“Part” Momma… All Extraordinary Human

Think about it! Would you be an automatic yes if someone you knew needed a part of one of your organs?

Joy is getting my new part from a gorgeous giving soul like Lydia. Not only was Lydia an automatic yes, horses could not have kept her away (ask her husband, Dave)! Just knowing I would eventually require a transplant, curious Lydia asked about my blood type and, being a match, offered her giant-hearted self as a possible donor more times than I can count on one hand, in the years preceding my listing for liver transplant.

I am eternally grateful for my “part” and for the family I am now a part of in a roundabout way.

Once I was listed and live donation confirmed as an option, all seemed to be aligned to make it happen. Testing appointments for Lydia somehow got scheduled in a way that fit miraculously well into a complex family of five calendar, requiring no jigging or reworking of her scheduling puzzle. Not to say that it didn’t require effort on the part of Lydia to make it work, however with the complexity of pieces of her scheduling puzzle it felt easy for her to fit the appointments in. I think I was the only one to create a wrinkle in the carefully crafted plan. But even then the world organized itself to support Lydia’s loving gift.

With that said, why would someone choose to go through major surgery when a deceased donor was a possiblity? Well here is the clinical reason.

a) It allows for less worry going into a life or death situation. Everyone can be prepared and relatively calm. Really a calm experience versus a call to rush in coming at any time.
b) With the ability to schedule the surgery, it can be scheduled before the health of the recipient is failing too badly. Healthier before transplant can make recovery easier.

But you must be wondering, what were Lydia’s reasons? So I asked her!

“Gosh, you ask good questions Jordyn.  Here’s the truth.  My knee jerk reaction was “Ill do it” when I heard about your situation. That’s my mom impulse right there. I just wanted to help you. I know as a parent we want to be the ones to help our kids no matter what. In a case like yours, neither of your parents were able to be your donor (you can explain why if you like)

Learning that a living donor is what the doctors were hoping to have for you, and once I had educated myself on all the reasons why it would be best to go that route, I knew I wanted to be tested. They wanted you to have the best chance by making sure you received a healthy liver. What I got out of it was confirmation that I’m in excellent health (as you know I had been tested for everything under the sun). When Dr. C called me to let me know that he and the surgical team reviewed all of my tests, scans and medical history, he said they had a checkmark for everything they needed for you to have the best chance for a successful surgery. They just needed to hear me say yes. So, I said “absolutely”. 

I love you, I love your family.  I hated what you were all going through. I am grateful that I had the support of my family and friends to be able to help.  After all that, my reasons for doing this is really simple – I just wanted to help.” 

I also can’t share the experience from the donor perspective, so asked Lydia to let us into her world a little by sharing her experience.

“Aside from giving birth, being a live donor is the only other miracle I have ever been a part of.
It is absolutely mind blowing! A part of my liver (67% to be exact) is now in your body.  My 33% is back to 100% and your 67% has/or is on its way to 100% original size!!! Miracle for sure!
I’ve been humbled by the testing process. At every appointment I’d look around the waiting room and notice that I was one of the very few people that was there by choice. Being placed in an MRI for over an hour can be scary. But, I quickly realized how many people are having the same test but waiting to find out “What  is it? How bad? How long?” I was just waiting to see if my liver was big enough for donation. That’s it! What was I scared about? So, I focused on gratitude. Grateful for my health and grateful that I was able to help!”

Given Lydia’s answers I had to ask “What did your parents do right to make you such a great human?”, because parents everywhere are now curious.

“Tough question Jordyn. I’ll try my best to answer it. 

I grew up in a family that didn’t wait to be asked for help. If someone was moving, we’d offer to help. Each weekend we would be at someone’s house helping with something. Pickling vegetables, pruning trees, making sausages etc. and one weekend a month, the other families would come to our house and help with our projects. Everyone could use a hand (or a liver ;)) at some point. It’s such a relief when someone just shows up. 

I also want to set an example for my children. I want them to be brave. To learn about all the different ways we can help others.” 

