Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:

https://www.youtube.com/watch?v=mG_mrDJ10LM&feature=youtu.be


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!




Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Monday, January 7, 2013

Embolism Scare

Matthew and I were finishing my dialysis today like we usually do.  We have a pretty good routine, but we are at my Nonna's house so things aren't exactly laid out as usual.  After we rinsed back my blood, I forgot to clamp my venous line.  I was always told that if I forgot to clamp it, blood would spurt out from my port and it would be a mess.  But instead of that, air sucked into my tube.  I drew back on the syringe to get it out, but I had no idea how much air got into my blood stream.  So we had to call 911 in case of an air embolism.

The ambulance came with a firetruck and eight strapping men came to get me and bring me into the ambulance.  After two hours in the ER, I had a chest X-ray and was cleared.  They said if air got into my system, it had broken up and wasn't dangerous anymore.

I had a bit of a panic attack when I thought air had gotten inside.  Air embolisms can give you a stroke in seconds.  I knew that I wasn't dying because too much time had passed, but I think the thought of how close I came to having something severe happen was staggering.

At the end of the day, I am kind of upset.  I don't want to "nearly" die anymore.  No more close calls.  I know this sounds a little arrogant, but whatever life lesson I need to learn about appreciating my life has already been learned.  I totally appreciate my life!  For real!  Universe, please stop reminding me how fragile life is.  I know it is.  Can't I  move on to the next lesson now?  Because the near death stuff is getting a little...well, tedious.

On a lighter note, we are leaving for IOWA today!!!  We get to do an entire day of donor testing for Matthew tomorrow.  The transplant team was able to shove everything into one loooong day.  It is great news because we should know more about scheduling things.  So I will update as things happen. 

If Matthew's kidney doesn't work for me, we will probably participate in the kidney donor swap program.  This means that Matthew's kidney might go to someone else whose partner's kidney might go to me.  It's like a wife swap but with kidneys.  Hope that clears it up. :)


1 comment:

  1. I can't imagine how frightening that must have been. Here's hoping you don't have to go through dialysis much longer. D and I are thinking of you both!

    ReplyDelete