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

Thursday, December 27, 2012

One step closer to transplant!

Great news!

Iowa told us there was nothing we could do before January 1st to move the transplant along because all of the blood work needed to be done there, but when I got in touch again to plan the January 9th visit they told me there were some test results they needed before then.

Great!

So I went to the Oklahoma Transplant Clinic and did some labs.  My coordinator Jeremiah told me he would send my whole file when the tests came back.

Also, he told me I was a much better recipient than we suspected.  My antibody percentage is only 44%.  I think this is the percentage of the population's antibodies I can't have from a transplant.  Every time I got a transfusion or a transplant or pheresis they were adding antibodies to my blood.  It limits the donation pool for me as this percentage goes up.  Since I have had upwards of 30 transfusions and plasma exchanges, we thought I was in trouble.  But it turns out I am only a 44% and I am an A+ blood type which makes me the best blood type for a recipient.

Some really good news!  Finally!!

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