It then followed to ask “Being a mom of 3, how nice was it to have some only you time on drives for testing and while in recovery?”

“Being a mom means being secondary in your own life. For me, x 3!

I love going for drives, especially alone.

Traveling to and from appointments gave me a lot of time to reflect on all the amazing things in my life and how much I have to be grateful for. It also reminded me how much I hate the Gardiner Expressway, traffic, gridlock and pay parking! That Toronto traffic took my Zen away.

I did appreciate the alone time though. I could hear my stomach growling over the music. A lot of the tests required fasting. Anyone who knows me, knows that was likely the hardest part for me.

Recovery was a bit lonely to be honest. With Covid protocols in place, I had no visitors. The first 24 hours after surgery was a lot of sleep. Day 2 was time to get moving to get out of there. I missed my family and my fridge. The food was so bad as you know. I was home on the morning of day 5.“

So not recommended as an escape from everyday then, but busy moms have to find their alone time wherever and whenever they can (wink). Speaking of recovery, Lydia told me that her expected time in hospital was a week. So getting out so fast tells you what a badass she is. In her own words she shares how the staff was impressed with her toughness.

I went for my first walk the day after surgery with the occupational therapist and a nurse.  It was tough. It felt as if I had done 10,000 sit ups!  They were impressed but, the staff around the floor were shocked. As I completed a lap around my floor, I got lots of “wows” and “ way to go”, etc.  
I wanted to start walking because they kept emphasizing how important it was to my recovery, to prevent blood clots, etc.  I’m pretty sure they didn’t think I was going to actually walk. But I was up and walking! Albeit, at wounded slug speed, but I was walking! 

As I said above, I am grateful and blessed to be the new home for this badass’ “part”. What I want you most to be left with is the gift and joy of giving. Being badass is all about heart! My “part” momma is a good example of badass heart of giving in spades.

Joyful recipient and caring badass,
Jordyn

For information on being a Living Donor visit: https://www.uhn.ca/Transplant/Living_Donor_Program

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Creating Space for Being Me

More and more I get present to the gift of a life I am leading. You may think that is a bit backwards … an 18 year old non-speaking autistic transplant recipient who thinks these challenges are a gift? Well I am clear that for me, these “challenges” and my recent foray into the world of tonic-clonic seizures are all opportunities!

All opportunities? I can hear your mind spinning right now.

Yes, life is what we choose to make it. I choose to be positive and view every event as an opportunity to learn and discover more of what it takes to be me, with my chosen mission, in all circumstances. I choose to interrupt the usual perception of my circumstance being something for someone to pity or feel bad about.

I live consistent with my mission to bring more Joy, Love, and Peace to this planet. I create my World and my experience of it. I am not interested in being the poster child for non-speaking autistics, transplant recipients, or epileptics. I am interested in ensuring that I disrupt the status quo wherever I go, and in teaching people they only know what they know. I aim to get people thinking in ways they haven’t yet considered. I had hoped to do that with just my words, but apparently my meat sack and the Universe had alternate plans, so I roll with it.

Where are you interacting with your circumstance from a place of fear? Where are you inviting suffering rather than creating your World? Where have you integrated beliefs, filters, boxes and constructs that limit your thinking and have you going along with the status quo rather than listening to your inner knowing? I invite you to create your experience of life.

We are always the author of our own story. Choose your words and actions, such that you’re living a created life.

Lovingly and gratefully,
Jordyn

Image by jan mesaros from Pixabay

Champion of my Life

Caring
Happy
Accepting
Magical
Partner
Intentional
Only present
Non-judgemental

The above traits belong to my beautiful loving Mom.
I chose well!
I always want to ensure she is aptly celebrated for the space she creates where I can be fully self-expressed and thrive. Giving and generous, her heart blossoms when she can support another on their journey in life.
Being my parents’ son is a privilege.

I honour my Mom on her birthday.
She chose to ask for donations to my home away from home this year, The Hospital for Sick Children. Her teamwork with their wonderful staff created a light, fun, purpose-filled journey through my liver transplant. Love and partnership was the clearing in my hospital room and beyond.
If you are so moved, help me celebrate her and donate to her fundraiser HERE.

