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:


~ 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, August 31, 2005

My Mom is the bravest woman I know.

But when I came back from Europe, the disease really took off.  By Thanksgiving I needed a biopsy and was suffering severe renal failure.  My mother and sister got tested to be donors, and we decided my mother would be the lucky one to be first to give me a kidney.  At the fine age of 62, she got ready for the surgery.

Here is a message I wrote my family:

Mom and I are sitting in my school library and we thought we should update you all on the latest.   So far, mom has been tested for every kind of abnormality you can possibly find in the human body in the past two days.   She has been given x-rays, blood tests, cat scans, tb tests, ultrasounds, heart monitors, ekg's, echocardiograms, stress tests, you name it.   If something is wrong with her, they are going to find it.   And luckily, all of her numbers have been very good.   All of her levels are in the "normal" range, and the doctors are saying she is looking like a good candidate for my kidney donor.   We met with her surgeon today (kind of a goofy cooky guy) and he seems optimistic about the process.   He told her all about the specifics and what she can expect afterwards.   I am getting my testing done on this friday, and as soon as my tests go through and I meet with my surgeon, we can begin to schedule this party.   Medically, everything is looking great, unfortunately we are having some financial catches and hurdles.   Basically, I am possibly too young to get the full benefits of medicare, and I am too old to stay on my parents insurance forever.   (go figure!)   It gets really complicated after that, so we are trying to interpret all of the information that is being thrown at us.   We will keep everyone posted as things evolve.

And then of course this description of the transplant itself (yes the transplant was at the same time as Hurricane Katrina):

So, Mom, Sandra and I arrived at the hospital the day before and all we had to do was prep for the surgery which for mom meant that she couldn't eat any solid foods (and they emptied her out) and I was supposed to eat as much as possible.   I don't think I slept AT ALL that night.   Mom slept like a baby.   She amazes me.   She never showed any signs of apprehension or nervousness.   I on the other hand was going crazy just waiting to be operated on.   In the morning, they wheeled mom out.   Sandra and I kissed her goodbye and she was gone.   She never looked back.   It ripped my heart out to watch her disappear around the corner.   Next came the longest hour ever.   Waiting for them to pick me up.   But as Sandra told you, I was able to take my I-pod with me.   This was a blessing.   

I listened to a mix of songs that make me feel strong, and make me feel emotional.   Some techno and dance music, and the song from the Lowes commercial, and some Tori Amos which makes me calm.   I was so nervous in the pre-op room that I was shaking.   The nurses seemed understanding.   One of them came up to me with a BIG needle and said as she put it in my IV, "This is five beers".   I said, "Thank you so much, that sounds like fun..."   that was the last thing I remember.   I didn't lose consciousness at that point.   I found out later that I kept talking for a while.   They told me I kept asking about mom.   Where is mom, how is she, is she ok, things like that.

I woke up in ICU and nurses were already having a conversation with me, which always makes me uncomfortable.   I like to remember my conversations.   The first thing I did was feel my stomach and my hand touched the bandage with the staples underneath.   It all felt quite numb to me.   Then I ran my hand around my neck, there was a HUGE IV in my neck on the right side.   Its called a Swan, and it is designed to go directly through my artery and sit right outside one of my ventricles (I can't remember which one).   This really weirded me out.   I also had a drainage tube coming out of my side, a catheter, and what the nurse called a "downy ball" hanging out of my scar.   It was basically a timed release of numbing chemical that went all the way through my side.   And there was an IV in my right arm, and an IV in my left hand.   All the IVs were for different purposes.   Some of the chemicals are supposed to go directly to my heart, some are supposed to go through my arm, and one of the IVs was designed so that they could draw blood without poking a new hole in me every few hours.   They took so much blood because they had to keep monitoring me to make sure the kidney was all right.   They also have to keep an extra generic IV in just for insurance purposes, even if they aren't using it.   

So ICU was difficult to sleep in because they never turn off your light.   You don't really have a normal room.   I had a sliding glass door and a light curtain covering it.   I had a TV which stayed on the whole time.   And tons of fluids everywhere.   At one point I had about seven or eight chemicals going through me.   Also, they didn't feed me for three days.   I didn't want to eat the first day or the second day.   They wait until they listen to your stomach and hear things moving before they feed you...seemed strange not to eat for so long.

My first few days in ICU were pretty long.   I spent most of my time with my nurses who are quite attentive down there.   They were really nice and I think they were glad to have me there since most of the time they get people that can't talk or move or breathe by themselves.   I had one nurse called Honey that snuck a phone in for me so I could talk to Matthew and Mom.   She was my favorite.   

Oh!   One weird thing:   when I finally needed to use the bathroom, I asked the nurse, and I was curious as to what I was going to do because there wasn't a bathroom in my room and I couldn't walk that far.   Well, she said, no problem, and PULLED A TOILET OUT OF A CABINET.   It had running water and everything.   It was like Mary Poppins.   And when I was done, she just shoved it right back in the cabinet...weird.

Friday was the worst day of the whole thing.   I was itching to jump out of bed and run around.   My back hurt from staying in bed for three days, and I was just plain bored.   The only thing I wanted to watch was CNN coverage of the Hurricane.   I can tell you everything you want to know about what happened according to the news (which can be quite skewed).   And I was also itching to get to my phone to donate money, but I wasn't allowed to.   I figured I had an excuse to wait a couple of days.

