I know, what a depressing thought right? I apologize that the wee hours of the morning have brought to light the morbid reality that
I am facing my family and I face… but here’s the deal, wether I lik it or not…no matter how you look at it: It’s the TRUTH.
I can’t explain the feeling that washes over me in these moments of heart-breaking reality. I am a fixer, a do-er, a back-up planner kind of person. I like to be ready for anything that comes my way. I make things happen and don’t take no for an answer if I feel like I can make a difference and really now… of course I can make a difference! right???!
But, I am not a medical professional. I am not a scientist… hell, I don’t even have a kidney left to give him. I can’t heal him. I can’t find a cure for him. I can’t sacrifice part of me to give him a few extra years of life… I can only sit and watch as time passes and we move one step closer to death. It is in these moments I feel so helpless… when he is attatched with wires to monitors, IV’s in his hand, constant beeping around me, watching him flinch or toss and turn in pain… I see flashes of my future; a future that will be so painful
for him for us as a family… a future that will be cut short without a cure. God how I pray so fervently for the day we can celebrate the miracle of a cure!
Let me break it down for you…
Right now my husband’s big strong body is dying inside. His kidneys are shutting down due to stress caused by many many cysts that h
ave formed are forming on his kidnys (sometimes they also spread to the liver and other surrounding organs) . The kidneys are basically suffocating under the weight of what becomes GIANT fluid filled cysts. “The average weight of an adult human kidney is approximately one-quarter pound. Each kidney is approximately 4 inches long, 2.5 inches wide, and 1.5 inches thick.” (Source) A Polycystic Kidney Disease kidney can weigh up to 35lbs and be the size of a football. When the kidneys are forced to be that size and have that much weight pressing down on them, they begin to slowly malfunction and shut down. Without your kidney function your body is unable to expell the toxins and junk in your body that your body doesn’t process or need. Without the ability to transfer all the bad stuff out of your body through its urine output, your body is essentially poisening itself.
This journey I have been on lately has definitely helped me find a new perspective. Completing a 28 day detox and continuing the clean eating portion has really resenated with me. Part of the detox program included a special tea that brought on added urination to help expel the toxins from your body. without the tea my body was not truly detoxing. After the first few weeks of drinking this tea each evening and feeling how clean and rejuvinated my body felt, I imagined what it would feel like if my body could NOT expel the toxins and I had to live with all that junk in my body and feel it just pile up day after day… It is disgustingly uncomfortable to even think about! But that is exactly what
will happen is happening to my husband.
I think about the future and what happens when my husband eventually becomes sick enough to need a transplant like his father. I think about how we will advocate for him and pray that he will find a living donor as perfect as I was. Not saying I would have been a perfect match for Eric, but instead that I was a perfect match for his father. Now let me get this straight… no amount of pain or terrible struggles in the future will EVER make me wish I hadnt given my kidney to his father… but OH what I wouldn’t give to have a third that could be designated for Eric also. Heck… the idea that when my children; miracles of life that Eric and I created together and grew inside my body, come to need a transplant as well … oh how I fear the day that my body; the one that sustained their life and brought them into this world, can no longer provide anything useful for them. I have no more body parts to sacrifice. I have no way of saving them… I brought them into this world and yet I will have to sit back and watch them suffer…. I refuse to accept that fate.
Like I said… I don’t take no for an answer and I do not like sitting back and watching things unfold while I do nothing. While running one afternoon, it occured to me that it truly was a blessing that suddenly I became motivated to loose weight, get in shape and begin a healthier lifestyle. Not just because it’s the cool thing to do, or because it’s good for me… but because my children need me to. If the Polycystic Kidney Disease Foundation does not find a cure before my husband’s kidneys fail I will be all that is left to care and provide for my children. I need to stay on top of my own health and stay as fit as possible…
The reality, the hard cold fact is in the state of California once you are put on the wait list for a kidney transplant the wait time is (on average) 3-5 years.. in some cases the wait time can be as long as 10 YEARS! 80% of these patients on the wait list for a transplant, anxiously waiting for a phone call telling them they have been matched for a kidney, are on dialysis. Multiple times a week these people do dialysis treatments where their blood is essentially pumped out of their body, cleaned and then pumped back in. But here’s the kicker… you know, that little tid bit of truth that just hits you in the GUT and knocks you to the floor… the life expectancy for someone ON regular dialysis is only 5-10 years.
So someone desperately trying to extend their life while waiting for a life-saving kidney transplant could die before their number is even called!! Heck, there’s no guarantee even that they will be approved for the transplant; some people in kidney failure are just too sick or have other complications that permanently disqualify them from every being able to have a transplant. That doesn’t give me much hope for my husband or children if I am sitting here doing nothing. If we can’t find a cure, if we can’t find a kidney for my husband… he doesn’t stand a chance. If the Foundation doesn’t find a cure in the next 30-40 years my children may be looking at the same debilitatingly bleak future… unless we do something now.
SO I run. I run for hope. I run for a future. I run for a CURE from this terrible genetic disease that could potentially take my entire family away from me. Every step forward, every breath breathed out in exhaustion… I know I am doing what I can to move forward and do my part in helping make a difference. Join me, Support my cause help my family. $5, $10, $20… It really dosen’t matter how much becuase EVERY dollar makes a difference!
This thanksgiving as you spend time during the holiday with your family, look around at their smiling, healthy, happy faces and ask yourself, “what would you do, if your husband was dying?”
****SOME MORE FACTS FOR YOU****
- Currently (as of September 2014) there are 101,170 people waiting for kidneys on the transplant list.
- in 2013 only 16,896 kidney transplants took place in the U.S. Of these, 11,163 kidney transplants came from deceased donors and 5,733 came from living donors.
- Nearly 3,000 new patients are added to the kidney waiting list each month.
- on average 12 people die each day waiting for a kidney
- in 2013, 4,453 patients died while waiting for a kidney transplant.
- ADPKD(Autosomal Dominant Polycystic Kidney Disease) is one of the most common life-threatening genetic diseases, affecting 1 in 500 worldwide
- There is no treatment for PKD. And no cure. Until one is found, PKD will threaten the lives of every generation of every family living with the disease.
- More than 600,000 Americans and 12.5 million newborns, children and adults worldwide battle Polycystic Kidney Disease (PKD) every day.
- PKD is one of the most common life-threatening genetic diseases, affecting more people than Down syndrome, cystic fibrosis, muscular dystrophy, hemophilia, and sickle cell anemia – combined.