1 year kidneyversary

 Today marks one year since I received a second kidney transplant, and the thing people will wonder is "how am I doing"? And, as has always been the case on this blog, the answer isn't simple. When I first started writing this blog, it was so easy to sit down and pour out my thoughts, but now it seems almost impossible. I don't know if it has something to do with my inability to focus much right now, my absolutely "too many tabs open in my brain", or if I'm just emotionally dead inside.  

How can 365 days past seemingly so quickly? I'm going to venture to say it's because, as the last time, I'm still under transplant care. Over the last year, I think there have only been 4-5 weeks that I haven't had an appointment at Mayo Clinic. I just read the last post on this blog, when I was 11-days post transplant and had to laugh a little. This was clearly written immediately before we saw the recurrence of FSGS again.  Back then, 2 weeks post-transplant, Joacim and I were just talking about amazing it felt to not have any protein in my urine. And literally the next day I did labs and they showed protein in my urine. So that's why all of the appointments...we're still trying to keep it at bay and protect the function of the kidney.

I'll try to recall everything we've done so far, but it's been a lot:

• a kidney biopsy to confirm FSGS recurrence
• an infusion of obinitumumab to knock out my B cells in the hopes that it would work to beat down the FSGS, which did knock out my B cells but not the FSGS
• 9 weeks of LDL Pheresis (2 days a week of 3 weeks, and then 1 day a week for 6 weeks). Initially this was to be part of a clinical trial where the principal investigator was my transplant nephrologist, but the company sponsoring the trial with to dis-include me due to me taking thyroid medication. This was annoying and stupid, but I was still able to complete the course of treatment, but it didn't have a significant effect on the amount of protein I was spilling.
• so then we started plasmapheresis again. This didn't work much for me the last time, but this time it makes a significant positive impact on my protein spillage. So much so that sometimes my team has gotten a little over-confident with my results but also given me a much-needed break from Mayo (sometimes 3-4 weeks at a time), only to have my protein soot right back up
• After every plasmapheresis treatment (of which there would be 2-3 per week) I would do a 2 hour infusion of IVIG. After my last transplant we did a lot of plasmapheresis too, and a few IVIG infusions, but likely not enough as I became quite ill with a lung disease/disorder similar to something called bronchiectasis. So now we do IVIG after every plasmapheresis treatment to ensure I stay healthy, which has worked very well so far.

All of this was before Christmas

• I had a nice break from Mayo over Christmas...4 week in fact. But my protein levels got quite high, so we hit plasmapheresis hard after New Year's. We started out with 5 per week for 1 week, and then 3/week for 3 weeks, then 2/week and then 1/week for a couple more weeks, with a 2-hour infusion after each one of those.
• Somewhere in the middle of that we started a new medication called daratumumab. When my doctor talked to me about this medication and how it was to be administered, he said 16 weeks of an injection, however that was not the case. The first infusion was 6 hours or so, and it started on a Friday after plasmapheresis and IVIG. I was not prepared for this, hadn't had lunch and by the time I left Mayo at 9:30, every thing was closed. I didn't return home until 11:30pm that night, and I was enraged and exhausted. I even called the Mayo Patient Experience number to complain about this...the lack of communication from my team. I'm not exactly satisfied that it affected anything, unfortunately.
• Somewhere in March I got another break. I was literally in remission from FSGS....a place I hadn't been since 2008 if. you can believe that. but after another longer break, protein shot back up and I was back to plasmapheresis and IVIG.
• It gets a little fuzzy in my memory here, timelines and all, but most recently I think we're still trying to dial in exactly how much plasmapheresis I'll need and how often. I had another dose of obinitumumab a couple of weeks ago. I've been having my labs checked at Mayo in New Prague (a 30 minute drive as opposed to a 2 hour drive), as well as having my site dressing changed on my catheter and IVIG infusions. When my protein gets too high, I'll do 1-2 sessions of plasmapheresis. The plan for the next few weeks is to do labs Monday mornings and then plasmapheresis/IVIG on both Monday and Wednesday.  

