"I am stronger than depression and braver than loneliness and nothing will ever exhaust me".
-Elizabeth Gilbert (Eat, Pray, Love)

Tuesday, August 8, 2017

Loving Life


I know I have been a little MIA for the last few months, it was not unintentional.  I made the decision in June to simply enjoy my summer, a season that I practically live for.  Sure, I enjoy spring & fall (we aren't even going to mention winter...) but in the summer my numbers actually improve, I am scientifically proven to be happier and healthier in the summer.  If the States wasn't a political nightmare I would seriously consider moving to California.

Even though I made the decision to put the reality of needing another transplant on the back-burner for a few months, I have done a lot of reflecting and planning for the future.  I have made some big life changes in order to set myself up for the next 2+ years of my life.  I have faced the inevitable that I am probably going to end up on dialysis at some point before this transplant.  The odds of finding a match and not impossible, but they are tricky.  I have made the decision that when the time comes I will do hemodialysis where I go into the clinic to have it done a few times a week, rather than trying to do it at home.  I like the idea of knowing that on those days that's just what I'm doing - I go in, do my thing and then leave.  I don't want to turn my home into a place where I have to go back to do dialysis.  I have also made the decision to do a fistula (which gives me the fucking heebie-jeebies, but the alternative tubing comes with the risk of infection and limits my activity options more.  A fistula is the lesser of two extremely shitty options).  So, like I said, I have done a lot of reflecting.  It doesn't make it any easier, but once I get my head around something, I can get through the physical act of doing it.

I do not have any new leads on finding a match.  I have had so many amazing individuals come forward and start the testing process, but as previously mentioned, there are 2% of the antibodies that I won't reject - finding the right match is going to take awhile.  So, if you have been considering donating, please contact the team at LHSC - who knows, you might be my 2%!    

Thursday, June 1, 2017

What I Need


After getting some bloodwork done on Monday, I had my clinic appointment with my nephrologist yesterday to go over my numbers and check in.  Overall, everything looks relatively good considering I have a failing kidney.  In three months nothing has taken a major hit, and we have found a happy spot with my meds to control my blood pressure (the fact that it's warm out and I have modified my work schedule also helps with that).  The three main take-aways from the appointment were:

1) I need to get my shit together with my nutrition.  While I think it was fine (maybe even healthy...) to take a three month self-pity hiatus and live off of pizza and caffeine, I'm not doing my body any favours.  It will be a challenge, as I still don't really have an appetite, but I'm going to start to make the shift from pizza to homemade muffins and boxed Mac and cheese to some quinoa (or even soba noodles).  So food prep is on the list of things to do this weekend.

2) There is no financial support programs out there for self-employed individuals needing recovery time.  There are a few long term disability programs available, but I don't financially, or medially qualify for those, or there is Ontario works, but again, at the moment I do not financially qualify for that, nor does it cover health issues for a short term case.  So that was a bit of a bummer to find out.  I love the fact that I can play around with my schedule and have control over my hours, but it's tough when I don't work - I don't get paid.  At some point, the plan is to have some sort of fundraising party before the transplant - stay tuned for details :)

3) The last big thing we went over isn't really news to me, but we talked about how it is going to be quite challenging to find someone who is a match for me.  I have developed antibodies against almost 100% of all antibodies.  So, somewhere out there someone is made up of the 2% of antibodies my body won't reject.  There are a few options - living donors are still an option, we are still encouraging people who are O+ and wanting to get tested to see if you are a match to call and start the process.  But having people who are similar to me decreases the likelihood of them being a good match for me; I need someone who is different from me (different background, with antibodies I haven't been exposed to).  Once I complete my TB test next week, I will have completed everything I need to do to be entered into the database.  This will open up several more options, as they can look at the Kidney Pair Donation (the fancy trade I talked about previously), or have access to other donors across Canada who may have the magical 2% makeup that I need (they may be living, or deceased - living is preferred, but I am slowly getting to the point of having to take what I get).  

