How we met PKD

PKD is NEW to our family.  Michael has no one in his family with this disease (Thank God, right?).  He is the first and will be the last since he has no children of his own.  When we married, I already had a daughter from my previous marriage.  I lost my 1st husband to cancer 15 years ago and we had one child together, Jilliam who is now 20 and attending college to be an elementary school teacher.  I do have to say, she is the most amazing and beautiful step-daughter a man can ever have and Michael is the most amazing, fun and loving step-dad a daughter could ever wish for! We are so blessed to have Michael in our lives, he makes us laugh with his "out-there" humor and has a way of keeping things "relaxed". 

Polycystic Kidney Disease affects an estimated 1 in 500 people, regardless of sex, age, race or ethnic origin.  Michael has ADPKD (Autosomal dominant) and its one of the most common life-threatening genetic diseases. There is usually a family history. Parents with this disease have a 50% chance of passing it to one of their children. Ten percent ADPKD occurs spontaneously in patients, Michael happened to be one of those 10%.  It is considered a genetic disorder characterized by the growth of numerous cysts in the kidneys. PKD cysts can profoundly enlarge the kidneys while replacing much of the normal structure, resulting in reduced kidney function and leading to kidney failure. PKD can also cause cysts in the liver and problems in other organs, such as blood vessels in the brain and heart. When Michael was first diagnosed his doctor ordered an Echocardiogram of his heart as well as an MRI of his brain to check for weaken blood vessels.  Thank God that for now, all is normal!  Yay for normal!  

Many people with autosomal dominant PKD live for several decades without developing symptoms. Michael had symptoms as young as 18 but his doctors in Canada didn't investigate why a healthy young man in great physical shape had abnormal blood pressure and a trace of blood in his urine. Michael regularly had annual check-ups while living in Canada and each time he would hear the same thing, "your blood pressure is a bit high and you have traces of blood in your urine, this must be normal for you". Blood in urine is never normal! Michael came to live in the states in 2000 but never established a new family doctor in Tampa.

Now lets fast forward to January 2009.  I get a call from Michael while he was working in California. Michael travels for work since he is an entertainer and corporate speaker, he flies all over the country to perform for his clients. He tells me that he is having problems seeing from his right eye, he can barely see anything but dark spots that take up most of his vision. I immediately think stroke and asked him to go to the nearest ER (who knows why I thought stroke but my imagination normally goes to worst case scenario!). Michael, feeling fine didn't feel the need to go into the ER so he found an Optometrist who could see him that day. After seeing Michael, the Optometrist concluded that it was a blood vessel that had burst in his eye, she urged him to see a doctor as soon as he arrived back home. I made an appointment for Michael to see my doctor.  I'm so grateful that she ran labs on his kidney function after noticing that he had high blood pressure and that he had a history of it as well.  After 48 hours, we received a call from her office. They recommended that we make an appointment with a Nephrologist as soon as possible, Michael's kidney function was at 32%.  What did this mean?  I immediately went to Google (isn't that what we all do?), the information on kidney disease and reasons for decreased kidney function was overwhelming.  There has to be an error, somewhere. Michael feels fine and is healthy, this can't be happening to him.  He is the happiest boy in the world, he is always making light of things, always taking things relaxed but this, this was surreal.  I remember when we came across the PKD site that showed what a diseased kidney looked like. We were horrified that a healthy organ could be so horribly distorted and made to look so frightening by a disease called PKD.  After reading that it was a hereditary disease we were both relieved, the breath we were holding in while viewing the site was slowly let out.  There was no way Michael had that disease, no one in his family had PKD.  

PKD Kidney beside a normal one.

20 Days away.  Our story continues for all those that are fighting this disease.  You are not alone, and neither are we.


God's Blessings....Lilly