Meet Emma

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Emma Russell is a beautiful 2-year-old girl, born and being raised here in Omaha. She’s sweet, funny, imaginative, and, at times, even a little sassy. In fact, Emma is no different than any other toddler girl from the great state of Nebraska—she likes to play, laugh, dance and climb. Her favorite colors are yellow and pink and she loves bananas (or as she calls them: “bananananas”).

You wouldn’t know it by looking at her, but Emma has Polycystic Kidney Disease (PKD).

When Emma’s mommy, Jennifer, was pregnant and in her third trimester, she went to her 35 week OB checkup and that’s when the doctors noticed something was wrong. While it appeared at first that mom’s water had broken or that she’d been leaking amniotic fluid, it didn’t take the doctors long to realize baby Emma was in danger and she’d need to make an early appearance. Five weeks early, Emma was born the next day. And she was perfect… except for her kidneys.

Immediately after being delivered and quickly bonding with mom and dad, Emma was taken to the NICU, where Emma and her kidneys were monitored—a standard procedure for a premature infant born before 36 weeks. But the next day, an ultrasound revealed cysts on Emma’s kidneys and she was subsequently diagnosed with Polycystic Kidney Disease (PKD).

PKD is one of the world’s most common, life-threatening genetic diseases. PKD causes fluid-filled cysts to grow on the kidneys affecting kidney function and often leading to kidney failure and death. A relatively rare form of PKD (autosomal recessive polycystic kidney disease, ARPKD) affects 1 in 20,000 children and often causes death in the first month of life. There is currently no treatment or cure for PKD but there are more people than ever uniting to fight this disease. Through events like the Walk for PKD, the PKD Foundation is working to find treatments and ultimately a cure to end PKD and improve the lives of all those whom it affects.

Emma sees a pediatric nephrologist, here in Omaha, who regularly monitors the health of her kidneys and the progression of her PKD. Because of the disease, in addition to normal toddler well visits, Emma must also endure blood and urine tests as well as abdominal and renal ultrasounds. And, in between visits, Emma’s parents work hard to keep Emma as healthy and happy as possible by watching her blood pressure and by helping her meet her nutrition needs.

Emma’s mom and dad are determined to help find a cure and effective treatments for Polycystic Kidney Disease. Like all good parents, they love their daughter immensely and can’t stand to see her suffer. They want her to have a better life. As a result, they have partnered with the PKD Foundation, a national non-profit organization which funds PKD research and education. In the spring of 2013, Jennifer accepted the roll of PKD Walk Coordinator (Nebraska Chapter).

Your donation will help millions of people worldwide who have Polycystic Kidney Disease, many of whom live right here in our community. It will promote awareness and it will help fund research and education which will someday put a treatment and cure within reach.

Most importantly, your donation will help children like Emma.

Please donate. With your support, we can take steps toward a future without PKD.

To donate to my Walk for PKD, please go to: http://walkforpkd.kintera.org/nebraska/valzane

Another Thing About PKD

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I recently caught a pretty gnarly case of the Flu. My whole family had it. Your whole family probably had it, too. Unfortunately, it’s been going around. In my house, my husband had it first and then I made the mistake of wishing it upon myself.

I said, “I wish I could take it away from you.”

I was being sincere, too. I really love him and if one of us had to be sick, I’d want it to be me. But the problem with wishing is that if you’re not specific enough, the funny little wish fairies like to play practical jokes. Sure, I got the Flu from him precisely as requested. But I got it after he was already done with it. That’s obviously not what I meant! Effing wish fairies! Oh well. No use crying over spilt wishes. But be careful what you wish for… alright?

The worst part, for me, wasn’t the Flu itself. Don’t get me wrong; that part sucked. Is it just me or does it seem like the Flu gets worse year after year? Bigger. Meaner. Stronger. Faster. It’s like the Flu is on steroids. Or maybe it’s being produced by Nike… or perhaps Gatorade would make more sense. I don’t know. But, like I said, the Flu wasn’t the worst part. The worst part was the kidney infection that the Flu caused.

All that vomiting and diarrhea (Yay! Nothing says Happy New Year like some quality toilet time) took its toll. I’d become pretty dehydrated. And the dehydration negatively affected my kidneys, possibly rupturing one or more of my cysts in the process. When kidneys lack water, they contract. For people with PKD, this causes the cysts to run out of space and press into one another, causing more cysts to form and rupturing some of the cysts which already exist. This causes blood to form in the kidneys, in turn, causing the kidney infection.

