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

Saturday, February 2, 2013

This is kidney failure

Ok, there has been some confusion about what kidney failure means, so I thought I would make a post explaining it in words that are less complicated than doctors might use. 

When my aHUS gets triggered, there are microscopic blood clots in my system.  They are made from my overactive immune response.  Those teeny blood clots can clog up my kidney and they caused it to have inflammation.  The inflammation made the kidney scar up and little by little it reduced the efficiency of my kidney.  When your kidney has damage, you don't get it back.  It doesn't regenerate or heal like the liver does.  Once the damage starts, it is limited.  So my mother's kidney got damaged from aHUS and it was beyond the point of no return.  We postponed the failure for four years using anti-inflammatory drugs like prednisone and immuno suppressants.  But I wasn't taking Soliris because we didn't know I needed it.

Once my kidney got damaged beyond redemption, I started dialysis.  What dialysis does is it cleans your blood and removes all the extra fluid that your kidney can't remove anymore.  A healthy kidney is doing all this 24 hours a day constantly.  It removes toxins, keeps the good stuff, makes you pee all the junk and extra fluid out, and releases epoegen into your bloodstream.  Epoegen stimulates your bone marrow to create more blood for you.  I don't make it so I have to inject it three times a week into my body or else I would die from anemia.  

I can tell how well my kidney is doing by how much I pee. At first, when my kidney started failing my pee turned clear.  That just meant that I was getting rid of water, but not toxins.  All the toxins were just sitting in my blood stream making me crazy and sick.  That is why I couldn't eat or function very well.  I was slowly being poisoned.  Now that my kidney stopped working completely, I stopped peeing completely.  I really hate it.  I feel like I have to pee all the time, and mentally I know I should have to, but then about one drop will come out and there is no release whatsoever.  Just like my entry on water, you don't realize how great daily activities are until you can't do them.  So I have to sit on my machine to get rid of all the water I am taking in.  If I go crazy one night and have a glass of water, I know the next day will be me sitting on a machine for hours taking it off again.  It hardly becomes worth it.  

Right now I am being dialyzed and I have only taken off about 1 liter in a little over an hour.  I went to a party last night and got carried away with the ice I was eating.  And I haven't dialyzed in two days.

So right now my native kidneys are in my back in their original spots.  They have been dead for about 7 years now.  I will have four after this transplant.  My mom's kidney just died this week.  So I have three kidneys and none of them are alive at all.  This was a hard week for me because I really thought I would be transplanted by now.  I never thought I would stop peeing completely.  I just thought this was temporary.  But here we are three months in and still going at it, waiting for news.  

Also, I have a lot of people who don't seem to understand the huge undertaking a transplant is.  It isn't something that you can do quickly or easily.  There are tests and tests and tests that have to be done.  You have to be 100% healthy to donate.  I mean nothing wrong with you AT ALL.  People with high blood pressure in any way cannot donate, people with certain past viruses can't donate, if you have depression they won't let you,  if you smoke pot or cigarettes they won't let you, there are tons of things to think about.  If you plan on getting pregnant in the future you should think twice, if you think you might want to save a kidney for a child you might have you should think twice, if you are overweight you might think twice.  Not to mention the recovery for the donor.  You would need to be ready to take a month off of work or school.  You would need to stay in Iowa for most of the recovery process, and you would need a caretaker for at least three weeks after the surgery.  I am flattered and overwhelmed by all the people who offer, and I am afraid most people don't understand the huge commitment it really is.  

Unfortunately sometimes kidneys fail.  My mom's failed in my body this week.  That is an emotional process for her as well.  She gave me an organ that only worked for a little over 7 (mostly sick) years.  7 awesome years in my 20's and 30's, yes, but just 7 years?  There is guilt and sometimes anger about it.  Some might get mad that I didn't take care of it well enough.  "I gave you a friggin' kidney and you went drinking last night??"  Well, ...yes.  It's my kidney now.  You have to trust that I know best what to do with my body.  There is a psychological process that goes along this for me too.  I have to accept that this is now my organ and it belongs in my body.  Or else my own guilt will make it feel unwelcome.  The doctors won't tell you that.  I call it good old Catholic guilt, from my roots.  But it took me years to identify it as "my kidney" instead of "my mom's kidney".   Mom's kidney didn't die because it wasn't an awesome kidney.  It died because my body attacked it for years.  

There are positive things about transplant too, of course.  It is emotionally one of the most amazing things ever to experience and it changes both the lives of the donor and recipient forever.  It is a true act of selflessness and a gift beyond words.  You get to save someone's life who will be forever grateful and connected to you until the day they die.

Again, I feel very lucky to have so many people who love me enough to offer.  Offering still means so much to me.  It really does.  I mean, Matthew might not work out, right?  And if he doesn't we will have to start at square one with the next donor.  

For now we have to (impatiently) patiently wait to receive the 24- hour blood pressure monitoring test that Matthew has been waiting on for three weeks now.  We learned he is an awesome candidate for me in every way.  I have NO antibodies against him.  That's amazing.  We're blood lovers.  I tell him that constantly just to remind him.  Blood lovers......mmmm.  As soon as we know what happens next, this is the first place I will post.  Thanks for keeping me in your thoughts, everyone.  It means more than I can express here.

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