

I'm pretty much with MaryD; the big difference is that I like to swim and now I can't. Once I get my transplant, I'm looking forward to being able to go into the pool again. For my day to day routines, I don't even notice that it's there. I do have the issue with being able to answer the door if I'm connected to either my drain bag or doing my manual fill. But that's just kind of how it is.

[cdwbrooklyn]

When I first received my fistula it looked okay.  It was not as big as it is now.  After 7 years, it started to become noticeable and my friends would tell me that it’s getting bigger.  When people started asking me what’s that on your arm, I became very self conscious to the point if another person asked me what’s that on my arm, I will literally curse him or her out. However, I’ve bought shirt that covered my arm even if it was 100 degrees outside.
 
After hearing from my family and friends that your arm is a part of you and your lifeline, forget about what people say just live your life, I started to feel better and cared less about who sees my fistula.  Also, after looking at a lot of people with tattoos all over their body, especially, their arms, my fistula started to look good to me.  Occasionally, I get a little self conscious but always tell myself if people can put tattoos all over their arms and walk the street with a smile, why can’t I show my fistula and walk with a smile.  Nowadays, if a person as me what’s that on your arm, I say it’s my tattoos.
 
Nevetheless, my godchildren get a kick out of the thrill.  They always touch my arm and laugh.  They love it.   

[noahvale]

*

[Poppylicious]

Blokey has no issues with his fistula; he rarely has it covered, nobody (stranger or otherwise) has ever commented on it and (particularly now he doesn't need to use it) he doesn't really notice it.  I do though ... it can be really loud sometimes when we're cosily tucked up in bed.  The only time anybody has ever drawn attention to it in public is when the daughter of a friend of mine (aged nine, born with non-working kidneys and a plethora of other medical conditions) wanted to compare 'thrills' because her fistula was brand new and maturing.  He did only use his for about a year though so it's not terribly pronounced or big, although it is noticeable.

[Big E]

I have an upper arm fistula, and it looks like someone stuck two big grapes under my skin.  I'm not bothered at all by the way it looks, although I tend to be self-conscious generally. No one's ever said anything nasty to me about it, and if they did I would kick their 

Sue, you should tell your mean co-worker that you'll cover your wrist if she'll put a bag over her head...

[Sue]

Big E I am sitting here really laughing   I will file that away or future use !

[lmunchkin]

It really doesnt bother John what people think.  His rope is in his wrist up to near his elbow.  Once I took him in to my place of employment cause they hadnt seen him in awhile.  I noticed one girl "heave" when she saw it.  Me like a dummy, I was not thinking anything about it.  But when we left, I told him that he might ought to cover it up cause some people just have no clue to the life is sustains.
We laughed our asses off when we left. Seeing her "heaving" was so funny!

God Bless,
lmunchkin

P.S.  And yes Lillupie is short, very short, but she is beautiful inside & out!  Love ya Lisa!

[Lillupie]

P.S.  And yes Lillupie is short, very short, but she is beautiful inside & out!  Love ya Lisa!
[/quote]

yes i am very petite, or tiny, which is a big reason why i struggle with the dies, because i dont eat as it is, never have and guess never will

[amanda100wilson]

I have an upper arm fistula and I am self-conscious about it.  if I am wearing something  where,it can be seen I tend to try to keep my arm down by my side.  usually I try to buy elbow-length sleeve t-shirts which largely hide it.

[billyM]

i LOVE my fistula . it keeps me alive and its no end of amusement. if i cant hear the whooosh , then am dead lol

i have a very prominent venus thrill , so strong , and i have a son who asked a young girl working in the local shop ,

 " do you wanna feel my dads throbbing vein " ?

AHEM !!!!!!!!!!

yes my shithead son is a bigger problem than my fistula 

[TramFan31]

My fistula has been use less than two months now.  I'm considering purchasing tennis armbands to hide it, but I haven't yet.

Only a couple of times strangers have commented on my band-aids the day after dialysis.  No big deal.