Catching up....

 I gotta be honest....I don't feel much like posting here lately.  So many times I start writing the post kind of "in my head" but it all starts to sound stupid and self-centered.  I ask my self questions like "why in the hell do I think anyone actually wants to read any of this?" and then that pretty much kills any ambition I have.

Another reason I don't feel like posting is because things are going pretty OK right now, honestly, and this is the place I come to to vent or rage, and I don't have a lot of that right now.  But in all of the reading that I used to do on all of the kidney blogs that I used to follow, I noticed that, when all the drama was over (for the most part) they all stopped blogging, and that frustrated me.  I wanted to know what they were doing....all of the little mundane things after all of the monumental crises....I wanted to hear stories of their new normal and the journey as to how they got there....I needed to know that it was possible to live again on the other side of transplant or dialysis.  So knowing this, I'm going to work on becoming a more frequent poster again.  Even if it's literally the mot mundane things ever.

I'm a lot frustrated at myself for the entire last year, especially when I realize how far I've come.  We went on a pretty significant walk tonight with Rosie, and I kept thinking in my head "I couldn't do this last year because I was SO sick".  So many things happened in the last year....one of my best friends came to visit me with her family for a few days and it was incredible, another friend of mine decided that her life was much better without me in it and it's hurt me more than I can describe.  I've tackled doing hemo at home, and we finally took a vacation that required me to dialyze while on it, and I finally got back to doing hot yoga again and none of these are really documented well in this blog.  I will forever kick myself for not writing about it, but there were times that I just couldn't, and other times where I just didn't care enough about anything.  I was seriously depressed for part of it, medicated myself, and then finally saw light again.

My best friend and her family with my family during their visit last year

We just got back from vacation last week, and it was probably the most important thing I've done lately.  It gave me the confidence, and it made the world big again.  I was feeling SO restricted by dialysis, and focusing on all of the things I wouldn't be able to do because the travel aspect just seemed to be too much.  But I found a woman who's been dialyzing for years, and called her up....she helped me so much!!  And I sure as hell didn't spend time during the day thinking about dialyzing.  Our days were filled with so much walking that I was actually a little relieved have an excuse to just sit down for a few hours at the end of the day :)

I am suffering a bit from a fairly intense, dry tickle cough that I've had for months.  It'll get better for a couple of weeks in the midst of antibiotic, but it keeps coming back.  I've thought the entire time that it's because of my sinus issues (of which I'm getting surgically remedied on Friday....at least I'm hoping for some remedy) but I did some research today and think it may just be one of the shittiest side effects from my bronchiectasis.  I put in a call to my pulmonologist, who is, of course, not in this week, so we'll see what she has to say.  I honestly get sick to death of dealing with medical crap now that I let things go WAY too long, and then by the time I get a hold of the doctor I'm in a full-blown panic, yet this is the first they're hearing of it and are kinda blindsided by my frustration.  I'm sure there's not much that can be done for this cough, but I hope not.  Joacim has essentially moved into the spare bedroom now because I cough about every 15 minutes ALL NIGHT LONG.  I cough so hard that I vomit.  Frequently.  It sucks all to hell.  I need it to get humid again, because I never seem to cough in the shower, so I'm hoping humidity helps....it's been brutally dry this winter.

My blood pressure is SUPER LOW now, sadly not from the removal of my kidneys but due to a new med.  Now it's a little too low and is causing some dialysis issues, but we'll work on weaning off of some or lowering the doses to figure out what the sweet spot is.  I just cannulated my fistula in the area from my January surgery and it's going well...pressures are good.  I should have a buttonhole established by next week, and then hope to start training for nocturnal dialysis.

I did get to do a fun thing last week with the NKF.  Optum is a healthcare company based here by me, and they have a team of people who were putting together bags full of goodies for dialysis patients that they were going to deliver to city clinics.  I went there to talk to them all about my story and what it's like for me on dialysis.  I didn't have a prepared talk...kinda just went from the hip on this, but it went well.  I got great questions and overall really great engagement from everyone.  Didn't think I could do that a year ago either, but look how far I've come......I hope to get the chance to do a lot more speaking events in the future.

