Post-op from nephrectomy

It's been a long time since I posted here....I'm not going to even try to catch everyone up, so let's just dive in, ok?



Anyone who ever tries to minimize the "majorness" of a bilateral (both sides) nephrectomy (kidney removal) can fuck the hell off.  Never listen to a surgeon, who seems to equate any surgery to a dental cleaning.  I vaguely remember hearing one of the nurses is post-op mention that this is considered a same-day surgery, meaning most people leave the same day (and that she thought I was being dramatic when describing my pain).  Fuck off whoever the hell you were.  Fuck.  Off.

Since I've been away from a hospital for a whole 2 months and away from any kind of a surgery for a year (except sinus surgery back in August), I had blocked out a lot of the memories of how bad physical pain feels.  Not being able to put your socks on because you can't engage your stomach muscles....an abdomen so full of gas that any position feels like you're being stabbed with a thousand tiny knives....vascillating between sleeping and being awake.....feeling nausea and begging all forces in the universe to stop it because you fear your guts may fall out if you vomit.  Yep, all of it came rushing back to me, and it's not over yet because I will probably have another surgery later this week or early next week.  I'll get to that in a second...

So I'm home now, which is good, but it isn't restful.  Joacim and Izzy aren't reading my mind every second wondering how they can help me, and when you actually have to verbalize to another person everything you want, you sound ridiculous and demanding.  Which is why I usually end up doing things myself.  I get mad because they don't know what I want, and sometimes I get resistance when I ask for something.  I'm sure it's annoying to them to have to wait on me, but I don't really get it from them like I wish I could.  After this particular surgery, it's really kind of painful to talk, especially to yell to another room, so I just do it myself.  It's a particularly shitty part of all of this, at least in this house.

And I'm sure some people might be reading this and wondering "why didn't she ask me for help?"... because I don't want to ask.  It's embarrassing.  I sound needy and spoiled.  I just wish for someone to do it without me having to ask.  Joacim still has to go to work...he lost 3 days last week because of my surgery and the snow....he has responsibilities too.  And Izzy....poor little Izzy....I mean, she's only 9 but I throw a lot at her, and she doesn't deserve it.

Speaking of Izzy.....I'm a little worried that this last week has had a significant negative effect on her.  Because of a series of things, Izzy ended up seeing me right after surgery but before I had really come out of my anesthesia.  They took me straight from post-op to dialysis because my potassium was super-high (I'm probably lucky that they did the surgery at all), but I was pretty adamant about not wanting dialysis I recall.  I had done it at home the 4 days prior, and I had JUST come out of surgery and was groggy and in an excruciating amount of pain....I didn't have my blunt needles with me and I couldn't have cannulated myself anyway due to the pain, and I think I was delirious.  I remember seeing Joacim, with a smile on his face because he came back to the hospital after going home to get Izzy while I was in surgery and has no idea of my mental state, and I remember Izzy trying to tell me that Simone Biles sent her a letter back from a class project and she was so happy.  But I was barely listening...I was moaning and crying that I don't WANT to do dialysis....I could see the look on her face that she was scared of what she was seeing, and I couldn't communicate that to Joacim.  And I knew all of this in my head, but it was too late and he was too late getting her out of there and it was all just awful.

He took her home, but she cried on the way home, and then a little more at home.  Ugh.  And then I almost threw up on Friday (and she HATES it when that happens), but even worse today was that she was with me when I drove to see my doctor (yes, driving to see a doctor still has to happen) and I threw up while driving and she was freaking the hell out.  I mean, who wouldn't?  Who likes to be around someone that's vomiting?  But especially when it's your mom.  Your mom who is literally  driving to the dialysis clinic to meet her nephrologist after she just had her kidney's removed.  What can I do?  I don't even know why the hell I threw up....I felt fine.....it was weird.  Thank god I had an emesis bag handy or it would've been REALLY awful instead of just awful.

Everyone tells me how much compassion she'll have when she's older.  I think people say that to make me feel better, and that's fine, but what do I do in the present?  How do I help her through this?  Am I supposed to just ignore her reactions because "she'll be compassionate when she's older??".  Fuck no.  THIS part of my whole illness is sucking so much.  She needs me, and there are times when I just physically and mentally can't be there.  This has always been the case, but now she's old enough to notice and understand that it's scary.

