Last week I was diagnosed with Polycystic Kidney Disease (PKD).
Early in the week, I was experiencing pain in my abdomen--which I thought was a pulled muscle or a bruised rib--so I went to the clinic on campus. Soon after, I was at the ER so that they could run diagnostics. While they found nothing acutely wrong, they did find innumerable cysts on my kidneys and liver--a classic sign of PKD. Still believing that this was a misdiagnosis, and much ado about nothing, I saw my primary care physician. Then a urologist. Then a nephrologist. All came to the same conclusion.
Since then, Josh and I have floated between devastation and determination. Devastation over the diagnosis, and determination to beat PKD.
PKD is a genetic disorder and is chronic. Over time, cysts on the kidneys build up so much that the kidneys fail, and either dialysis or a transplant is needed. Having no evidence that points to my grandparents, parents or aunts and uncles having this disease, right now we are concluding that it was a spontaneous genetic mutation, which occurs in about 5% of PKD cases.
There are many challenges. The main one being that there is no cure, yet. There are drugs being developed that will slow the progress, but they are not yet generally available. The other big challenge is that this is genetic. Though we will not know if Mackenzie has PKD until she is much older, there is a 50/50 chance that she will have it.
There are also many, many positives. There is a 50/50 chance that Mackenzie does not have it. We will continue to hope that she does not, or, if she does, that at that point there will be a cure.
Another positive is that right now my kidneys are functioning at 100%. From here forward, I am on a strict, low sodium diet, and instructed to drink massive amounts of water and eliminate caffeine. The key to extending the life of my current kidneys is to keep my blood pressure low. I can still run, spin, etc. And am encouraged to do so with vigor.
Though I have a problem with our doctors quantifying my life, based upon the majority of cases, I have about another 10-15 years with my current kidneys. At that point, I would need a kidney transplant. Again, I do not believe any doctor can quantify how long I will live, and firmly believe there are enough factors that I can control that I can extend the life of my current kidneys longer than 10-15 years.
Josh and I are now in the process of working with my health care providers to come up with a plan to fight this. And we are determined to be vigilant in working our plan. We are incredibly lucky to have access to some of the best care in the country, and have been greatly assisted in accessing this care.
So, why am I telling you this news? Besides casting a wide net for kidney transplant candidates (only half joking), I believe that love wins. Josh, Mackenzie and I cannot do this alone. We need your love, your support and your prayers. We have a long road ahead. We are lucky to have amazing friends and an amazing family. Our hearts are full. Mackenzie deserves to have a mother for absolutely as long as possible, and we deserve to be a family for as long as possible. Love. Wins.
If you want to learn more about PKD, I encourage you to visit https://www.pkdcure.org/.
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