WOOOOO HOOO!!!!

WooooHOOOO!!!!!!!!!!!

     So yesterday was my birthday.  And to my children, this is the dessert we should have had.  :)  I guess we can plan this dessert when Dad gets a new kidney!

     Now, when you get to be my age, birthdays are just another day.  Another day at work or another day of laundry.  However,  this birthday will be one that I am grateful for forever.  I got the best present today! " GREAT NEWS!!!!"

     After waiting five hours at the U last Friday, Rick had the scans of the brain and the abdomen with the surgical dye.  We anticipated a  2% to 10% decrease in kidney function from the dye.  However, his blood work showed no decrease (The Hallelujah chorus is playing over and over in my mind!).  We, along with many others, have been praying for this, so Rick wouldn't be forced into dialysis.  Even, our cute little grand-daughter Amelia, prays every night for her Grandpa to get a new kidney.  What a beautiful thing it is to be able to know that we are loved and cared about by so many people and our Heavenly Father.  Today, I am counting my blessings. 

     The next step, in our life of the Kidney issue, will be fixing the aneurysm problems that Rick has. Now that they have the scans, they can make decisions. Hopefully, we will have some answers in the next week. Eventually, I will learn the patience thing.  It is not my strongest attribute.  I want the answers and solutions right now. 

 

 

     For now, I will take the tender mercy given us.  I am grateful Rick has a little more time before dialysis.  Again, thank you to everyone who has been praying for us.  We feel your strength and love.  Please continue to keep Rick in your thoughts and prayers.  His journey is just beginning and will most likely be a long one.   We love you all!

    

Easter fills the soul!

   

Easter fills the soul!

   This beautiful Easter weekend reminded me of how valuable life and even death are in our Heavenly Father's Plan.  I am truly grateful for my brother and Savior, Jesus Christ. What amazing unconditional love he has for each of us. Rick and I and our family are members of the Church of Jesus Christ of Latter Day Saints.  This weekend,  I intently listened to our General Conference to hear messages of peace and comfort from our Prophet and Leaders.  I was not disappointed.  Each and every message was something I needed to hear.

      I have found that it has been hard to keep my mind focused as I worry so much about our future, our children, our finances,  and our comfort zone being turned upside down.  However,  I can say, I have a sense of peace with it all.  I know that through faith and the love of my Heavenly Father, Jesus Christ, and others that we can make it through this challenge. 

     It has been decided that Rick will have the scans with the surgical dye.  We will take the chance that his kidneys will be able to dispose of the dye without damaging them too much so he doesn't end up on dialyses. If we end up on dialyses, we will deal with it as it comes. We are just waiting for the call to tell us when.  Currently, he won't be able to be listed for a transplant until the aneurysms are taken care of.  Hopefully, we will know more in the next few days of how and when that is going to take place.  The waiting game is the worst.  Thank you to everyone that given prayers and kind thoughts on our behalf.  Your love and kindness is so warmly felt and appreciated.

     Each new day has become a blessing.  Each day, I try to be a little nicer. (That is a miracle, by the way . Lol.  I love to tease.)  Each day I watch my eternal companion laugh and talk with his children, patiently teach and inspire  his fifteen year old son, play with his beautiful little grand daughters, work to provide for his family, and of course, show kindness and love to his wife.  I think I am falling in love with him all over again more and more every day.  Funny how it takes thoughts of being without someone to remind you of how beautiful it is to be with them.  (Wow,  I'm getting mushy!) 

 

     How did we get to be so lucky?  All of our children live close by, so Sundays are a bit of a fiasco.  At any given time there may be a giggle or a cry, sights of a dressed up princess, bride, pirate, a naked little girl, or with Miss Ella Bella "Anything goes", for that matter.   This Easter Sunday was no different.  Beautiful little girls running around gathering candy filled eggs and filling their baskets with loot.    It is a beautiful thing.

 

 TRULY, FAMILY  IS EVERYTHING! 