Ugh. Kidney infections, if you’ve never had one, are very painful. And they can be difficult to diagnose because the pain doesn’t always originate where you might expect. For example, while I regularly have some level of pain in my lower back and flank areas, where the kidneys are located, when the infections come on, I tend to get a severe pain in my upper stomach area. It’s an awful, debilitating pain that comes and goes and it has a childbirth-contractions-like quality. And much like the Flu, it arrives bearing gifts such as fever, chills and body aches.

At first, I just thought this was some sort of Super Flu (picture regular Flu but with a cape and tights). But soon, I couldn’t stand up. It didn’t take me long to realize what was happening. This isn’t my first PKD rodeo.

I can’t complain. It’s been awhile since I’d had an infection like this. But I’ve been through this before and I know the routine. During my kidney infection sabbatical, if you will, I started feeling invincible. I’ve almost allowed myself to forget altogether that I have this disease. Even though I’ve been drinking my gallon of water a day, as prescribed by my super awesome nephrologist, and I’ve been doing my best to stick to the rules and manage the situation through holistic methods, like yoga and positive energy, I’d somehow forgotten that there are times, like now, when a tougher, more hands-on approach is required.

Hands-down the most effective hands-on treatment for a kidney infection is the antibiotic Ciprofloxacin (AKA: Cipro). It gets into the kidneys and really kicks some kidney infection ass. So I’ve started my 14 days. It’s only a matter of time. Cipro comes with its own sucky side effects, but at least it gets rid of the kidney infection.

While I admit that this sucks (and oh boy does it suck!), I also know there are far worse things and far greater struggles. It’s just another one of those things in life that, while painful, eventually pass (much like gas or kidney stones or bad hair days). This is just a blip in the overall scheme of things. I say that to my friends and family when they’re having bad days or are dealing with issues, mistakes or crappy circumstances which are out of their control. It always seems to make them feel better. And it’s true.

So now I’m saying the same thing to myself.

This is just a blip. Nothing more and nothing less. That’s all. This too shall pass.

And would you look at that? I’m already starting to feel better.

Walk for PKD

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The Nebraska Walk for PKDis tomorrow!

There’s still time to make a donation if you can spare it. And if you’re local, come out and walk with us!! It’s going to be a great day so why not spend part of it helping fund the cure for Polycystic Kidney Disease?!!

To check out my personal PKD site or to donate, please go to www.pkdcure.org/valzane

I was diagnosed with Polycystic Kidney Disease in November, 2009 – a few short months after giving birth to my daughter, Lyla. That’s when I learned that my mother also has PKD and my  grandmother had it, as well. There is a 50% chance that my daughter may  someday discover that she too has the disease. Before that happens, we need to find  a cure!!!!

Polycystic Kidney Disease is one of the most common life-threatening genetic  diseases, affecting more people than Down Syndrome, Cystic Fibrosis, Muscular  Dystrophy and Sickle Cell Anemia – combined. Currently there is no treatment and  no cure… But there is hope!!
The PKD Foundation is a wonderful organization here to ensure that  someday, no one suffers the full effects of PKD. Wouldn’t that be great?

The PKD Foundation aggressively  seeks to convert:
– Ignorance into knowledge through high quality patient  education materials
– Despair into hope through communication, support  groups and research advances
– Isolation into community by involvement in  more than 70 PKD Foundation chapters and by lobbying congress
– Ideas  into reality through the research the Foundation funds and through clinical drug  trials
– Basic science into therapies through grants and  the Foundation’s work with the FDA
– Small dollars into large dollars by  leveraging grants into expanded PKD National Institute of Health (NIH) research  through passionate advocacy
They are doing the hard part but it is our support that  makes it possible.

If you can spare it, please give.

It’s www.pkdcure.org/valzane (in case you missed it the first time).

If money’s tight (and, boy, do I know that feeling!), please find a way to support in another way. I know it doesn’t always feel like it but money is not required to make a difference in this world. There are endless ways to help out.

Be creative! Donate time, say a prayer, join a local charity, offer a helping hand. Find your cause and do something to make a difference. Let’s save the world together. I bet if we work together, we can do it.

If you are able and willing to support the Walk for PKD, thank you. Your support means the world to me and my family.

xoxo

Seeing the Good in Some Not-So-Good News

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I received some not-so-good news the other day regarding the current status of my kidneys. It wasn’t the worst news in the world, but it caught me off-guard and hit me pretty hard. For a moment there, I was down and out about it.

Thanks to some soul searching and a few punches in the arm from some very good friends, I’m feeling much better now.