I feel like I'm suffering from a case of whiplash, going between periods of intense treatments to periods of home life, and it's been difficult. When someone asks me how I'm doing, I have no idea what to say. I'm happy that my kidney is still functioning, but it is requiring a lot of me to keep it that way. There was an intense fear that I would have to go back to work. Both my long term disability and my social security disability start a clock 365 days post transplant to see if I'm healthy enough to resume working. I have some confidence that it'll be delayed now, but it's always looming. Honestly, when I first stopped working, I hated it. Didn't know how to fill all the time because if my available time was endless, then nothing was important. Now, after 11 years, I've figured that out and can easily fill a day. I carry a lot of the household things, plus my own health and Izzy's school stuff, and it fills the days quite easily. And, if I'm being honest, I don't really want to work anymore. And I can't imagine there are a lot of companies in today's environment that want to hire a 51 year old woman who's been unemployed for 11 years.

I've still tried to exercise as that's something that's always important to me, but it's not been easy because I've have this damn chest catheter since August (it was put it to start LDL Pheresis), and you can't really sweat with it because the bandage comes off and there's a risk of infection. I still sweat....it's getting to be that time of the year where it's inescapable unless I never want to go outside. Plus I'm perimenopausal now and suffer from frequent night sweats, so there's that. But hopefully next week I'll be able to get this chest catheter out and have 2 Apheresis PowerFlow ports put in. These are very similar to ports that someone on chemotherapy would have, but this one is designed for plasmapheresis access and flow rates. They are larger and buried under the skin, so the advantage is no dressings to change, normal showers where I can let the water run over my head, swimming in the summer and hot yoga classes. I'm worried that they'll stick out of my skin and people will notice them, but I had the same worries when I got my fistula and got over it pretty quick. Here's what the ports look like (I'll have 2 placed (one on each side of my chest, above my breasts, for supply and return):

Speaking of fistula, mine died. This one really pisses me off. I've been trying since my transplant to get a fistulagram (roto rooter) scheduled because my fistula has a tendency to want to close on itself. While on dialysis I'd get one done every 3 months or so because it did actually clot off one time. I had a revision done to widen the vein and had then done preventatively after that. But the thing about fistulagrams is that they require contrast dye to be injected during the procedure for visibility, but that dye is very hard on kidneys, especially newly transplanted ones, and there was no way my doctor was willing to risk it. So I understand the reason, but am still devastated that I lost it. I think my neph, and maybe transplant doctors overall, don't really concern themselves with fistula care because they don't think someone who had a transplant will need it. But I live in my real world with all of my real world experience, and it seems ludicrous that no one except for me was concerned about it. And no one really seemed to care about it after it died. I even went so far to have a fistula gram scheduled at Mayo for it, so Joacim took a day off to go with me, and I sat in pre-op for 2 1/2 hours past my appointment time, only for the doctor performing the procedure to walk in and say he wouldn't do it. I can't even go into it....it still makes me so very angry, but that's what happened. And so now, sometime in the future, I'll need to go through that whole terrible process of getting another one. More scars, less ideal locations....it all sucks so much.

Yes, of COURSE I'm happy that I'm not connected to a dialysis machine for 8-10 hours a night 4 times a week, but that doesn't make all of the rest of this okay. We still mostly determine my care on a week to week basis, so it's back to the terrible land of limbo, and wondering what'll happen next.  And communication at Mayo has been a mess as compared to the last time. The administrative burden of being a patient right now is tremendous....the number of phone calls and messages to get appointments scheduled, or times corrected, or to explain to scheduling the treatments I'm supposed to be getting has been insane, and easily the biggest source of my frustration. Just the other day, when I went to bed I showed 5 appointments in my portal, but the next morning there were 29. They keep trying to schedule things out weeks/months at a time, but we LITERALLY go week to week.  So that's 20+ appointments that are going to need to be cancelled/resheduled/moved, and that'll easily take 5 phone calls. And if I don't have to travel to Rochester and can do something in New Prague, then I'm going to go with that option. But in Mayo's system, that's a different geographical region which requires my doctor to write a separate order for.