 

 

 



A bump in the road

Rick and I were able to spend some great quality time together in Las Vegas last week celebrating our 25th anniversary.  So hard to believe it has already been 25 years.  We went to Vegas not too long after we were married and it was fun to reminisce and see all of the dramatic changes that have transpired over 25 years.  My feet are still trying to recover.Obviously we couldn't keep the kidney issue out of our mind, but we had fun with it.  In the floor tiles of Caesar's Palace...WE FOUND A KIDNEY!"

I'm taking this as a good sign that all will somehow work out!

Trying to master the selfie at The Venetian in Las Vegas.  

Just a bit of history so you know where we are at currently.

       Some people that have PKD also have a a problem with intracranial aneurysms.  This is the case for Rick. Six months after Rick and were married, he had an aneurysm rupture in his brain.  We happened to be staying in Salt Lake City at the time it happened. Rick had a severe seizure and started vomiting violently. I knew something was terribly wrong.  I helped  him get dressed and he tried to walk to the car.  He could barely walk.  Still to this day, I do not know how I got him to the car.  I don't know if I picked him up and carried him or if we had an angel that carried him, but I got him to the car and drove the wrong way up a one way street right to the hospital.  I had just barely visited a good friend in the University of Utah Hospital a few weeks prior so knew how to get there.
      Within just a few minutes of arriving in the Emergency Room, Rick flat-lined and I was asked to leave the room. A little while later a doctor came and told me that he had an aneurysm in his brain that had ruptured and he was being taken to surgery.  They rate the condition of the patient as a (1) being good to a (5) being nearly dead.  Rick was a 5 or beyond.  Needless to say, my world came crashing down.  As my memory reflects on the moment,  it seems like a movie, A REALLY BAD HORROR movie.  Rick was in surgery for nearly eight hours.  When the doctor came to talk with me and family members that had arrived, he said he wasn't sure if Rick would make it through the night. He did make it through the night and was in a coma for nearly a month.  During this time they found another aneurysm that hadn't ruptured yet and Rick went through another brain surgery two months later. Many, many miracles happened for us over the space of a few months and years.  This occurred in 1990.
      In 1993,  Rick had another brain aneurysm rupture just a few months after his brother Faran had one rupture.  This is when they started to test Rick for Poly Cystic Kidney Disease.  They had found a link between PKD and intracranial aneurysms.  Sure enough Rick had thousands of cysts in his kidneys and his liver.  At this time they told us that Rick would need a transplant within ten to fifteen years.  We are so grateful for the expertise and help of the doctors at the University of Utah.  They have saved Rick's life many times.

   

This is not intended for anyone in particular.  (wink wink) I just thought it was hilarious. 

 I think I need a shirt like this. :)

       In 2008, Rick had a problem.  He couldn't go to the bathroom. And of course he didn't tell me until it had been three or four days.  We took him instantly to the hospital and they found what they thought was a tumor about the size of a small football in his pelvis.  Well after many tests and a miracle that they didn't biopsy it, they found it was a large aneurysm.  It was bulging through the sciatic nerve and through the spine.  It was so large that multiples of Doctors would come into Rick's hospital room to feel the aneurysm through his buttock. (He was groped over and over) hehehe. It was quite rare to have an aneurysm that large and to be able to feel it from the outside was especially rare.  They ended up fixing it by a process called Medical Thrombosis.  This consisted of using metal coils placed through a catheter into the artery that had expanded. It looks like a twisted slinky. This forced the blood to clot.  The aneurysm shrunk enough through the clotting that Rick was able to use the bathroom normal again   During this time and through multiple scans, the doctor found another aneurysm.  It was in the celiac artery.  It was about the size of a half dollar.  It is in a location that is very difficult to repair, so they determined to keep a close watch on it to see if it grew.  We have had scans of both aneurysms at least every one to two years since 2008 with little changes to both of them.

  

We feel a little like this right now.  Being tossed around and a bumpy ride.  But I am sure it will help us appreciate the smooth road when it happens.