What I Need

It has been so amazing receiving everyone's messages and offers to help.  Honestly, at the moment, all I need is a kidney.  I'm not at the "hand out donor cards", "put up a Facebook ad" need-a-kidney spot yet, but if you are O+, within the age range of 18-40, in overall good health and feel like sharing your spare kidney, please call 519-663-3552 to start getting tested.  Other than that, I have a pretty good support system around me that I am leaning on.  If I need any further help, I will post a list on here and you can contact me if you would like to take on a job!  I appreciate all of the offers, and at some point I will need all of the help I can get - right now I'm managing!  As we get closer to the surgery and even during transplant time, gift certificates may seem impersonal, but they are one of the best ways to help.  Places like Remark, Tim Hortons, Companions Pet Resort (Harlow's daycare), Chapters, Be Over Clean (the cleaning service I use), etc. will all be very helpful.  Thank you for your generosity and continued support xo    

Wednesday, May 17, 2017

Coffee & Carbohydrates


Food has never really been my thing.  I'm not a foodie, I don't really enjoy food, I just eat because you kind of have to.  On top of that, you add in the unhealthy relationship with food I had in high school with my eating disorder and you can understand why food isn't exactly my thing.  I have learned to control my eating disorder instead of having it control me, but it is something I continue to work through each day, especially when there is so much in my life that I do not have control over currently.  Lack of control is the main contributing factor to the origins of my eating disorder.  Kidney failure at a young age, constant reliance on medication to keep me alive, back surgery (right, have I forgotten to mention that one?! FYI, I have rods in my spine as well)...there is a lot in my life that I have very little control over.  What I ate (or didn't eat) was something I could control.  I have now learned to focus on other things that I can control. Overall, I still don't "live for food", but I try to  focus on the fact that it is fuel to help my body.  I learned to shift my thought from needing to control my life through food, to wanting to be healthy and strong.  I put all of my control issues, self doubt and distorted views of my body into working out and feeding my body appropriately to build muscle.  It worked beautifully.

The problem with that is, I don't currently have an appetite; and I'm tired.  I have had to cut back my workouts from going hard five-six days a week in the gym to one modified weight workout, yoga, some Pilates, walking the dog, and riding.  Don't get me wrong, I am still very active, but I'm not able to channel all of problems and dish them out in a workout.  When it comes to food, I've had to ditch the idea of fuelling my body the best that I can, to simply eating whatever looks appealing because you really do need food to live (so I'm pretty much living off of caffeine and pizza).  To be honest, I am handling it better than I was expecting to.  I was ready to talk myself off some ledges, but I think I am in a good enough place, with a lot of support that my main focus is simply getting through this rather than "looking good" and getting through this.  It would be nice to be eating a bit better, simply because it's better for my body to function the best that it can.  I've even taken the time to prepare healthy meals, but when it comes down to actually sitting down to eat them, the appetite isn't there and I have ended up just wasting a lot of healthy (expensive) food.  So, I've let that go.  I've let food prep go and I am taking it day by day, doing multiple trips to the grocery store and picking up whatever looks appealing that day.  It's been a very interesting experience, this whole learning to forgive myself - it's hard work, but I highly recommend it!        

Sunday, May 14, 2017

Once Upon a Time...


Over the years I have grown tired of retelling my story.  Every time a new resident comes in, I see a new specialist, ANYTHING new, I always get asked the same question - what happened to your native kidneys?  When it comes to medical personal, I don't usually have the patience to go over the past 18 years of my life when they can read it from my chart, but for those of you who don't know the story I will share it here and may even use this to fill in any new residents that come my way.

