Tissue and Cross-Matching

I'd say that this was a rather moment day for me in that this is the first time I've been able to mail in a blood kit to Mayo because of a potential donor.  There are so many emotions that go along with this that are nearly impossible to put on "paper", but please understand how profoundly grateful and humble I feel that I've even have this opportunity.  Part of me is terrified to mention anything at all for fearing it will fall apart, but the another part of me wants to sing it from the rooftops, and pay homage to the woman who is trying to help me (which I will do in a separate post when it's not nearly 11:00pm :).  

If you want to understand a bit more about tissue and cross-matching, I found a link here that does a decent job of describing it.

One little vial of blood is all it takes from me at this point....seems like an easy request.  Thankfully I had dialysis labs today, plus an iron infusion and EPO shots, so it was kind of like a two-fer.

I was even able to pick up the traveling case for the cycler for our vacation next month (which I'm terrified about, but I'll post on that later).

I realize that I've been neglecting the details on this blog.  Lots of things happen daily that I just don't bother posting, but I realize that that's also not giving everyone the idea of the impact of every little thing on my life.  For instance, my nurse case manager from Cigna that was incredibly helpful retired at the end of December, and it's been a battle ever since getting ANYONE to respond.   FINALLY, after 11 unreturned calls and 6 voicemails, I was able to get a hold of my nurse case manager, and do you know what?  She got on the phone and absolutely didn't acknowledge any of it.  After she got done speaking, I simply told her that it wasn't acceptable, and that I wanted a new case manager (there were a few more words that my coworkers had the pleasure of hearing :), but needless to say I have a NEW case manager now and he sounds like he's on top of things, so fingers crossed moving forward.

And do you know what ELSE I discovered?  Pre-evaluation travel and lodging expenses for the potential donor ARE NOT COVERED.  The medical workups are, but not travel and expenses.  Once a donor is named and a surgery date set, THEN that's all covered, but I still think that this is a shitty policy in general.  Hey insurance companies, why not do everything in your power to discourage anyone from stepping up?  Sounds like a great idea so you can  milk as much money as possible from us. I know dialysis is profitable for you, but COME ON!!!  Thankfully, my potential donor, is using this trip as a mini-spring break with her family, but if this ever becomes an issue in the future, I'm gonna fundraise like hell to make sure that isn't a stopper to getting someone up here.

Other things that suck right now?  Well, there's this minor skin irritation that was caused from itching.   THIS is what happens to my skin when I itch.  All of the little capillaries are at the top and they break, causing these awful red marks.

Another thing?  Needle pokes.  And the strange bruises that sometimes appear because of them.

Thank dawg for my heating pad which has become a regular feature of my nighttime routine. I'm either freezing, or in pain, and this helps both.

I'm not "normal"

I try so very hard to live a normal life, whatever the hell THAT is.

I think, sometimes, that I'm trying too hard.  I'm worn out.  By Thursday night, I'm mental jelly.  I'm exhausted, swollen, cranky and anxious, and an absolute joy to be around.

I want it both ways.  I need it both ways.  I WANT to be the healthy person that works and does yoga and goes on fun adventures on the weekends.  I also NEED to be the sick person that comes home, puts on her jammies and goes into a quiet room to rest body and brain.  I don't want this disease or kidney failure to prevent me from the things I WANT to do, but I also don't want the expectation that I can keep up like a healthier person.  There's no reason that I should have to pick on or the other because I am both, yet I feel sometimes like I have to commit to one of them.  I wish I could celebrate the "healthy" days, yet have understanding on the "sick" days.

Somedays I miss the steadiness of working as an engineer.  There were always problems to solve, but they were problems that had answers.  The 371 different things I'm working on (okay, maybe an exaggeration, but not by much according to my inbox) don't have clear solutions....heck, some don't have any. What I'm getting at in my "not so elegant" way is that I'm suffering from decision fatigue.  The sheer volume of the number of decisions that I make every day at work is staggering (for all of us), but compound that with a chronic illness, and it's sometimes unbearable.  Every decision starts to feel very important, until I get to the point that I can't tell the difference between something I can put off and something that's an emergency.  They all feel like emergencies.  The heightened emotional state is draining.

Wahhhh wahhhh wahhh....I'm a big ol' whiner today.  But hey...that's what I come here for!

Ugh.....I hate not being able to communicate all of the feelings and thoughts that run through my brain daily.  It's all a jumbled mess in my brain...the words....they want out but I can't seem to string together a coherent thought right now.