And on top of all of this, I'm STILL actively managing my potassium and taking the same medications I took while on dialysis...ditto with my hemoglobin. Having Medicare this tine as my primary has been an experience. Mostly positive, but because of billing issues created by Medicare my secondary insurance company denies to pick up the remaining costs of 3 or my immunosuppressant mediations. That I'll take for the rest of my life.

I had hoped I would've taken a few trips that I dreamed about while on dialysis, but that hasn't happened either. I've only been to Tampa in August (steamy) to tour a college, and then to Indiana in January for a funeral. No Italy or Greece anywhere in sight. We've a trip planned for Norway this summer, but are concerned that the war in Iran will wreck that too, but still trying to be a little optimistic on that one.

And to wallow a little bit, I miss having someone to celebrate this momentous day with. Adam was my ride or die with our transplant (which we still celebrate in our own little way). I'd thought I could celebrate this with Joacim since it DID happen on his birthday, but he's on his annual fishing trip (the same one he was on last year). I was with my daughter all day but she didn't mention it. Thank goodness for  a good friend who sent me a sweet message today or else it probably would've gone completely unnoticed by the universe.

I'll admit that I haven't written a letter to my donor's family yet. I feel terrible about it, but I keep waiting for good news to tell them, so that they felt good about their decision to donate their loved one's organs, but I just haven't figured out what to say. I keep thinking something will come to me, and it will, but I'd like to write something more than "Thank You".

As always, I wish I had amazing news to write. But also, as always, I'm giving it to you straight, warts and all. But I do want to convey that this kidney is so much happier and healthier at this time in the process than Adam's kidney was at the same time. Why it's so different is anyone's guess, but the FSGS seems to be less aggressive this time, and I've had 2 different medications that I didn't have the last time that could be making a difference. It'll always be a mystery, but it's entertaining to hypothesize on what's different.

Okay, I think that's about all I can write at this time. Thank you for your kind thoughts, your prayers and for reading this far :) I'm still fighting and not about to give up.

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!

What's the scar look like?

I realized that I've never posted a picture of what the scar and everything else looks like, so here it is for those of you that want to be totally grossed out :)

Having a tunneled catheter is exactly as awful as it sounds

The first time I got my dialysis catheter was while I was inpatient in the hospital. The first one was a neck catheter, done in cases where it would be relatively short term and because I had been taking blood thinners.  Three days after the neck catheter went in, they put a tunneled chest catheter in, and then a day later my PD catheter went in.  That was a LOT for my body that week, but I was in great care and getting pumped with great drugs.  I was also so sick that anything was better than the way I was feeling before I went in the hospital.

THIS time, I've had a few more days to prepare for it, but it didn't help.  It's exactly as awful as I remember it being.  It hurts.  It burns.  It itches.

I started crying on the way to the hospital.  Then I got mad because they got me in over an hour late.   Then I started crying hysterically in the procedure room.  Then they gave me drugs and I focused on seeing if I could stay awake the whole time, but I must not have been able to do that because I don't remember anything after that.

This must've been taken while I was still out, or trying to come to.  I have some weird look on my face.  Killer photo.

And then I took this selfie because I wanted to see what it looked like this time.  I look like hell.  Hospital fluorescent lighting is as unforgiving as dressing room lighting.

I was so glad to get home, but it was a painful ride.  Joacim brought the recliner back into the loft, and my little table, and there I sat with my ice for the catheter, heating pad for my back and saltines for my tummy.

Izzy spent the day with my friend, Jess, and her kids and they did all sorts of fun stuff.  I'm very thankful that friends offer to help with Izzy when it comes to things like this, because it's no fun for her to sit in a hospital with me.  No mom is that cool.  Anyway, Izzy (and Joacim) were incredibly helpful last night, getting me whatever I needed.  We decided to watch a movie, and Izzy wanted to sit next to me, so she pulled up her rocking chair next to the recliner and we all watched Hotel Transylvania.