When I was seven, my parents noticed that something wasn't right.  I was tired, moody, struggling in school and eventually had blood in my stool.  I was taken to my family doctor first who then referred me to a specialist.  The rest happened very quickly.  I was diagnosed with kidney failure with an estimated 11% kidney function.  To this day they still don't exactly know what happened, but they put down reflux (when urine travels back through the urethra before passing through the bladder).  We started looking for kidney donors.  It came down to three individuals: my dad, my nana and my Great Aunt, Betty.  My nana was not in the ideal age bracket, my dad had three urethras (you are only supposed to have two, it was too much of a health risk for him to donate), but my Aunt Betty was a perfect match.  Unfortunately, we weren't able to move fast enough, and I needed dialysis for a short time before I got the actual transplant.  It was hell.  Not a whole lot went right.  There were machine issues, hernia issues, twin bag issues, missing school issues...it was so bad that the actual transplant itself was a relief.  I had my first transplant February 29th, 2000.  I called it magic day before it was leap year of the new millennium.  It was a success and I got 11 great years with it.

Transplanted kidneys, on average last about 10 years.  They can absolutely last longer, but that is just the average.  I received my second transplant on March 9th, 2011.  I was in university.  The second time around it was my numbers and how I was feeling that indicated it was time for another transplant.  Again, I was tired, moody, had concentration issues, and experienced high blood pressure, low hemoglobin, and a rising creatinine.  Luckily, we were able to get ahead of the game this time and avoid dialysis.  I received my second transplant from my mom's cousin's wife, Jen.  It was a good match.  The first year after transplant is the most vulnerable.  That's when there is the highest risk for rejection, infection, etc.  The year after my second transplant I experienced EBV, Meningitis, little bouts of rejection, low white blood cells, etc.  It was rough and caused scaring on my new kidney.  Things started to look up from there, and I was able to get a few really great years.  I put a lot of stress on my body, running a studio and working long hours.  Between additional stress, scaring already on my kidney and plain bad luck my body started to reject my new kidney.  

That brings us more or less to present day, minus a few details (hey, you got more than most residents do...).    

Thursday, May 11, 2017

Calling All O+


Well friends, we got the call yesterday with the results from our crossmatch and unfortunately, Haily & I were not a great match.  Our antibodies were too similar, meaning I would reject her kidney quickly.  So, in a way I am back to the drawing board.  We do have the option that if someone else is a match for me, and Haily is match for them we can do little switch.  That being said, we are also able  move on to the next potential donor and start working up another person.

In the meantime, I will just keep doing what I am doing and put a shout out to anyone who feels like giving up a kidney :)  

Thursday, May 4, 2017

How to Donate

For those of you who have been asking how you can get tested to see if you are a match (first of all, that was VERY unexpected...thank you) you can contact the transplant donor coordinator at University Hospital in London, Ontario: 519-663-3552

Also keep in mind, I am certainly not the only person in the world who is in need of a kidney transplant.  Be sure to register as a organ donor at https://beadonor.ca

Another way to help individuals is to donate blood.  It's SUCH an easy way to literally save a life.  Trust me, if I could I would all the time (my blood is far tooo complicated and drugged up to save anyones life but mine).

Once again, thank you all so much for your support.  All of your messages, offers to help, and even offers to donate your kidney have been amazing.  xo

 

Wednesday, May 3, 2017

Crossmatch


A little bit of my blood and a whole lot of my sister's blood (pictured above) are about to get reeaall cozy in a Petri dish over the next week.  It's officially crossmatch time!  Earlier this week Haily and I had bloodwork done to basically see how compatible our cells are.  Haily has the same blood type as me, but that doesn't necessarily mean my antibodies will get along with her.  Siblings can be tricky when it comes to being a match.  Sibling are often either a perfect match, or not match at all.  The other tricky part is this is my third transplant, so in addition to my own personal antibodies, I have had two other kidneys in my system with their own antibodies screwing with my system.  I have been on anti rejection drugs since the age of 8, making finding a match for the third time a bit more challenging.

So, we will just have to wait and see!  In the mean time, I am continuing with my pre-opt test (I still have to do an ECG and TB test) and keep doing what I'm doing.  If Haily is a match, we keep moving forward and booking a date for the surgery will come shortly after that.  If Haily is not a match, I still continue with my work up stuff and we move down the list of potential live donors I have (calling all O+).  