You know what I'd like to do?  I'd like to go on a yoga retreat.  Or at some kind of yoga/meditation place in the desert.  I think spending 3 or 4 days in nature, doing yoga and eating well are just what I need.  I wonder if there's a yoga treat that caters to dialysis patients, because it's not as if I can spontaneously do this.  More research.  Guess that makes 372 different things I'm working on....

Mental itchiness

I'm coining a new phrase today (maybe it's not new...I haven't consulted the Google yet) and it's called "mental itchiness".  I think it's a good phrase for the excessive rambling I'm about to do, but hoping it's therapeutic.

It's a typical Friday night here, full of a whole hell of a lot of nothing.  Yes, I'm terribly, terribly bored and excessively cranky for a Friday.

I went to happy hour hot vinyasa tonight, which I do every Friday night.  There weren't very many people there, which was a nice change of pace from the typically full class, so I had plenty of room for poses, but for some reason tonight I felt like a clumsy elephant trying to balance on a beam.  I've realized lately that I get a much better workout, and feel better about myself in general, when I do workouts earlier in the day.  By the end of a work day, I'm usually pretty tired mentally from the incessant amount of talking I do (no snarky comments here, peanut gallery :), and I'm pretty swollen from all of the sitting I'm doing.  Swollen legs and bellies do not lend themselves to grace and yoga, and it was evident today.  I felt like my whole center of gravity was off, and I admit that I kept getting frustrated in myself (which is the antithesis of yoga).  I finished the class and got a decent workout, but I felt mentally defeated.

I beat up on myself a lot in my head, more so than anyone knows.  I don't know if I realized how deeply ingrained ideas of beauty and attractiveness are in me.  I mean, I thought I did after prednisone, and then after having Izzy, but I continue to beat myself up daily over how I look.  And I can tell myself to take it easy on myself because of what I go through daily, but I never do.  I mean, seriously.....what the hell happened in my brain that I just can't accept what is, or better yet, even have any awareness that I'm any less than I think I should be?  Does that make any sense?

Ugh....so frustrated today.  I hate disconnecting.  I hate connecting.  I hate dealing with Baxter.  I hate having to figure out what the hell to do with the catheter sometimes  I just hate it all today.  I hate that I feel like it totally limits me yet I chose this option for the flexibility.  What am I missing here?  Why can't I make this work better?  I'm not the only person on dialysis who works and is married and has children.

I may just be especially whiney about it right now because I'm seriously bored out of my f-ing mind.  It's not all the fault of dialysis, of course, but it (and everything that led up to it) played a part.  I slowly took myself out of social circles (not by choice, of course) and life moved on without me, with the result being that I spend every night at home.  I'm grateful that I have a family and a home, but too much togetherness is, well, too much.  I feel like I'm in this suspended animation, and I'm just waiting for the page to turn.  I clearly need to get the hell out of here tomorrow....maybe a trip to the museum or something.  Can I blame all of this mental "itchiness" on winter in Minnesota?

Weary of the pain

I'm definitely weary of the pain right now.  The last couple of days I have this sensation in my abdomen (both upper and lower) that's difficult to describe.  I remember back in high school, when we were conditioning for track season, where we would run a lot after having done nothing for awhile and I'd get these awful cramps in my sides......remember those?  Well, it's sorta like that, but all over sometimes and sometime they move.  It'll start out in my upper right abdomen, right under my ribcage, and then spread to my lower abdomen, then back up, then seizing pain all over.  I'm not sure if it's cramping or what because I've never felt it before, but it's incredibly painful and unpredictable.  One minute I'll be fine, and the next I'll be literally bent over in pain, unable to take a deep breath for fear of the stabbing pain.

Tonight, I connected to the machine and started it.  The first thing the machine does is drain out whatever fluid I ultra filtered during the day, and it does this for 90 seconds. After I started it, I went to the bathroom to wash my hands, and then the drain pain AND the crampy pain hit, and I had a hard time walking back to lie in bed.  Fuck, I hate this.  It's just so random, and that's so damn frustrating.  The unpredictability of being spontaneously incapacitated is difficult to live with.

I've also noticed that I'm not urinating as much as I did when I first started.  A year ago, I could take my diuretics and know that, within 45 minutes, I'd have to pee.  Now it's 3-4 hours.  I think that the catheter surgery really destroyed or confused some nerves in my body, because I don't have that urge to pee anymore.  It's strange, but it's as if I can feel my bladder as an organ (which, admittedly, I don't think I ever really did before), and it hurts.  It just starts burning inside (my bladder, that is), and that's how I know I need to go.  I wonder if anyone else feels like that.  I wonder what life will be like when I no longer pee at all....won't that be strange?  I mean, think about it.  It's one of the most basic functions of the human body, and I'll just stop.  It's weird (but maybe incredibly convenient considering my aversion to anything that starts with "port-o"....:)

I've been nominated....

for the Liebster Award!!!

