Coming September 4th...PKD awareness day.

What polycystic kidneys can become

 Polycystic Kidney Disease (PKD) is the most common life-threatening genetic disorders.  It affects millions of people across the world. The most common form (ADPKD) causes 50% of the people afflicted with it to go into kidney failure at some point in their lifetime.  PKD kidneys become filled with cysts.  Normal kidneys are about the size of a fist. A PKD kidney can be the size of a football and weigh as much as 30 pounds.  Over time the cysts can take over normal kidney tissue and cause kidney failure. The cysts can also cause severe pain. Other issues can be caused by this genetic disorder including high blood pressure,  brain aneurysms, Polycystic Liver Disease (PLD) and many others. There are currently no FDA approved treatments and no cure.
   Sadly very few people have ever heard of this disease!
My family has been affected by PKD for at least 5 generations! My grandfather and his mother both passed away because of this disease. My mother and I have both received life-saving kidney transplants from living donors (mine less than 4 months ago). My youngest daughter has also been diagnosed.
   We are in need of more support and research.  No more children, mothers, fathers, grandparents should have to suffer and/or die from PKD!
Please take time to learn about PKD and make a donation while at it.  Every dollar counts! go to pkdcure.org .
Sign up to be an organ donor. This is the website if you live in Utah yesutah.org   
Outside of Utah www.organdonor.gov
Also, take time and learn about becoming a living kidney donor.  Here are 2 websites that can give you information.

www.kidney.org/transplantation/livingdonors 

http://intermountainhealthcare.org/hospitals/imed/services/transplantnew/Pages/donors.aspx

The kidney I was given by a living donor

My donor, me and our awesome husbands on transplant day

The logo I created for our transplant

July 4th and 4 reasons to celebrate!

First and foremost we celebrate Independence day on July 4th.  So blessed to live in this country and have the opportunities that we do. 

My birthday girl

A birthday is another great reason to celebrate!  This sweet girl of mine turned 9 on the 4th of July this year.  Every year they do fireworks just for her.  She is the sweetest, most precious girl.  I love her so much!  We have a tradition of going to the REAL Salt Lake soccer game every year to celebrate and watch the fireworks!  We had to cheat a little bit this year because I am not supposed to be around crowds until August, but we were in a suit and figured there were less germs there.
    This year the soccer game was even more special because my amazing friend and donor got to be the Hero of the game!  This is what was read prior to the game starting:

The adorable Harryman family on the field

         
"Real salt lake and American Express are proud to recognize Corinne Harryman as the recipient of the “Hero Among Us” honor on July 4th, 2014. Corinne is someone who is the true definition of a selflessness. 6 years ago she met Vicki and quickly formed a bond with her, sharing the experience of each of them having a parent who had endured a kidney transplant. In the near future Vicki would need one as well and Corinne jokingly offered hers. As the years went by their friendship grew; Corinne got healthier while her friend Vicki got worse. It wasn’t long before Vicki would need that kidney and Corinne immediately volunteered to donate hers. At times the donation testing process was long and frustrating but each time she was surprised when the transplant team would call her and approve the next step. 8 months later she would donate her kidney, giving her best friend a second chance at life. One week after the kidney transplant, 2 friends of Corinne were in a car accident. One of them passed away and the other was hospitalized with major injuries. Corinne immediately jumped into action helping raise money for their five children. You would have never guessed that she was recovering from donating a kidney. Corinne is a women of love and devotion to the people around her, someone who is always willing to step in and help those in need. She is an amazing example to all of us. She is a mother and a hero."
     
 The final thing incorporated into this celebration was our 2 month mark since transplant! Life is so good!

6 Week Party

Hard to believe 6 weeks has past.  Both of us are doing great! We had a fun family get together with a little Cafe Rio! It is still hard for me to wrap my head around this whole thing. I have another person's kidney inside of me keeping me alive. How amazing is that! The Harryman family is so wonderful and selfless! I love these guys and we always ave a great time together! I look forward to the many more adventures we will share. 

      

Our sweet hubbies, us, binder shredding!

Did I mention we can officially drive and we don't have to wear abdominal binders anymore!  Happy day!

I might be crazy...

Today is my sweet daughter's 14th birthday.  It doesn't even seem possible! What a great day we had today. I went for a 1 mile walk today.  Took Faith, her bestie Abby, and Kaylee to lunch, to a movie, to get shave ice, and a ton of shopping.  Then I came home and cook 2 different dinners. A year ago this never would have happened! I got me thinking.  I am actually grateful for the things I have been through in the past year.

Darren holding a 3 day old Faithie.  She weighs 4 pounds here!

4 year old Faith

Faith this year

I know it sounds crazy. Having my kidneys taken out was pretty rotten.  Doing dialysis for 2 months was extremely difficult. Getting a new kidney, as wonderful as that is, wasn't easy.  But guess what? It makes up who I am. It is sort of a badge of honor. As I look at the myriad of scars across my body I feel like a warrior.  I earned each of these scars.  I proved how strong I am. Look at what I went through and kept a positive attitude.  And now I am a new person feeling great, having energy, and ready to conquer the world. So many people have been affected by this trial.  I think most everyone has come through it a better person.  I know I have!  These trials are certainly not things I would have chosen to do, but I am grateful for them.

