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, November 19, 2012

Home Dialysis Training

So we started home hemodialysis training.  I am hoping it is easier than in-clinic, because if it isn't I don't know what I am going to do.

The machine looks like what reminds me of a Commodore 64.  It seems really primitive to be filtering my blood.  I can't believe no one has made a newer model.  But I am happy that Home Hemo is an option.  They interviewed Matthew and I to see if we were candidates.  I am glad they did, because this process isn't for everyone.  We have to be trustworthy to manage my entire dialysis process on our own after only six weeks of training.  Most of these nurses have six months of training, and then they shadow someone for a couple of weeks before being on their own.

This is how the machine works:  We attach two tubes of saline to my port going into my artery.   My blood goes out through one tube and in through the other.  Then the blood gets pumped into the machine where it travels up into a long tube filled with long fibrous tubes.  Dialysate is flowing into the tube on the outside of the fibrous tubes.  As my blood travels through the little tubes, toxins and extra fluid flows out through the teeny holes.  It's kinda like a coffee filter.  Then my clean blood gets pumped back into my body though the venous tube.  I have to sit and do this for about three hours four times a week.  It really seems time consuming.

But I think this process is a whole lot easier than the in-clinic machines.  Those things suck the life out of you.  This one can be adjusted moment to moment, so I can be gentler with my treatments.  Or more aggressive if I want to be.

Our teacher, Susie is so nice.  She is patient and really knowledgeable.  I am relieved.  She doesn't terrify me like other nurses I have had.  I forgot what it is like to trust your caretakers, it's been so long. :)

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