And now a bunch of vacation photos because they're fun and happy :)

Dialyzer (101lbs) and medical supplies (54lbs)

diaysate delivery

first vacation session

First impression of Harry Potter World:  AWESOME!!

Ice cream break

Train to Diagon Alley

Talking photos in Hogswarth

Wet clothes from a ride that, according to Joacim, "we wouldn't get too wet on" ;)

Giant connect 4 at the hotel pool area one night...

Family selfie on the first day at Volcano Bay

Funniest activity with Sue the Raptor

Good to see smiles....

Volcano Bay was amazing

Obligatory family selfie at the end of the day

Boxes of dialysate delivered the day before arrival

First vacation session...

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.

I couldn't make it up if I tried

I went into the clinic early today to get the extra fluid pulled off.  There is a new tech at the center (I don't think she's new to being a tech, but she's new to the clinic and is replacing a permanent tech that's been at the center for a few years).  Anyway, she stuck me for the first time today, and it felt like a disaster from the beginning.  Granted, it's always hard for me to tell what's going to be a disaster because I'm literally fearful of anyone that comes near my fistula that hasn't needled it before.   It's fucking terrifying.  She got the arterial in just fine, but the veinous needle she put in a completely new position (you can see it's the needle closest to the bottom of the photo below).  It didn't hurt, mind you, but it didn't feel right either.  It's like I could feel the tip of the needle in my vein, and it was just strange.

It's at this point where any knowledge of fistulas I have runs out.  I have to trust these people because they've stuck a lot more fistulas than I have, and I have to assume they know what they're doing or HOLY SHIT.....so I did.  And I wish I did't, because my gut was telling me this wasn't right.

I got through the hour of UF and successfully pulled off 2 kg right away, so that was great, but 27 minutes after we started actual dialysis (cleaning), I was lying down (because my bp was low...weird right?) and sleeping (see previous post) when this searing pain started in my fistula.  It turns out that, somehow, it infiltrated (needle through fistula) and we had to stop the run entirely for the day.  My arm blows up like a tennis ball is tucked under the skin, and it is indescribably painful.

I think the worst thing for me in that moment is how angry I was at myself for not trusting my gut.  I'm confident that if I would have asked/demanded that she move the janky needle, then this would not have happened.  And they were all so blasé about it (by they I mean the clinic staff).  I know that they see this shit all the time, but I haven't.  I've infiltrated my fistula one other time, and that was my own fault because I had a cramp in my foot and stood up (stupid, stupid mistake), but I was literally just lying there, perfectly still, sleeping, and it STILL happened!!!  What am I supposed to do with that?  "Pray" that it doesn't happen again?  That's not fucking good enough.  I'm pissed.  I'm pissed because of how little I know about hemodialysis.  Or about accesses.  I asked right away for them to start training me on self-cannulating (sticking myself) because I need to suck back some control in this whole never-ending nightmare I find myself in.

And it feels like there is this weird dynamic with clinic staff when you start asking questions.  Immediately, there is a sense of defensiveness that I sense.  I realized today that the nurse in clinic (there's only one) has no idea how to run the machines.  Now maybe that's not her job, but it sure as hell seems like something she should know.  I mean, there are only 3 staff members at my particular clinic (it's 10 chairs)...there's the nurse and 2 techs.  And when you have a new tech, and a tech at lunch, and a nurse who doesn't know anything technical, well.....it feels scary.

Surely this can't be how it's meant to be.  I just wonder how many things will happen that I'll just "have to get used to" or accept without a reason.  I'm not good at that, but I think it'll save my life in this case.

This is what it looks like a few hours after I left the clinic.  I've been icing it, but I think I need to switch to heat at some point (although I'm to sure when) to help the pooled blood re-absorb.  Now, because of this, I have to go to a DIFFERENT clinic tomorrow morning at 7:30am and do dialysis since I didn't really get any today.  As a dialysis patient who has to be connected to this machine nearly every other day, any extra sessions feel like they're stealing time away from me.  My nephrologist added another blood pressure medication yesterday, but one of the side effects of it is edema (fairly common side effect with BP meds that I've avoided thus far) so now I'm worried that this extra fluid is something I'm going to have to deal with in order to have lower blood pressure.

I'll have spent ever day this week doing something kidney related, and I just want a break where the sun is shining and I have energy and am at a reasonable weight.