Monday, May 1, 2017

Dark & Twisty

DISCLAIMER: I would like to start off by stating very clearly that I am by no means suicidal.  I have been contemplating posting this entry for awhile in fear of people taking it the wrong way.  So again, I will state VERY clearly that while this post gets a little dark and twisty, I have no desire to take my own life.

Besides the whole three kidney transplant thing, I really do have a fantastic life.  I am privileged.  I have never gone hungry (due to lack of available food, the past eating disorder thing is for another time); I have always been able to participate in the activities I love; I have travelled with my family; I have THE most amazing family...
I am the type of person who has a certain way I like to do things - ALL OF THE THINGS.  I like to be busy, and I like to do things well.  Taking a step back from life is not easy for me.  And the fact that I need to right now is so incredibly frustrating.  I experience a huge sense of internal guilt when I can't do all of the things I want to do, in the way I want to do them.  I get overwhelmed and don't exactly know how to deal with that feeling because usually I am just able to do it all.  And this is usually where things start to get dark & twisty.  This is usually when I start to let my thoughts pile up and instead of looking at all of the things that I have been able to do, I look at my long to-do list, all of the things I would (and should) like to get done, but can't seem to create the energy to do them.  Taxes, laundry, dishes, walking my dog, getting groceries - they are all on my list to do and yet I can't seem to get up from the couch to do them.

This is when the idea/reality of having to have a THIRD fucking transplant seems exhausting.  And unfair.  And a really dick move for the universe to do.  The reality starts to sink in that even if I get the transplant, there is the possibility that it won't work and I could end up on dialysis even after the transplant and just for a moment I think it would be so much easier if it all just ended.  The idea of death has never bothered me.  If you think about it, it's kind of easy for the person who dies - their life just ends (and you get to come back as a butterfly and start fresh, if you believe in that sort of thing).  When you die you don't have to deal with exhaustion, or dialysis or laundry.  Death is really just harder on everyone else you have to leave behind, which obviously sucks but for the actual person who dies, it's not that bad.  I've never been afraid to die.  However, the thought of having to live my life in a way I don't want to terrifies me.  Not being able to do the things I want to do, in the way I want to do them terrifies me.  I don't see the point.  What's the point of having LIFE if you can't LIVE it the way you want?  That's why I ride.  My doctors hate that I ride horses due to the risk of falling off, but they give me pleasure, purpose and love.  What's the point of having this "gift of life" if I can't do the things that make me feel alive?

Remember the disclaimer.  You had fair warning - dark & twisty.

It doesn't take too long for this feeling to pass.  The universe usually takes pity on me and sends me some sort of sign that everything is going to be okay; a sunny day, a perfect ride on a horse, Harlow actually tolerating my cuddles - something to remind me that I'm not done here yet.  I know I've got this.  I trust that things happen for a reason.  For some reason the universe needs me to be strong as fuck, so here we go, I can do that.  Strong as fuck coming at you (probably on a horse...with my dog, in the sun...).  

"I am stronger than depression and braver than loneliness, and 
nothing will ever exhaust me."
- Elizabeth Gilbert  
(currently on repeat)

       

Tuesday, March 28, 2017

March is Hard.

I've never particularly enjoyed the month of March.  In February you expect it to be winter, but by March I get the feeling that it should be over.  I think most people do.  It's around this time of year where I have an internal battle over the idea of visiting a tanning bed.  I used to tan when I worked at GoodLife, but for the obvious reason that it's really bad for it, I stopped.  It's always in March that I get that itch to just do a few sessions!  It's the idea of the warmth, and the nicely coloured skin...
I figure I don't really have any other vices.  I don't drink, or smoke; I eat decently well, I workout, I drink kombucha and diffuse essential oils; my only vice has always been the sun.  In the summer I stay out for hours.  I usually end up with quite the equestrian tan of beautifully dark arms and my legs 10 shades lighter.  I love the summer.  But March is hard.