I bet you thought I was gonna say something you've actually heard of, didn't you?  :)  Well, this is even better in my opinion.  The Liebster Award is a way for bloggers to recognize fellow bloggers who don't have a large following, and help to get the word out about their blog.  I hope it helps draw more traffic to my blog so that people hear my story.  Maybe someone out there will read it and feel compelled to act...you just never know :)  My friend Sarah, who blogs at http://sarahandjohnadopt.blogspot.com, nominated me, and I would absolutely love it if you could go over there and check it out.  Sarah and I know each other because we share the same kidney disease.  She and her husband are going through the adoption process.  At times it's a blog full of light, and yet there are those times where it's gut wrenching to hear how hard it is for her.

As part of this nomination, I'm going to answer 11 questions about myself that were given to me by Sarah, so here goes!

1. Why did you start blogging? I started my blog on May 6, 2011 as a way for me to be "real" with myself.  I have a personal blog that I use to keep friends and family up to speed with our (as in my whole family) lives, but I didn't want my kidney disease to take over, so I started this one as a therapeutic outlet.

2. What is your favorite food? This is a tough one to pick, but if I must chose only ONE, then it would be fried chicken.  Hands down.

3. What was your first job? My first job was as a lifeguard at a small country club back in Indiana.  What a cake job!  I taught swimming lessons in the morning, then made the 40 minute drive to the country club to lifeguard.  It was a relatively small pool, and the same kids came pretty much every day so i knew what to expect.  There was also the added perk of unlimited Dr. Pepper (a true treat at that time) and 9 holes of golf after I closed the pool.

4. What are you having for dinner tonight? Leftover Super Bowl chili and a peanut butter sandwich on wheat bread.

5. Pick one word to describe your blog.  Raw

6. If you could go to any place in the world on a free vacation for a week, where would you go? I think, if money were no option, that I would choose Fiji.  And I'd want one of those secluded huts that sit atop that beautiful, blue water.  And I would do nothing but sit in the sun (with SPF 2450 :) and read, voraciously.  And drink a lot of drinks that require a cocktail umbrella.

7. Who was your favorite teacher? My favorite teacher was Mr. Hartke.  He taught me physics, trigonometry and diff eq in high school.  His crazy shock of curly white hair would shake furiously as he was explaining equations on the board.  I went to a REALLY small school (there were only 6 people in my physics class, if I recall correctly) and he never failed to give everyone enough attention to be successful.  He challenged my brain and helped mold me in to the great problem-solver that I believe I am today.  Mr. Hartke was an avid runner, and he'd often be seen running the country roads after school (hell, he was probably in better shape THEN than I've EVER been).  Sadly, Mr. Hartke passed away in 2007, but the impact he had on me continues today.

8. Where do you see yourself in five years? I have absolutely no idea.  This disease stripped me of a future vision...trying to just live life today.  Sad, maybe, but oh so true.

9. Who would you say has been the most influential person in your life? See #7.  When I look back at tough forks in the road during college, I distinctly remember the faith that Mr. Hartke had in me pushing me through.  I have to add my Grandma to this list as well.  She helped raise me, and made me feel safe, as though nothing in the world could be bad.  She's buried 2 husbands to cancer, and she remains one of the strongest people I know.  She just perseveres and I love her.

10. If you had to be any animal for the rest of your life, what would you pick? I'd be an eagle, for the simple reason of being able to slide high above and look down below.

11. What is your favorite color?  I'll go with orange

As the 2nd requirement of the nomination, I'm going to give 11 facts about myself:

