All the sad, all the worries

As many know from my social media posts, this last week has been particularly difficult.  Last Wednesday, we had to say goodbye to my faithful companion of 12 years....our dog Murphy.  He was my best bud, my 2nd longest roommate, the first dog that we raised as a family.  He was there through the rough parts of FSGS (prednisone, moonface, crushing lack of self-esteem), when I was pregnant with Izzy and happy about everything....he was right there in our bedroom the night we brought Izzy home from the hospital (although initially probably not thrilled about it).  He was there waiting for me to come home from Mayo, and has been my constant dialysis companion since I started doing it at home back in November.

Man, the number of hours that we spent playing with him as a pup because he was so high-energy.....I mean, there'll never be another dog that will get that time and attention from us.  In his older years he became such a distinguished gentleman, with his gray beard and soulful eyes.  I could talk to him....tell him everything that was on my mind, and the only thing he requested in return was constant affection.  I couldn't imagine how difficult it has been to say goodbye to him.....

I've been struggling a lot, emotionally, and this last week feels like it tipped me over the edge.  The first question my nephrologist asked me on Monday was, "Are you down?".  I guess it even shows in my physical appearance.  The waterworks flew for a bit, and she was kind and listened.  She suggested I start back up on Zoloft, but I'm hesitant because I felt nothing.  I stopped taking it last November, in part because I new my time with Murphy was coming to an end, and I wanted to cry about it.  I wanted to feel all the feels.  I wanted to honor him as he had been such a sweet companion to me.

But I don't want to start back up on the Zoloft....not yet at least.  I'm going to try to set aside time every day, even if it's just 5 minutes right now, to meditate.  I'm also going to see what I can do to start getting back into yoga.  I've done it the past 2 days, and I'll admit I was surprised at how sore I am, but I need to push through it.  I think, in the long run, it's going to make me feel so much better, both mentally and physically.  My body doesn't have much range of motion anymore because of all of the sitting/laying I've done over the last 2 years.  I'd love to just jump into a class at Lifetime, but I swear I think I'd either pull every muscle in my body or have a heart attack, so I figure I'm going to baby-step back into it.  I have a membership at yogadownload.com, and they have a TON of classes to fit my needs as I'm building up my strength again.  I do, however, look forward to when I feel strong enough to go back to a hot yoga class.  Those classes are so damn "cleansing" for my brain, and I push myself so much harder in a class setting than I ever will here at home.  And I need any excuse to get the hell out of this house.

I'm going batshit stir crazy in this house.  I'm here all the f-ing time.  I look for useless reasons to leave all the time (except this last week....I think I needed to spend as much time at home as I could with our other pup, Rosie).  February, in general, is a difficult month to get through....it's just so cold here, and the cold starts to seep in everywhere.  I'm freezing inside all the time, so I find myself moving less and less, just so I can be in front of a heater/fireplace or on a heating pad....anything to stay warm except actually moving.  It's just too cold to be outside for long, so we're all stuck here a lot more than we'd like

It feels like dialysis takes up so much of my day....it's really wrecking any sense of control that I have over my life.  I am wanting to switch to nocturnal hemo at home.  It would still be 5 days a week, but it would be a 6-8 hour run overnight.  Maybe that's what I loved about PD....it was overnight and didn't seem intrusive at all.  I'm worried about keeping the needles secure and not making an unholy mess, but lots of other people do it, so I figure I can too.  But I can't make any progress on this until my fistula is fully healed, which I'll find out about on Feb 28th when I return for an ultrasound.  Then I can establish new buttonholes on my forearm again, which will be much easier to secure.  It's healing decently though...

Many people have asked about my blood pressures.  Well, I'm sad/angry to report that they're truly awful.  Just as bad as before.  I have no idea why the nephrectomy didn't do anything to affect them, and I now think I'll forever feel like a ticking time bomb.  I'm back on nearly all the meds, except the one that caused excessive hair growth, but it won't be too far behind at this rate.  Fuck, it's scary with these blood pressures....I just wish I knew there was something else to try, but there just isn't.

