the fistula arm

[petey]

Okay, something happened today (and it's happened before) and I'm now wondering how all of you with fistulas feel about "the arm" (the one with the fistula in it, of course  ).

Today, Marvin (my husband -- and he's the patient) and I went to my mom and dad's church for Homecoming.  It's about a two-hour drive each way for us, but we get to see Mom and Dad and lots of people (and kin folks) we've known and loved for years.  Marvin wanted to go especially: (1) because he loves my mom and dad and never misses a chance to get "brownie" points with them; and (2) because my mom's 88-year-old cousin (actually, he married Mom's cousin, so he's her cousin-in-law) has been told dialysis is coming soon for him.  Charles goes this week to get his fistula.  For several weeks, Charles has been calling my dad with dialysis questions.  "How does Marvin feel when...?"  "How does Marvin handle...?"  "What happens if...?"  and that sort of thing.  Marvin wanted to go today so he could spend some time talking to Charles and answering his questions.

Marvin and Charles got some time by themselves to talk, and I thought that was good.  Charles is not accepting this dialysis thing very well, but I think talking to Marvin helped him some.  Then, Charles wanted to look at Marvin's fistula to see what it looked like.  Charles was -- to say the least -- a little bit taken back by Marvin's arm.  He seemed surprised that Marvin didn't want to "cover it up."

Marvin has never felt self-conscious about his arm (and his fistula is quite mature and looks like a small snake under the skin).  Marvin doesn't wear long sleeves (unless it's winter and he's cold), and he never tries to "hide" his arm.  He's quite proud of it actually, and we both think it's a beautiful fistula and a beautiful arm.

Yes, Marvin has had quite a few comments over the years about his fistulas (this is not his first).  Kids are inquisitive but never repulsed.  When Marvin explains why his arm looks like it does, most kids want to touch it (which Marvin thinks is wonderful).  They see the "magic" in a fistula.  However, adults are another story.  "What in the world happened to your arm?" some adult will say.  When Marvin explains it, he usually gets an "Oh, my God!" response from adults, and they don't seem as accepting as the kids do.

There was another man (years ago) who had been told he needed to start dialysis.  He put it off and put it off.  Marvin's clinic director asked if he would go and talk to this man (Marvin does this often -- he's kind of like the "welcome wagon" in our area for pre-dialysis patients and he gets calls often to go and talk to someone).  This man took one look at Marvin's arm and was horrified; he later told a mutual friend that he didn't want to start dialysis because he didn't want his arm "messed up" like Marvin's.  This man waited another six months until he was deathly, deathly sick before he started dialysis.  He died a month later.

So, my question is...how do you feel about your fistula arms?

[MIbarra]

At first, I let family and friends see it and feel the thrill or the burr... I forget which one you feel and which one you hear. My partner teacher kept wanting me to show it off every teacher we would run into. She was very interested in the whole thing and the dialysis process. She watched me get sicker and sicker and to see me better I guess was great. Now that it's matured and is larger, my arm has two humps -- kinda like the camel! I always get 3/4 shirts to cover it and don't show it off unless someone asks about it. I completely mortified my brother the first time he asked about it. I said, "Well, I'll show it to you." He screamed, "NO NO, I don't want to see it!" Ha! I made him look anyway and you should have seen the look on his face! That was satisfying.

I know I shouldn't be ashamed and have to cover it up. I should be more rational. It took me months before I'd even feel the thing I'm on my own.

[monrein]

It is my lifeline and as such, the importance of it's function far outweighs the importance of how it looks.  My first fistula was also like a small snake on my left forearm and I was always so happy to feel the thrill and hear the bruit because that meant it was working, the most important thing when you have to dialyze.  I was very protective of my first fistula and am already steadily conscious of the second...mind you that arm is still sore.  I try not to be too self-conscious and I tend to wear half sleeves now, but when my fistula was on the forearm I didn't care who saw it.  I checked it constantly and appreciated how it felt, looked and sounded.  The better the whole thing develops, the easier is is to get those needles in and have a smooth run on dialysis.
You're right Petey about the difference between the reactions of kids and adults to a fistula.

