I truly can not tell you how much pain cysts bursting on your kidneys are. I have NO clue what passing a kidney stone feels like.  I can not explain the level of discomfort you will experience when your kidneys eventually get as large as a football.  I can not describe to you what it feels like to know that what is slowly killing your body has no cure.  I can’t make you see what it’s like to live every day with Polycystic Kidney Disease… because I dont have it.

What I DO know is what it’s like to constantly be in fear that your loved one will have a stroke or anuerysm and die without warning.  I do know what it’s like to see the ones I love suffer and hurt without any way to relieve their pain or stop the disease from progressing further.  I do know what its like to watch my children grow and  wonder if they will manage to ever truly be free from this genetic death sentance.  I do know what it’s like to be a caregiver for someone suffering from Polycystic Kidney Disease, no let me strike that becuase they aren’t just suffering.  This disease has NO cure and the end result is essentially the same for everyone. SO let me say instead; I do know what it’s like to be a caregiver for someone dying of Polycystic Kidney DIsease.

hands

So that’s where I will begin my story of PKD. Not with my husband’s pain, or my father in laws transplant, but myself… as a caregiver and advocate for this cause.

Being a caregiver to any of your family members is incredibly exhausting; physically and mentally.  But you love them, so you pick up your feet and put one in front of the other and you keep going.  Some days I feel as though I care more about my husband’s health that he does.  Some days I know I worry more about the risks or symptoms than he does.  Most days I am thinking in the back of my head, “is this going to be a bad kidney day?”  On those days, the world continues revolving around us at its crazy fast pace, while we are at a stand still, with my husband curled up in pain; hugging a heating pad.  The big plans we had to go to the park as a family that day? Canceled.  The trip to Disneyland? Postponed.  The special date night or family activity… dont even think about it!  And the hardest part is sometimes running around trying to adjust our plans to accomodate the day or days that he is in pain and feeling helpless, unable to help him feel any better.

It was because of this pain that I chose to get involved.  I am not the kind of person to just sit back and watch everything fall apart.  I can NOT stand in the background while my family suffers a slow and painful death…. from a disease that just so happens to be the nations leading life threatening genetic diseases AND there’s still no cure?!  I had to first learn everything I could.  So while I was attending college classes I began writing all my research papers on the disease.  I searched for support groups online to get connected with others suffering from the same disease that may be willing to talk with me about it.  I foud none. ( the PKD Foundation website did not have their community page at this time)

 It only made sense then to start a PKD Group of my own on Myspace. (remember that silly thing we used to think was the best thing since sliced bread?)  Well anyway, I pioneered this group and met some wonderful Amazing people who are still a part off my life today.  It was with their support I continued learning about PKD and getting involved with the PKD FOUNDATION.  I started volunteering with the San Diego Chapter back in 2005.  I attended meetings and raised money each year for the National Walk. That year I enjoyed attending the walk with my best friend and my son for the first time.  I look at this picture and see how far we have come since that day.  He just turned 11 years old last week… where has the time gone?

399920_359544754060272_1823354109_n

Soon after the Chapter Coordinator and I created a fundraising event called Kidney Kasino.  It was a casino themed event complete with a large silent auction, amazingly talented live musical guests, a full four course dinner and {fake} gambling!  This event was our big fundraising event each year where everyone could come together and have fun while raising money for a great cause.  People from our San Diego Chapter looked forward to Kidney Kasino every year and I had so much pride knowing that it was my baby… this event was the culmination of my passion and research.  Over the years our event grew and went from 40 people in the back of a tiny dusty church in down town San Diego to over 100 people and a BEAUTIFUL venue right on the sandy shores of Del Mar…literally on the beach.  Every year, it truly is an honor to be a part of watching this event happen and I truly thank every one of my family and friends who have helped make this event a success over the years, I could NOT have done it without you.

In 2008 my advocacy for PKD was put to the ultimate test; I became a living donor.  Right now the ONLY treatment for PKD is a kidney transplant.  It is not a cure, it is not even a 100% lifetime guarantee, but it is  the final step to maintaining life after dialysis.  Some are lucky enough to get a new kidney before dialysis, but many many more suffer through years of dialysis before ever being matched with a kidney.  THAT is why being a living donor is SO important..  If more people were willing to step up and be living donors, the number of patients on the transplant list waiting for a kidney would be dramatically reduced, if not completely wiped out!!  EVERY pkd patient will either need dialysis or end up needing a transplant to extend their life. Not just some, but EVERY PKD patient.  

Kidneys are in high demand and we can ALL do something to help.  If you personally can not be a living donor because off other heath complications, you can help advocate to others about being a living donor.  I have had a full healthy pregnancy and delivered a beautiful healthy baby girl since the transplant.  Not only did I help the cause for PKD but I helped my family as well.  Because, you see… I was a perfect match to my father-in-law who was growing sicker and sicker by the day.  He was fighting being put on dialysis and his labwork was coming back drastically worse each time.  A simple blood test gave me all the information I needed to say YES and agree to extend the life of someone so important to me, my husband and our children.   That day my voice truly became more than just a voice for a cause but action. I didnt just sit around talking about helping find a cure for PKD or helping PKD Patients find kidneys when their time comes to need a transplant…I BECAME the solution (even if for just one person) and DID what I could do to help.  

I have eagerly attended National Conventions for the PKD Foundation, webinars offered online, local chapter meetings and health fairs where people supporting PKD were present.  This last year I began a journey to better my own health and combined that with my desire to find a cure for PKD; I ran my first 5k.  On Thanksgiving morning I ran my very first EVER 5K with our Foundations Turkey Trot RUn for PKD.  I signed up for our local Turkey Trot and even my children ran in their own races that day. IT was such a fun family event and to know we had raised money in support of the PKD Foundation as well just made it that much more special to me. I learned the pride that comes from hard work, dedication, determination and commitment. I NEVER thought I would ever run for anything, but it doesnt surprise me that the PKD Foundation gave me that extra UMF! It took to accomplish such an impressive and personal challenge.

This year I have been blessed with an opportunity that will test the strength of my passion and the caliber of my education; I was offered the position as Chapter Coordinator for the San Diego Chapter.  Two weeks ago I attended the foundations leadership training conference in Kansas City.  I have been filled to the brim with the knowledge and tools to make the future of our chapter the greatest it has ever been!  I am overwhelmed with the weight of this position and fired up with renewed excitement all at the same time. I encourage all of you to join me on this journey. #endpkd  

So here I bring it back to the begining; unlike the Coordinators before me who they themselves suffer from PKD, unlike many other volunteers with the foundation itself… I do NOT have Polycystic Kidney DIsease, but I can tell you what it’s like to love someone who lives every day with the pain caused by it.  I can tell you what it’s like to be allowed the opportunity to give the gift of life to someone through the act of being a living donor.  I can tell you the fire that is inside me pushing me to find a cure before any of my babies ever need to learn what dialysis feels like.

This is just the begining of my story…

 

The PKD Foundation

Donate Life

Leave a Reply