On a lighter note, I'm taking a trip, leaving tomorrow.  Nephcure, which is the organization dedicated to finding a cure for nephrotic syndrome, MCD and FSGS,  is hosting a leadership conference in Dallas, Texas this weekend.  I have been completely shying away from any opportunity like this because I just didn't feel like I was in the right mental frame of mind to do anything positive.  I'm not sure if I'm there yet, but I'm hoping this weekend will be the kick in the pants I need to reengage in my life.  I'm nervous to travel, although I have no idea why.  I have to get up at an ungodly hour tomorrow morning to fit dialysis in before I fly out. This will allow me to take this trip without having to worry about dialyzing while there, which is a HUGE relief.  Of course, I'll get off the plane on Sunday, come home and have to dialyze again, but at least it'll be at home, and I don't have to stress about that stuff.  Wish me luck!

AV Fistula surgery follow-up and other odds and ends (contains some graphic images...you've been warned).

I've got a whole bunch of emotions that I'm dealing with right now, and I don't even know where to begin.  Whenever this happens, I turn to the photostream on my phone to help me get started (which explains why this post is so picture-heavy :)  I figure that (maybe) if I start writing things about these photos, then all of the other emotions may come to the surface and slowly seen out.  This blog is my therapy and I'm in desperate need of some.

This is my friend Mindy.  We "met" a fear years ago on a blog of someone we both followed.  I don't even remember the exact way it happened, but we discovered we were both in Minnesota, and our friendship grew slowly from there.  We've had lunch a few times here in the cities when she and her family come down (they're in the northern part of Minnesota), but this time she offered to come and help out with my fistula surgery (since I was so hammered from my nephrectomy), and I took her up on it.  It's never easy for me, or us as a family, to accept help, but it's something we know we need to work on.

Mindy is the kindest soul...what I love about her is how positive she is and how openly appreciative she is of her friends!  She's a transplant here too (from Vegas), and I've often marveled at how easy it is for her to make friends, which is something I've struggled with here.  Anyway, it was really great having here here...Joacim and Izzy loved her as well, and we're all looking forward to seeing her again soon!

These are pictures from surgery day.  The original plan was for general anesthesia, but I had had one terrible experience with that prior, and that was enough for the anesthesiologist to think differently, and I ended up with a nerve block.  This is the doctor using an ultrasound machine to find the nerve in my neck/shoulder to block the full length of my arm.

I'll admit that I was REALLY nervous about this surgery.  Partly because I wasn't even healed from the one I'd had 8 days prior, but also because the last time I had a surgery on my fistula was incredibly painful....I mean the WORST.  But having this nerve block changed everything.  I woke up happy and smiling and requesting a popsicle :)

And I was amazed that I could use it the next day. I had started creating new buttonholes the week before in preparation for the surgery, and they worked fine the day after surgery, even though one of them was SO close to the incision.

The surgery scars initially after are pretty ugly.  This was the first time that I'd had actual stitches in all of the surgeries I've had in the last 2 years...usually it was just stern-strips keeping everything closed.

This is the vein they took to repair the actual fistula.

Random addition to this post, but we finally had a real snow day....around 9" of beautiful snow!!!

Ahhh....and here are my buddies....I love these pups....

Our neighbor brought over her old snowboard for Izzy to try....she's quite a natural athlete, but the gymnastics training she's been doing for the last 5 years has been superd-helpful for her balance.

NOW FOR THE GRAPHIC IMAGES PART!!!  DON'T LOOK ANY FURTHER IF YOU'RE QUEASY AT THE SIGHT OF BLOOD......

So the other day while dialyzing, I noticed that the venous (return) needle was starting to "back out" from the pressure.  I didn't have it secured properly and needed more tape, so I reached over my arm to get the roll of tape, and the whole needle came out while the machine was running.  I spent a good 4-5 seconds panicking and then just starting closing any clamp that was close.  That wasn't working so I just stopped the machine entirely.  Holy shit, that was a lot of blood.  The venous site was spewing blood, as was the dislodged needle....all over the chair, heating pad, my face and hair.  There aren't a lot of things grosser than being covered in your own warm, sticky blood.  Ahhh...a day in the life of a dialysis patient.  Luckily I usually only make these mistakes once ;)