Dialysis, fistulas and body image

Mona bit-fallI am a bit late with this post because Julie and I went to Hobart in Tasmania to visit the Museum of Old and New Art – MONA this weekend (a joint birthday present from our kids).  We left straight after Saturday dialysis and came back Sunday night.  It was a real treat.  We stayed in the city at the Old Woolstore Hotel, which was very nice – each room is an apartment, with cooking and cleaning facilities (none of which we used, because we were on a break!).

It was a ten minute walk along the waterfront (dawdling, looking at fishing boats and tall ships and buying a fried fish snack from one of the houseboats tied up to a jetty – it was as good as it smelt) to get to the ferry that takes you to MONA, 30 minutes up the river.

MONA is a private museum built by David Walsh, a professional gambler who won big time.  The artworks he has collected make it probably the most quirky museum anywhere: three floors of amazing and confronting art from around the world, including a striking variety of people, both real and imagined.  Some were attractive, some sexy, some very ugly and some dismembered into pieces hanging from trees.  Thinking about it, sex and death get a good run among the multitude of historical and whimsical installations.

But for me, it underlined the multiplicity of shapes, sizes, types and visual personalities that make us who we are: short people and six footers, thin and fat, bushy and shorn, pierced and tattooed, underdressed and overdressed, young, and old, healthy and sick, eccentric and ordinary.  That’s why people-watching is such a delightful (and cost-efficient) pastime.  Sitting at a coffee bar, looking out the window is one of life’s quiet pleasures.  Without fail there is always someone walking by who seems to be a caricature of a real person; someone who has stepped straight from a Tintin comic, or Oliver Twist.  Everyone has a story.

Sometimes we need only check out the mirror.  Especially us BigD-ers.  Apart from the original features we have come to know and love (or ignore), there are the new ones provided by medical science.

The most obvious, especially after a few years, is our fistula.  Mine has been with me since 1994.  I well remember the day it was made.  Or more exactly the day I came home with my arm bandaged.  I sat in our sofa and laid my arm outstretched along the back of the seat.  Then I heard the thrill for the first time: the echoing boom-boom-boom of my heartbeat, sounding like someone’s earphones turned up too loud.  I was flooded with emotion. I realised that it was really there and my arm and I would never be the same.  My body was no longer the one I had been born with.  Tears came to my eyes and I stared at the floor for a few minutes.

I won’t say I got over it quickly, but it has eventually become a new way of making me unique.  It has grown into quite a snake on my arm.  It looks pretty ugly, and to anyone who doesn’t know what it is, very weird.  But not to my 3-year old grandson, who regularly pushes back my sleeve and gently rests his hand on it.  He feels the beat, gives me an “All OK” look and moves on.  Situation normal.

But I am still a little wary of flashing it in public.  Short sleeved shirts? I own exactly none.  I have a fair collection of long-sleeved T-shirts and shirts I wear in summer.

When I began at the gym I wore long-sleeved tops when everyone else was in singlet or T-shirt.  I don’t think people took much notice, but I felt the odd man out.  So one day I just wore a T-shirt.  I don’t know for sure, but I think most people don’t notice.  And if they do, they don’t show it (you know how cool people are at the gym: it’s an “all about me” place).  So the gym is the one place that my fistula gets an outing.

Of course, there are other dialysis modifications.  Peritoneal dialysis (PD) is done via a permanent tube extending from your solar plexus.  Not something most people want to show in public.  My nephrologist showed me pictures when we discussed the choice of options, years ago.  I know it is more convenient, but I wasn’t keen.  I am sure body image was a part of the decision.

If you are a PD user, how do you feel about it?

There are lots of other body changes that we kidney people face over time.  Some I have are: the Michelin Man look and rice paper-thin skin from the transplant drugs (now gone with the kidney); the pencil-thin necklace scar across my throat from the parathyroid gland removal; two chunky transplant scars (left and right) across my lower abdomen; the scar on my left side at the back, and missing rib where my diseased kidney was removed.