Basically, my latest labs came back and there was a higher-than-usual amount of blood found in my kidneys. This is most likely a sign that some of my cysts ruptured. It sounds scary, and in a way it is, but it is also pretty standard stuff when it comes to Polycystic Kidney Disease.

I was told that I needed to make additional life changes in order to slow down the rate of my kidney digression. If my kidneys continue getting worse in the next 6 months, my doctor may want to put me on long-term, potentially permanent medication. Something you should know… I don’t like taking any medicine (cold medicine, Tylenol, anything) or putting any chemicals (aside from alcohol but that doesn’t count) into my body. And I hate the thought of being on medication permanently. It’s just not me.

None of this should have or would have upset me. Under normal circumstances, I would have waved my “Philly” finger (that’s the middle one for those not in the know) in the air and said “you’re not the boss of me!” then, I would have simply gone to one extreme or another to prove my doctor wrong. Because that’s what I do. But there was more to it.

The part that upset me was when my doctor said that if my kidneys get worse or if I go on the medication, then I wouldn’t be able to have more children.

To quote my husband, “Well, ain’t that the drizzling shits?!”

Now I could take the easy route and simply “say no to drugs” and hope for the best, but if my kidneys get worse I probably won’t be able to have more children anyway. My kidneys might not be able to handle it. This feels like one of those damned if I do, damned if I don’t situations. I hate those.

Now, the thing is, I have no idea whether or not I even want more children. I know that I love the one I have more than anything in the world. I know I wouldn’t trade her for all the tea in China (or chocolate in Switzerland, or anything else anywhere else for that matter). She is the second greatest thing that has ever happened to me.

But do I want more children? Now? Later? Someday?

Oh, I don’t know. But I do know that I don’t want to be told that I can’t.

So I’ve done some extreme soul searching. Well, first I had a bowl of ice cream to soothe my aching heart but when I quickly realized that wasn’t helping then I jumped right into the soul searching.

I cried… I ranted and raved… I meditated… I got over it.

I am not ready to make any huge life decisions. I’m not quite ready for a new kidney or another child. I’m not sure if or when I will be ready for either. If something changes or if one or the other happens to happen while I’m still trying to get ready, well then I’ll hurry up and get ready.

And, you’d better believe, I will embrace every change that comes my way and love my life and everything and everyone in it no matter what.

Of course, it probably goes without saying that, I’m not ready to give up. That’s not how I roll. So, instead, I’ll try harder because that’s what we do when we know that quality (and quantity) of life is the most important thing.

For the sake of my life and for the sake of those I love and who love me, I will make additional changes.

It’s not going to be easy. But it’s the least I can do, really.

Happy PKD Day!

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Today is PKD Day. March is Kidney Month. March 12th was World Kidney Day. This reminds me of how I like to celebrate my birthday. November 11th is my actual birthday, but every day when the clock says 11:11, I have mini celebrations. Then, come November, I like to celebrate all month long!

So why not celebrate my kidneys for a whole month too?

I have plenty to celebrate. After waiting a year to take the MRI I blogged about a few blogs ago, my results came back and my wonderful doctor said my kidneys look pretty much the same as they did a year ago! Mind you, they didn’t look great a year ago. They were already each three times the size of a “normal” kidney due to swelling and cyst growth. BUT, they haven’t gotten any worse, and I’m so happy!

I feel like I won the lottery! I’ve cried several times since hearing this news. The news means so much…

It means I have more time. More time to enjoy my current kidneys, even the left one – the one I complain about regularly (it has a tendency toward being a jerk). More time to do the things I want to do and enjoy my life in its current status with my current kidneys before having to think about the possible next step. Chances are strong that I will someday receive a donated kidney, quite possibly from a loved one. Kidney transplants do not frighten me. They are highly successful and highly necessary. But, I’d still like to put it off (for me and for my future donor) as long as possible. But if and when the time comes, I will not hesitate. I love life, and I will do whatever it takes to live.

It means that if my husband and I decide to have another baby, we can do so without worrying too much about whether or not my kidneys can handle it. Now, I have a little more faith in them. Of course, that road won’t be easy. It comes with complications worth discussing. Estrogen increases cyst growth, and getting knocked up releases a flood of estrogen. Kidney infections are typically treated with Cipro (Ciprofloxacin), a very strong antibiotic that’s a definite no-no for fetuses, preggos, infants and nursing mommies. If I was to get an infection along the way, and chances are that I’d get at least three, I’d have to be hospitalized and hooked up to an IV to treat the infection. It’s a lot to think about. We haven’t decided yet, but I’ll keep you posted.

