I think I need to be doing this more regularly now

I can tell that my lack of an outlet for all of the emotions that are swirling inside of me are directly affecting me and everyone around me.  This blog used to feel like a place where I could let it all out....everything I was feeling and how my body was changing and how devastating it all was to me.  I mean, you have to admit that there haven't been too many posts with a positive spin in the last year or so, but at least that's honest.

I don't know if it was the election that finally broke me, but something did, and I just felt the need to crawl up in a ball and block out the outside world.  People that I once thought of as good people or friends said or wrote something that flipped a switch in me that made it impossible to go back.  I've realized that I have a lot more acquaintances than friends.  There are a handful of people that have really been there, been patient with me.  I think they understand that this is hell for me, but they continue to reach out to let me know that they're still there when I need them, and they don't harbor resentment towards me for not always being in touch.  THAT is a true friend to me.

I read something that made me laugh out loud at the irony of my own situation.  It was an article that someone had written who had spent time volunteering on a children's transplant floor at a children's hospital.  One of the things she noted in her list was the fact that these kids are surrounded by an army of supporters.  Prior to the transplant, I would've said that I had an army of supporters, even though a large majority of them were "virtual".  I felt supported and loved, both by my friends and by Adam's friends.  But things have changed over the last year, and that bubble is gone.  I am partly to blame for this because, when things started to get really bad, I kind of shut down.  It's totally normal for people in my circumstances, but it sends signals to people.  These people may want to reach out and offer support, but they're worried about "bothering me", so they don't.  And it all ends up with me feeling very lonely, pretty much most of the time.

This feeling has been exasperated in the last few weeks.   The day after the election, I deleted Facebook from my phone.  I realized that it had become a place that caused me literally nothing but anxiety.  I haven't deleted my account, and I occasionally pop on there to see what I missed (absolutely nothing), but it has deepened the isolation.  There are just a few souls on this planet who understand, but they don't live next to me.  Talking to them online doesn't always replace a comforting hug, or a friend you can look in the eye and REALLY tell them what's going on in your head while having a cup of coffee.  There just aren't that many people.

I was listening to a podcast Monday on my way home from a hellish day at Mayo, and it was about a person who had experienced several traumatic and life-changing events in the short course of a few weeks, and she articulated something I've been feeling for a long time.  I no longer care to have small talk....I'm in for the "big" conversations.  I think this comes across as aloof or disinterested to many people I encounter, but that isn't the case.  My mind constantly swirls with big things, like:

• What in the hell is happening in this country?
• Am I doing right by Izzy?  Will she grow up to be ok?  I mean, I'm not exactly the brightest spot of sunshine.
• Will I ever work again?
• Will I ever contribute to society again?
• Who am I now?
• What's the next awful thing that's going to happen to me?

Speaking of that last statement, I just got off the phone with the dialysis access clinic at Mayo.  This was an unexpected call notifying me of an appointment scheduled for an ultrasound of my fistula and an office visit with my vascular surgeon (the doctor who surgically created my fistula back in April).  My nephrologist emailed my vascular surgeon last night noting concern that my fistula hasn't developed any further and that we were starting to have problems accessing a vein for the return line at plasmapheresis (all true, although we kinda knew that the fistula wouldn't really get any bigger).  My creatinine is also pretty high now at 3.6 as of Monday (I was fairly dehydrated that day so I knew would be higher, but even without that it's still high) and dialysis is starting to appear on my horizon.  Even though I've always known it, it's still crushing.  I cried some....I'm sure I'll do it a lot more.  Wow....it's just so disheartening.  They scheduled the ultrasound for Friday at 1:30pm, and then an appointment with the surgeon next Wednesday at 3:15pm.  These make 2 extra trips to Mayo that I have to make.  The following is how this week has gone so far and what next week looks like, because this is how my world is now:

Previous week:  I've been nursing a slowly-building cold for several days now.  It's mostly been sinus drainage, but it started to move into my chest on Sunday.  I've been a little miserable because I can't take any decongestants due to blood pressure, so I just kind of have to suffer through it.  It's most likely viral, so an antibiotic doesn't do much.  I also seem to have now frequently-recurring case of pinkeye that moves back and forth between both eyes that's caused from allergies and my cold.  It seems like this is going to be a frequent visitor for me now that I'm immunosuppressed.