1. My morning beverage of choice is a venti soy chai latte, no water, no foam, extra hot.
2. 2 biggest fears:  spiders and heights
3. I worked at a boat rental place on Lake Freeman in college and it was probably one of the most fun summer's I've ever had.
4. I wanted to be an astronaut when I grew up.  I went to Purdue University, initially majoring in Aerospace Engineering, but switched it promptly after a matlab class (google it).
5. I had never traveled outside of the country until my first trip to Sweden to see Joacim (spring break in Mazatlan doesn't count)
6. My favorite movie is White Christmas (holiday or not, it's my favorite).  I only allow myself to watch it once a year, on Christmas Eve, in order for it to remain said favorite.
7. I won't eat food that can look back at me on the plate (i.e., shrimp, lobster....basically anything with more than 4 legs).
8. I was in a county fair queen contest in high school.  I didn't win.
9. I've never had stiches (labor ones don't count! :)
10. The ladies in my FSGS and Pregnancy group on Facebook are some of my favorite people on earth, and I've only met 2 of them in person.  They lift me up, encourage me, support me, and truly care about me.  I can ask and say anything without judgement...just total acceptance and understanding.   And I wish desperately that they were all neighbors so I could walk on over to their house, share a beverage and have a chat on a daily basis.  Isn't that what friendship is all about?

And finally, the 3rd requirement is to nominate 11 other blogs for the Liebster Award.  I don't know if I'll be able to come up with 11, but here are some that I think are truly worth a visit:

1.  http://pregnantpinkwarrior.blogspot.com  This blog is written by my friend, Kristin.  We also share the same kidney disease, but that's not what this blog is about.  Kristin was diagnosed with breast cancer last year, and she started this blog to journal her battle.  We (my ladies in the Facebook group I mentioned earlier) and I were with her from day one, and she's been nothing short of inspiring every single day since.  She also has a distinct love of shoes (another trait we share), and I'm happy to report that she is cancer free!

Okay, so I don't have 11 blogs.  I used to follow a ton of kidney blogs, but they're pretty sporadic in regards to posts.  My guess is that, when they feel good, they don't post, so I'm hoping that everyone I used to follow is out there living life!

Pardon the whine.....

Does anyone else feel like time is standing still at the same time as they feel time is flying by?  No??  Must just be me.

Because seriously, folks, some days it feels as though time is standing still as I wait for a transplant.

But at the same time, dialysis has segmented and shortened my days so much that it feels as though they're are slipping through my fingers.  Wake up, coffee, work, exercise, shower, dialysis.  Repeat.  This little routine doesn't leave much room for spontaneity because the thought of how I fit in dialysis always seeps in (which usually ends up stopping anything spontaneous from happening).  I am my own ultimate killjoy.  I feel like (at least during the weekdays) I only have a couple of hours to do anything when I get home from work.  That may not actually be the case, but in my brain that's how I feel.  These problems aren't new, and I'm certainly not the only one that faces them, but that still doesn't mean I wish they weren't there.

I wish I didn't have to empty the damn dialysis drain bag every freaking morning.
I wish I didn't have to tear down the machine.
I wish I didn't have to stay on top of insurance crap (yippee...a new year and new problems).
I wish I didn't have to stay on top of making sure my dialysis supplies get delivered (which they still haven't)
I wish I could easily pick up and go somewhere for the weekend (the key word being "easy").
I wish I didn't have this tube hanging out of my stomach.
I wish I could get all of the damned adhesive from the tape off of my side (what the hell is this stuff made out of???)
I wish I didn't have to watch what I eat.
I wish they would FREAKING LABEL THE AMOUNT OF PHOSPHORUS ON ALL FOOD.

I wish.....I wish......I wish.

I wish this wasn't my story.

First time solo

I'm spending my very first night without Joacim since I started dialysis.  We pushed it out as long as we could, but we eventually knew that he'd have to travel, and now is as good a time as any.  There isn't anything eventful happening (hopefully not, anyway :) this week, so we should be good.  I have a couple of early meetings far away, and I need to figure out how I'm going to navigate that with Izzy, but I'll make it work somehow.

Dialysis is going well still.  I've had a few more cramps, but I'm also hoping that my workouts are contributing to them somewhat...muscles seem to be a bit more "touchy" lately.  I did pilates on my reformer on Saturday, and I was INCREDIBLY sore on Sunday (but the good kind of sore :) so I decided to rest.  I've done some sort of exercise every day (except for 3) so far this year, and I'm very proud of that.  It wasn't easy to get started again, and it isn't always easy to stick with it, but I'm finding that I feel better when I do some sort of exercise, even if it's only 30 minutes of pilates, or a shorter yoga class....anything is better than nothing.

I hope this helps to offset the extra 500 calories from the dialysis solution.  Some days I'm not as hungry as others and I don't worry about it too much.  But then there are THOSE days where I feel like I'm snacking all day.  I have a few of the in a row, and I see my weight climb, and PANIC sets in.  But then I have a day like Sunday (started to feel REALLY bad late afternoon...horrible gas pains) where I don't eat much at all, and the weight just falls off.  I ALWAYS need to remind myself that this is fluid balance, not weight swings.