I got up to go to bed, and got awful chills, which I contribute to the anesthesia.  It was incredibly painful to my incision site....I started to get overwhelmed with pain and cold and then I just cried.  Izzy, unfortunately, was watching the whole time, and I could tell she was freaked out.  I mean, it was violent chills.  It's awful that she had to witness that, but once I got the heating pad back again and Joacim helped me hookup for my nightly dialysis (yes, still doing PD until Monday), we snuggled in bed until we fell asleep.

I slept terribly (no surprise).  I have no appetite as nausea is lingering.  I did eventually vomit this afternoon, and have spent the rest of the day lying in this damn recliner.  It's sunny outside, and I'm already tired of watching TV.  The hospital didn't send me home with any pain meds....they said to use Tylenol.  Laughable.  

Whine, whine, whine....I know, it's what I do now.

Woooohooooo! Chest catheter is out!!! (not without a little bit o' drama, of course)

Last week I had to do an adequacy test to see if PD was "working" for me.  This test consisted of doing a 24-hr urine on Sunday-Monday, getting a sample of my discharge fluid from PD that night, and then going into the PD clinic on Monday and having blood drawn.  Using this information, my PD nurse can determine what my adequacy (or Kt/V) is.  We were looking for greater or equal to 1.7, and my results were 3.99, so I guess you could say it's working very well for me.  The best part of all is that this cleared the way for me to get rid of this blasted chest catheter, so my PD nurse scheduled the procedure at a hospital closer to my side of town, and not the one that actually put it in.  Here's a picture to remind of how awful it was (the site of that totally grosses me out...I have no idea how I did not freak the hell out every time I saw it in the mirror).

Joacim and I got to the hospital for my appointment right on time.  I got changed into the gown and we hung out in the room.  Look how excited I was!

This, my friends, is a TOILET!  How very well-diguised it is!!!

And clearly Joacim was JUST as excited as I was to get this thing out.

After a while, the nurse came in and asked me what type of catheter I had.  I knew right then that this was a very bad sign, and I wasn't wrong.  Long story short, the hospital had received the surgery report of the neck catheter that I  had placed first.  Even though catheter placement is a standard procedure, apparently there are some differences in the methods that hospitals use.   There's a fabric cuff inside that the skin attaches to and holds the catheter in place, and because they didn't have the report, they didn't know where this cuff was.  Due to this, and the fact that I had taken my blood thinner (which they didn't tell me not to), the surgeon didn't want to do the removal.

To say I was disappointment is an understatement.  However, as with all of these things, adversity makes you stronger, right?  I called my PD nurse and told her what was going on, and she worked her butt off to get me an appointment THAT DAY at the hospital where I was when I started dialysis..the place where I got the catheter place.  I have no idea how we did it, but we made it across town in time.  Here's a selfie of me in THAT hospital.

These nurses weren't messing around.  Some of them even remembered me from my stay there in November!  Can I just tell you that, even though they were very reassuring, I was absolutely terrified of being awake.  I begged for sedation, but they wouldn't give it to me for this removal.  Here's what the catheter actually looked like under the bandages.  The 2 tubes at the bottom were for hemo-dialysis.  The black stuff near the point of entry was very thick stitches to help hold it in place.

Another selfie after I was prepped (nice face, right?)

And this is what it looked like once it was out.

And THIS is what the whole thing looked like!  Holy.  Hell.  The catheter was near my heart where there's a lot of blood flow, and being awake for that was just awful.  The doctor cut the stitches first (no lidocane) to see what it looked like, and then numbed the area (which hurt like absolute hell).  I couldn't really feel anything at all, but the thought of what she was doing made me sweat through the sheets.  Do you see that red thing in the middle of the tube?  That's the fabric cuff I was talking about....the doctor had to cut the tissue off that had grown around it in order to remove it.

And here is the happiest person in the world at that moment.  Of course, the pain came on later, but luckily I still had some vicodin left over from my hospital stay, so I took a couple of those and I was good to go.

So now I'm thrilled, because I should be able to start back up with yoga.  I'll take a few days to ensure it's healed, but then I'd like to tip-toe back in.  I'm a little nervous as to what it will feel like trying to do all of those poses with this catheter in my stomach, but I guess I'll feel it out and see how it goes.  Wish me luck!

