4 weeks post AV fistula surgery update

It's been 4 weeks since I had the AV fistula surgery in my wrist, and things are actually going fairly well.  The first two weeks were ROUGH.  I didn't think it would hurt as much as it did, but I was woefully mistaken.

Of course, I need to catch up on the last 4 weeks, starting with surgery day.  I was really nervous for the surgery, as I had written about in the previous post, so I took a Xanax on the drive down (don't worry...Joacim drove me ;).  My surgery was at 9:30am which was nice because it didn't force us to leave at some ungodly hour and freak out about what we were going to do with Izzy before school.

This is the band that they put around my wrist when I checked in for surgery.  It's done to protect my arm from anyone mistakenly trying to put an IV in it or use it for a blood pressure cuff.  Ever since I had the initial ultrasound done to plan for the surgery, this arm has been off limits to any usage for blood pressure or blood draws in order to protect the veins.  It was good to get used to it prior to the surgery, because it's now a forever-thing since I have the fistula now.

After everything I've been through, one of the things I hate most is getting an IV.  I mean, GEEESH they hurt.  But I'm glad I had it this time because it meant SEDATION DRUGS, and I needed them.  I was fairly calm due to the Xanax during pre-op check-in, but once I was on the gurney and being wheeled down to the OR, all of the awful fears kicked in.  I went to the same OR that I had been in the last surgery (which I haven't written about yet, but it was an emergency surgery and it was scary as hell).  The hallway to the ORs is completely deserted of people yet filled with equipment.  The staff waiting in the room are always wonderful to me, and extraordinarily considerate of my fears.  I start to panic once I'm moved to the OR table....it's so narrow and hard and cold.  When they put the arm wings on to the table is when my fear REALLY kicks in and I ask to be put out.  Thankfully, they do it quickly (yay for IVs) and I don't remember anything else.

 This is what I saw when I woke up from surgery.  It didn't look nearly as bad as I had envisioned, but I was covered in a thick, sticky iodine surgical wash.

It went from my wrist of my right hand, all the way up my arm, into my armpit and across my back and chest.

And this stuff does not wash off.  It's supposed to wear off, which it does eventually, but every hair on my arm was trapped in it and pulling and it was generally awful.  Thankfully the aphaeresis nurses rescued me once again by giving me these cleaning packets specifically for the iodine wash.  It took a whole bunch of them, but I was able to get all of the iodine off by the 3rd day.

We were encouraged to get was a stethoscope after the surgery in order to check the bruit, which is the sound of blood flowing through the access.  I have this awesome audio clip that I took of my bruit using my iPhone (guess I could've saved money on the stethoscope had I known the iPhone microphone would pick up the sound), but it's too damn complicated tonight to be able to share that on this blog, so here's a link to a YouTube video of one to give you an idea of how it sounds.

This is what it looked like 2 days after surgery.  The bare spot in the middle of my arms is where the hair was violently ripped out when I removed the tape keeping the bandage on :)  The dotted line drawn on my arm by the surgeon shows the mapping of the vein that returns blood back to my body.

Here is a close-up picture (sorry if it grosses you out).  I don't think it looked all that bad.  The surgeon did an amazing job of closing it up evenly, and I'm thankful that they use stern-strips to hold the wound together instead of stitches or staples, as they don't create any additional scars.

DAYUM.  This surgery hurt.  A lot.  I denied a take-home prescription of oxycodone like I was some kind of warrior (I clearly must've still been under the influence of some drugs), and it was a big mistake.  I denied them because they COMPLETELY mess up my GI tract...like for weeks, and it's so difficult to get things back to "normal".  But I regretted it about 2 days in....I was in HELL.  It hurt to do anything....you're supposed to walk a lot post-surgery (to help keep things normal) but walking was painful because GRAVITY.  Ugh...I don't think I went anywhere the first 2 weeks without an ice pack.  I just sat a lot and iced a lot, and started to get REALLY nervous that this was how things were going to be.  I tell you...when I'm in THAT kind of pain for THAT length of time, my brain thinks some pretty terrible things.

I took this picture 2 weeks after the surgery.  The scar healed REALLY well, but I'll always remember how painful those stern-strips were when they fell off.  The area around the incision was extremely sensitive, and my long-sleeves kept rubbing against it, tugging on the hair on my arm, adding to the awful.  I was SO happy when that last strip finally fell off!  You can see the fistula best from this angle...it's the raised surface right above the stern-strip.

Honestly, I don't think anyone would really notice it at this point.  It hasn't really gotten much bigger yet, which means I probably need to do more hand exercises in the near future.  I'm at a point now where I have full use of the arm/hand again, but the wrist is still a little weaker than I'd like.

I had an ultrasound yesterday morning on the fistula..actually the ultrasound covered my hand to my collarbone, but they were focusing on how the fistula was developing.  So far, it's going fairly well, but as my history dictates, there are some things that are happening that are a bit rare.  In the above photo, you can see a slightly raised area on the right of my forearm (midway between the sleeve and wrist).  That particular area is where the problem is.  The flow is being directed down 3 separate branches down my arm, and that's reducing the overall flow rate, which is on the low side at 670 ml/min.  The plan is for me to come back in 4 more weeks for another ultrasound, and possibly a plan to have another procedure done to ligate one or more of the branches (ligate means to cut off blood flow) in order to "force" the blood to go a different direction.  This isn't a certainty, but seems the most likely course of action.  And the reason we're waiting 4 more weeks is because it takes 8 weeks in order for the vein wall to be thick enough to do anything with, so we wait.

The good news is that I've been cleared to start doing yoga again, and ride my bike...essentially all normal activities, which is what I was hoping for.  I've been going a little stir crazy in the house lately and I need to direct it somewhere.  It'll be tough to find the balance between working out and not sweating (due to chest catheter).  We've had a few rather warm days lately, and I've found it difficult to go for a walk without sweating because I am THAT out of shape, so I'm not sure how yoga is going to go, or bike riding for that matter.

I've noticed that my body isn't as able to handle the heat as it did before.  I sweat quicker, and feel light-headed so I need to be careful.  I am absolutely hating putting on sunscreen, because that means I have to shower every day.  And I hate showering due to the chest catheter.  So I find that I stay inside a lot because I don't want to deal with it, and that sucks when the entire state of Minnesota is outside once it gets nice enough :)  

I was freakishly skinny post-surgery, and having a very hard time getting my appetite back.  I got down to 58 kilos at one point (that's 127 pounds), and although it looked good on the scale, it felt awful in my body.  I was just so weak, and even yoga pants would slide right off.  That's just wrong, no matter how much I wish that number was my normal weight.  I'm back to where I should be, and even though I'm not necessarily comfortable with how it looks sometimes, it physically feels better.  Unless I'm retaining fluid, because it seems that I'm retaining it in my belly right now, and I dread the day that someone asks me if I'm pregnant.  I wonder how I'll laugh that one off and try not to make the unsuspecting offender feel awful.  

We're also going down to 1/week plasmapheresis treatments to see how my kidney handles it.  If we see that I'm retaining more fluid and my creatinine rises (it's currently at 1.9) then we'll go back to 2/week, so keep your fingers crossed that this works, because that puts me one step closer to my new normal.