[flip]

I get a few questions like everyone else but I don't try to hide it. I usually keep a pretty good tan and my arms are kind of hairy so it really isn't that noticeable.

[Ang]

couldn't   give  2  hoots  about it  as its  a  part  of  me,ask  all  the  questions  you  like  but  don't  tell  me  to  cover  up  or  you'll  cop   only  time  i'm  concious  is  if  i  go  some  where  with  lots  of  kids.

[Meinuk]

I have a left  up arm fistula, so it is almost always covered to some extent.  When I first had the surgery (4/05) and went home to London (about a month later) the kids  Possum (11), Robert (13) were obsessed with it.  The kids constantly wanted to touch it and feel the "buzzing".  I know that their mother gave them a lecture about leaving my arm alone, but that just heightened their curiosity.  It was a good way to introduce them to dialysis. 

I've since developed an small aneurysm that grosses them out (after all, they are teenagers).  Robert even came up with a nickname for me "Mrs. Throbbing Arm"  that one didn't stick.  (thank goodness) I noticed that when we walk down the street, or when he wants to cuddle, he automatically reaches for my left arm, then he asks if it is ok to hold my arm - he is always so reassured when I say yes.  It is amazing watching children grow up, even though they are teenagers now, and as we all know teenagers know everything... they have moments when they just want to be a child again, just give them a hug and let them know that all is going to be ok.  Throbbing arm and all.

Their acceptance of my fistula paved the way to their acceptance of me being on dialysis.  The most important message that I wanted to impart to them was that this is just a minor annoyance, life goes on.  I didn't want chronic illness to cloud their lives.  They are aware of it, but to them it is just another hurdle to jump, which I think is a healthier outlook than I had at their age, as I watched my mother die from ESRD.

Last August when I was being prepped for surgery, a nurse looked at my arm and asked "What am I looking at?"  I wanted to say that I was a drug addict - but I didn't have the guts, I told her it was a fistula.

I have on occasion used my fistula to freak people out.  If I move my arm just right, my aneurysm looks like a bug crawling under my skin.  When I showed my transplant coordinator, she recoiled and then said "Maybe you shouldn't be doing that."

I feel like my fistula is a much needed, fairly ugly necessity.  I live with it, just like I live with my cottage cheese thighs and the grey hair that I found the other day.  It's my body - I might as well live with it.  (which is a heck of a lot better than the alternative)

[hyperlite]

at first when I saw what a fistula looked like i was a bit worried. But after I got mine it didn't bother me much at all. Mines on my forearm but isn't that big. I still get the odd question but most people don't even notice. I guess because I'm so good looking people are too distracted by my good looks to notice...haha plus chicks dig scars right?

[karen547]

I have to agree with everyone else on this. I don't really enjoy the fact that my arm looks like I am a hardcore druggie/cutter, but hey, I need this to live, and I am not gonna suffer in the heat to make OTHER people feel comfortable, but it's not as if I go around shoving my arm into peoples faces either! Lol.  I guess being 22 I still do get a bit upset by the fistula, but I'm more into living then being vain.

[jbeany]

Mine doesn't look too bad.  I've got a graft, not a fistula, so it doesn't show under the skin much at all.  I can't stand having my lower arm touched from the nerve damage done during the first failed graft attempt.  I do get odd looks from people if I'm in short sleeves.  The scar on my wrist makes me look like I attempted an incompetent suicide.  I figure if it bugs people, that's their problem, not mine, although I do wear longer sleeves if I working at my part-time job - I don't want to scare any potential customers.