A week in the hospital and now dialysis

Radio silence once again, peeps.  Certainly not intended, but unavoidable considering everything that's happened.  I kind of "fell off the cliff" in regards to my health a couple of weeks ago.  My last post talked about my nephrologist visit and how he said that "I'd know" when it was time to start dialysis.  I guess "I knew" the morning of Monday, Nov 3rd.  The weekend before that I just felt awful....I could NOT get warm enough (we're talking 3 shirts, heating pad, thick fleece blankets and a space heater), and I was too nauseous to eat anything.  I started seeing my weight drop drastically, and by Monday morning I was down to 138 pounds.  I called my nephrologist on Monday morning and told him about the weekend and the symptoms I was experiencing, and he suggested I come to the hospital.

Now this was something that I'd thought a lot about.  I tried to find a nephrologist with local hospital privileges, but they weren't seeing new patients until January, so I was never able to follow-through with that.  I could either take my chances and go to the emergency room of a local hospital, or I could make the hour-long drive to a hospital in Maplewood and get admitted.  I chose Maplewood, simply because I knew my neph had privileges there and the surgeon he preferred for the PD cath placement was there.  Looking back now, I'm SO glad I made that choice.  Medical professionals in a typical ER setting see someone like me, and a whole lot of unnecessary time is spent trying to get a handle on my situation.  By going to Maplewood directly, my neph was able to get a room for me, and get all of my surgeries lined up before I even got there.  

This picture is of me right after the neck catheter placement procedure (which I was horrifyingly awake for).   Yeah, I'm not looking too good in this one.  

The reason we had to do this temporary catheter in my neck is that I had taken my blood thinner the night before, and there was no mechanism to reverse it's side effects, so we had to wait to put the tunneled catheter in.  But I desperately needed dialysis, so this was the option I had.  Can I just tell you that this was horribly uncomfortable, and I just started to get a bit freaked out knowing that there was this catheter thing essentially IN MY VEIN and sticking out of my neck.  Holy hell...it freaked me out.

But I DID receive dialysis that first night around 4:30pm.  It's kind of amazing that it all worked out.  This picture below shows what the dialysis machine looks like (that's my blood in the lines getting cleaned).  I had no idea what to expect, but I did experience a significant headache, with some crazy-painful cramping at the end.  We didn't end up pulling any fluid off due to the cramping (not that I had any fluid to give as I was severely dehydrated).

This picture was taken Tuesday during my dialysis session.  These were flowers and a balloon from my co-workers, hand delivered by 2 of them (my co-worker is my nephrologists brother :).  Such a happy surprise!

The second session of dialysis left me feeling like a zombie.  I felt like my life-force had been sucked out, along with all of the toxins, and there was this residual vibration in my entire body, like there were a bunch of happy cats trapped inside, purring away.  I make it sound pleasant with the cat analogy, but it was anything but pleasant.

By Wednesday I was feeling pretty cruddy.  I had been taking sponge baths each day (can't get catheters wet), but one of the nurse aides offered to try to help me wash my hair.  They have these shampoo caps that they use for patients that are bedridden, so I gave it a go.  They heat it up in a microwave first to activate the "shampoo" and then they're supposed to put it on your head, lather up and then use a towel to dry (sort of like a dry shampoo).  You can see that the aide is having some difficulty fitting all of my hair in that tiny cap, but she somehow managed it.  I tried to rinse the stuff out, but it ended up making my hair feel even grosser.  Then I promptly called Joacim and asked him to bring me some shampoo and conditioner :)

This is what dialysis looked like for me out of my neck.  These two tubes (one is where the blood is pulled from the body and the other is where it is returned....the colors don't necessarily matter in this case).  You can see that they're both empty here.

Now you can see one of the tubes slowly start to fill with my blood, which is then going to the machine for cleaning.

And now both are filled, as the blood on the blue side is what's returning from the machine (all nice and clean) and back to my body.

