Living with CKD

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Name My Fistula

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I did a lot of sleeping this weekend. Sometimes it seems like I can't sleep enough... or maybe I'm just lazy ;) No major issues this weekend... My arm was hurting pretty bad on Friday but seems to be back to normal now. I should take some pictures of my fistula and post them. Does anyone care to see it? I think I should name my fistula.... Heh, that's what happens when you have a morbid sense of humor...

Terminology for the Beginner

Here's a good Kidney Failure Glossary that I found today!

Q & A's

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so you do have a fistula?

Yes, I have an 'upper arm' Brachio-Cephalic AV Fistula. It was just created in mid-October so its still maturing. Unfortunately, I have fairly small veins so it had to be put in my right arm (my dominate arm) to give me the best chance of having a functioning access. Because its in my upper arm, I can wear half-sleeves or long sleeves and no one can see it. And, other than the giant bulge right where it was created, I don't have an enormous vein sticking out of my arm all the way to my shoulder (I'm told I probably won't have, either...) Fistulas are better than grafts, if you can get one, because that way you don't have any 'un-natural' (plastic) parts inside your body. I had to fight my doctor over this because he wanted to automatically give me a graft due to my small stature. He assumed, even before I was tested, that I wouldn't qualify for a fistula.

I'm as hard headed and stubborn, and superficial as it may sound.. i'm afraid to get a fistula, or a graft because of the way it looks.

LOL - and, like you, as stubborn and as superficial as it may sound, I'm afraid to do PD because of the cath that would be sticking out of my stomach. I think I explained in my last post's comments that I'm small - 5'3" & 105 pounds - and a PD cath would look 'funny' with the clothing I'm used to wearing (primarily hip-hugger jeans and nothing else... hey, I work for an internet company so I don't even have to dress up during the week!) Also, I have a 3-year-old son and I want to keep him out of my medical 'life' as much as possible. The amount of supplies that I would have at home for PD seems overwhelming, not to mention right in my son's face. He's too little to understand or even begin to know what its about so the less he has to see, the better. We talk about the medicine I take and he likes to touch my fistula (he calls it my "swoosh-swoosh") so I'm not completely hiding it from him... I'm just keeping him away from most of it - he's a very empathetic little boy, as it is, and I don't want him worrying about mommy. I've always had body-image problems (probably one of the reasons why I've also had problems with an eating disorder off and on since I was a pre-teen) so even the fistula has been hard for me to get used to. For the first couple of weeks whenever I touched my fistula and felt the thrill it made me sick to my stomach. So, I decided to force myself to get used to it by holding my arm as much as possible. I'm much more comfortable with it now.

I once posted something like this on a kidney group and i was literally, attacked. please dont attack me?

Hey, everyone has to make the best decision for themselves, right? I would never tell someone that a decision they made about the type of dialysis they wanted was wrong, unless, of course, they made a decision without thinking about it or attempting to educate themselves and then later they regretted their decision. THAT would be the only 'stupid' decision I can think of :)

Interesting

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I figured out the way my fistula arm feels actually has a name - it's called "Steal Syndrome", as in my upper arm is 'stealing' blood from my lower arm. I don't have a bad case of it (if I did, I'd have no pulse in my wrist and my hand would be numb) and it is still slowly getting better. I have noticed, though, that when I sleep on my right side I wake up at night and my arm feels uncomfortable. Ken and I have been talking about switching sides of the bed because of this, but, I really like my side! Bah!

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