• Monday:  I had labs and plasmapheresis at 9:00am.  The two veins we've been using for the return (in my elbow) are both filling with scar tissue and it's getting more difficult to insert the IV cannula into (they use larger ones than normal IV cannula's due to the high flow rate).  We were finally able to get a line in my forearm, but these hurt a lot more.  I've had it done once before, and the treatment goes fine but the swelling/pain/bruising that occurs a day after is hard to deal with.  I'm unsure why it happens, but most likely is that the vein doesn't clot as fast after they remove the cannula, and I never like the bandage wrapped tightly around my arm because it makes my hands swell.  Once we got up and running, I took my meds, and within an hour I was vomiting.  It comes on fast when it happens, and I'm 95% sure it's due to the labetalol I take for high blood pressure.  This is the first time I've ever vomited from the morning dose though.  I get nauseous from the afternoon dose, and it happens with some frequency in the evening dose (I even threw up at an Adele concert).  This is concerning on many different levels, but mainly because this BP med seems to work, and it's hell trying to find a new one that won't negatively impact my kidney or potassium levels.  And it's not exactly convenient to be worried that you might throw up at any one of 3 times a day.  I was happy to have a kind nurse who held my hair while I vomited into a waste basket on the side of the bed (she was giving me calcium at the time due to the plasmapheresis treatment, and she had to use what was closest).  Such a glamorous moment.  I had been able to see my doctor prior to all of the drama, and he noted that I sounded pretty terrible and looked fairly pale.  He had noted that my IGG levels were really low the last time he checked them, and that it was time for an IVIG infusion to bring them back up again (to help fight off infections).  I dread these because they take usually between 4-5 hours, but he got it scheduled right then and there for the afternoon, so once PP was over, I headed over to the infusion center.  They were running behind, and I didn't end up getting the IVIG started until more than 2 hours after my appointment time started.  There were issues with the initial IVIG bottle that they had (it was the wrong one) and then I had to take tylenol and benadryl and wait 30 minutes for them to start, so it took forever.  I have always had reactions to IVIG (or really any infusion made from a blood product) and Monday was no exception.  My doctor ordered an IVIG for reaction-sensitive patients like me, and it worked relatively well back in March when I had it, but we realized about 2 hours in that THAT IVIG wasn't the one that I was receiving.  We never got past the initial starting flow rate because my BP rose dramatically (they start large-molecule infusions really slow so as not overwhelm the heart).  I kept feeling worse and worse and it was getting harder to breathe, so I asked the nurse to check again that the infusion I was receiving was the exact same one that I received the last time, and that's when she noticed that they were different.  She was able to get a hold of my doctor and we stopped the infusion (thankfully, because it feels as though it would've ended badly for me).  I felt REALLY wonky after we stopped (it was difficult to talk and I was having trouble walking), so I hung out in my room for another hour, just resting and waiting for a bit of normalcy to return to my body.  I hadn't eaten anything since I threw up earlier in the day, and it was 6:30pm by the time I left the infusion center.  I stopped and got a baked potato, ate it in the car and then drove home.  What a fuck of a day.

• Tuesday:  I woke up with a headache, so I took a couple of Tylenol at 7:00am and headed back to bed.  I woke up at 9am to take my morning meds, and a half-hour later I was vomiting again.  I'm going to overshare for a moment here and tell you that I pee myself whenever I vomit.  Adam's kidney is situated kind of on top of my bladder, and no matter if I make it to go to the bathroom before I vomit, it still happens.  It is the most demeaning thing that's happened to me (and that's saying a lot) and is especially worrisome since I vomited in the morning 2 times now.  It didn't happen at Mayo, which I can't really explain except that I was sitting in a bed with my legs up instead of hugging the porcelain god.  No matter....it sucks, it feels horrible, my eyes swell shut and my lymph nodes swell so much in my neck that it nearly disappears (my neck, that is).  I'm loud when I do it, and it terrifies my daughter when she hears it.  Imagine, for a second, what it must be like for Izzy to watch this and hear it but not know what it all means?  God, it rips me to pieces every day.  I showered quickly, washed my clothes, and then headed to the sofa downstairs and closed my eyes for the rest of the day. I somehow managed to find the strength to drive to Izzy's school to drop off her guitar (guitar lessons on Tuesday) and then drive back 2 hours later to pick her up, but was horizontal every other moment of the day.  I started to worry that I should go to the hospital by the end of the evening.  It was getting harder to breathe, and my fistula arm is still swollen, but I was worried about the risks.  If I go to an emergency room, and tell them everything that's wrong (swollen fistula arm, reaction to IVIG 2 days prior, a hemoglobin of 8.4 and a creatinine of 3.6), they're going to freak the fuck out and possibly make decisions that could do more damage, and I honestly didn't think I had enough physical energy to fight for myself.  Because that's what it takes.  There isn't anyone else to fight for me.  Joacim has pretty much no idea of the specifics of it all, so he isn't any help.  I have to be fully aware of what's going on before I step willingly into an emergency room because I just don't trust that they'll know what to do.  I took some medicine for a migraine and nausea, and was able to get some sleep last night.

• Wednesday:  Today I woke up without a headache, and my face is slowly returning to normal (I don't even bother to take pictures of the weird things happening to my face because it's just the same variation of freaky and awful).  My chest hurts like hell, and the cough is deep, but I'd still rather wait until I go to Mayo tomorrow to have them check me out.  I'll make it through this day.

• Thursday:  I have PP at 9:00am, and then we're going attempt the IVIG infusion again at 11:15am.  I'm thinking about driving down early to be there at 7:30am to see if I can get the ultrasound done early so as to not have to drive down again on Friday.  It will make for a very long day, but worth it if I get it done.

• Friday:  My plan for Thursday probably won't work so I'll need to drive down for a 1:30pm ultrasound

• Monday:  Another PP treatment and a 2nd dose of IVIG.  Another full day spent at a Mayo.

