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

Tuesday, August 25, 2015

Oh it's ON!


Hello Friends and Family! Ahead is a slightly more frustrated post than usual. You know, like I used to post when things were really rough. I sense there might be a few more of these to come.

I have needed to update on what has been going on with my health lately, and I've been waiting to get more solid information, but I don't really have anything solid yet.

Essentially, I am going through a mild rejection of Apollo, Matthew's kidney, since April. The way the doctors have been treating it has been increasing my immunosuppressants and keeping an eye on my labs. I've had two kidney biopsies, and I've been hospitalized four times since April. The doctors in Iowa have been communicating with my local doctor because they are apparently surprised it's happening. My doctor used the phrase "acute rejection phenomenon" to describe it. Being a phenomenon sounds cool, but when it's a medical condition...not so much.

Soliris has been protecting my kidney a great deal. They said if I wasn't taking it I would be in much worse shape. But my creatinine keeps creeping up and down. Last week it was 1.6 (normal is .8-1.2), and my doctor told me that all the professionals agreed that the next step is to get the donor specific antibodies I have formed out of my blood. So the only way to get rid of them is with plasmapheresis. So you all know what that means: ANOTHER CHEST TUBE

So the plan was to get a chest port in my neck, like the good old days, and do some plasma exchange. It's not fun, mostly because it is incredibly time consuming like dialysis. I would be attached to a machine for about four hours and sometimes get itchy and need Benadryl (remember my overdose?  That happened during plasma exchange). I was hoping to get this going as soon as possible so I don't have a chest tube for later when I am playing Lady Macbeth.

BUT...

The doctors are nervous to do plasma exchange on me because of all the infections I have been getting lately.  Every two weeks is another infection, and they seem to be getting worse and worse since my original rejection episode in April. This last weekend I was at the Columbus, Ohio aHUS meetup for Global Genes and wasn't quite feeling myself throughout the evening. I gave my speech and had a few glasses of wine with some other ladies. Then suddenly once I got to my room and took my pinup dress off, my lower abdomen was in screaming pain. It was dull and covered my entire intestinal area, so I was pretty sure it wasn't appendicitis. But I thought I would try to sleep it off. An hour later I was doubled over in so much pain I couldn't think straight, so I called Matthew. He obviously couldn't help from Oklahoma, so he just listened to me moan (freaking out) for a half hour and advised me to take a nausea pill. After several trips to the bathroom every hour on the hour, I figured I had food poisoning and thought I might rest in the morning instead of attending the workshop.

(This was me four hours before the stomach madness started. At this point I felt shaky, but that's not unusual.)

The lovely two Global Genes ladies running the Meetup advised me to go to the ER after consulting the doctor that was attending the workshop. Megan Russo, my mentee in aHUS (although she is really MY mentor after this weekend), took me to the Ohio State University Hospital and sat with me there all day.

Now I have been sick with an infection just about every two weeks since they increased my immunosuppressants in April. Two of those infections have led to hospitalizations.  I'm tired of that.

Tonight I told my doctor I am ready to go big or go home.  I'm tired of this 50% treating the problem.  I don't care about the infections because they are all just byproducts of a suppressed immune system. I want to treat the donor specific antibodies that are attacking Apollo now, not later.  Let's do it, this isn't my first rodeo!

But here's the problem, says my doctor, "Every time I turn around you are getting an infection. If we suppress you more, it could kill you."

Ok...point taken.

So he tells me to come see him in the morning and we can discuss it further. Then he adds, "That is, unless you have an audition or something. I mean, I wouldn't want to get in the way of your precious career."

5..4..3..2....

EXCUSE ME???!!! OH I'm sorry!  Does it upset you I desire a career?  Am I supposed to sit in bed all day like a sap waiting to die?  Or is it too much for me to ask to have a life to live? You think I'm a pain in the ass for wanting to move on from 15 years of this??  Just wait, you haven't seen anything yet...

Now I can't recall exactly what I said, but I'm sure it wasn't anything like that. But if I had been on a higher dosage of steroids, oh boy.

So anyway, :) After a little bit of back pedaling, we agreed that I'm seeing him tomorrow morning and I'm going to try to convince him to make me sicker so I can eventually get well.  That's my master plan. It may not work, but I'm going to try my hardest. And the reason for that is because I'm more interested in being sicker for a little while than slowly losing this kidney.

But he really did get my Italian temper going...



2 comments:

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