The ultrasound took 1 1/2 hours....anyone that's ever had an ultrasound knows that that's a LONG ultrasound. The radiologist appeared to be relatively new, at least to AV fistula ultrasounds, and had to call in a different radiologist on 3 separate occasions. Already, my spider-sense was armed....whether it's right or not, I'm instantly thinking that she was doing it wrong, and so any result is in jeopardy.
I thought the ultrasound was only going to be on the part that was operated on, but it started all the way up in my neck...actually the left side of my neck, then the right side, around my collar bone, through my upper and then lower arm. Once it was done, I went to another clinic room because there were some leftover stitches that I asked to have removed by a nurse. I had tried to do this at home, but no amount of tugging was budging them....even Joacim had a go at them, but then we both worried that we were doing more damage than anything else, so I asked them to do it when I got to the ultrasound.
After they were removed, a totally different person came in the room with a rudimentary drawing that shows the upper part of a body, with a couple of darkened areas on the right arm. She briefly mentions the "bad news" in that there's stenosis (narrowing) in 2 separate places. Ummmmm....what???? Did the surgery not work? Did they even ultrasound the right part? Where, EXACTLY, is the stenosis? Now at this point, I know it does me no good to ask her any questions because all of these places pretty strictly forbid radiologists from commenting on ultrasounds. She told me to go home and that she'd call me later, but I wasn't having any of that. I mean, what's the point? What is she going to tell me over the phone? Was she going to point at this ridiculous drawing and try to explain to me where the stenosis is? I mean, fistulas are a pretty complicated beast....I wanted to go over the results with a doctor; in the same room, so he could tell me exactly where the stenosis is. So that's what we scheduled, which will be this Monday at 8:45am.
I'm so fucking nervous for this appointment. That ultrasound wrecked my day, much like lab results used to do at Mayo near the end of my treatment there. As the day went on, my thoughts kept spiraling, and I had worked myself into a pretty heightened state of anxiety by the end of it. As I understand it, there are 3 possible scenarios that we'll discuss:
- fistulagram and/or stent : essentially, another rotor-rooter of my fistula and possibly a mesh stent to keep open the area (but they can't stent a particularly long section, which is my issue, and why this seems an unlikely option)
- replace fistula with graft - grafts are artificial veins...they are prone to infection, and I can't use buttonholes with it. They also don't last as long as fistulas.
- new fistula in new location - this would likely be my upper right arm. I have no idea how I would cannulate this are myself, or take out the needs at the end of a run, without making an unholy mess. I worry about how it would feel, having that fistula on my inner arm....I would constantly be rubbing against it and I fear it'd drive me batshit crazy.
Options 2 and 3 would be absolutely crushing to me, but it's something that could happen. I have no idea how I'll handle it. The thing is that this fistula is still pretty new...I mean, it's only a little over a year old. There are so many people that have fistulas that are 20 years old, and I thought I'd be one of those. The thought of getting a new fistula only a year into a lifetime of dialysis is so scary to me...I mean, once you run out of places, what do you do? Do you die? The end? Do I give up? Is it life with a chest catheter? Oh fuck...I just don't know. And I'm going to fret about this until Monday. Even after my appointment, I'm not sure if I'm going to be settled on the answer. I've considered contacting my surgeon at Mayo Clinic again...I'll have to see how it goes on Monday before I decide that.
Shit, is this going to affect my vacation? I mean, we leave in 3 weeks. It took 40 minutes for my arterial buttonhole to stop bleeding today.....40 minutes is a really long time when you're holding pressure, and when you're late for your doctor's appoinment, which I was :( It's never taken 40 minutes before...usually 5 minutes....15 tops. But 40??? Dr. Google says that "prolonged bleeding" is an indication of stenosis...this isn't looking good.
This crappy news has me in a complete fog now...I mean a serious brain fog. All I can do is stare at the TV...I can't read a book or do anything that requires brain power. Hell, I can't even organize a closet right now because my brain is just not working. Based off of my numbers, I'm getting adequate dialysis....is this the anxiety that's wrecking things? It just feels like there's never going to be any significant period of stability in this whole nightmare. I thought I'd be talking to my team about starting nocturnal home hemo, and returning to some normalcy in my life. Now everything is completely up in the air again....