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!

There are no coincidences!

There were movies, pizza and tissues Monday night instead of blessings, sleep and bowel preps. I wallowed in my sorrows and snuggled my kids while trying to find peace with this minor set back. I did my best to ignore the "what if's" playing in my head! I wanted to just stay in bed Tuesday and be angry. Instead, once again friends came to my rescue! 

My cute friend Heather took me to lunch and the temple!

Just before leaving for the temple my friend Amy called and said that her dad had a pretty neat story to share with me. Amy's dad is my adoptive father whom I genuinely love with all my heart and would call for anything I ever needed so again, NO COINCIDENCE this story would happen to him! He is a baseball coach and had just finished giving a private lesson to a young man and asked him after the lesson, "what are you going to do now, go get a bite to eat?" This young man quickly reported he would not be eating because he was fasting for a young boy in his ward that was dying. You see the boy needed a liver transplant and one had just became available! He was having a transplant ASAP... yep you guessed it... at the SAME HOSPITAL, BY OUR SAME TRANSPLANT TEAM! Suddenly, it all made since and I dropped to my knees to offer a prayer for this young man and sick boy! I may or may not have thrown in a few I AM SOOOO SORRY I  was angry comments too! It all makes sense now. Oh and don't you worry, I have cleaned out 3 fridges, hit two of my kids soccer games and cleaned like a pregnant nesting lady! Vicki... well Vicki is a freaking rock and she didn't skip a beat! She just went with the flow! Okay... here is to May 2nd ( I hope) unless of course some precious boy can get a liver instead :)

Mentally Ready!

Well, everything was done! My bag was packed, carpool lists arranged, meals scheduled and toes beautified! I was 100% mentally ready! In fact I will admit I was excited! I got the call from Myra, our transplant coordinator telling me to arrive at 5:00am Tuesday morning! You betcha, I'll be there! 

Then it hit.... the second call was YOU HAVE BEEN DELAYED! 

This completely threw me off! Totally off my rocker! There were tears! Big alligator tears, fear creeped its way in and everything that seemed so right suddenly felt so wrong! We were told there was a liver transplant that needed to happen now. To be honest I had mean thoughts and had to research why a liver transplant overruled a kidney transplant..... OKAY OKAY.... I get it but seriously I WAS mentally ready and now I am mentally a mess!!! 

My friends spoiled me! It was about 15 minutes after I left the salon that I found out... we were postponed!

Celebrating life party!

      With the transplant scheduled for April 29th, we decided to surround ourselves with family and friends! Word traveled fast and we quickly had over 100 peeps gathered together just to celebrate life. It was so great to see so many supporters and I loved meeting Vicki's family! I did not expect to cry but couldn't hold back the tears when Vicki's mom hugged me and just kept repeating, "Thank you so much for saving my little girl! Thank you! Thank you, thank you!!" Yep... I cried. I decided right then and there that moment would forever be captured in my heart! I will take that moment to the grave with me! It was so sacred and special to me! No words needed to be spoken, I could feel the love and gratitude by her embrace. What an honor it is to be in this position!

      Here are a few pictures from the party.  Sad we didn't get a family photo of each of our families. We waited for all guests to leave and then we prayed together. What an incredible experience and validation of God's hands in two peoples lives. I do not believe in coincidences and truly believe our paths crossed years ago to set us both up for this event! 

Vicki's husband Darren enjoying some friend time

Me and my bestie Angi

My mom and her husband. So sad I don't have a picture of Vicki's mom!

The mother in laws - THEY ARE AMAZING - definitely in- laws and not out- laws hehe

Me and Vicki! Seriously could she be any prettier? She doesn't even look sick!

Me and my best friend since stinking birth, Traci! Love her

This is my twin, Nicole! She is dreamy! (okay we aren't really twins but I hate that I look older than her so I say we are twins! She is also my bestie!)

This is Vicki, Darcy and myself. Darcy is in my new neighborhood and has known Vicki and her mom for years! 

Complications

Complications are a part of life.  If we like it or not.  The last couple of weeks were supposed to pass in a flurry of excitement and getting ready for the next surgery (the happy one).  I had actually started feeling like I was alive.  Things often don't go as planned!  Saturday (about 2 weeks ago) I woke up to blood all over myself and a dialysis catheter that decided to fall out.  I called my center (since I was supposed to have dialysis in an hour) and they sent me to the emergency room.  Great place to spend Saturday!  After about 10 people telling me how lucky I was that I didn't bleed to death I got sent to radiology to get a new line placed.  Normally they sedate you for this procedure.  I still needed dialysis and think I am much tougher than I am, so I had them put it in without sedation.  I really don't recommend it.  