Love and Gratitude,
Jordyn

Climbing back to good health

Being me has been extra challenging for the past year and then some. Slowly I got more and more drained and weaker, lacking energy to do much of anything or workout. My liver had gotten me to almost 18 years of age, but was not going to carry me further. I am blessed to have a new used liver portion and be gaining energy and stamina every day. Just like the road to “blob boy” was slow, recovery is not instant.

Calmly, I am ensuring I am managing my energy, while slowly adding things into daily life. I have been writing more than I have in long while, and gaining back some stamina. Next week, I will start one Outschool class and see how that impacts me. Getting to add in more as I see how it goes. Caringly, my loving CRP Mom has been getting a little squirrelly with the lack of activity and is glad to be getting some more structured activities into our day. She is beyond well trained in the art of chilling out and holding space after an immersive year of going deeply into that loving, supportive, giving head and heart space.

I am excited to be back training with my body whisperer, Erica. I am happy to again be working on strength like a badass. We are concentrating on my core as, well, it is darn weak. As well, we are working on my balance as it has gone to pot along with my core. I am a toe walker, and this is my next hurdle to jump in my goals to get healthy and fit. Years of being on my toes got me into this, and now I work to get out of it lowering my heals one micrometre at a time. Soon I will add my sessions with my PT into the mix too. Having and strong and healthily balanced body will allow me more energy and stamina to make the difference I am determined to make.

I live my life accepting what is, loving the meat sack I was given, and being a badass all day every day. I believe I will gain strength, balance, and stamina one step at a time. Being me is challenging, and it is a blessing I would have no other way.

With gratitude,
Jordyn

Clever and Badass are my Team!

My Transplant Team at SickKids are badass and, dare I say, superhuman.

As you may, or may not, be able to imagine my body’s responses to being opened up, replacing a major organ, and then being closed up again are non-standard. I doubt anyone’s liver tranplant is without its twists and turns, but from my perspective I would put money down on my not being in the straight forward category.

While being darn good at managing the pieces of a transplant puzzle, my Team has had a whole new eye-opening experience in complex body responses. Being a non-speaking autistic with acute sensitivities and a very high pain threshold means that the enigma of me is taking some time to get sorted.

Let’s look at a couple of examples of how we pulled apart my responses to get to the bottom of what was happening with me.

Trigger warning! This may get graphic but is the only way to tell the story in a way that may help others get that what you see and hear may not be accurate to what is actually going on. Also, please note that there is no way for me capture all that was happening… I will give you a taste.

My transplant surgery took about 11-12 hours. Joyfully I got through with no complications and am grateful for the skills of my surgical team.

Being under anaesthetic for that long means your bowels turn off. So before you can have solid food again, they must be awake, witnessed by gas and a bowel movement. This process is also hindered by pain medication slowing things down down there.

So, enough backstory. One of my old stim things when overwhelmed was to say “potty” and go hide in the washroom. When I was first in ICU I said this a few times, a comode was brought to bedside, and I would get on it and do nothing. When we were moved to the floor {our room for the next few weeks} we learned that a BM would not be expected that soon, yet my body kept that up. I also in a flash managed to remove my catheter, and later the IV lines in my neck and upper arm. My tricky tricky body was in fight or flight despite knowing I needed those lines for my recovery.

So long story short, how my body looks when in pain is miles different from someone who is able to discern and speak about the pain. Many questions and ratings on a scale from 1-10 later, we could differentiate incision pain from gas from constipation level and adjust medications accordingly and getting things moving. I am grateful to the amazing nursing staff who helped us get to the bottom of what was happening.

