I've been dreading this day since the middle of 2014 when I realized I'd need to be on dialysis. It was the fear of a fistula that was probably the primary reason I chose to do peritoneal dialysis (among several other factors). Go ahead, I dare you to Google AV Fistula and look at the images and not freak out a little. They're mostly horrifying, and I just couldn't handle the thought of that in my body.
But things have changed now and it doesn't seem as though I have a plethora of choices. Before I explain, please understand that my transplant is STILL working, and I AM NOT on dialysis at this time, and HAVEN'T been since the transplant. I do, however, do plasmapheresis twice a week right now, and that requires a large access, which is why I still have a large access via my chest catheter that I've had since the middle of October, 2015.
The catheter itself is still functioning very well. The staff at Mayo do an EXCELLENT job of taking care of it, and I do a good job of doing the same while at home, which includes a rather arduous pre-shower routine and a significant amount of saran wrap and tape. This catheter hasn't bothered me so much in the winter because I've been able to keep it covered so no one can see it. It doesn't bother me that people can see it, but what DOES bother me are the strange looks or the awkward, sometimes intrusive conversation with strangers that I have to have. Most of the time I'm happy to engage in any conversation about the transplant, but there are times that I just don't want to, and there are enough of those to make me consider the fistula.
When someone sees this thing sticking out of my chest, they can't help but look. Hell, I'd do the same thing if I were in the other person's shoe. It's just that I don't want that to be the very first thing people see, and it usually is. And I hate it. It makes it IMPOSSIBLE for me to be anything other than a sick person in their eyes, and I'm just done with it.
That's not to say that people won't do the same thing with the fistula, which they will, but it's location won't make it the first thing that people see (hopefully). I'm having it put in in my right wrist which is good for the convenience of it. Having a dialysis access point that isn't easily accessed in every season isn't ideal, and having one in my upper arm in winter is dreadful, because I ALWAYS have to plan what I wear around it, and honestly, I don't want to have to do that. Normal people don't have to do that, and I don't want to either.
In my wrist, it should be relatively easy to access no matter the season. Another good thing about starting in my wrist is that once this fistula fails, then they can still try other locations on the arm further up, which is good because I'd like to avoid my left arm as long as possible since I'm left-handed. And ANOTHER good thing about getting it now is that the nurses on the aphaeresis floor will be the first ones using it. Plasmapheresis is run at a MUCH slower rate than dialysis (800 ml/min vs. 400 ml/min), so I'll get to sort of "ramp up" I guess. Plus, the nurses on the floor are amazing, kind and gentle, and they'll do everything to get me comfortable with it.
But the MAIN reason I'm going forward and doing this now is because of Izzy. I lost a lot of fun time with Izzy while I had my PD catheter and previous chest catheters because I couldn't get in the water (I did on vacation but that required herculean efforts sometimes). Anyway, I don't want to rob Izzy or myself of another summer of pool time and the lake and whatever else. I'm tired of missing out, and I'm tired of her paying the price.
I guess I should try to explain what a fistula is. According to Wikipedia, an AV fistula is an abnormal connection or passageway between an artery and a vein. So I guess it's not quite accurate when I said I'm having my fistula put in; it's more accurate to say I'm having my fistula created tomorrow.
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| Image from: Blausen.com staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762. - Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=31339214 |
- the surgery itself (I have PTSD after the last surgery I had, which I haven't blogged yet as a lot of things have happened in the last 6 weeks and I've felt crappy through most of it and haven't felt like blogging)
- the way it will look - the point of the fistula is to create a high blood velocity so that I can adequately dialyze (normal velocity is 85-115 ml/min....a month after the surgery it'll be 700-1000 ml/min), which means BIG VEINS.
- I will be able to FEEL the blood flowing...it's called the "thrill" (which makes it sound so much better to some but makes my stomach churn). There will never be another peaceful moment in my body, as I will always feel it
- I will be able to HEAR it - fuck, this just messes me up
- I'll "kill" it by accidentally putting a ponytail holder around my wrist like I've done a bajillion times before. That action alone could cut off circulation enough that the fistula essentially collapses, which would require me to get another chest catheter while waiting for another fistula.
- that it won't work at all....sometimes fistula's don't mature (the process takes 1-2 months) but for some people it just doesn't work. What if I'm one of those unlucky people???
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| This is what my right wrist looks while I'm sitting with my arms essentially parallel to the ground |
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| And here's how it looks while down by my sides (horizontal to the ground) |
Do you see how that being pops out? And that's only at 85-110 ml/min!! What the hell is it going to look like at 700-1000 ml/min????? Fuck, I don't want to find out, but I guess I will soon enough. My check-in for surgery is at 9:30am, and I'm sure I'll be a mess. I'll get the fistula tomorrow, and in 1-2 months it'll hopefully be ready to use, which is just in time for Minnesota's summer to kick in. Once we know it's working, I'll be able to get this chest catheter removed and on to some fun in the water again!!! And no more arduous showers!!!
Please, send the good juju my way tomorrow, and to my surgeon.