It probably doesn't help that March has never really been happy for me.  March break is a thing of the past; [again], I don't drink, so St. Patrick's Day isn't my thing.  Instead, I have memories of recovering from both transplants in March: my first transplant - February 29th, 2000 and my second transplant - March 9th, 2011.  While I will not be having a transplant in March this year, I am getting constant reminders that it's coming.  The fatigue, insomnia (yup, together is a super fun combination - I'm chronically exhausted, but I can't sleep), irritability (it's an actual symptom of kidney failure - although I don't see the fatigue and insomnia helping), lack of attention span, lack of appetite, and probably my least favourite - water retention.  I'm sloshing as I like to put it.  Mainly the water rentention is a side effect from my blood pressure medication, but edema in the ankles is a kidney thing.  So, needless to say I'm a little grumpy.  It's all uncomfortable.

Because none of this is new, I do have a pretty good system in place for getting through March (so close!).  I focus on the little things that make me happy: investing in fresh flowers every week (white flowers are my favourite for future reference, but tulips of any colour make me happy), making sure I get my pony visits in, enjoying the sun when it does make an appearance, tea, new yummy oils to diffuse, snuggles with Harlow and trying to maintain as much of a normal routine as I can.  I am still very much a type A personality after all, routine makes me happy.  And April will be here before we know it - come on spring!


Thursday, March 16, 2017

The Deets.

So, you may be asking how do we know it's time for another transplant?

A lot of it comes down to "my numbers".  These include a variety of blood tests results, blood pressure and urine sample testing (oh yeah - kidney patient = a lot of pee talk).  I visit my nephrology clinic every 2-3 months to do a round of blood work and talk to my specialist.  They look at things like creatinine (more on this later, but lower is good - higher is bad), hemoglobin (how much oxygen is being delivered to my blood cells - lower is bad, 110+ is good), how much protein is being spilled with my urine, how high my blood pressure is (currently sitting around 157/89 - and that's with 3 different meds *yikes*) and other mineral levels in my diet (potassium, sodium, calcium, and phosphate are the big ones).  Based off of all of the numbers my nephrologist has available to him, he is able to calculate the longevity of my transplant.

4 months ago he was able to calculate that there is a 90% chance I will need another transplant in the next two years.  At the time, I went through a lovely period of denial.  Absolutely not, this is NOT happening to me...again (...again).  I have this "ability", if you will, to suck it up and carry on to the point where it is not uncommon for me to not realize how tired I am.  I can make myself get up and do things anyways.  So when my nephrologist told me we were going to start preparing for another transplant, my response was:

         
Well, it turns out I'm not fine.  I'm tired as fuck, I'm just really good at making myself get up and do things anyways.  This brings us to the second component of how we know it's time for another transplant: how the patient feels.  I started paying attention to how I was really feeling, and what my current quality of life was.  Turns out I sleep - a LOT.  I kept using my 15 hour work day as my excuse - "as long as I can get through a 15 hour day, I don't need another transplant".  When I really looked at my schedule, I realized that in order to make it through my work days, I sleep in my "spare" time.  I'm not as motivated to workout, something that I have incredible passion for.  Walking my dog often feels like a chore, instead of an excuse to get outside and enjoy the fresh air.  I don't have the quality of life that I could/should.

What's the next step?

The next step in my mind is avoiding dialysis.  I have started my pre-work up stuff (x-rays, blood work, ultrasound, etc.) to get myself as ready as possible so that when we find a donor, we can set a date and get going.  As far as donors go, my sister has the same blood type as me, so she has started the first stages of getting tested to see if she is a match.  To be honest, I'm not sure what scares me more - her not being a match and having to keep looking; or having her be a match and me taking my little sister's organ...both options kind of suck, but this is something I am working through (AKA - she keeps telling me to get over it).