My vows to my husband were to love him in sickness and in health. Nothing tests that more than a genetic disease that not only has a 50% chance of affecting each of our children. But also does not have a cure…. yet.
I’ve spent the majority of our 20+ years together supporting, learning, advocating and fighting for my family to NOT be defeated by Polycystic Kidney Dusease. The statistics are unfortunately not currently in our favor, but Science is breaking new ground every single day!
When I FIRST began advocating for my family and learning about PKD it was back in 2005. I chose to do a research paper for my college class on the disease and the impact of support groups. Turns out there weren’t that many for this disease in San Diego.
I found ONE on MySpace and jumped in right away. I got involved, I introduced myself to everyone and I was ready to meet up and get my hands dirty for any events. I became a Walk Volunteer, a Walk Coordinator, an event planner extraordinaire, ‘Kidney Kasino’ creator…then stepped in for the late Marjorie Blanchard as our Chapter Coordinator for San Diego.
Many many volunteer hours stretched into years. I was so passionate about being involved because I truly felt it was making a difference for my family’s future with this disease. And honestly, it’s been pretty amazing watching the scientific developments over the years.
Not too long ago medical professionals didn’t know PKD even existed. They attributed patients deaths from kidney failure to other illnesses. Then they began identifying the large fluid filled cysts upon autopsy and recognizing notable symptoms prior to death in patients.
Once PKD was discovered scientists then began to research its Two forms: Autosomal Dominant and Autosomal Recessive. ADPKD seemed to be genetically inherited and affected adults and teens post puberty whereas ARPKD was a random mutation and severely affected children & infants.
Then studies began to show the affects different dietary changes had on the growth and progress of the disease. We learned how Caffiene tends to increase the speed of the Cysts growth therefore causing the resulting kidney failure relatively quicker than those who abstained from consuming caffeine in their diets. We celebrated this discovery, although not a cure, it was at least a way to have some miniscule amount of control in the progression of this terrible disease. Or hope that we did….
We also learned that scientists successfully identified the specific gene responsible for causing PKD which then meant we could avoid spending years and years worrying about IF we had passed the disease to our children, or doctors could now immediately identify the cause of an infants sudden kidney failure and medical complications. This celebration was short lived for many because we soon also learned the earlier possible diagnosis also meant discrimination and struggles when dealing with medical insurance or life insurance.
Every day we hope and pray for new developments that can maybe allow us to finally exhale a huge sigh of relief knowing that after all these years we no longer have to live on pins and needles. Worrying about our children and if one day they suddenly pop up with symptoms…. worrying about their ability to have their own children and will this disease end with Mt husband or continue to haunt our family for generations to come…. a cure would be the answer to all our prayers.
Major medical improvements have been made for transplant procedures, matching systems and pairing programs across the world. A surgery that used to be a huge open incision and very long surgery has developed into a laproscoptic procedure that can take anywhere from only 4 to 6 hours.
Just this week I realized how much this affects me every day and I am not the one actually living with the disease...
My husband has passed on his addiction Love for Monster Energy drinks to our older 2 children….who are teenagers….just past puberty who are now old enough to discover one day soon that they too have to worry about if they have cysts growing progressively on their kidneys, causing them to shut down.
The part that causes me so much stress is knowing what energy drinks can do to young bodies, much less adult ones. Someone with undiagnosed PKD is at severe risk of sudden stoke, aneurysm or heart attack due to uncontrolled high blood pressure. To be honest messing around with anything is dangerous, not just energy drinks.
I cant spend every day taking their vital signs nor fighting with them about sodas and energy drinks every day. It makes me sad though that I’ve had to have conversations with them about needing to be cautious about things that maybe others don’t need to worry about. Drugs, alcohol, salt, sugar, certain medicines … they have to make decisions that other kids don’t have to even think about. Either they have this disease themselves OR they will need to protect their kidneys to potentially be able to donate to their sibling or family member later on…
So I worry. Every day I worry and watch them live their lives. I watch them be the unpredictable teenagers they are and I just pray that this disease doesn’t ever take away their childhood as well as their adult years.
My husband does not go without my worrying as well. When he traveled for work for over 15years it was so scary because he worked long hours and didn’t eat very well. A few times he was sick and needed to see a doctor. Not knowing what will happen, but knowing EVERYTHING that could possibly happen is so so terrifying… even more so when you’re miles and miles apart.
I am so thankful that my husband is finally home with us now and we get to spend significantly more time together. The more he is home however, the more I see things I wish he maybe would do differently. I may not have the disease but I will be the one left behind answering questions and dealing with his affairs when he didn’t take care of himself. Someone once told me to plan my life as if I knew he wouldn’t be in it later on…. this was horrifying to me. But the reality is, if we don’t find a cure and modern science doesn’t perfect the bionic kindey in the next 5 to 10 years this will become a reality for our family.
So when you see people posting donation requests for charity organizations or different walks for non profits… take a moment to consider what does this mean to them. I post the link for our team donations not just because I want to successfully meet My Team Goal this year, but also because I desperately want to be able to tell my children they don’t have to worry about watching their father slowly die or lose their grandfather after months attached to a dialysis machine or knowingly face the same diagnosis themselves.
This Walk is a symbol of hope and togetherness for our family. If you can’t donate, please consider joining us at Washington Park for this beautiful event. I would absolutely love any support you could give.
Please join me or donate at this Link.
Here’s to a cure in 2023!