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

Wednesday, April 1, 2015

Time to fill you in

So this morning I was admitted into the hospital for a kidney biopsy on Apollo, Matthew's kidney.

Since the transplant two years ago, things have been great with the numbers.  But recently, during routine checks, the numbers have been freaking out.  Six weeks ago, my creatnine went up to 1.6 (1.0 is ideal).  So we adapted some meds, and it went down to 1.2 again.  Then two weeks later, it was 1.7.  Not wanting to risk waiting around too long (this is my second transplant, after all), I asked my Dr. if he wanted to do a biopsy.  He said it wasn't a bad idea, and that we should draw labs one more time to make sure.

Yesterday I drew my labs, my creatnine jumped to 1.9, and my blood pressure was around 160/100 (really really high for me since transplant).  My doctor called and didn't give me the option of backing out of the biopsy.  He said he had tested my immuno levels to make sure it wasn't a mild rejection, which it isn't.  He checked to see if I had a virus, and I didn't.  So he is a little baffled.  Always a scary sign.  I am planning on contacting Iowa tomorrow just to keep them up to date.

As a side note, my great friend Chelsea brought me some essential oils to help with the kidney and blood pressure issues (lavender was my jam).  Let me note that nothing has been able to bring my blood pressure down, but this morning when we arrived and they tested it, it had gone down to 126/88. Pretty much the perfect level.  Those oils are really intriguing me.

So today we waited around a while before we did a biopsy, during which Matthew and I took a few pictures of course.
  :)

 Waiting to get checked in


Waiting for the Biopsy , Matthew was a nervous wreck today.  But can you blame him?  What a sweetheart.




 It was hard to get these zebra shoes on with those rubber hospital socks, trust me.









Now we are waiting for results.  I am staying overnight by myself because
Matthew has a long day at work tomorrow.   There's a beautiful spring storm and I consider that a great omen. After all, I have a zebra umbrella now!:)

I will update as soon as I know more tomorrow.

Thank you so much for your kind words and solid support, everyone.  I appreciate your reaching out
We never feel alone in this.



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    "

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