Love Wins/Beat PKD

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/. 

7 Month Itch

Happy 7 Months, Mackenzie!

At 7 months, you continue to be curious, ambitious and continually on the move. 

Did I mention that you are also slightly intense (see above)?

You survived your first ear infection, enjoyed a weekend alone with your Daddy, and decided that you deserve to sit at the table, not a high chair, thank you very much.

You also learned how to say "Dada" (I know that "Mama" is what you really meant to say) and took in your first (of many) football game with your GG and Papa.

More importantly, you are increasingly becoming independent and enjoying being able to crawl, pull up on things, and get to where you want to go. 

It's gonna be a great month. Go get 'em, kiddo.

Bubbles Goes to the Ball Game

Josh and I have been looking forward to taking Mackenzie (aka Bubbles) to her first football game for a while now. Problem is, we both work during the games--makes for watching an infant a bit difficult.

Enter GG and Papa to the rescue to be sure Mackenzie got her football fix.

Pre-gaming at the house with her buddy.

Fascinated by the game festivities. Note: Those are not super cool Dre Beats headphones, but noise blockers for infants. I swear, Mackenzie's parents used to be cool.

Ending up like many Hurricanes fans who drink too much in the parking lot. That afternoon milk buzz will get ya.

Food Critic

I'll admit, we took our time with introducing solid foods to Mackenzie. You would, too, though if you got this reaction the first time around:

Not exactly a ringing endorsement of sweet potatoes.

We did make some progress, though. Mackenzie permitted allowed us to place the food on her mouth.

And we finally made it to this:

Kickoff

Super cool and confident baby girl in the foreground. Turned-off TV in the background.

About a month after Mackenzie was born, Josh and I made a commitment to not watch TV. This was based on common sense and a TED Talk that basically said TV gives children ADHD. Conveniently, our decision was made after NCAA March Madness. 

One week from today college football begins, causing us to waver on our initial decision. Suggestions welcome on how to balance watching hours of college and pro football, and doing our due diligence as parents.

Hobbs Pond

Lake love

Onward and Upward

We travel to Hope, Maine today--this requires two flights and a two hour car ride. Our mission today is "Just Get There."

Mackenzie's mission is "Work on Core Strength in an Umbrella Stroller my Mom Thought I was Ready for."