So, did the surgery work?  Well, who knows.  I don't actually think there's going to be a solid answer to that right now.  My BP is back up again, but not as high as it was before the surgery.  This could be due to the fact that I literally vomited right before they took it in the clinic today.  It could also be higher due to the amount of pain.  Whatever the case, I'm going to start taking one BP med tonight and see what happens over the next few days.  I have an escalation plan with my doctor if it doesn't go down or rises, so I guess I'll just keep my fingers crossed.

Note:  I DO have nausea meds, but understand that I'm not nauseous.  I didn't take any pain meds today (because I had to drive and because they cause constipation), and I wasn't feeling sick or nauseous.  The vomit comes on in under 10 seconds and then it just....happens.

There were no guarantees that this surgery would work, and there aren't any other options except more meds (many of these with debilitating side effects) if it doesn't.  I'm just going to put one foot in front of the other every day and not jump ahead to "what if" it all.  Hour by hour, day by day.

This is what my abdomen looks like 5 days post-op.  The incision above my belly button is where they took the kidneys out.  Yes, I'm still swollen and full of gas.  And yes, my belly is terribly hairy, but that's one of those nasty side effects that I was mentioning.  I've been taking minoxidil for my BP for the last 2 months, and it works well, but it has the side effect of hair growth.  It's also more widely known as Rogaine.

I mentioned "another" surgery earlier.  Home hemo is going well, but I've been having some issues with my access lately...my arterial pressures are high, unstable, and getting worse. I had a fistulagram a few weeks ago to try to widen it, but it didn't really work, so now a vascular surgeon is going to harvest another vein from my arm and use it to "patch" a section of my current fistula.

I had an ultrasound on it while I was in the hospital and the tech did a nice mark-up of it to help figure out where the surgeon would actually operate.  I needed to know this because I needed to understand where I could no longer cannulate due to the surgery, and I am now trying to develop another buttonhole higher up on my arm.  And I'm doing THAT in order to avoid having a chest catheter put in.  Dammit....I hate those things, and I'll do damn nearly anything in order to avoid them.  It's not hard to create another buttonhole, but the location of this one is right in my elbow and it hurts because, during treatment, I can feel the tip of the needle (using sharps) inside my vein with any arm movement, so all of the relative freedom I've had has gone away right now until it's established (switch back to blunts).  This means that I can't really do dialysis at home by myself for ow because I need someone with me the entire time to push buttons on the machine when I need them to (also partly because I have 7 fucking holes in my stomach and I can't get up from the chair to reach the machine while running).  Which means I'll go back to doing it in the evening when Joacim and Izzy are home, and that sucks for all of us.  I can't lift the dialysate bags right now anyway, so I need Joacim to do that for me the night before I run.  But if I'm stuck staying still during the run until I'm healed from this upcoming surgery, then I'm looking at at least 6 weeks, because that's how long it'll take to heal and establish ANOTHER buttonhole.  Ugh.

This is a top view of my fistula.  The long line is the actual fistula vein itself.  The horizontal hash marks are where the surgeon is going to patch.  You can see that one of my buttonholes is in this area, which is why I'm working on a new one in my elbow where you can see some work being done there.

This other mark shown here is the location of the vein that will be harvest and used to patch the fistula.

What I am finding now, on this other side of transplant, is to literally try to remain focused on the present.  It's sometimes overwhelmingly depressing to look out any further than that.  The only time I'm going against that is thinking about a real vacation...I mean longer than 2 nights.  We're thinking about taking Izzy to Disneyworld over spring break.  It seems like a place that would be great at accommodating my medical needs (doing dialysis in the hotel room with my machine) yet having a ton of things to do for Joacim and Izzy when I need to dialyze.  Those of you that really know me understand that this isn't ever a place I've wanted to go in the past...too overwhelming...too busy....too much.  But I think, considering I spend at least 15-18 hours a week dealing with dialysis, that it may be a good option to start learning how to vacation again.  If there's a day I don't feel well, then they can go swimming.  We'll stay on-site to avoid the time lost driving back and forth, and we'll keep our expectations of what to see small.  We'll get a meal plan so we don't have to deal with "what's for dinner".  I've been in touch with a few awesome friends who have done Disney several times, so I hope it's not too bad.  We aren't going to tell Izzy yet....hoping to make it a fantastic surprise for her.