The next week was tough because the dialysis cath they put it hurt like crazy and I could hardly move my neck or right arm.  Then Thursday last week my platelet count dropped (I mentioned this in my last post).  Friday  the transplant team caught wind of this and freaked out.  I was sure the transplant would be delayed.  They sent me in Monday to see a liver specialist.  He ordered a bunch of tests.  Tuesday I had to skip dialysis and have a liver venogram and biopsy.  I was at the hospital most of the day for that.  Wednesday I had dialysis at 5:00 am then had to go over to transplant for our pre-op appointment.  Corinne and I tried to cause some trouble, but I was too tired.  Corinne took lots of pictures and she will have to post them (hint hint).  Yesterday I had dialysis again and went back to see the liver doctor.  My platelet count had gone back to normal and he found nothing wrong (YAY!)  I'm not sure why all of this happened.  I'm sure there was something to be learned.  I sure hope I learned it!

That leaves us with only 4 days to transplant!  

Paying it forward...

Well here it is my long awaited post. I was so excited to start this blog with Vicki and then found it was impossible to find the time to actually write. I have thought about what I would say a million times and how eloquent my words would be! I imagined the 3 readers of this blog would just be mesmerized at what I had to say THEN I woke up from my crazy dream! Reality is its just plain and simple. There really isn't some big story or lightening bolt moment... it's just all been meant to be! 

My dad was given 6 months to live when he was 40 years old, I was a senior in high school! He suffered from Juvenal diabetes and his kidneys were failing as a result. His sister donated her kidney to him and gave him a second chance at life. He later had a pancreas transplant and another kidney transplant 4 years before he actually passed away. He died at the young age of 58. He lived long enough to see his kids marry and met all of his grand kids. I will forever be grateful for my unselfish hero's Jeri and Chad whom extended his life through kidney donation!

I met Vicki about 6 years ago and we immediately discussed our common experiences of one of our parents enduring a kidney transplant. We talked about her kidney disease and how one day she might need a kidney and I jokingly offered mine. Little did I know :)

Well the years went by, our friendship grew - we never lost touch. I got healthier- she got worse. She posted her acceptance letter of transplant on face book and I zoomed in on the number and called to set up my testing. Many people offered to donate to Vicki but I figured action speaks louder than words. It was a long process and at times frustrating but each time I would be so surprised when the transplant team would call me and approve the next step. I was so afraid of failing, as if I could study for this type of a test or something. The only thing I could really do was drink more water and less Diet Dr. Pepper - um hello... that was HARD! 

So 8 months, a million test, many tears, gallons of water and a whole lot of love later - we have arrived at our transplant date. I am super excited and can't believe I get this incredible opportunity to pay it forward! I was always on the recipients team and watched as someone so close to death got a second chance at life. What a blessing it is to be given the chance to donate life! I am even excited for my scar! I'm thinking of it as my legalized tattoo! It will serve as a reminder of our incredible journey that didn't just start with Vicki but with my own childhood and the miracles I was able to see. Recycled life! Come on weren't we all taught if you have 2 of something you should share? Well the way I see it, God has blessed me beyond measure and it is only right that I give back! I am honored to give to this amazingly strong friend of mine and I marvel at the strength she has shown during her our journey. Here is to a better life Vicki! Now just keep fighting so we can make this happen! 

Less than 2 weeks and counting! 

Jeri (left) Chad (right)

 My cute son and "Pa"

T-shirts...check

A few months ago I came up with a design that I wanted to use for t-shirts. Last night when I was wide awake at 3:00a.m. (as usual) I completed the design. I got the first 2 made today! I am pretty excited with how they turned out!

On a completely different note, we had a bit of stress at dialysis yesterday. My platelet count has dropped to 65(they are what clot your blood. Normal is 140-400)  the nurse at dialysis told me that would delay my transplant 2-3 months. I was super stressed. Thankfully the doctor came in a few hours later. He said they could do surgery as long as my level is above 50. He did some tests to see why they are low. So now we must pray for them not to drop any more!