We planned our vacation this past weekend as well for the spring.  The first place we selected was a home to rent on Don Pedro Island off the cost of Florida.  This should've been no big deal, but there was a ferry that you had to take from the mainland to the island, and I was worried that there would be an issue with my dialysis supplies being delivered to that.  We ended up selecting another home for the week that's on the mainland just to ensure safe delivery (the other place ended up being booked too).  This is the first time I'll be traveling on dialysis so I'm hoping all goes well.  The house we rented has a private, screened-in pool, which will be great for Izzy, but I won't be able to enjoy it this year.  At least we're close to the beach where I CAN swim :)

The year may change but the routine doesn't

Honestly, I can handle this dialysis thing.  I mean I really feel like it's fitting in to my life after this break from work.  I was able to experiment with it a little and get more comfortable, so much so that I feel I can connect myself in my sleep!

I was cramping a few nights ago, and it was truly awful.  They're like charley-horse cramps, only WAY worse.  I had one in my right leg, and it started behind my knee on the right side.  It then radiated all up and down my leg and through my hip.  The only thing that really provided any relief was getting out of bed (mind you, it's around 1:30am) and standing on my right leg only.  That kind of forces the muscle to do what I need it to do (and it's something that my dialysis nurse taught me when I first started dialysis in the hospital and had a CRAZY cramp the very first time).  I'm not sure why I was cramping, as I don't feel like I was taking off too much fluid, and my blood pressure readings agree.  Hopefully this isn't something that'll happen frequently.

I had labs done on Monday and my dietician called back with the results.  It seems like my calcium and potassium are looking good, my PTH abnormally low but that's better than being high, and my albumin is still low at 1.7.  My hemoglobin and iron stores are good, so I can back off of the EPO injections and iron infusions now, which means 2-3 less pokes every month.  Unfortunately, my phosphorus has risen a lot since my last draw...I'm still under 5, but not by much.  I could start taking my binders (not on them yet), but I really want to see if I can control it better with diet as this dialysis thing isn't going away any time soon.  I talked with the dietitian to try to figure out what changes I need to make, and they all suck because it means I can't have what I want.  I've been eating a lot of dairy lately as I've re-discovered the taste for it (milk especially) and its a great source of protein, but it's also really high in phosphorus.  So are beans, which are my go-to protein because they're easy and yummy.  I'm supposed to keep phosphorus consumption under 1000mg/day, and I'm struggling a little with how to do that.  Cheese/dairy is a quick, easy protein that's portable, and beans are quick and easy too.  I need A LOT of protein every day, so high-protein foods are great, but I have to be careful because they can also be high in phosphorus.  The worst part of it is that most nutritional labels don't list phosphorus content on them, and that makes it hard to make easy, quick decisions about what I can/should be eating.  I hate how much time and effort this particular thing is taking.

I've also noticed my weight creeping up, and I'm terrified.  I had no idea, but I could be getting an additional 400-500 calories through the dialysis solution!!!  That's a lot of calories every day to offset.  My appetite is pretty healthy again, and with the time off the last 2 weeks, I've had some time to snack (apparently too much).  I started working out again, so I'm hoping that building muscle mass can help offset the weight (or at least make me feel like that's the reason I'm gaining weight, rather than just eating too much :).  I feel like my life is swirling around my weight and food right now, and it's not a fun place to be.

Received some bad news....

We received some bad news regarding Joacim's potential as a donor.  Essentially, his glucose numbers didn't budge from 3 months ago.  Mayo has also determined that the antibodies I have against his are too high to consider him a suitable direct donor to me, which we kind of already knew, but I still had hopes that they'd work a miracle here but I guess not.  At this point I'm not even sure he's a viable candidate to be a donor to anyone, which means I'm not sure if he'll be able to be in the paired exchange program as my donor.  This is kind of a big freaking deal, ad I'm not sure how to deal with it all.

I have had a few people calling in to donate on my behalf so the donor team will focus on those people first to see if they'll be a match.  In order to maintain privacy, I'm not going to reveal any details about these people unless they read this and give me permission to do so :)  I will say that I've been in recent contact with one of them, and it looks like things are moving forward.  It feels like this process is taking a really long time, but I'm honestly not sure how long it's supposed to take, so I'm trying my hardest to be patient, but it's clearly not easy for me.  I'm in several transplant/dialysis related kidney groups on Facebook, and I see so many people who seem to know they have a match within days, and it frustrates me because I don't have that.  At the same time, I also believe that Mayo is one of the best transplant centers, and that they're working to ensure the best outcome for me.

