What I'm Doing to Help Myself

If you have been following along on my social media accounts, you will know that on November 5th I received my third kidney transplant.  It's been such a crazy process and its been easier to send quick updates on instagram, twitter and facebook vs. writing a blog post.

It's been a tough process.  First, my kidney was a little sleepy, which lead to a longer hospital stay.  This surgery was significantly more challenging for the surgeon to find a spot for this kidney.  They ended up slicing me right down the middle, moving my bowel over to slide the kidney in.  They didn't have a lot to attach the kidney to so they actually took fat from my donor to essentially glue my kidney in place.  This means I will have a longer recovery period because my kidney isn't exactly stabilized.  So, here I am unable to drive, lift anything more than 10lbs, walk around the block by myself or really do anything adults need to do to function.  It's been frustrating.  As my clients know, I have very little sympathy for people who complain but are unwilling to do anything to help themselves.  So, here is my list of things that I am doing to help myself through this process (they are not listed in any particular order, I believe they are all important).

1) Rest 
Ok, so maybe this is the most important.  As I start to feel better, laying around all day is getting more and more challenging.  I am so jacked up on prednisone (a crazy steroid that is currently helping to keep me alive) that I can't really concentrate on anything for too long.  I am finding a book really hard to get into because I can really only make it through 1-2 pages at a time.  I have watched an EMBARRASSING number of Survivor reruns.  I am trying to pick 1-2 small tasks that I can do each day to try and break it up.

2) Talk About It
Having this blog and the social media that goes along with it has been a HUGE support system and outlet for me.  I wanted to share my experience so people could see how crazy this whole process is and the fact that it doesn't end once you get the kidney! I've received amazing support from other kidney patients, friends, family and strangers.  Talking about it is so important. You can't just keep it all bottled up.

3) Meditate
I am meditating DAILY.  Whether its for 5 minutes in the waiting room at clinic so I don't kill the humming lady beside me, or sitting down with an app on my phone for 20 minutes I am making the time to sit and find a bit of stillness in my mind.  This does not come naturally to me.  It's hard, but I'm noticing it is getting easier as I continue with it.  

4) Eat Well & Include Supplements
Food is fuel.  It's so nice to have my appetite back and I'm enjoying eating vegetables and protein again.  It feels good knowing I am helping my body recover by giving it the nutrients it needs.  I'm also including (doctor approved) supplements to help support my body: probiotic (A LOT since I'm taking some crazy antibiotics to match the crazy anti-rejection drugs I'm on), B complex, Vitamin D (in the form of drops), and Zinc.  

5) Maintain a Routine
I think it's important to still get up in the morning, wash my face, brush my teeth and have some sort of routine for meals.  It just keeps you on track so you don't get completely lost in the stay in bed all day mode.  

6) Find Joy in the Little Things
I realize this may start to sound like a self-help book, but honestly you have to take the time to find happiness in the little things.  This year I decorated for Christmas a little early because twinkle lights make me happy.  Being able to sit down and enjoy a hot breakfast makes me happy.  Setting up my diffuser with whatever oil has caught my eye that day makes me happy.  They don't have to be big, but you have to make them count.  

Vulnerability

I depend on a machine to live.  Without that machine, I will literally just die (eventually).  It's a very odd concept to wrap your head around. I don't tend to do well with feeling vulnerable.  I make myself as big and scary as possible and hope my bark is enough that I don't actually have to back anything up - but I will if I have to.  It's a very vulnerable position to be in a) again, the point of me NEEDING that machine to live and b) being locked up to a machine in your own home unable to move is also a very odd feeling.  Besides the needling not going well yesterday, it was very eye opening how vulnerable I felt sitting there.  In any emergency I would have to stop my machine, ideally give my blood back take my needles out and then I could run away from whatever (I watch a lot of TV these days...maybe not a good idea).  I know I'm safe and it helps having Harlow here for back up (don't laugh at that statement if you haven't met her - she has my back, I don't doubt it for a second) but it's still a very hard concept for me to come to terms with.  I don't like relying on anything, I very much like being able to do things myself.