Similarly, but different, sorting out my wean from morphine was quite a puzzle. While that stuff is great when needed, I am not a fan of it. Getting my pain management requirements sorted out took time and that extra time gave my body a little too much to be able to come down off it quickly and easily. When pain was manageable, withdrawal symptoms became my nemesis. I could not initiate communication to let Mom know when the symptoms began to develop so I would be in full sweats and internal shakes before Mom could alert the nurse for a breakthrough dose {a small amount to help with withdrawal symptoms}. Loving Mom and her whiteboard spreadsheet helped us track and see everything with pain and withdrawal scales. It allowed her to know when to start asking me about withdrawal symptoms as we extended my time between morphine doses so we could get ahead of things versus being reactive.

Let’s just say that creativity, teamwork, graciousness with ourselves and the staff, and knowing that we would figure things out were guiding principles through those times.

I am grateful for the playful, the light-hearted, the tenacious, the curious and the skilled staff at SickKids. I am also greatly appreciative of my Mom’s ability to be gracious, creative, and come up with questions, scales, and charts to guide the whole team and empower me to sort through the roller coaster with them. My Mom is love in action.

I hope that gives you a taste of the complex nature of my post-surgical care where my access to communication let me drive my own care and supported my medical team with very specific details needed for that care to be effective.

Love and caring,
Jordyn

Photo: 22-June-2021 12 days post transplant

Days of Change are Here

I am glad to be back writing again. I have had quite a year.

I am sorry for being silent so long, and with what this body has to deal with and manage in order to be in communication effectively, you will not blame me.

Caring so much to make a difference for others, it was hard for me to get clear about what boundaries and limits I needed to set for myself. It has been over a year of creating more recharge time and less and less output time. Getting my priorities straight has been quite an exercise with the moving target of energy reserves I have been dealing with. I have never been good at prioritizing me. My default has been to give of myself and my energy to a fault resulting in a depletion of myself in so many ways.

The change in the emotional soup of the planet took quite a toll on me. Swimming through the thick muck of fear, hate, and anger was draining in a way too hard to articulate eloquently right now. So let’s just put a pin in that and say it sucked big time. I will take a stab at sharing my experience when I have a bit more energy.

I honestly believe it took such a toll on me physically, that my liver could no longer process that foul toxic energy anymore. That combined with 17+ years with Alpha-1 Antrypsin Deficiency and my cirrhotic liver, that had been doing its darndest to last as long as possible, said “enough!”

At the end of February my overnight visit to SickKids for dental work and a routine endoscopy turned into almost two weeks of tests and getting me relatively well. My system was tired and not doing its job and needed a boost. After 9+years of relative stability with advanced liver cirrhosis, medically it was now time to be listed for a liver transplant. Can you say holy bleep!

I am joyfully and gratefully the recipient of a badass powerful piece of my live donor’s liver. I am just under 6 weeks post transplant. In the process I have now expertly crushed so many more medical procedures. I will talk more about that body control and success in another future blog. My gracious donor is getting another part son out of the deal, and I get amazing additions to my chosen family. Yes, there will be a future blog about this selfless and heart-centered human. Both the donor and I are doing well.

Post transplant life is no joke. I have a tackle box, literally, full of medication. My my amazing team will will adjust levels and amounts, removing and adding as needed to find my perfect balance. Without going into detail the meds all come with side effects, and my sensitive body has had some issues but nothing we haven’t been able to figure out as a team. We are learning how to distinguish between the autism impulsiveness and the med effects. It is good thing I know my body well, despite my lack of control, as with the right questions I can powerfully articulate my experiences and be a real team captain. I will think of an example to share more in depth about, so that maybe my experience with this can help others (another future blog).

Good to be back sharing again. As you can hopefully hear in my tone, I am not sharing for your pity or for shock value. We have approached this event with good “this is what is so” attitude and faced each new twist and turn with humour, gratitude, and as the opportunity it is for growth. I won’t follow you into dramaland should you go there. I am caring to remain drama free. You may notice that you want to go there as this is a huge serious life changing occurence, however drama is not the energy I have chosen to attach to it. Grace, humour, and gratitude are my choices.

With gratitude for your listening,
Jordyn

Image by Rudy and Peter Skitterians from Pixabay to depict finding the perfect balance.

Can we generate more love please!