We all have a mental image of our body, and we usually don’t like to mess with it too much.  But few of us have the same ones we were born with.  They reflect our history, good and bad.  My body is me and I am my body.  Live with it.

Perhaps that the point MONA is making.

9 thoughts on “Dialysis, fistulas and body image

  1. Hi Greg. I just wanted to pop in and say a quick hello and a big thank you for your blog posts. I help with support group/s for people living with lupus and I find your blogs particularly inspiring. I have passed on your link a few times. Once again, you have touched on a topic that is a very sensitive and emotional one for people living with a chronic illness or disease. Body image is a huge topic for our younger members who are often around their mid-20s when diagnosed. All of a sudden it feels like they have no control over their bodies or the way they look and can be very depressing. Blogs like yours help us to put our own illnesses and the effects of those into perspective. Thank you.

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  2. I had my first fistula created when I was 15. It was ugly. It looked like it was the work of a knife wielding maniac. In the summer I opted for T-shirts, but it wasn’t long before folks were nudging each other in cafes. I didn’t really care or mind. I then went on to PD and must admit that I hated the catheter – it was like I had become a monster. Bloated from the fluid, ill from the kidney disease; I looked a tragic case. It was of me but it wasn’t me. Today 30 years on, I am back on Haemodialysis with yet another fistula and a black arm. Bumped needles have left my arm a mess. Folks stare, and I take pleasure in the thought that they must see me as some crazed drug user chasing ‘highs’, instead of the physical wreck of a normal person I am once again becoming. But really, who cares what people think…

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  3. I never usually read blogs about dialysis but this caught my eye. I have a blockage near my jugular due to repeated permacath insertions plus a large,bumpy, beast of a fistula on my left arm. My right side from my neck down to my arm and hand is much larger than the other side. I never hid my permacath and now I don’t hide my “Hulk Arm”, as I call it. My only problem with it is that I have “Steal Syndrome” (blood flow stolen from the hand) so I’ve lost a lot of function from it and it cramps from repetitive movement. My hand is also cold and a much darker colour (often goes blue) I call it my “Cold Dead Hand” and make jokes about it a lot. I wear strapless dresses and tops , t-shirts – anything I feel like. This is just my experience and I totally understand people feeling differently. I have always thought scars are sexy and now I’m here to say that fistulas are sexy too-without mine I would be dead.

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  4. I was very concerned about how my fistula would look but was pleasantly surprised after the op to find it was quite inconspicuous. Two years on it has still not been used for dialysis yet but I have a thick vein extending up my arm and have had some unpleasant comments when wearing short sleeved blouses. I tend to keep it covered at work (I teach young children) but on the occasions when any of the children have noticed the boys have been impressed, especially if allowed to feel the buzz, they call it my robotic arm.
    I am more conscious of my ridged and damaged nails, a result of over 30 years of kidney disease. ah well it will soon be winter and I can wear fancy gloves!

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  5. Hi there, I have been on dialysis since January of 2011 so I’ve been at it for almost 3 years now. Right now my fistula is pumping good and healthy and is almost unoticable. The fistula is in my right arm just about an inch from my wrist, the scars from being stuck each week is normal obviously, wondering if I need to get a buttonhole soon. Anyway, my biggest concern for me is hearing that eventually that my arm will become a snake like most I’ve seen. I’m very conscious of keeping my arm clean and haven’t had any complications so far, no bruising at all. My needle scars heal pretty fast, but is there a way to keep my skin from becoming so tough, and can I at least slow down the size of what my arm may become. I’m still not at that point where I can accept what is to come in the future, but I think I’m pretty healthy due to the circumstances. I will have to get my parathyroids taken care of in Jan. after the holidays. Is that an outpatient proceedure?

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    • Hi Darriel. All fistulas grow big over time, but it takes a few years. Buttonholing tends to slow the growth process because you use the same hole (each puncture tends to expand the fistula a small amount). Hand cream will keep the skin soft, but underneath the fistula vein toughens up naturally with scar tissue from each insertion (making it progressively harder to put the needles in). If I remember correctly, the parathyroid surgery involves an overnight stay. Regards, Greg

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