• Wednesday:  I have a 3:30pm appointment with the vascular doctor/surgeon.  This is the ONLY time he available and in clinic until January, so there's no changing this one.  But Joacim will probably come with me because I'll be a wreck, which means I'm going to have to find someone willing to take care of Izzy until we get back.

• Thursday:  Another PP appointment and most likely a blood transfusion.   Again, I'll be here all day.  It's very concerning that I'm so chronically anemic.  My last blood transfusion was near the end of September, and I give myself a shot every Sunday to boost it, but nothing's working.  This is a big problem in the long run because no one knows why I'm so anemic, and it's unrealistic to expect to get a couple of units of blood for the rest of my life.  And my blood pressure will get really high so we'll have to keep the flow rate really slow and it will take foreverrrrrrrrrrrrrr.

It's impossible to stay positive right now.  I'm not even going to pretend on here to see a bright side.  There isn't one.  Every bit of it is being sucked out, and there's no replenishment of good stuff.  I can't get the full joy of watching Izzy do all of these amazing things because I'm stuck in thinking about all of the ways my health limits her and all of the things that she'll do in her life that I'm going to miss.  A few weeks ago, I made the ridiculous comment that if things continued to stay relatively stable, I could see trying to go back to work for a day or two per week.  That seems completely ludicrous right now.  How in the hell am I supposed to be hopeful about ever going back to work when I'm spending so much time trying to stay alive???  Do anybody have any idea the emotional and physical effort that is required to keep doing this with literally not even a faint glow at the end of the tunnel????????

I'm pretty sure that my surgeon is going to want to do a surgery on my fistula to make it longer by adding a graft (grafts don't last as long as fistula's, so this sucks), or he's going to want to create an entirely different one higher up on my arm (also terribly shitty).  That means another surgery (most likely before Christmas) which I'm terrified of.  It also means 3 Christmases in a row now of some sort of medical nightmare (2014:  started PD, 2015:  recovering from transplant still as well as surgery to create peritoneal window to drain excess fluid, 2016:  fistula).

The last surgery on my fistula was INCREDIBLY painful, and I can't imagine trying to enjoy the spirit of the season in that much pain.  How in the hell will I wrap a present?  How will I cook?  How will I enjoy anything?  

I shut down the automated service I used that posted these posts to Facebook.  I think people lost interest in my story when they finally realized that there would be no happy ending to this.  Maybe that's why I stopped blogging too...because I felt like no one really cared.  I am sure that people's intentions are good when they say things like "sending prayers" but honestly, prayers aren't going to help me, prayers aren't going to give me a hug when I need it, prayers aren't going to cure my FSGS and heal this kidney.....I need a huge medical breakthrough.  That doesn't just go for me, but for anyone dealing with a bad situation.  There are just so many other things that people can do.

This post turned out to be much longer than I had anticipated.  I have months of things I want to write about, but I know I'll never be able to catch up, and I've missed a lot of the emotions I was swimming through at the time.  I know I'll regret it, but it couldn't be helped.

I have a favor to ask...

Hi all!

It's been awhile since I posted an update on my health, but don't mistake my silence for good news.  Things aren't going all that well right now with my kidney, and it gets hard to post updates.  Sometimes because I don't feel well.....sometimes because it's too depressing.....a lot of the time it's because I just feel like I've run out of things to cover.

I'm still doing everything I can possibly do to keep this kidney running, which means 2-3 trips to Mayo every week for plasmapheresis.  It never gets easier, and it's unlikely to get better.  I'm just trying to continue to slog through it and trying to figure out how to squeeze some joy out of this lemon.

But the thing that motivated me to actually/finally post something is my friend (and kidney donor) Adam.  You see, he started a team for the 2016 NKF Twin Cities Kidney Walk called #FSGSSucks.  He and Noel (his wife) have been working really hard to meet an aspirational fundraising goal of $10,000 this year and I've not done a great job of using my voice towards the effort.  They've done a fantastic job so far, but there are still 3 days before the walk, and I'd like to ask anyone that reads this to consider donating to the team.

It doesn't have to be $50 or $100....seriously.  ANY amount will be greatly appreciated.  Adam and I had lunch the other day and were talking about how many people were going to physically join us this Saturday for the walk, and I was kind of blown away by their kindness.  I'm not usually a person who enjoys crowds, but I'd LOVE a crowd of people around us this Saturday for the 2016 kidney walk.  If you can't join us in person, will you please consider donating to our team site http://donate.kidney.org/goto/fsgssucks?

Also, please wish them the best of luck as they are BOTH running in the 2016 Medtronic Twin Cities Marathon on Sunday!!!

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!

My current state is: WORRIED

I have been retaining more and more fluid as the days have gone by, and my usually steadfast solution hasn't worked to start fixing my problem.  Usually, when my weight inches up, I take 40mg of lasix (20mg in the morning and 20mg in the afternoon) and the water starts getting pulled off, but not this time.  I actually GAINED weight when I did it this time.  Even 3 days at 40mg haven't done anything.  I think my perception of weight is horribly messed up now.  Since I started PD almost 1 3/4 years ago, I've had to take my weight every morning and every night, so I'm VERY in tune with small fluctuations in it.  But sometimes these small fluctuations seem to grow insanely large in my head.  I think I can sometimes get into a situation where I see the weight shift over the course of a day or two, and I start freaking out.  It's hard not to, because I know how hard it can be to pull the weight off once it's there.  Then I start doing stupid things like restricting what I eat in order to make sure that the number on the scale isn't freakishly high when I weigh myself before bed.  I know it's wrong, and I'm glad I can self-correct it before it gets out of hand, but that doesn't change the mental battle that's happening.  I just wish this was one thing I didn't have to worry about, but apparently my Genie is locked in a damn bottle somewhere and not granting me any more wishes than the one I received on November 3, 2015.

