AV Fistula update: 8- 11 weeks out

I realized that I never blogged about how everything is going with my fistula, so that's what this post is about.  Back in the middle of June, I had my 8-week follow-up appointment to check on the progress of my av fistula.  First off, we started with an ultrasound, which was a MUCH shorter appointment than it was for the 4-week one.

This is what the ultrasound room looks like.  For my fistula, I lie on my back and my arm is outstretched over the technician's lap.  The ultrasound goes from my hand all the way up to my neck and shoulder.

I had an appointment with the surgeon as well and I was nervous about what he'd this of his handiwork, but he was actually pleased with the development.  I'm up to 740ml/min which is a good enough flow to start attempting to use it during my next plasmapheresis treatment.  Because my fistula is pretty small, the doctor wanted to put the return needle the vein in my elbow (just like an IV), and the blood would be pulled from a needle in the fistula.

I wanted to take a few photos of the fistula before we started using it to remind me of what it looked like.  The more use it will have means the more changes it will undergo (i.e. growing larger and possible more gnarly :(  You can see in these photos already how the veins have already started changing on the underside of my wrist.

Honestly, it doesn't look NEARLY as awful as I had feared (yet, that is).  It's still pretty easy for people to completely miss that I even have it, which is a relief at this point because I still have my chest catheter.

My next plasmapheresis appointment was actually the next day, which would've been a Wednesday.  I was nervous, no doubt, and I had Joacim take me down to Mayo that day so that I could take a Xanax before we tried it.  They give me local lidocaine at both the access and the return, so I don't feel those needles going in, only the short painful pinch of the lidocaine (think about like whenever you've gone to the dentist and had to have a numbing agent in your gums).  The return was accessed without any issue, but we DID have problems on the fistula itself.

I was pretty upset by all of it.  I had the WORST thoughts running through my head, and Joacim took this picture at the exact moment when I felt that all hope was lost.  I was already (in my head) at the point where I was going to need a new fistula and it was going to be ANOTHER surgery and another 8 weeks of waiting.  That's just how I'm wired...I go to the very worst case scenario first, feel out all of the emotions associated with it, and then figure out how to process and get through it.  I'm fortunate in that it wasn't as I had feared.  What happened in this case is called an infiltration, which is essentially when the access needle goes all the way through the fistula instead of stopping within it.  The hole that's created on the other side bleeds a lot internally and internal bleeding is incredibly painful.

This can happen to anyone, and will most likely happen again.  I have a very shallow fistula that requires a smaller angle of entry.  I think a lot of nurses are trained to start at 45 degrees, which is too much for mine.  In order to get plasmapheresis done, we kept the return in my elbow and used one of the lumens from my chest catheter as the draw.

My wrist and hand were pretty tender to the touch, so the nurses got me some ice packs to use during the rest of the treatment.

You can see how the swelling starts right above the fistula.

The swelling became really noticeable once I removed the gauze wrap at home.

The bandaid that is used is a compression bandaid that also has some medicine on the pad that helps coagulate blood.  The square mark on my wrist is where the pad of the bandaid presses on the whole created from the needle to help the site close.

I wanted to show the difference between my fistula hand (on the left) and my other hand (on the right).  You can see how the veins are much more prominent on my other hand due to the swelling on the fistula hand.

Thankfully, things finally took a turn for the better 2 days later when we tried it again.  The video is a little long, but shows the process.

And this is what it looks like when it's working.  The blood is being pulled from the fistula, processed through the machine and returned in my elbow.  SUCCESS!!! 

I wanted to show how big the needle is that goes in the fistula, but the pic is a little blurry.

Compression bandage but reduced swelling.

The next few photos show the progression of the bruising.  It's been 19 days since the first time it was used, and there's still a little bruising along the forearm, but not near as bad as it was.  I'm glad that, even though it looked awful, it wasn't painful (well, for the most part).  I mean, I had bruises in the strangest places, from the lower knuckle on my thumb, to the outer wrist bone.  It was interesting to watch it all develop, but I still hope it never happens again :)

So, that's about it for the fistula.  The BEST news that I've had in awhile is that we're FINALLY talking about getting my chest catheter removed!!!  It looks like we'll shoot for the week after this coming one, so wooohoooo!  Having this chest catheter in the summer has been so difficult.  I mean, any amount sweating can loosen the tegaderm bandage covering the exit site, thus essentially rendering the coverage useless.  It happened today while I was outside talking to our neighbors.  We were just standing there, enjoying the day, but when I got home a few hours later, I noticed that the bottom of the bandage was completely detached from my skin.  I quickly covered it with some tape, hoping that's good enough until I have a dressing change on Tuesday.  I'll be SO happy to be rid of it!