[RichardMEL]

I leave it uncovered mostly and don't really give it a second thought. Hey if some jerk walking down the street or at the supermarket thinks I'm a useless druggie - whatever! *I* know what the deal is! And if someone wanted to say something to me I'd just laugh and assure them the drugs are all legal alas

Since you're not supposed to wear tight fitting or heavy stuff over the fistula I feel better having it "free" and it doesn't bother me. I've had the usual questions "Do you have a battery in there?" is my all time favourite! And it's fun when people get freaked out by the thrill... and plus I had a cute dietician student wanna feel me up last week which definitely was a thrill!! (pun intended)

The other week the nurses brought a soon to be patient over to show them my fistula (I think I'm poster child for the unit or something... or maybe because I'm young and can string two sentences together that aren't in Greek they choose me - either way I'm happy to help)... and the woman was looking and freaking out a bit - perhaps thinking "oh my god I have to have something like THAT?" and was asking questions about if it hurt and all that stuff.... I think it's important to share the reality of what we have to deal with and I'd never be shy about that.

[devon]

Funny thing you should bring this up! I had a fistula done in mid-March so its been about a month.  Just last week when I was having my labs run, the technician started to go for my right arm, the one with the fistula.  I stopped her and explained why.  I suggested that she should feel it.  She touched it and recoiled like it was a alien being or something!  I exclaimed, "And you are going to take blood!".

Although I was as composed as I could be, I was really taken aback.  For a medical-type person to react this way was shocking and, frankly, disappointing.  I certain forgive her.  But, it makes me more self-conscious now.  I was prepared for non-medical people to react in some unexpected manner but not for this. 

I guess I will be more careful now about how and with whom I share my little "secret".

-Devon

PS Hope y'all are well and happy! I'm having a partucularly good day today because I got lots of rest over the weekend.  Mondays are, ironically, my "best days"!

[willieandwinnie]

Len's left arm looks like a road map and is also larger then his right. He had a failed fistula in the lower forearm and finally had graph put in upper arm (starts under his arm) and goes to elbow where it attaches to vein. He doesn't try to cover it up and nobody has ever said anything about it. Len is like jbeany and doesn't want anyone touching his lower arm because the nerves just go nuts. I am very protective of his left arm and when he was in the local hopsital this last time I wrapped some red gauze around it so nobody would use it, (but everyone asked why not) our GP thought that was cleaver of me.

[petey]

w&w -- Marvin and I are very protective of his left arm, too (the one with his working fistula).  In this arm, he has the fistula that's working now (forearm), and an old fistula (wrist area, clotted off after transplant), and a failed graft site in the upper arm.  Every time he goes to the hospital, I take a red, permanent marker and write in big letters "NO STICKS OR BP IN THIS ARM" right smack dab on his arm!  Even though it's in his chart not to use this arm, some medical people don't read that -- but they can't miss my message.  Unfortunately, his right upper arm looks pretty wicked, too -- three failed grafts there.  However, that's the arm we use for BP and IV sticks.

[Yvonne]

Hi  John had his fistula fitted on the 11th April, went in as a day pateint. Had the op. at 10.30 in the morning and wanting to go home 10 minutes after coming back to his bed.  So we were just given a booklet about it no one told us about the Buz.
Reading the different stories about fistulars does that mean he may never beable to give blood samples from that arm again? What else may he not do with it?

[devon]

Great idea about the red tape! 

The last time I was in the endo clinic, I kept telling everyone the right arm was protected.  It ocurred to me that if I was unconscious, I might not be able to do that.  So I am considering getting a medical alert jewlery item such as dog tags to indicate this.  I tried a metal bracelet but it's irritating and gets tangled with things in my pocket.

I'm thinking perhaps a red rubber braclet like those the kids wear but imprinted with "PROTECTED - fistula/graph" and hope the medical staff doesn't take it for a political or religious statement.  Cheap but doesn't get tangled.

-Devon

[Ambo]

In the beginning, the docs inserted the fistula and it "buzzed" for about a day then was silent and still remain silent.  After getting it checked out by the doc I had to go for a special test, which I can't remember what it was called?  Where they inserted dye into my veins to check out the scene.  It turned out that my veins are too small for a fistula to be a success.  Needless to say, I still have it and they can't remove it.  So I'm stuck with a "dead" arm.  I'm unable to have bloodwork or blood pressures taken from it nor any finger pokes for my glucose testing so this leaves my other arm pretty sore from being poked all the time.  I had recently had a stay in the hospital where I needed bloodwork done a couple times a day, by the end of the week my poor arm was so sore!  I was pretty puffy too, which didn't help the situation at all, ugh!  At any rate, if I were back on hemo I'd have to have a central line which is a killer to have inserted!  I am so grateful PD is a success for me.  I still have a tube sticking out of me but that tube has become an accepted part of me although it would be nice to have just a fistula, alas you deal with what you've got right?