My blood pressure has been weirdly high since last week also.  No matter what I do (go for a walk around the neighborhood, or even the normal lowering that occurs during plasmapheresis), it's not budging, and is running pretty high 160s/100s.  My diastolic is rarely below 100 anymore, and I can feel the physical affects.  And the only thing that's really changed is that I'm on an antibiotic for a sinus infection, I started taking Flonase and my doctor has me re-start taking sodium bicarbonate to level out the acidity in my body (because if your acid levels are too high, your body starts to leach calcium from your bones to remedy).  I feel pretty confident that the antibiotic (amoxicillin) isn't having an effect, but I stopped taking Flonase temporarily because I've had trouble with some post-transplant approved allergy meds (I'm talking about you, Claritin), and I reduced the sodium bicarb because it can cause some fluid retention.  Nothing is helping and I feel like I'm drowning from the inside.

I noticed my urine output has been decreasing the last couple of days, which is easy to notice if you drink 3L of water a day.  I was a little shocked when I realized it had been almost 4 hours since I last went to the bathroom, and I usually can't go more than a couple of hours.

At plasmapheresis today, I was able to see my doctor and talk about it with him.  He noticed that my prograf trough on Tuesday came back at 10.9, which is a huge jump from the previous Tuesday's level of 7.1.  That may explain why my creatinine also rose (from 2.3 to 2.5) during the same time frame.  My doctor believes that, by lowering my Prograf dosages from 4mg 2x/day to 3mg 2x/day, it'll be enough to jump-start the kidney again, lowering the creatinine and assisting in fluid removal.  He said that if I don't see results by Sunday, that I can take more lasix.  Because I completely trust and respect him, I'll wait, but it's hard to not feel like I'm dying right now.  I'm not being dramatic either.  It all feels very, very awful.  The swelling is not only in my belly, but it's around my ribs and lungs, and moving into my limbs.  I had to loosen my watch today, and most of you know how skinny my arms are.   I'm sluggish, confused, and unable to focus or have a conversation.  At this point, I can pretty much just lie down, which is what I did when we got home today.

Oh, and did I mention that we have friends visiting us from Sweden right now too?  Luckily, they are fantastic and completely understand, but it's still frustrating to me to not be able to perform BASIC human functions like parenting and communicating and enjoying an evening on he deck on this BEAUTIFUL evening having a chat and a glass of wine, or a bike ride to the ice cream store after a lovely day.  Things I excel at right now are sitting, lying down or staring.    Izzy and I started watching a track and field competition on TV, and there was a 41-year old man getting ready to run the 10,000m race.  This guy is my age getting ready to compete for a spot in the Olympics.  I'm 41 and lying in bed at 8:00pm on a Friday night.  I'm not saying I'm comparing myself to an Olympic athlete.  I'm just comparing myself to anyone in my age bracket that's able to live their happy normal life.

My doctor scheduled an ultrasound for next Tuesday to see if these might be signs that I have another fluid pocket near the kidney ureter/blood supply like I did earlier this year.  If that's the case (and I hope above all hopes that it's not) then it's an easy fix for the surgeon but another surgery recovery for me using the same incision (that would make 4 surgeries in this particular area).  I will try very hard to not get ahead of myself and focus on Sunday.  This may be very hard if I wake up tomorrow morning feeling like I do tonight, because it doesn't get better during the day which means tomorrow night will suck even more and I'll miss out on even more....okay, deep breaths...

I wanted to end this post on a positive note, but then when I figured out what I wanted to write about, I realized that this would be an extraordinarily long post that most people won't read, so I'm going to break it out into another post following this one.

1/week plasmapheresis is apparently not for me

It's been a rough few weeks for me.  I posted before about that I was going down to 1/week plasmapheresis to see how well my body handled the reduction and we've been doing it for 3 weeks.  The first week I did PP on Wednesday and had labs done....all was god, but I couldn't help notice that my chest and throat were getting a little scratchy.  That Friday I knew that I was pretty sure I had a sinus infection.  Weirdly enough, that evening I took my meds like normal, but 30 minutes after it I started vomiting (several times).  I have no idea why other than it happens sometimes when meds hit my stomach and there's not enough food in it.  I don't know about you, but I don't eat OR drink enough when I'm sick, and that was probably the reason why but who knows with this wrecked body.

