Monday, October 19, 2015

Yoga

Believe it or not I have been practicing yoga!!

 Not just the poses but the breathing and the mindset that goes along with it.  It's actually really enjoyable.  I'm no Yogi yet, but I am an enjoying learning something new!

I read "Yoga Girl" by Rachel Brathen, who is a seriously awesome chic, and was hooked.  Her story was so inspiring.  Yoga is a peaceful, quiet practice where I can can let go of all the medical stuff and just be in the moment.  I may not be able to do the handstands because of the fistula in my arm but i can do the rest and it feels amazing.

When I was younger I was a dancer for 9 years and it would be amazing to get back to that flexibility and grace.  I will still be clumsy and bruised but I will do it gracefully!

Why am I telling you about this?  To remind you all that even though I am on dialysis and I am waiting for a Kidney, which sounds crazy to begin with, I AM NOT BROKEN! I can still do everyday things.   I am me.  I am the me that I once loved.  I am the me that loves life.  I am going to be the healthiest version of me.

As life goes on I'll be like a patchwork blanket...A little of me, a little of Jill and a little of someone that shall be named later....whoever it may be.  I AM A PATCHWORK BLANKET...that does Yoga!

Friday, September 18, 2015

Nurses are Heros

All this talk about nurses has prompted me to say my piece...

I have encountered many nurses in my life and even though I have experienced nursed that are less then NICE, i will ALWAYS be in favor of them!  They work long shifts, clean up bodily fluids i don't even want to think about and have screaming patients that test their PATIENCE!

In all of my hospital, doctor, clinic and emergency visits the nurses have been my own personal Heros.  You see the nurse first.  The nurse is the one that gets you  when your all upset because you don't feel well or have an injury.  The nurse is the one that takes your call when you call the DOCTORS office.  They are their for you.  They are there to help you.

 If I didn't have a problem with needles, I myself would become a nurse.  I still may become a nurse someday, purely because of the impact they have had on my life!

I cherish the MEN AND WOMEN of the nursing profession, without them I may not have had the strength to go on during many of my hospital visits.

Hug a Nurse.

Much love & Kidney wishes,
Katie

Wednesday, August 19, 2015

AHA Moment

Wanted to share this with all of you!  This is my AHA Moment from Mutual of Omaha!  Enjoy!

Feel free to share this....Get Transplant Awareness out there!!!!

Much love and Kidney Wishes,
Katie

http://www.ahamoment.com/moments/18071

SUM...SUM...SUMMERTIME!

Hey Everyone,

    Happy August!  I LOVE LOVE LOVE summer!  I need to move to a place where its summer all the time.  Florida? Hawaii?  I'll take either.  How do I get "mine" to go with me?

   I got an awesome birthday surprise from my besties!! They drove from NJ to spend a girls weekend with me.  It was an amazing weekend.  We did one of those "paint and drink wine events"  which was so much fun!  Can't say its the best piece of art I've ever done but it was the fun the mattered!

   This months doctors visit was pretty uneventful.  Mostly just the normal...too much phosphorus and potassium and not enough calcium and protein.  This month the doc added Fiber to the mix.  I'm supposed to eat oatmeal for breakfast and eat an apple a day.  YES, the doctor prescribed " AN APPLE A DAY!!"  That made me giggle!  Not a huge apple lover, so i bought one of each variety the store had and we'll see who wins!  So far, the one from New Zealand is WAAAAAY to sweet!!! I'm keeping a log of all of them so i know which ones to get when I finish these!  I'll post my findings in a few days!

   I started working out with my Jillian Michael's Game on the Wii!  She kicks my ass and yells at me but its worth it!  AND I get to tell back at her, so its a win-win! Along with walking outside and doing a few other fitness things, i'm feeling pretty good!

   While the besties were here they were curious to how much weight i had actually lost...I had to do the math!!  LOL.  The grand total is...38 POUNDS of toxic gunk!!!!  That's just nasty!  BUT I feel better and isn't that all that really matters??

Much love and Kidney Wishes,
Katie


Friday, July 10, 2015

My arm wanted to go for a car ride...

At first I was not going to post about this but then that defeats the purpose of the updates, this blog and getting awareness for dialysis and transplant out into the world.... so.......