[petey]

Hi, John's wife -- Here's what we've been told with every fistula and/or graft Marvin has had (and he's had several of them)....no BP's in that arm; no sticks in that arm (for blood or IV); no tourniquets in that arm; no lifting over five pounds with that arm; watch the arm and the access for signs of infection (redness, hot to the touch, swelling); wash it often, often, often with antibacterial soap; feel it several times a day (which Marvin does about 100 times a day) for the "thrill" -- or the "buzz" as some people call it -- and listen to it (with a stethescope) several times a day for the bruit; be extra careful to protect that arm from bumps and scratches; and no tight clothes on that arm.

Basically, we were told to guard it with our lives because Marvin's life depended on it.  Now that we're on home hemo, NO ONE is allowed to stick his fistula (we use buttonholes) except me.  Even when he was in the hospital for 42 days and then had to go back on in-center hemo for a short while (six weeks), I went with him to every treatment and cannulated the fistula and pulled the needles.  Marvin and I do exactly what the doctors tell us to do (and sometimes, we go a little over-board with it, too).

To date, Marvin has had 14 perm caths (in the clavicle), 5 grafts, and two fistulas.  We're trying so hard to make his current fistula last as long as we can (until he gets his second transplant  ); so far, it's three years old and has lasted longer than any other access he's had.  Why has he had so many accesses?  Well, first of all, he's been on dialysis since 1995.  The perm caths are considered "temporary" -- even though he did keep one for 18 months at the very beginning of his dialysis journey.  The other perm caths lasted anywhere from between 2 weeks to a year before they clotted off or before he got a more-permanent graft or fistula.  His first fistula was great, but about six months after he got his transplant, this one clotted off.  The 5 grafts are a different story -- he had so many of them fail because the stupid ass nurses at his in-center clinic kept infiltrating and poking through them.  The last one only lasted two weeks -- and when the surgeon put the dye in it to check it out, he said it looked like a colander because it had so many holes in it where the nurses had infiltrated, restuck, infiltrated, restuck, etc. -- after only two weeks.  Damn!     That's why we love home hemo!!!!

[KR Cincy]

I have a love/hate relationship with my arm. I love that it's now my lifeline, but hate the restrictions I have on what I can do with and to it. The scar from the surgery is inconsequential, but the stick marks up and down do look a little "druggie". I'll probably do mostly long sleeve shirts for work (there's AC so it's not bad) but some folks this summer at the ballpark or outdoor concerts will just have to deal with it!

[terry3004]

I have had my fistula since September 2007.  It is in my upper left arm...no problems (knock on wood).

I live in Florida, so it's nothing but short sleeves for me, except for maybe 2 days a year.  My fistula doesn't bother me, and I will show it to anyone who asks.  About a month ago, I was at Aquatica (Sea World's water park) for their grand opening and I was shirtless for the entire day.  I have well formed buttonholes, and that part of my arm is shaven, so everyone would have been able to see my fistula quite easily.  I didn't notice any weird looks, and nobody asked if I was on drugs (or if I could share  ).

Basically, it is a part of my life, and I deal with it.  If anyone has a problem with it, oh well...I need it to live and I don't plan on hiding it just because someone might be uncomfortable about it.

If you have a fistula, take good care of it.  I was told no bp or blood draws in my left arm.  I was told no lifting while it was healing, but once it healed that restriction was lifted.  I am a lefty and my surgeon was surprised when I told him that I wanted it in my left arm, however I bowl with my right arm.  I told my surgeon it would be easier to learn how to eat right handed (I dialyize during dinner) than it would be to learn how to bowl lefty.