I woke up Saturday for Izzy's soccer game and felt like a hammer had hit my face because the sinus infection was in full swing.  I just suffered through it over the weekend because I assumed I was going to be told it was viral and there was nothing that could be done.  By Monday I was pretty sure I had developed pinkeye, and Tuesday I woke up with my eyes crusted shut, which equals confirmation for me.  I DID go to urgent care for the pinkeye, and she also gave me a prescription for amoxicillin just in case I needed it, but she did think it was viral.  Honestly, I didn't want to take it if it wasn't going to do anything except contribute to antibiotic resistance, so I headed to CVS and bought a sinus rinse kit.  It's like a neti pot, but without the whole "HELP!!!  I feel like I'm drowning!!!" thing.  And I just rinsed the HELL out of my sinuses, which honestly DID make me feel a little better that day.

I went to Mayo the next day (which was a Wednesday) and saw my doctor.  I told him about my sinus infection/pinkeye and the prescription that the urgent care doctor gave me, and he told me to take it, so I high-tailed it to the pharmacy after my session was done.  I was feeling pretty miserable and my labs reflected it as my creatinine had risen to 2.4, which is a pretty significant jump.  My doctor assumed correctly that I probably hadn't eaten or drank much, so he instructed me to stop taking the lasix and to seriously hydrate, so I've been making it my mission to drink a minimum of 3L of water a day.  Stopping lasix terrified me because of the swelling that I knew would soon follow.  I've been pleasantly? surprised that the swelling hasn't occurred in my lower legs/ankles/feet like I had imagined.  But I'm also disgusted to report that it has relocated to more undesirable locations, namely my abdomen and my face.  I'm not swelling anywhere else.  And I've gained 5-6 pounds since we started (and 13.2 pounds overall since the fistula surgery 7 weeks ago), and it's all sitting in my belly.

It's been an interesting week of facial swelling as well.  Every day it gets a little bit rounder and my eyes get a little bit puffier.  Two days ago, I woke up feeling like a hammer had hit me across my left sinus cavity, and when I looked in the mirror, I was horrified to see that JUST the left side of my face was swollen.  My cheek was noticeably round, so much so that my upper lip drooped, and my left eye was nearly shut.  It took nearly an entire day of gravity to make my face look not-so-horrifying.
Sometimes, when I'm lying on the sofa surrounded by my thoughts, I wonder if I'm imagining it all.  I think, "Well, maybe if I just suck it up and go for a walk, I'll magically feel better."  And then I go outside and walk, and feel even more miserable when I'm done.  It's so typical to want to push yourself....to try to disprove your illness' grasp on your life, but it takes a smart person to know when you should pull yourself up by the boot straps or wrap up in a blankie and stay horizontal.  Luckily I'm smart ;)

Fuck, I hate it.  I hate how it feels in my body right now.  I can tell it affects other things like my memory and ability to focus.  Hell, it's taken me an hour to write 2 1/2 paragraphs!  And don't even get me started on the heat.  It was a really hot weekend here.  Izzy had a soccer game on Saturday, and it was in the upper 80's before noon, and fairly muggy.  I couldn't sit in a chair because I'd start sweating through my clothes, and the sun felt like fire.  I had a golf umbrella that I stood under, covered in sunscreen and sweat, and it sucked the life out of me for the rest of the day.  I came home and did nothing by lie down, and it seems like every day I wake up with just a little bit less energy than I had the day before.  It all feels very reminiscent of how I felt the month before I started dialysis.  I mean, this is a tired that's indescribable, but yet I keep trying.

I had plasmapheresis this morning as well, and my labs haven't improved, even after hydrating and stopping the lasix.  My blood pressure has been steadily rising the last week or so, and today it was super high at 171/91 (which didn't decrease like it normally does during the session).  My creatinine is 2.3 now, and my albumin has tanked to 2.0 which explains the abdominal swelling.  At this point, we could increase the lasix and pull off the extra fluid, but that would increase my creatinine.  My doctor could increase the prograf dosage, which helps by limiting blood flow to the kidney.  He'd probably try this if my creatinine were below 2.0, but it would be dangerous at this point because prograf can be toxic to the kidney as well as being an immunosuppressive.  So our plan is to do PP again Thursday and Friday, and schedule it for M, W & F of next week.  I'll do labs on Monday to help solidify the plan.  We want to get back to 2/week but that will depend on how quick my body responds to getting slammed by PP this week.  Fingers crossed for a quick response, because at this point I'll be driving to Mayo 4 times next week.  I have my 8-week follow-up appt for my fistula which includes another ultrasound that hopefully doesn't take an hour this time, and I'll also meet with the surgeon to see what interventions need to be made to get the fistula where it needs to be to start using it.

I've definitely taken 2 steps back since the last post, but I sincerely appreciate my doctor's quick response and pulling together a plan quickly.  He has another patient that is just like me which I find oddly comforting for me but horrifying for the other patient.  And my doctor must find it all extremely frustrating.

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.

I dread tomorrow....

Tomorrow, I'll be going to Mayo for a planned AV fistula surgery in my right wrist (hopefully).

I've been dreading this day since the middle of 2014 when I realized I'd need to be on dialysis.  It was the fear of a fistula that was probably the primary reason I chose to do peritoneal dialysis (among several other factors).  Go ahead, I dare you to Google AV Fistula and look at the images and not freak out a little.  They're mostly horrifying, and I just couldn't handle the thought of that in my body.