Other than that, yesterday was a very good learning curve.  I got to see how much set up at home worked and what needed to change.  I didn't have enough lighting to really get a good look at my fistula for the needling (thanks to a wonderful client/friend that isn't a problem anymore with my fancy new lamp), and I'm not able to recline on the couch (if my blood pressure were to drop, I need to be able to tip back with my feet up) so we played around with that and a few other things to try and make my life easier.  We have a game play for the next 3 treatments to make sure I have enough support available if I need it.  The nursing staff has been AMAZING and has truly gone above and beyond to help me get home and stay safe.

I'm Doing the Best that I Can

This seems to be my line this week.  People keep asking me if I'm at least starting to feel better and I honestly have no idea.  I'm sure I am, but I'm working seven days a week right now in order to accommodate dialysis training, so it's hard to say if I'm feeling any better because I'm still exhausted.

Last week was really rough.  I had a few things come up that were just enough to push me over the edge from "sane and handling this" to "I'd like to fall asleep and never wake up".  Hello mental breakdown.  Friday was a rough dialysis treatment - everything went smoothly with two needles and we even got my pump speed up to 400 (that was the goal) but every fibre in my body did NOT want to be there.  It was the most beautiful day outside and I was PISSED that I had to sit inside for this stupid treatment that takes up so much of my time and how come I have to do this but little Susie over there has never had a hard day in her life, blah, blah, blah.  Yeah, it was one of those days.

Needless to say, I worked through it.  Saturday was another gorgeous day and I spend the majority of it at the barn with ponies & friends - it was exactly what I needed.

So, now that I'm feeling a little less defeated and focusing on my dialysis training and getting prepared to bring it home the week of October 15th.  One day at a time!

Nope Nope Nope Nope Nope

I get why people quit.  I get why people give up.  I understand why people get caught up in the "why me" cycle.  I'm currently in that head space.  I'm frustrated and exhausted and so fucking mad that things can't just run smoothly.  Today was a much better dialysis treatment.  We decided to stick with one needle instead of trying to do two in order to give my arm some more time to heal up.  We were able to take some excess fluid off and other than tired, I'm not feeling too bad, but that last half hour of my three hour treatment left me crawling in my skin.  I wanted nothing more than to get out of the chair.  My butt hurt from sitting on it, the blood pressure cuff (that goes off every half hour) and driving me bat shit crazy and I was tired and hungry.  Miserable.  I was miserable.

Then they told me they really, really want me to come three times a week starting next week.  So that would mean I will be going in Monday, Wednesday and Friday (this is why I have clients schedule and typically go to the barn).  We have been doing three hour treatments, but if the second needle keeps failing and we have to continue with one for a bit they are wanting me to add another hour onto my treatment.  By the time I get the machine all set up, and taken down at the end I'm there for about five hours.  If we add that extra hour onto my treatments I will need to leave 6 hours open in order to accommodate everything.  That's 18 hours of my week that I need to make available for dialysis.  That also means I am rearranging clients, when I ride, taking care of my dog, etc.  I have to rearrange everything I just spent the last month organizing.  And it's really fucking annoying.  I don't want to do this anymore.

So here's the deal: I am giving myself the rest of the day to hate everything (like actually - I probably hate you right now for no reason).  I get the day to be mad and sad and then tomorrow it's time to buck up and figure it all out.  It's all part of the process and I know that by the time tomorrow rolls around I will have it all figured out (cause I'm awesome) :)

PSA: Words of encouragement are welcome.  Unless you have done this before - suggestions/advise are not.  

Hippie Kidney

I have known for several years now that my last transplant was not going to last as long as we were hoping for.  We started to look at another transplant work up almost two years ago.  Within those two years I modified three main things in my life that have SIGNIFICANTLY helped me to prolong starting dialysis and stay off of as much medication as possible.