Last night was our first dialysis caused trip to the ER...BEFORE YOU ALL PANIC, I AM FINE!!!

There are 2 holes in my arm, one for the blood to go to the machine and be cleaned and one for the blood to go from the machine back to me.  The bottom hole is the one that goes to the machine to be cleaned.  When "mine" pulled the needle out, everything was fine and then it wouldn't stop bleeding.  Not like spraying around the room but the second we took pressure off it, it would bleed! This went on for TWO hours.  It was midnight-thirty (LOL), we were out of options so we went to the ER.

They took us into the ER registration room where I was IMMEDIATELY given a baseball sized gauze wad and then it was wrapped TIGHTLY with an bandage.  Then I sat there for about an hour.  After the nurses removed the pressure dressing I had to sit for another hour to make sure it was done bleeding.  Then they sent us home.  It was THREE IN THE MORNING when we got home!

Zzzzz!

Like I said, I am fine.  It was really no big deal.  Today i went to the dialysis center for a mini-treatment so my nurses could make sure everything was ok.  And it was.  I have been switched from regular sharp needles to the dull, blunt needles in hopes that it was just the sharp needle scraping on the the inside of my arm.  Sounds great, Right?!?

I'm not really sure why I wasn't going to post this  Probably because i really am fine and didn't want to worry anyone.  However, this is my life now and I enjoy sharing it with all of you!  I know that am i am not alone in the crazy adventure and thought you would all enjoy the image of spurting blood and needles scraping!

Tomorrow is Adventure Saturday!  Those are always fun!  Stay tuned, you never know what kind of trouble we can get into!  :)

Much love and Kidney Wishes,
Katie

Monday, July 6, 2015

Invisible Illness

If you have never heard of "Invisible Illnesses"...Join the club! I had no idea there was such a name...until recently and I have one!!! Who knew?

 The best way to explain this is that I have an illness but you can't see it. I'm not covered in bumps, there's no rash, my skin isn't falling off in sheets (this week!! LOL) and I, so far, still have all my hair. For the most part, I "look" healthy...but inside its a different story. My kidneys hate me! My potassium is all over the place, the calcium leaks out of my bones, my phosphorus is too high and did i mention my kidneys hate me?!?!?

 With that said, here's what I have learned...

 There's two ways to look at invisible illness...
1. Most of the time I look healthy, so no one notices when I am out and about.
2. Most of the time I look healthy, so no on notices when I am out and about, then I mention I'm on dialysis and someone always says "But you look so healthy" and depending on what kind of day i'm having that comment can either make me smile or make me want to punch them in the face. If i feel like poo and you tell me i look healthy, chances are i'm doing everything i can NOT to punch you! Not because of what you said but because inside i feel like poo and would love to feel "Healthy".

For those of you that do not know, I had Kidney Reflux when i was 8 years old.  Basically, the tubes connected to my kidneys and bladder were too long.  They were shortened, but too much damage was done to my kidneys and my parents were told i would need a transplant at some point.  Flash forward 19 years, I received a transplant from my cousin in September 2008.  All was fine until 2011 when i got a Kidney Infection.  The good news?  I couldn't feel the pain of the Kidney Infection.  The Bad News?  I couldn't feel the pain of the kidney infection....so i didn't know i had it until it had already done too much damage to the transplanted kidney.  After way too much time in the hospital and way too many drugs they "salvaged" as much kidney function as they could.  But i was told that a new transplant would be in my future.

Flash forward again.  The reason I'm on dialysis.

Dialysis is not a cure.  It is a treatment.  So is transplant, as i just explained, transplants are not forever.

Every Illness comes with hardships.  Most mornings I wake up with a headache.  The headaches are part of dialysis and they have gotten better as treatments progress. In the beginning they were VIOLENT!  Some days I just want to sleep and some days I have more energy then a "normal" person...or at least it feels that way!  When night time rolls around I get anxiety.  INSOMNIA! Some nights are awesome, I fall right asleep and wake up in the morning.  Some nights, I am still awake at 3am and want to scream!!! The insomnia is very new to me and don't like it one bit.

Adjustments???  HA HA HA!!!  Eating dinner in bed, spending most nights hooked up to a machine, my hubby putting needles in my arm, having 2 holes in my arm, making sure i have an emergency kit with me at all times incase my arm starts spurting blood...the list goes on and on...BUT...its my life and I embrace it EVERY SINGLE DAY!