But things have changed now and it doesn't seem as though I have a plethora of choices.  Before I explain, please understand that my transplant is STILL working, and I AM NOT on dialysis at this time, and HAVEN'T been since the transplant.  I do, however, do plasmapheresis twice a week right now, and that requires a large access, which is why I still have a large access via my chest catheter that I've had since the middle of October, 2015.

The catheter itself is still functioning very well.  The staff at Mayo do an EXCELLENT job of taking care of it, and I do a good job of doing the same while at home, which includes a rather arduous pre-shower routine and a significant amount of saran wrap and tape.  This catheter hasn't bothered me so much in the winter because I've been able to keep it covered so no one can see it.  It doesn't bother me that people can see it, but what DOES bother me are the strange looks or the awkward, sometimes intrusive conversation with strangers that I have to have.  Most of the time I'm happy to engage in any conversation about the transplant, but there are times that I just don't want to, and there are enough of those to make me consider the fistula.

When someone sees this thing sticking out of my chest, they can't help but look.  Hell, I'd do the same thing if I were in the other person's shoe.  It's just that I don't want that to be the very first thing people see, and it usually is.  And I hate it.  It makes it IMPOSSIBLE for me to be anything other than a sick person in their eyes, and I'm just done with it.

That's not to say that people won't do the same thing with the fistula, which they will, but it's location won't make it the first thing that people see (hopefully).  I'm having it put in in my right wrist which is good for the convenience of it.  Having a dialysis access point that isn't easily accessed in every season isn't ideal, and having one in my upper arm in winter is dreadful, because I ALWAYS have to plan what I wear around it, and honestly, I don't want to have to do that.  Normal people don't have to do that, and I don't want to either.

In my wrist, it should be relatively easy to access no matter the season.  Another good thing about starting in my wrist is that once this fistula fails, then they can still try other locations on the arm further up, which is good because I'd like to avoid my left arm as long as possible since I'm left-handed.  And ANOTHER good thing about getting it now is that the nurses on the aphaeresis floor will be the first ones using it.  Plasmapheresis is run at a MUCH slower rate than dialysis (800 ml/min vs. 400 ml/min), so I'll get to sort of "ramp up" I guess.  Plus, the nurses on the floor are amazing, kind and gentle, and they'll do everything to get me comfortable with it.

But the MAIN reason I'm going forward and doing this now is because of Izzy.  I lost a lot of fun time with Izzy while I had my PD catheter and previous chest catheters because I couldn't get in the water (I did on vacation but that required herculean efforts sometimes).  Anyway, I don't want to rob Izzy or myself of another summer of pool time and the lake and whatever else.  I'm tired of missing out, and I'm tired of her paying the price.  

I guess I should try to explain what a fistula is.  According to Wikipedia, an AV fistula is an abnormal connection or passageway between an artery and a vein.  So I guess it's not quite accurate when I said I'm having my fistula put in; it's more accurate to say I'm having my fistula created tomorrow.

Image from:  Blausen.com staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762. - Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=31339214

I worry about several things:

• the surgery itself (I have PTSD after the last surgery I had, which I haven't blogged yet as a lot of things have happened in the last 6 weeks and I've felt crappy through most of it and haven't felt like blogging)
• the way it will look - the point of the fistula is to create a high blood velocity so that I can adequately dialyze (normal velocity is 85-115 ml/min....a month after the surgery it'll be 700-1000 ml/min), which means BIG VEINS.
• I will be able to FEEL the blood flowing...it's called the "thrill" (which makes it sound so much better to some but makes my stomach churn).  There will never be another peaceful moment in my body, as I will always feel it
• I will be able to HEAR it - fuck, this just messes me up
• I'll "kill" it by accidentally putting a ponytail holder around my wrist like I've done a bajillion times before.  That action alone could cut off circulation enough that the fistula essentially collapses, which would require me to get another chest catheter while waiting for another fistula.
• that it won't work at all....sometimes fistula's don't mature (the process takes 1-2 months) but for some people it just doesn't work.  What if I'm one of those unlucky people???

This is what my right wrist looks while I'm sitting with my arms essentially parallel to the ground

And here's how it looks while down by my sides (horizontal to the ground)

Do you see how that being pops out?  And that's only at 85-110 ml/min!!  What the hell is it going to look like at 700-1000 ml/min?????  Fuck, I don't want to find out, but I guess I will soon enough.  My check-in for surgery is at 9:30am, and I'm sure I'll be a mess.  I'll get the fistula tomorrow, and in 1-2 months it'll hopefully be ready to use, which is just in time for Minnesota's summer to kick in.  Once we know it's working, I'll be able to get this chest catheter removed and on to some fun in the water again!!!  And no more arduous showers!!!

Please, send the good juju my way tomorrow, and to my surgeon.

2 years.....maybe?