Corinne visiting me at dialysis

 As much as I dreaded having to do dialysis I am so glad I did.  I understand so many things now that I never did before (it didn't hurt that I was the favorite of many of the staff and patients). I have empathy for my mother and what she goes through.  It made me even more grateful for this gift of life I received.  I will not waste it.  I am going to do great things!

One month!

Corinne and I looking healthy again 5 weeks post transplant

Tomorrow will be one month since transplant! I am doing so amazing! I can't remember the last time I felt this good!  I think my kidney function is better than is has been in about 9 years! Corinne gave me an amazing gift that has adapted incredibly well in my body (even without Diet Doctor Pepper)!  We had breakfast together a few days ago and took a picture, but Corinne didn't like it so we will have to try again soon.  I want to put some pictures on here of some of the great supporters we had on surgery day.  None of this would have been possible without them! 

My mom, me, and my Aunt that donated a kidney to my mom 20 years ago!

The love of my life

Our good friend Amy

My cute kiddos

And you can't forget all of us!

No words were needed

      Well we did! It's over! Although no words were needed then, people sure want to hear the words now. As you can see in Vicki's last post we both showed up for the big day! I secretly think many doubted I would. I wasn't nervous at all, I was actually super excited. With the delay in the transplant, I was MORE than ready to get the party started!

      

 

I tuned out when the dr's were telling us to show up with no make up on! I secretly thought if I wore full make up I might wake up with like a tiny bit on and not be so scary.... HEHEHE! (didn't know they vaseline your eyes shut!)

My sexy chocolate Justin had different emotions than I did but ya gotta give him props for knowing... There was no talking me out of this. He knew better. My favorite part was when they gave him a name tag with my name on it so everyone would know whom he belonged to. Yep, thats right! He belongs with ME!

Before I knew it we were ready to go! My cute sister surprised me and showed up at the butt crack of dawn to cheer me on.... Man... I love her!

           

Not a lot of words were said.... There really weren't a lot needed. Life lesson #343 in this experience, Actions really do speak louder than words!

Not going to lie, the first few days were rough! Lots of pain, sick to my stomach and I was pretty much OUT OF IT! I look like a nursing home patient in this picture but this is one of my besties braiding my hair right after surgery. I don't remember too much about the first few days but what I do remember is how much love I felt from everyone!

We didn't need to say much but what we did say connected us in a way that many never get to! Of course we were great friends prior to surgery but at this point we were more like sisters. My kidney liked Vicki's cute little body and started working right away! My body wasn't sure what the heck I had done to it but adjusted quickly enough to let me go visit my sweet friend. 

This was the part.... the no words part....

When I woke up from the surgery that sexy chocolate I mentioned earlier... well he was starring at me. No words were needed. I remembered the look he was giving me! I had seen it 4 other times before! 1st on my wedding day then with each child I bore of his. The look he gave me said it all. The feelings of anxiousness, fear, uncertainty - it was all gone! There was nothing but peace and a strong spirit was present! I could read Justin's face and I knew how he felt. .... No words were needed.

Then when I Vicki walked into my room with that grin from ear to ear... HELLO that made me cry! You should have seen this chic! She looked like she had won the lottery! Duh! I don't even think she walked in my room, I think she skipped! 

No words were needed... Her smile said it all.

Lastly, I have to mention Vicki's sweet kids. Darren brought them all in my room and told me they wanted to say something to me but they were shy. I laughed and was in so much pain I couldn't really say much to him let alone the 3 little angels before me. The 2 little ones mumbled a thank you under their breaths while Darren continued to express their gratitude. I cut him off and said, you guys don't need to say anything! I already know. No words are needed. You could see the gratitude in all of their faces but Faith's eyes spoke volumes while her mouth said nothing. Tears fled from her beautiful eyes as she tried not to look at me. It was yet another moment in this incredible experience where I thought about the fact no words needed to be spoken. I felt her soul and mine connect and knew that this little muffin was forever grateful and I pray she felt my sincere love for her and my hopes for her bright future with HER own mom to be right by her side for years to come! No illness, no set backs... her NEW AND IMPROVED MOM!

Miracles

The big day finally arrived (again).  This time it was a go.  We had to be at the hospital at 5:15 am.  I was up at 2:00.  The day couldn't start soon enough!

Decked out it our twiner sweats from Angi and our matching t-shirts we couldn't wait for it all to begin! We got our blood drawn, IV s started and Corinne was on her way! I had to wait about 90 minutes after she left for it to be my turn. You would think I would be scared or nervous, but I wasn't.  All I felt was peace and excitement!

Corinne's cute little kidney came out of her without any problems.  It was inserted into me and began working immediately! Truly a match made in heaven!  I woke up with a catheter bag full of urine!!! And much, much more to come! It could not have gone any better.  All those prayers from friends and family really paid off. First day post-op we were already visiting each other's rooms!  A true miracle indeed!