The hardest part of an invisible illness is that I may look ok but on the inside i am fighting a battle and have zero control over it.  I may not smile at you when you pass by me, i may not even notice you and i am sorry for that.  All of this has opened my eyes to the fact that there are other people in the world that may be fighting some battle....it could be illness, a death in the family or a divorce...all of these things are a battle someone is fighting deep down inside.

Some of you may be wondering if I am ever going to go back to work.  HA HA HA!  The answer is Yes!  I just don't know when.  I want to go back to work, even if its just to feel part of society!  I'll admit that I am a bit nervous about it.  Job hunting is annoying and then I add on "Oh yeah, I can't work because I  have dialysis/clinic/doctors appointment/low iron/migraine/what ever else happens".  No stress there!  UGH!  But yes, I will be looking into getting a part-time job and/or going back to school!

I think that's enough for today.  Just remember everyone is fighting some type of Invisibility! Be Kind to those you meet today!

Much Love and Kidney Wishes,
Katie

Monday, June 22, 2015

Long Overdue Update

This update has been in the making for a long time...With all of your help, support and love we raised the $20,000!!! Me and Mine met with all the nurses and doctors at UVA, who were beyond thrilled that we raised the money! The next step was a few tests i had to have updated, then the transplant teams meets to confirm or deny I am a good candidate for a second transplant. On Friday, June 19th, I went for those tests...a chest x-ray, which took 2 seconds and 2 pictures. The second test was an ECHO, which is an "ultrasound of the heart". I learned that i have a beautiful heart. Perfect in every way. and when my blood pumps through it sounds like an old school rap song where the guy smacks the girls ass! yeah, you know the sound! LOL!!! But seriously, the nurses doing the ECHO were amazed by how perfect my heart was. So its true, all my other organs work just fine, my kidneys just hate me! Dialysis at home is still going really well. We're still learning as we go. I keep losing more weight and just went out and got lots of new clothes, which is a pleasant upside of being poked with 2 needles all the time. Some days are still rough, I still get headaches, and hiccups, but for the most part I am doing really well with this new lifestyle. We are planning our first dialysis adventure away from home in August. Here's hoping we don;t forget anything! YIKES! Me and Mine went on an Adventure Saturday, June 20th, to Staunton, VA to look at a new car. It was a bust and the car had been sold so the Adventure took us to Charlottesville, VA to the outdoor mall. To our surprise, there was live music playing, it was LINDSEY STERLING! She was just there in the amphitheater rehearsing for her show that night. She plays the violin but she plays like a rockstar!! It was awesome and beautiful! Such an amazing woman! After listening to her rehearse for a while we started walking. We came across a new chocolate store. YUM! We each got some chocolates...Peanut Butter cup for Me and a White Chocolate Truffle for Mine. We walked, held hands and just enjoyed a day away from the Dialysis machine. We did have to stop and rest for a while, since it was hot and i needed to sit down, but we did it in style. We found a roof top bar and had glasses of cold water and an afternoon snack. I had Chips and Salsa, Mine had Grilled cheese with Prosciutto. It was a Beautiful day! Sunday it was back to the machine and FATHERS DAY! We did early afternoon dialysis and the celebrated Fathers Day with a Pasta Bar. I made Vodka Sauce, Alfredo Sauce, Marinara Sauce with meatballs, Chicken Piccata and Shrimp Scampi...and it was all WONDERFUL!!! I made an antipasto platter as an appetizer which was also very tasty. Don't let all this dialysis fool you, I still cook and I still love it! I almost forgot...I recorded my Aha Moment with Mutual of Omaha on June 9th. It was an amazing opportunity and i had so much fun! I talked about raising the money for the transplant and how it made me feel. After it was all done, they told me i was a rock star! And it made me realize that i am truly awesome! I'm taking this genuinly awful thing and just making it part of my life. Some days it ruins my life and some days its just an after thought. One last thought...Mine has been so amazing through all of this. He really is my own personal super hero. I love how even when my arm won't stop bleeding, hes exhausted, just wants to go to bed and the stupid cat had been playing with the drain line all night long....He can still make me laugh. He is an always will be Mine.