I REALLY wish I would be more consistent posting here.  I used to block off an hour every Thursday night to write a post on my other blog and it was great.  For so many reasons I find that habit nearly impossible to stick with on this blog, and it's immensely frustrating.  So much happens between each post that I am daunted by the task of trying to remember and document it all.  I honestly wish that I'd stop putting myself in this spot, yet I continue as it's been nearly 20 days since my last post ;(

I've been continuing along with regular plasmapheresis since my last post.  I was at 3 days per week, and now we are trying to wean down to two days per week which is better, but it's still 8 hours of driving every week.  My schedule is Tuesdays and Fridays at this time because we're finding that Mondays are starting to get difficult to get me scheduled in PP.  As I've explained earlier, they have to do stem cell patients first, and there are apparently a lot of them lately.  Actually, there are a lot more people seeking help at Mayo right now than ever before.  Even the doctors and nurses are saying that they usually see a dip in the winter because people don't want to come to Minnesota then, but that wasn't the case this year.  So a schedule of Tuesdays and Fridays works right now.

We've been noticing that my hemoglobin has been really low the last few blood draws...hovering around 8.4.  I had one weekend where we were shuffling Izzy around to multiple birthday parties on a Saturday and all I could think about was the sofa at home with a blankie.  If there was an app where I could change the channel on the TV with my mind, I'd be all over it because my arms were tired.  Everything was tired.  And no matter how much I wanted to go go go, my body kept saying no no no.  My doctor ordered 2 units of RBC's (blood transfusion) and I had them on March 4th at the infusion center.  The infusion center has become one of my least favorite places lately because the infusions I get are long and boring, and now something always seems to go wrong with my body while I'm there, and this was no exception.  My body does not like blood products.  At all.  And the more I get them, the more extreme the reaction, which usually includes hives and super-high blood pressure.  The nurses started the first unit, and within the first 20 minutes I could feel something happening, but it wasn't awful and I was tolerating it, so I went on with it and made it through the first unit.  Then they hung the 2nd unit, and things started to change.  The nurse took my blood pressure and it was higher, but within my crazy bp range so I wasn't too worried.  I was warned by my doctor that my bp would rise a little, so I still felt okay.  But then I started itching a little, and I felt a hive on my left upper torso.  Just one, but it was a relatively big one, and that's all it took to stop everything.  It's protocol, but it's still frustrating.  We ended up losing an hour of time waiting on calls to doctors and meds (IV benadryl and solumedol (steroids).  Eventually things started rolling again, but slow, and I didn't end up getting out of Mayo until 7:30pm that night.  It ended up being an 8 hour infusion, and I ended up being there for 12 1/2 hours that day.

Somewhere between the infusion center and Applebee's (where I stopped to get something to eat because I hadn't had much that day) I realized that I lost my debit card, so I spent the snowy and windy drive home trying to convince my bank that I was who I was saying I was and to cancel the card and send me a new one.  Since Joacim has taken over the banking, I couldn't answer the simplest questions, and I was starting to think they thought I was a fraud case, but eventually I made it through the list of 7 questions and apparently answered enough right that I passed the test.  A pain in the ass, but I'm glad for the precautions.

Getting IV solumedrol is no picnic.  I'm glad that it stops the reactions I get.....SUPER glad, in fact, because they're miserable.  But the next 3 or 4 days after receiving the solumedrol is not fun.  Let's revisit some of the side effects:

• high blood pressure
• sleeplessness
• noticeably red face that feels very hot to the touch
• facial swelling

In previous cases it's looked like this:

red face, but not too much swelling

Can you see the difference in the width of my nose?

 Here's how I looked 2 days after the steroids this time:

No red face, but nose swelling again.

I didn't take a picture of my red face this time because we took Izzy to a movie (Star Wars, finally) so I could get out of the house but hide my weird face.  I'm glad it all goes away, and I'm glad that this drug is available to me and that it works, but MAN, I wish the side effects were less invasive to everyday life.

The great thing about all of this hassle is that my hemoglobin went up to 12 by the following Tuesday.  I.  Felt.  Amazing.  On Monday (March 7) I had a stupid amount of energy, so much so that I finally took some of the Christmas lights down.  That task has been completely out of my reach.  The subtle taste of spring we were experiencing didn't hurt either.  Even Tuesday, at Mayo, I did a lot of walking around during my waiting time, just soaking in how good I felt.  Last week was, by far, the best week I've had since Nov 3rd.  Absolutely no doubt in my mind.  I had also been getting weekly Aranesp injections at Mayo, but the waiting time was killing me at the infusion center, and I could totally do these at home, so we got that switched around now which is just one more thing within my control.

The one that doesn't appear to be fully within my control yet is my blood pressure.  I had a biopsy scheduled this past Monday as protocol for 4-months post transplant.  We also wanted to see if the FSGS was visible in the biopsy slides now, as I've been spilling a lot of protein for a while now. The last biopsy I had was on December 22nd when I had my peritoneal window surgery, and no signs of FSGS were there.  We know it's back because of the protein spillage and my history, but when it shows up in the biopsy it means it's more advanced, and we're all wondering if it has.  Logistically for us, it's a nightmare.  We have to kennel the dogs, find a kind soul (thank you Jessica and Blake) to watch Izzy, get her on the bus, take her to gymnastics, feed her and nurture her, and Joacim and I have to stay in a hotel in Rochester due to the risk of bleeding.  After working through all of that, I had it scheduled for Monday.  I did labs early in the morning, and then met with my PA to review them (but they weren't ready yet), and my biopsy was scheduled for 12:45pm.  We had checked my BP in my PA's office, and it was a teeny bit elevated, but it normally is at Mayo (I have an EXTREME case of white coat syndrome now :(  ).  When we checked in in the pre-op area for the biopsy it was a little higher, and each subsequent reading got higher, until it was 171/100...in other words, TOO high to do the biopsy because the bleeding risk is even greater.