I get my plea is one that you may also wish for – more love in the World!

I love deeply and fiercely and with all I have working to elevate the Joy, Love, and Peace in this chaotic and uncertain time we are living in. It was a job I was honoured to accept and a loving mission I continue to fulfill.

Joy is hiding in each of us. It is pleasantly not too far below the surface. It gets covered by the thoughts of the past or worries of the future. When we are just present, in the Now, we are good beings of only Joy, Peace, and Love!

My work will not be complete in my lifetime unless we all take more moments to be in the Now!

Over this time of celebration and love, I entrust you to take more moments to be present, grateful, filled with wonder, and to laugh a LOT! Let’s pleasingly elevate our personal experience of Joy and be beacons for others.

I love you all!

Jordyn

Image by Gerd Altmann from Pixabay 

How can we go forward

It has been a while since I last wrote. I am fully healed in my elbow. I let myself take the time to just be chill and heal. I know that in this world of go go go and expectations, I am an anomoly LOL.

I have not jumped back into the weekly blog as my content is mostly around my experiences. In a time of isolation and ensuring that my high-risk body stays safe, there are few adventures to share about. I let myself be totally ok with not being lovely weekly blogger given I needed the energy to just stay regulated in the crazy emotional soup we live in.

If you are a regular at reading my writing you have a clue how sensitive I am to the emotional energy around me. With a powerful fear generating virus on the loose, plus the US election, plus everyone’s opinions of what actions to take around the virus, plus other emotionally charge events happening everywhere I have been an exhausted dude. Joy is not on the menu these days as an ingredient in the soup.

I would get used to one level of yuck, and start to find my way, just to get bowled over by another more toxic wave. I aim to be a beacon in the world for Love, Peace, and Joy but was experiencing that being drowned in a soup of fear, upset, and righteous anger. I let myself stop giving so that I could take care of me – just like they tell you on the plane to put your mask on first before assisting others.

I lost myself in my loop of protection, so much so that I am only now sorting myself out to be the beacon I am meant to be in this World. I can make no promises about what that will look like, and am only going to say that love is the answer always.

Love,
Jordyn

Image by Evgeni Tcherkasski from Pixabay 

Good Grief! I did a number on myself.

I do not recommend tripping over your own feet!

I managed this oh so not story worthy feat (pun intended) on my Mom’s birthday and WOW did I do a number on myself. I will keep this short but needed to let you know that I will be keeping quiet for a while.

Landing on ones arms when falling forward results in trips to ER, multiple x-rays (I am a champion x-ray patient), lots of worry, one radial head fracture in my primary “speaking” elbow, big ass bruises on both arms leading to reduction in output because oh so flipping achy to point.

I am super thankful for my new bone doc that let us come in and check my left side yesterday, which is only a degree less painful than my right. And that this type of fracture means no cast (despite how badass that might have looked).

So I ache along keeping my loquaciousness in check, and make the most of the words I do use. Lots of appreciation being gained for my peers with more compromised motor than I have. I feel ya peeps!

I will be back when each poke doesn’t hurt, or the lesson I am getting to share is worth the effort.

Jordyn

Good being goal and mission focussed!

I think if I didn’t have my loving pleasant Mom to help me through the last little while I would have been a bigger blob or mess. This is a shout out to those that give of themselves freely to let good charges shine.

Letting go of societal goals and expectations, or familial ones, or personal ones to create an expectationless clearing in which the seed that we are meant to be can grow without hinderance is no easy feat. I love that Mom confronts her comparison demons, adopted beliefs from family and society, and intentionally questions what is in service of what I/we are creating.

Joy, Peace, and Love can’t exist when on the hamster wheel of doing what is expected of you, especially when against your inner knowing of what is best. I think a lot of good humans would be happier if they got present to, and acted consistent with, what brings them Joy, Peace, and Love. Much like our ability to be present to when we have had enough to eat has been lost, so has that inner trust of ourselves been lost in the face of seeking external approval and acceptance.

Joy, Peace, and Love are a creation! They are created from within.

Jordyn