I tend to lean a little bit more towards the "hippie" side of things.  Western medicine is the only reason I am alive and continue to be alive so that is always my first priority, but when there is a less westernized way of doing things I try to take that route as much as possible (for example, I love essential oils but I will not for a second think they can replace antibiotics).  Here are the three big changes I made in my life to try and prolong the life of my transplanted kidney as much as possible:

1) Osteopathy 
First and foremost I have to give a HUGE shout out to the amazing team at Goodwill Healing.  Getting weekly treatments to help keep fluid moving and stabilize my structure as much as possible is the main reason I have been able to stay off as much medication as I have.  When your kidneys start to fail they can't filter out the same amount of fluid they are supposed to so you start to retain it.  It's really annoying - it feels like you are slausing around.  Usually you get put on medication for this but I was able to stay off of it for a long time because of the osteos being able to keep it moving for me.  It's made all the difference.  

2) Medical Cannabis
I started using cannabis several months ago.  I use the CBD oil during the day to help with discomfort, any anxiety, as well as helping to stabilize blood pressure (high blood pressure is another lovely side effect from kidney failure).  The CBD oil is meant to return your body back to a balanced state without the high you get from the THC oil.  I save the THC oil for the evening to help me sleep.  Insomnia is another side effect from kidney failure - which is super fun when you are permanently exhausted all the time but can't sleep at night.  The THC oil has been a game changer in terms of allowing me to fall and stay asleep.  It's made me a much happier person to be around.  

3) Being a Little Selfish 
The last big change I made was always, always, always putting myself first.  Some people may disagree with me on this one but I did make the metal shift to always putting me and my health first.  I modified my work schedule to give me more downtime; I reevaluated some of the individuals I had in my life who were exhausting to be around; I made more time for the things that make me feel happy and healthy (horses, sleep, sunshine); I started saying no to things (this has been tough for me, especially when it's been things I WANT to do but know I don't have enough energy for); and I started taking people up on their offers to help me.  It's amazing the shift that can happen when you actually start putting yourself first.  I started to really not care what other people thought of me and this was SO LIBERATING.  I'm doing all of this for me, so it really truly does not matter what other people think.  It's become a much healthier way to live.

The only other thing I will say is nutrition does play a huge role.  I didn't include it because my appetite has been shit and I have just been eating whatever sounds appealing to make sure I am getting SOMETHING to eat.  Unfortunately, that has not been the typical green smoothie I would like to want to consume - it's been a little closer to ice Capps and junk, but nutrition does play a big role in this whole process.  

First Go.

Blah!  Well I had my first dialysis treatment this morning and it kind of sucked.  It will take a few weeks for me to start to feel the benefits so for now it just kind of sucks.  The nurses were AMAZING - they made it manageable.  I know it will get easier and it will just become part of my life but I was so excited to feel better I think I left the logistics of how crappy it is out of my thought process.

Before we started the dialysis I had all of my vitals done and they did an ultrasound of my fistula to determine where they were going to put the needles.  They insert two needles into the fistula - one to take the blood out where it can be cleaned by the machine and another needle to put the clean blood back in.  The needle that is supposed to put the clean blood back into me failed, causing massive swelling and a LOT of pain - I thought I was going to pass out but I was able to focus enough on my breathing to make it through it.  They were able to make it work with just the one needle by adding another attachment and the pain subsided.  They put some ice on my arm which helped with the discomfort.  My arm is hella bruised and still quite uncomfortable.

After we got through the initial needle problem, it wasn't too bad.  It wasn't painful which was comforting.  This treatment lasted three hours and other than getting a little antsy the rest of it wasn't too bad.  I will be going back again on Thursday - fingers crossed my arm heals up in that time.

I am absolutely exhausted and a little nauseous.  I'm glad I have the rest of the day off. Nurse Harlow will take good care of me for the rest of the day.  I'm trying to pretend it's raining so I don't feel so bad about staying in bed for the rest of the day.

Social Media

I am getting ready to head to my first dialysis appointment tomorrow and have decided to open up some specific Jelly Bean Exchange social media accounts to further share my experience.

