Polycistic What??? His Diagnosis Paved the Way

What was thought to be “just” a kidney stone was just a few minutes later a “diagnosis.” The doctor performed an ultrasound of my husband’s kidneys and instead of what he thought his whole life to be healthy kidneys actually turned out to be what appeared as a cluster of grapes all over them. He in fact had polycystic kidney disease (PKD), a hereditary condition that they thought had skipped him. His grandfather, aunt, and uncle had all been diagnosed and have now since passed away due to complications with the disease. I admit that I had no clue about the disease, what it was, what it led to, or what it meant for our future. But I knew by the concern in his eyes that it wasn’t what either of us wanted to hear.

So what does any good, supportive wife do? She Googles it of course. Can I just say that this is a TERRIBLE idea. Google doctors will have you dying in a matter of seconds. Never go there. Just don’t. Trust me. I was devastated. The way that they talked his kidneys were about to shut down any minute and he would need a transplant with any chance of survival. See what I mean? I was scared out of my mind.

But what is PKD? Very few people even know it exists and unless you have complications, there is a chance just as with polycystic ovaries, that you could have it. As it turns out it can be very common. It is a chronic condition and as of right now there is no cure. Here is the official definition from the PKD Foundation:

PKD is an inherited disorder in which clusters of cysts develop primarily within your kidneys. Cysts are noncancerous round sacs containing water-like fluid. The cysts vary in size and, as they accumulate more fluid, they can grow very large.

Although kidneys usually are the most severely affected organs, polycystic kidney disease can cause cysts to develop in your liver and elsewhere in your body. The disease causes a variety of serious complications.

A common complication of polycystic kidney disease is high blood pressure. Kidney failure is another common problem for people with polycystic kidney disease.

Polycystic kidney disease varies greatly in its severity, and some complications are preventable. Lifestyle changes and medical treatments may help reduce damage to your kidneys from complications, such as high blood pressure.
— PKD Foundation

We somehow managed to get into a study just in time with Emory University which happens to have some of the best nephrologists in the country. Who am I kidding? It didn’t “just happen.” God led us there. Although the study didn’t really make any major strides in my husband’s disease, it has given him access to one of the leading nephrologists in the nation where he is now a full time patient. 

We learned more and more, and felt confident that his kidney functions were perfectly fine and with medication it appeared as though he would have no major complications from the disease. Then, in early 2008 – in the middle of trying to conceive a child – there was a major complication and my husband was in and out of the hospital for a month. He had a cyst rupture inside one of his kidneys and he began to pass blood and was in excruciating pain for weeks. He lost a tremendous amount of weight and was extremely sick. The concern of what this meant began to rise.

The reality of the severity of the disease hit my husband hard. This was genetic and he began to question if continuing to try to conceive a child was what he wanted to do, knowing that he could in fact be passing along this life threatening disease to another generation. It was that week lying in a hospital bed together that the subject of adoption first entered our marriage. I always had a particular heart for orphan care, after having biological children. But this was different and this was the moment that God began to open our hearts in a real way.

Well after a few months and when life was back to normal, we were over the scare and decided we would continue to try our plan for conceiving a child. We would talk about this “other stuff” later. More and more months went by and more and more negative pregnancy tests were tossed in the garbage along with tear stained Kleenexes. It just wasn’t happening. After several other tests for us both, that is when we were given the dual infertility diagnosis. It turns out that what we didn’t know and the one thing that Google didn’t mention is that PKD could under the right circumstances cause complications in conceiving children.  

If you’ve read our Adoption Journey then you know what happens next. God brought back to life that heart for adoption and made it a reality. It was the best thing that ever happened to us. Was in painful getting there? Absolutely. But we would do it over again a million times to receive the precious miracle of a child that we did. 

As for my husband’s health, he has had no further complications. We honestly believe that was God’s way of paving the road to adoption for us. We often forget that he is even walking around with a “disease.” We are grateful for the health he has been given so far, the lack of further complications, and we are prayerful for the future. 

To learn more about PKD, visit www.pkdfoundation.org

It's not just women that long to hold a child and celebrate a day set aside to honor parenthood. Men most definitely long for those moments too. As we approach Father's Day, we look forward to celebrating the day with joy but not without the memories of all those years we were both in a season of longing and waiting. I am honored to bring to you a story I have been longing to share with you for some time... our story through infertility from my husband's point of view. It is our prayer that his words bring encouragement to those who are still waiting and true gratitude for the blessings in your life to those of you looking forward to this upcoming holiday. You are not alone.