I was frustrated, which doesn't help my blood pressure.  I went back upstairs to talk to my PA, he prescribed a quick acting BP med, and I took my regular 2:00 meds plus a Xanax, and went back at 3:15 to try again.  Blood pressure EVEN HIGHER this time.  So the biopsy was cancelled for the day.  We did get an ultrasound done though, and that turned out good.

I felt so guilty for all of the people I inconvenienced.   I know the whole BP thing is out of my control at this point, but it's MY body that keeps failing on me at every point, and there's no escaping the guilt I feel when Joacim misses work and my neighbors have be inconvenienced.  I honestly don't know what happened with my BP.  It's been well controlled at home for the last 2 weeks, so I don't know why, which frightens me because I can't say it won't happen again.  We're going to try again next week (I think) and I'm going to double up on BP meds, take the xanax earlier and ask for sedation (which sounds like a stupid amount of overkill from a couple of big needle pokes) but it's necessary.  We NEED to see what's happening with the kidney.  I could be experiencing rejection and not know it yet because it isn't showing up in the labs, so that's another source of worry.

I did a 24-hr urine this weekend, and I'm currently spilling 14 grams of protein.  It's awful, but it is what it is.

I had a blood draw and random urine this morning.  I have really great veins (not to brag or anything :) but phlebotomists tend to use them...a lot...and they're tired now.  It hurts when getting poked, and I'm having it done two to three times a week now, and they're just tired, so I asked the phlebotomist to use a different vein and showed her the one I wanted to use.  And then she said "but this is a good vein" and did exactly the opposite.  It was a misunderstanding at the end I realized, but it still sent me reeling.  I literally had to go find a quiet corner after it was done to just cry.  I am a walking a tightrope of emotions and sometimes, unpredictably and usually inconveniently, get the best of me.  There's no use fighting the tears and crying, because it just builds and my bp rises and bad things happen.

My doctor and I had a good amount of time today to discuss the status of things, and we both agree that the numbers aren't encouraging.  I'm slowly spiraling and the kidney is starting to show it.  He's has been and continues to be very nervous about my chest catheter, and I continue to be annoyed by it.  I've talked about a fistula before a few times, but he wasn't ready to discuss.  I think he truly fears that I feel like he's giving up on the kidney if we talk about things like that, but nothing could be farther from the truth.  I have such admiration and respect for him for trying so hard and being so invested in my long-term outcome.  I've realized he's a wildly optimistic man, and that has been exactly what I need as events unfold.  I continue to need that, but I also need a dose of realism and a plan.  He said today that I'd probably get a couple of years out of this kidney. He's can't predict it...no one can, but we both know that this beautiful kidney will fail sooner than any of us want and I'l be back on dialysis.  Peritoneal dialysis won't be an option for me this time, sadly, so it's a life of hemo for me.

I miss working out.  I've been slowly starting yoga, but I can only go so far because I start sweating, and that's kind of a no-no with the chest catheter due to risk of infection (at least the kind of sweaty I want to get with hot yoga eventually).  I can't swim with it..hell I can't even take normal shower or bath with it.  And wearing a bra is so hideously uncomfortable because I have to tuck it in the bra, and there are some really sharp edges.  It's also a huge source of infection, even though mine still looks great.

I will be able to use the fistula for plasmapheresis, and there's something appealing about getting use to using it at a lower run rate(60-90) than what's typically done for dialysis (300-400).  I'm terrified of fistulas, of course, because the pictures I've seen are absolutely hideous, but you're all going to have to help me get the hell over that because it will become my lifeline.  Somehow I'll have to embrace it, and you all are going to have to look at it because I won't hide it.  So I have an ultrasound scheduled next week to map my veins for the best location, and I'll be meeting with a surgeon to discuss the surgery itself and what the fistula will look like because, even though I look like hell most of the time, I'm still vain deep down inside.

Also, my hair is falling out at a pretty good amount now.  I posted about this the other day, but here's a comparison from 2 weeks ago to today:

 


Things are tough, no doubt about it.  But when I physically feel better, as I have the past week, I am MUCH better at handling all of the adversity.  A fistula will allow me to go swimming with Izzy this summer.  They take 6-8 weeks to mature, which means I'll have this chest catheter a least that much longer, but I'd rather get this moving right now as opposed to starting in June and missing out on another summer.

I saw this on Instagram today (@elephantjournal) and it sums up how I feel perfectly.  I want to get to the point of being healthy enough to enjoy that beautiful place.  And I've realized that the best word to describe me is not "strong" or "warrior"...it's resilient ((of a person or animal) able to withstand or recover quickly from difficult conditions.).  Yes, that's definitely me.

A photo posted by Elephant Journal (@elephantjournal) on Mar 15, 2016 at 8:41pm PDT