Check them out:

 

Higher Stakes

I had the unfortunate experience of picking up one hell of a gastro-instentinatal virus over the weekend.  It probably would have taken a normal immune system a day or two to get over it - it took me four full days of a low grade fever and all of the fun stuff that comes with gastro viruses.  The biggest difference between me and the average person is for those four days I was put on hold on all transplant lists.  Even if they found that needle in a hay stack during those four days, I wouldn't have been notified because I was sick.  This is why I have such a strict policy on no illness at my studio and why I'm so crazy about lysol wipes, hand sanitizer and hand washing (just ask Wes).   As of this morning I have been added back on to all of the lists and am looking forward to getting back to normal.

On another note, I begin my training for (wait for it) HOME DIALYSIS on Tuesday.  Yes, that's correct I made the switch that I said I was never going to make.  A wonderful nurse practitioner opened up my mind to other possibilities with home dialysis and another wonderful nurse even got me thinking about night time dialysis.  The appeal of home dialysis is the freedom to do it whenever it fits into my schedule - the options are kind of endless.  As long as I get a minimum of 12 hours per week, I can do it whenever I want.  The appeal of doing it at night is it doesn't disrupt your schedule at all and if you do it every other night you can get up to 24 hours of dialysis per week instead of just 12.  Remember when I said that when you don't get dialysis the toxins just build up in your body until your next session to cleanse everything? So in this case consistency is better.  My biggest hesitation with doing it while I sleep is I am not a sound, quiet sleeper - I move around a LOT and I was concerned I would pull out my needles.  The nurse who did my orientation assured me that I can tape it up and wrap it up so that nothing is able to move.  I am starting with twice a week in the home dialysis clinic to lean how to do it myself and then will hopefully be able to take it home to do it myself in a few weeks.  We are starting a bit earlier than we had intended - I got clearance from fistula people that I heal very quickly and it was ready for use and I requested that we start as soon as possible - I'm exhausted and ready to feel a bit more like myself!  

Not a Holiday

Trying to get rid of my hiccups. 

Today is my last day off before heading back to work.  I'm a little sad that I couldn't have more time off, it has been far from a vacation.  This past week was rougher than I thought it would be, and not in the sense of my arm hurting - my arm has actually been the least of my complaints.  I apparently cannot take T3's anymore without having a reaction.  The first three days were spent vomiting and battling the longest case of hiccups ever.  A full 36 hours of hiccups - I don't recommend it.  Since then things have slowly started to improve.  I've started to get my appetite and energy back.  I've finally stopped vomiting and hiccuping, oh yeah and I believe the mysterious nose bleeds have stopped too (honestly, I don't get it either).

In terms of my actual fistula, it's healing quite well.  I am actually able to type this using both hands, which is exciting.  It can still be a bit sore at times and due to its location (right in my elbow crease) I still can't full extend my arm, but it's getting there.  I am off of the extra strength Tylenol except for the rare occasion (if I use the arm too much).  I am still on limited duties, not exerting myself at all.  I joined Wes & Harlow for their walk this morning (obviously not the one walking Harlow) and it felt great to move.  I will continue to take it easy for the week (not riding sadly) but better to put in the time now and know that I am doing everything I can to make this fistula work.  

Ow.

Well, it's all done!  Yesterday went well and the fistula is so far successful.  I was very impressed with how nice everyone was yesterday, they all worked super hard to keep me warm and comfortable.  Last night was pretty rough.  I'm not allowed to lay on my left side (where the fistula is) and that's typically how I like to sleep. They also encouraged me to keep my left arm elevated, so we had pillows to prop it up.  Around 11:30pm the freezing started to wear off, but it wasn't until about 5:00am that my arm started to throb (even with the T3s that I caved and started taking).  Right now I'm just sitting on the couch with my arm up trying to distract myself.  I have to call my surgeons office to book a follow up appointment and will ask how much pain I'm supposed to be in.  I'm fairly confident that my pain tolerance is quite high so this is really hurting (which seems fair - they did slice my arm open yesterday).

It's supposed to be a beautiful day and I'm planning on enjoying it on my fancy new porch - courtesy of my sister & aunt xo.

Once again, I would like to thank everyone for all of their support, positive vibes, gifts, etc.  It really has made the whole process a little easier.