I could't stop taking selfies of this thing.  I was intrigued yet horrified all at the same time.  My neck started to REALLY bother me because of the tape (you can see it pulling on my skin).  They also cover the ends of the cather with gauze, so it gets heavy, and it kept pulling on the tape that was pulling on my skin.  The only way I was comfortable in regards to this part was to lie down, because then I could at least use gravity to position it in the least annoying way.  But after awhile, lying down all the time just sucks, and that hospital bed was awful (not to mention the 9 blanket that were piled on top of me.....if you ask for a warm one, they just put it under all of the others so it's closer to your skin, but don't remove any of the ones on top, so they build up over time).

This pic was taken on Wednesday as I was getting wheeled to the procedure room to have the neck catheter removed and a tunneled chest catheter placed.  I had been fasting (no food or drink) ALL day, and by this time it was 3:20pm.  As soon as we got into the suite the procedure was cancelled.  The doctor was running over with the previous patient, and then he had to be out of the building by 4:00 for a prior commitment.  I get that these things happen, but why even bother wheeling me down from my room if they knew he was running over????

I was lucky enough to get some visitors during my time at the hospital.  Izzy and Joacim came one night (I think it was Wednesday).  I was feeling pretty awful at the time, but I tried so hard to appear well for Izzy so she didn't get freaked out by everything.  She seems decently at ease in our selfie ;)  I also had several co-workers and my boss take time out of their busy days to drop in and visit.  Sometimes I wasn't the best company, but their visits were such a huge mental help!  And they brought food too!!!

Here was my nightmare of a bed.  I am not an organized patient...there were cups and papers and crap all over the place.

I was still being starved every morning at this point.  One of the days, I returned to my room after dialysis and saw this happy little surprise!  It's good to have friends that are nearby :)

By Thursday, the neck thing was really bothering me, so the nurse wrapped an ace bandage loosely around my neck in order to support the weight of the catheter.  MUCH better after that.  She adjusted my tape a little too, which finally allowed me to look up (I was starting to feel like the Hunchback of Notre Dame!)

 I FINALLY had my chest cath placed sometime Thursday (this pic was taken right after I returned to my room).  Thank DOG I was drugged up for this one, because it hurt like HELL when I woke up.  The catheter is tunneled under my skin, but over my collar bone, and apparently bones are pretty tender.  I felt like I had an elephant do the hokey-pokey on my collar bone.  SO.  INCREDIBLY.  PAINFUL.  Thankfully, no dialysis that day.

There wasn't much space left on my arm to do anything, but they still managed to draw blood from it every morning around 5:30am.

This was one of my nurses (who were al fantastic) named Rissy!  She'd the kind soul who wrapped up my neck, and really just fought to make sure I had the best care possible.  Nurses are a gem.  The amount of shit that they have to put up with is frightening and sad, so I tried my best to be a good patient.

I'm pretty sure I took this pic right after the surgery for my PD catheter (judging from the stoned look on my face).  I'm pretty sure I tried to call people on FaceTime because I could not move, and the phone somehow was in my hand.  Wow, PD cath surgery was also stupid painful.  I can't describe it.  Just awful.  Normally it's an outpatient surgery.  Either I'm a wuss, or all of the crap that my body had already been through that week was taking it's toll.

I asked the dialysis nurse on Friday to take this picture, because I wanted to remember what it was like at my worst.  This was my last day of dialysis in the hospital, I had a MASSIVE migraine that I was fighting, and the guy getting dialyzed next to me had MRSA and was vomiting and moaning throughout the whole session.  Quite possibly one of the worst 3 hours of my life.

And, amazingly enough, I was able to go home the next day.  Joacim came and picked me up around 4:00pm, and we were off.  I was terrified, honestly.  I was terrified due to the pain I was still in, and being home meant no IV dilauded (which is an INCREDIBLE pain drug), but there really was no reason to keep me there, and I probably did recover faster being at home.  I left the hospital with a chest catheter and a PD catheter.  The chest catheter is used for the in-center hemp dialysis that I have to do until the PD catheter is healed, which takes about 2 weeks.  While in the hospital, I found out that I was approved on the waiting list for PD with DaVita/Baxter, so things were pretty much in-place.

More follow-up posts coming....