       Well these little changes have added up.  We had a visit with Rick's Vascular Surgeon last Tuesday.  The aneurysm in the celiac artery has grown 10% since 2008 and the aneurysm in the pelvis has grown a centimeter in the last year and a half.   They can not clear us for transplant.  Because of the aneurysm clippings, Rick can not have an MRI, because of the kidney failure, Rick can not have CT scans with contrast because the dye will progress the renal failure. They did a scan without the dye and of course cannot see what they need to see.  So it is sounding like Rick will be forced into dialysis to be able to have scans, even to know how to repair the aneurysm in the the celiac artery and the one in the pelvis.

     Yesterday, we met with the Neurosurgeon and again the same story, they can't clear  Rick for a transplant.  They can not see if problems exist in the arteries of the brain without using the dye.  So now we wait as all the doctors collaborate ...concur....( I love the word concur, mostly from the movie Catch me if you can) and decide what to do.  We should know within the next week hopefully.

Kinda like stuck between a rock and a hard place.

     Rick is so very patient and doesn't let things get to him, but a little bit of discouragement has settled in.  He was so very much hoping he wouldn't have to do dialysis.  So please, keep him in your prayers.  We will push forward, having faith and hope.  We know that we are not alone in this adventure.  Thank you for sharing in our journey.  It is time to adjust the sails.

All smiles when Grandpa is around!

So ya!  This has been on my mind and I know I need to document our life's blessings and challenges for our family and friends.  Rick and I will celebrate our 25th wedding anniversary this week in Sin City. Viva Las Vegas Baby!  I am actually pretty excited to make some memories with this great guy. Everything has not been Peaches and Cream in our life, but man o man, it has been worth it.  We have seen many miracles in our life together and have a firm testimony that our Heavenly Father is aware of us and our needs.  We have been the recipient of so many tender mercies and know there are angels among us every day.  We have five awesome children and six gorgeous grand-daughters (who are definitely Grandpa's girls) with a new baby (gender unknown as of today) coming in August.  

I have decided to keep a blog to keep family members and friends updated on Rick's progressive challenges with PKD (Poly Cystic Kidney Disease).  About 23 years ago, Rick was diagnosed with PKD and told that he would need a kidney transplant in ten to fifteen years.  So, there is a miracle in itself that he has been able to go this long.  We are now knocking on the door of a transplant.  His creatinine is at 4.0 (normal is .06-1.2 in adult males)  His kidneys are currently functioning at 16%.  Because PKD is the silent killer,  you don't realize the person is sick.  We knew it was coming, but hoped for more time.  Rick will be listed for transplant within the next couple of weeks. 

 We attended Kidney school a few weeks back and life became very real for us.  Wow, talk about overload of learning in just a few hours.  We learned about everything from mental health, physical health, finances, nutrition, pharmaceuticals to you name it.  Every doctor, surgeon, counselor, and dietitian asked us about having a live donor. WOW!  How do you ask someone to sacrifice so much for you?  How do you put it in your regular conversation? "Do you have an extra kidney laying around?" "Don't be surprised if you wake up with a big scar and a missing kidney! " :)  Rick's sweet Mother, Betty, had a kidney transplant many years ago.  It gave her a lot of additional great years with her family.  Her kidney came from a deceased donor. I couldn't help but feeling guilty for wanting the demise of someone, so I would not have to ask someone I know. 

I know this is sick and twisted, but it kinda made me laugh.  Allright!!! I really laughed hard!

Anyone who knows us knows that I am the worrier in our relationship and Rick is very calm. Probably the thing I love and hate at the same time.   While I stress over every aspect of the situation, his biggest concern is not being able to have hot dogs and sugary drinks after the surgery  (he loves hot dogs and Kool-Aid).   Rick is a very strong person.  His body has been through a lot.  His life has been spared multiple times.  I am hoping this blog will be positive and inspiring and will help those who may be facing similar challenges.  I am hoping it will capture the special tender mercies that Our Heavenly Father has in store for us.   Please feel free to post positive comments.  We love each and every one of you and thank you for your kindness and prayers on our behalf. 

I know the road may be bumpy ahead, but I am determined that we will enjoy the journey.