I clearly need to blog more or I'll never get a new kidney.  I need to be constantly in people's faces, talking about donation.  This truly is the best way for me to get a new kidney, but it's hard....hard to find time and focus in order to get my message across to as many people as possible.  Sometimes I don't think I have it in me, but then I realize how far I've come and that I deserve to have a happy ending.

Whew.....thankful for Christmas break....

I went back to work the Monday after Thanksgiving, and since then it's been an absolute whirlwind.  Work has been very busy since I came back, which is great.  It's good to feel missed, but I'm kinda worn out and am ready for a little break again.  Life after work has been....well....lacking lately.  I've been stressing about the holidays and how empty it all feels this year.  I've done the decorating, the Christmas carol-listening, but it doesn't seem to be of much use....I'm just not into it this year.  Maybe part of it's due to going on dialysis...somewhere deep inside that's affecting things.  There's also absolutely zero snow here, and I seriously thought that it was nearly guaranteed to have a white Christmas here in Minnesota.  I'm calling this year the Year of the Christmas Fail.

It also feels like there's not much to my life other than work and dialysis right now.  Here's what a typical day looks like:

• I wake up usually during the last drain of my cycle because it's pretty damn painful (think labor contraction for my mom friends).  I've already missed helping Izzy get ready for school...some days she doesn't even say good-bye because she assumes I'm asleep, or not able to say goodbye because I'm still hooked up.  I think the machine, in general, freaks her out a teeny bit, and she pretty much stays away from it, and me when I'm on it.  
• After she and Joacim are gone, I get ready and go to work, where I'll spend the day sitting down in various meetings (both internal and customer) and eating.  As the days goes, I'll swell, and it's especially bad on work days because I'm usually sitting the entire day (either at my desk, in a meeting or in my car).  
• Eventually I get home, and I'm thinking about what I have going on the next day in order to figure out what's the latest time I need to get on the machine in order to be finished for the next day's appointments.  I also need to figure out which bags to use for the night based off of my fluid gain during the day.  The last couple of weeks this has been more difficult because I'm running low on the green bags (I usually use 2/night), so I've had to get creative with my remaining supply until the next delivery (which was on Christmas Eve).
• There's also homework with Izzy, scrambling to figure out what to feed my family, and doing the dishes (ALWAYS dishes).
• And then there's a shower and off to bed.

Pretty exciting, right?  For now, I prefer to stay connected to the machine once I initially connect.  This, of course, forces me into a much more rigid schedule (which I'm complaining about) but I'm nervous about infection, and the more times I connect/disconnect, the more opportunities there are for screw ups and infection, so I stay connected.  This isn't going to work much longer, as the demands of life will start to take over a bit, so I'll have to do lots of practicing over Christmas break in order to be ready for it when it's needed.  There will come a day soon where I won't get on the machine early enough, and I'll have a super-early meeting the next day.  I'll have to bypass the normal run, and figure out how to make it up later in the day manually.  I'm also going to practice connecting, doing the initial drain and first fill, and then disconnecting in order to get a few more things done around the house (the machine is actually running during this time, but I'm in a dwell, so all it's doing is counting down until it's time to drain).  I'l have to make sure I get re-connected to the machine before the drain cycle starts, but that should be doable.

I know that PD is much more flexible than other options but I'm not fully taking advantage of it yet.  I know I will in time, but for now, it's all hard to figure out how to make all of the pieces of this puzzle fit together in the way that benefits everyone/everything.

So far I think PD is doing a great job of clearing things out.  I have a lot more energy, I'm no longer regularly nauseous (sometimes still, but not nearly to the extent before) and I'm not out of breath walking up the stairs every time.  My labs are looking really good too!  I started doing yoga again and I'm thrilled, but I'm pretty disappointed about all of the strength and flexibility that I lost.  I was SUPER nervous on my first forward fold because I was afraid I'd feel the catheter, but it didn't bother me at all.  The hose outside DID bother me, as I'm not exactly sure where to put it all.  Sometimes I literally tuck it into the waist of my pants.  Other times I coil it and tape it to my abdomen, but I hate doing this because the tape forms this CRAZY bond with my skin and it hurts to pull it off (plus I'm always sticky on my side now because the adhesive stays on the skin instead of getting pulled off with the tape).  I'm definitely nervous about how to fit yoga back in to my life now, as I know that I need to do it with some frequency in order to see the benefits.

Ahhhhhh....so many moving parts.....

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!