So Friday night, Matthew came in to see me at ten thirty.   They let him come in because   all I did was talk about him.   Anyone who came in to my room had to wear a mask, gloves and a long plastic coat that was quite oversized.   Matthew looked like a little kid.   I laughed and then I hurt.   

On Saturday afternoon, Bently completely surprised me by walking in to my room to say hello.   It was a great surprise.   Then the kidney transplant nurse said it was time to go upstairs.   My kidneys were functioning better than hers.   This was a whole day early.   They were already impressed with my progress.   However before they released me, they removed my swan IV.   I watched them pull a ten inch tube out of my heart through my neck.   I freaked out just a bit.   It was definitely scarier than the actual surgery.

So they wheeled me upstairs and they opened my door.   To my delight, Sandra and Brittany decorated my room with fun smiley faces and colorful lanterns.   There were flowers that people had sent to us everywhere and tinsel on the TV and mirror.   It was such a festive sight after leaving ICU where you can't have anything contaminated in the room.   It was wonderful to see.   The rest of the weekend, Matthew pretty much didn't leave my side.   But he had to wear a mask whenever he was in my room.   I did get to kiss him, but only with masks on.   He was a good sport.   He spent three nights on my little uncomfortable couch in my room, waking up whenever they came in to take vitals from me, and giving me backrubs, brushing my hair, and helping me wash my back.   I was so glad he was there.   

Mom was in the room right next door, so she walked over to see me a few times.   It was great to see her.   I missed her a lot while we were separated.   We had spent two weeks straight together until the surgery.   I can't explain the feeling of seeing your mother suffer to make you feel better.   Its heart breaking.   She felt worse than me.   In fact she still feels worse than me.   I know she will feel good as new soon, but I still feel like I will never be able to repay her.   

Anyway, the weekend flew by and I was feeling great.   A bunch of my friends came to see me at different points.   I loved to have visitors.   The funny thing is, when you are in the hospital and you don't feel awful, it makes you twitch a lot.   Not to mention the steroids they put me on make me want to stay up all night.   The doctors kept coming in and telling me how great I was doing.   So all of your prayers were working quite well.

After Sandra and Matthew left on Monday, things got slow and boring again.   I tried to hang out with Mom, but sitting up for long periods of time was difficult for me.   It didn't hurt.   It just felt like I had someone's fist in my side, or like someone had cinched a belt around my lower abdomen really tight.   The three of us went for a long walk down the hallway, and I then realized that recuperation was going to take some time.   Saying goodbye to mom was hard too.   She left on Tuesday.   I would have left with her, but they couldn't schedule my stint removal because of the holiday.   

On Wednesday, they wheeled me down to the Pre-op room, where the anesthesiologist prepared me again.   This is when they told me what I said the week before.   They are getting to know me in that operating room.   So they calmed me down with some fun drugs, and wheeled me in.   Then the next thing I knew, he had a needle in this hand and he said, "Are you ready?   I am going to send you to the beach"....out cold.

I woke up, and they had removed my stint, which is a plastic tube that was connecting the inside of the urethra from Moms kidney to my bladder.   ( they had to remove it via my bladder with "a light and some tweezers" says my doctor)   They also removed my dialy-sass tube, and I had them remove my drainage tube from my side as well. Normally they remove drainage tubes while you are awake, and it hurts like a mother.   (not my mother, just a mother)   They pulled them from my breast reduction without warning and it hurt more than the surgery pains.   I begged them, since I was under to help me out.   I told everyone that was involved to vouch for me while I was unconscious.   Apparently they did.   I woke up a little emotional from this one, really just relieved to have all these tubes off of me.   You can't imagine what its like having a tube hanging from your stomach down around your knees for three weeks.   I am so lucky that I didn't have to do dialy-sass longer like most other people.   It was wonderful to feel my stomach clear again...except for the 22 staples of course.

The last day was spent correcting insurance problems from my hospital bed.   Not something I wanted to do, but it was either fix it there or put 6500 dollars on some credit card I would have to steal.   The problem was finally resolved, and they released me after making sure I could fill my suitcase of pills.   No really, a suitcase.

I got a ride home from my friend who is also a professor of mine.   We actually had to bring a cart to carry all of the flowers I had with me.   When I got home, I went over all the new rules and Nonna cooked dinner, which I ate three times as much as Mom did.   I have signs of rejection to watch for, and rules with masks and gloves and washing hands, and touching other people and things like that.   Its a lot to remember, living with a transplanted organ is an entire change of lifestyle.   But I am so grateful to have this opportunity to get my life back and move on to the things that I have always wanted to be able to do. 

So that’s most of the story in a nutshell.   Let me know if I left anything out you wanted to know about.   Its mostly sleepless nights and crazy tubes and bad meals and tons and tons of emotions.   This was more emotionally tolling than anything I have ever had to do.   I think the weight of it was affecting me before hand.   I am so glad that it is over now, and can’t believe it all happened so fast.   Mom’s kidney seems to have jumped into my body not knowing anything ever happened, maybe a little confused as to how mom’s body got so dirty all of a sudden.   But it went right to work to fix it.   My levels are as normal as the rest of yours, as long as my body doesn’t figure out that we are tricking it.   

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