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Monday, March 15, 2010

Make New ifriends Monday: Polycystic Kidney Dad

So kidney disease,

it pretty much sucks.

When I learned I had it,

I thought what the what?!

But I know now,

it’s much worse for others.

And, some people get it,

from their fathers or mothers.

Like my new ifriend Nate.

He has PKD.

He’s had a much rougher time than me.

But it seems right now,

he has reason to boast.

I’ll say no more, just read the man’s post!

Check out his kidney blog and his parenting one, Journey Through Parenthood (written mostly by his wife, Jenny it seems), too. Very authentic, poem worthy, and Dumb Mom approved.

Hey everyone! I guess I’m the second ifriend that Dumb Mom has decided to introduce you all to this March. And, in what may be a trend, I am both a male, and have a life-threatening kidney disease. She contacted me back in February and asked that I write up a quick something to "introduce myself" and perhaps even make you laugh (not that I’m that funny).

My name is Nathan. I am 32 years old and was diagnosed with Polycystic Kidney Disease when I was about 20 years old (during college). For those of you unfamiliar with kidney diseases, PKD is exactly what it sounds like: you have a bunch of cysts that grow on your kidneys. I’d do a good news / bad news story, but there’s not really a lot of good news. As PKD patients age, their good kidney cells are replaced with fluid-fill cysts. This increases the size of your kidneys, which should be about the size of your fist, and reduces your overall kidney function. PKD is a genetic disease, meaning that you get it from someone in your family line. According to the people that do studies, over 600,000 Americans and probably 12 or 13 million people around the world have PKD.

My particular type of the disease is Autosomal dominant (which means I inherited it from a parent). The other type is Autosomal recessive, and it’s actually worse. Most people (80%) with ARPKD (the second type) die as infants, and few live past age 10. With ADPKD (my type) you don’t typically develop symptoms until later in life (50+) and many patients may never require more than just adjustments of diet and exercise and maybe medications to control high blood pressure.

Not for me, readers! I woke up one night in college with a horrible pain in my back. It turns out that I had some kidney stones. The hospital (that I had to drive to by myself) said: "Sir, your kidney stones are small enough that you will pass them on your own. We will give you some pain medication to take home so it won’t hurt too much. Oh, and you should make an appointment with a nephrologist and talk to him about your kidneys." Yeah. So I went in, he said that I have Polycystic Kidney Disease, gave me a pamphlet, and sent me home.

I had one bout with kidney stones every year from 1998 to 2001 (not fun at all, let me tell you, like trying to pee out a pointy, sharp, point-sharp thing, and it feels HUGE). I finally got myself a real nephrologist in 2001 and they began to track my kidney function. I was told that I was at about 30%, and it kept going down every year I was tested. The doctor said I might be good for 10 or 20 years, and that I would not need dialysis until I dropped below 5%. He said that I could get on the transplant list once I was below 20% function, and that it would likely be years to come before I hit that.

If you are squeamish, you might want to skip the next paragraph and come back below this one. In late 2004, I was sick, sick, sick. I was peeing blood, vomiting, not eating, etc. I was sick from about November until May. I finally had to go to the hospital in an ambulance (expensive) and was found to be extremely dehydrated (duh, vomiting and not drinking anything) and had a VERY low blood count (yes, from losing all that blood in my urine). I wish the doctors had listened as I complained the previous six months or so. They put me on IV fluids and blood transfusion (or infusions, in my case). This would be good, except for a terrible kidney infection that led to my kidney swelling up to a whopping fifteen pounds and nearly 30 cm long. Yuck! I have a horrible picture, somewhere, but it’s not online, so you will have to ask me if you want to see it (for some reason).

Is everyone back now? Good! So, based on the info in the paragraph above, they had to remove my left kidney. It was NOT a good surgery, for me, and the recovery was very slow. I was in the hospital for a total of thirty days that summer (yuck). I had to start on dialysis in August of 2005, due to the sudden loss of half of my kidney function. By this time, I was now under 10% on kidney function. I had to do dialysis for 18 months, and that’s no fun at all. Fortunately, I received a kidney transplant (from a deceased donor) in January of 2007 and have been healthy since then.

My wife (who managed to stand by me through all of this) and I were told, unfortunately, that we would never have children. This was due to me, my disease, and several other issues I had. However, as a surprise, we had our daughter in December of 2009. Hannah is growing strong and is, of course, the smartest and cutest baby in the world (obviously). We won’t know if she has PKD until she is much older. We plan to have the doctors do routine check-ups on her without actually writing down "potential kidney disease" on any of her medical charts.

Dumb Mom asked me to link to a few of my favorite posts, but I’m not sure that I have any. If you want to read about how terrible dialysis is, or how many times one person can go to the emergency room in a year due to poor medical treatments, then there’s a lot of good posts. I’ve got several posts that are very popular on the search engines, such as the time I debated Restoril and Lunesta ( I tried to tag most of my posts at least a little, so the blog is decently laid out. I don’t do photography, so there’s very little graphical interest on the site (all words, no pictures). I’m a computer guy, cut me a break.

So, as a father, I figured you all deserve at least one cute photo to say AWWW about:

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And one of my wife and I with Hannah at Christmas:

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Don't forget. Tomorrow is MOM TIP TUESDAY! Come back and link up your best mom tips (advice, recipes, craft ideas, DO-THIS-NOW-OR-SO-FRIGGIN-HELP-ME'S) . Not just because it'll be fun, but because I said so!


singedwingangel said...

Ya'll are a beautiful couple. I love how doctors don't know everything HA... funny but that sure looks like a baby lol. She is beautiful

Tammy said...

Hannah is adorable. She looks like a baby Little Red Riding Hood.

Maggie S said...

Hey!!! Thanks for raising awareness. My previous, kind of blank-minded, understanding of kidney disease was that it was one thing. You had it or you didn't. I have learned a lot this month about the variety of types of illness and that taking care of mine is important in case someone needs them when I quit using them.

Thank you for sharing/educating us.

Kmama said...

Great guest post. You have a beautiful family!!

Amethyst Moon said...

Thanks for sharing. I love when I can learn about something I didn't know about, and what a cute family!

Jennifer said...

Awww. Miracle babies are even sweeter than regular babies (I know because I have one too).

Frugal Vicki said...

Beautiful family! I love her little outfit!
Thanks for sharing your story!

Heather said...

what a wonderful story! a great guest post and a gorgeous little one there as well.

Giving away two copies of the movie Extract starring Jason Bateman and Ben Affleck. Contest ends 4/2/10.
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