This is the fun we had at our house today. We are getting ready to celebrate Easter and the resurrection of our Savior. How grateful I am for Him and all that He has done for us! It is a especially meaningful for me this year as I will be receiving a new kidney and a whole new life. Thank you Corinne for following the Savior's example and giving me this precious gift!

A little bit of good.

Tuesdays are my hardest day of the week.  Normally I have dialysis every other day, but I skip two days Sunday/Monday leading up to Tuesday.  That means I always gain extra weight (I don't have kidneys so I don't urinate) and am often swollen.  Also, for some reason the dialysis is almost painful.  If I can come home and crash for and hour or so I can usually sleep of the misery I feel after.  If I can't well…
So today was no exception.  Actually quite a bit worse than normal. We took off too much fluid and they makes anyone miserable.  I did't get to sleep it off either.  I really hate to complain, so I'll be done with that now.
I did get some good news at dialysis.  My monthly labs came in.  There are  a lot of labs watched in dialysis.  Many of these are things that can be somewhat controlled by diet. These are the ones I have been most concerned about:

Lab                                  Normal for dialysis patient               mine
______________________________________________________
Potassium                                        3.5-6                                        4
Phosphorus                                      2.5-5.5                                    1.4
Albumin (protein)                             over 4                                   3.5
Hematocrit (blood level)                   30-33                                    30

So I totally rocked my labs!  The best news is that because my phosphorus is low I don't have to take tums every time I eat!!  I am so sick of have the residual tums taste in my mouth.  This is huge!!!  Also I can have a little more phosphorus in my diet (dairy products, chocolate, who care about the rest).
I can have more potassium in my diet (avocados, oranges, potatoes, tomatoes, long list).
My protein is getting so much better I am not taking the nastiest liquid protein in the world anymore (they didn't tell me to stop taking it….I just decided I have enough torture in my life right now!)
Things are certainly improving!  For the most part I have been feeling good!
                                 Only 3 weeks from today!!!

Meet the parents night

Well the time has come that the parents want to be involved.  Even though Corinne and I have both met each others moms and in-laws it was time to get together and make sure everyone approves.  I was a little bit nervous.  What if they met me (or re-met me) and decided I was not worthy of this incredible gift I was receiving from this amazing daughter of theirs?  I know I am not really worthy.  I mean how could I be?

Anyway we had an amazing dinner at the Harryman house.  Our kids are very close in ages so of course they had a great time!  It is funny as time has gone by our two oldest (Daxton and Faith) who used to have a lot of fun together have become very shy around each other!  Chalk that up to teenagers.   It was really a lot of fun spending time with the parents.  My mother didn't come, but my mother-in-law did. Everyone seemed to get along great!  It is good since are families are merging in a very different way!  From my perspective it was and amazing night! Hopefully everyone agrees...

22 days until transplant!  Isn't that crazy?  I do not have one once of fear or nervousness.  The Lord has blessed me with peace and Faith.  This time of trial really is a blessing.  I have learned so much.  I have never felt so much gratitude in my life either.

Knowing your limits

Ok this is one area I struggle in. I may know my limits, but I don't necessarily stick to them!
I felt really well yesterday. Right now I don't have a lot of days like that. I really do take advantage of them. Last night and today I am paying the price.

Sore feet! Hopefully sitting here at dialysis the fluid will get pulled out of them.  As I have more good days it makes me so excited to have this transplant done and have many good days.  It has been so long!  I am really going to try harder not to over do it right now.  I just need to be patient.  Great times are on the horizon!!!

Corrine…it is your turn to write!

The count down has begun!

Corinne and I wanted to document our journey to transplant.  It all started almost 6 years ago.  The first time our families spent time getting to know each other Corinne told me she would give me a kidney someday.  I think we both thought "someday" would be a lot further away.
August 2013 is when it all officially started.  I started communicating with the transplant clinic.  In October I went in and started tested and got approved for transplant.  Corinne started her testing in October as well.  It has seem like a crazy twisty path to get to the point we are now, but Corinne and I have held hands and followed the yellow brick road together!

Girl bonding  time at dialysis

I had my kidneys removed February 28.  I have been going to dialysis 3 times a week since. On April 29th Corinne will give me the greatest gift possible.  She is giving me a new life.  I could go on forever about my gratitude and how amazing I think it all is, but I don't want to cry!

27 days to transplant!!!!!

-Vick