It means that we’ve been doing something right. Research shows that water is important and on recommendation from my doctor, I’ve been drinking a gallon of water a day to flush and saturate my kidneys. Also, animal protein has been linked to harming the kidneys and speeding up cyst growth. So, originally, I switched to a 100% vegetarian lifestyle. After six months or so, my husband and I started incorporating fish and important meats, like bacon, back into our diet. Let me tell you, a little bacon really makes a veggie burger sing! Now, we’ve found our balance. We eat mostly veggies and fish, occasionally incorporating meats and poultries. It works for us. And (knock on wood) it seems to be working for my kidneys.

My husband, Jason, is a Godsend. He walks with me and holds my hand through all of the crazy things this crazy life brings. He has since the day we met. Since my first Walk for PKD last year, he has been wearing a yellow “Donate Life” bracelet. He never takes it off. He loves meat (He’s a man! Plus, he’s from Omaha!), but he didn’t hesitate to give it up with me, for me. Of course, I picture him binging on burgers and Slim Jims in his car on his way to work and whenever I’m not around, but that’s OK. In similar fashion, he’d previously supported every silly diet I did back before being diagnosed, from every detox diet to Atkins (very bad for kidney function by the way!), so why stop now? I’ve said it before and I’ll never stop saying it, my husband is the most amazing man on the planet! If it wasn’t for him… well, I don’t even want to think about it.

For people with Polycystic Kidney Disease, everyday is PKD Day. If you or your loved ones have a disease, any disease, you have it and are affected by it every day. Whether or not you have PKD, please celebrate with me this month. And, celebrate YOU and your life every day. Celebrate each and every opportunity you’ve been given. Celebrate your birthday, the month of your birth, the time you were born. Celebrate sunrise and sunset each and every day. Love your life and everyone in it.

We must appreciate the wonderful people in our lives and the time we have been given to spend with them. This life is a gift, a blessing, a miracle. However you choose to define it, it’s pretty stinkin’ awesome, and we have every reason and every right to celebrate.

So, happy PKD Day! Happy Every Day!

MRI

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I get my second annual MRI of my kidneys tonight, and I’m scared.

It’s no ordinary MRI. If you’re a science-nerd, which I am only the latter half of, it’s a pretty cool test actually. When it’s done, I will have two very thorough 3-dimensional images of both my kidneys in all their polycystic glory to share with family and friends. Last year, I printed them out and physically showed everyone. I was like the chick showing off her brand new boob implants at her first post-surgical frat party. This year, I might even post them on Facebook (my kidneys, not my boobs).

Now, if you’re not a science-nerd, I must warn you that the images might turn your stomach, but that fact doesn’t make the results any less interesting. The test will show my kidney volumes and give some insight about my cysts, their quantity and quality (for lack of a better word). I had the first test done a year ago. It told me the then status of my kidneys. This one will tell my current status and, when compared to that one, my kidneys’ rate of digression. It should also give me a sneak peek into my future… or at least the future of my kidneys.

While I’ve been looking forward to this for a year, part of me doesn’t want to know. But, I need to know.

I say I’ve been looking forward to it, but the test itself is no fun. Laying flat on a table, strapped down, practically naked, inside a tube, alone, arms crossed above the head, claustrophobia sets in rather quickly. At least they let you select your own music. But choose carefully because you’ll be stuck with it. Last year, I requested the Grateful Dead but had to settle for the Doors. My advice: don’t settle for the Doors when you’re going to be confined inside a coffin-esque box. While I love the Doors, scary, depressing places, like coffins and MRI machines, are probably not their best venue.

Here come the instructions. Stay still. Don’t swallow. Breathe in. Hold it. Hold it. Hold it. Exhale. Repeat on command for approximately 45 minutes – longer if I accidentally breathe or swallow or move ever so slightly when told not to do so.

Why does my nose always itch during times like these?? Also, why is it so damn cold in here? This paper nightgown isn’t doing a thing for that situation! And, why must the machine scream at me? This was already scary enough without the sound of metal scraping metal. It sounds like a car accident. Are you sure this thing is safe? That reminds me. Why exactly did the tech ask if I have any metal in my body? I quickly responded, “No.” But, am I really sure? Oh God! And, I’ve had to pee from the moment they strapped me down. Yes, I went before I got here! Hello, I have kidney disease. I always have to pee. This process would be better if it included a pee break. Just one. That’s all I’m asking.

Finally, it’s over. Hurry up and get me out of this thing! Get dressed. Go home.

Then, there’s more waiting. After waiting a full year to take this test, it will take three more weeks to get the results. Three long agonizing weeks. Does anything take that long these days? Last year, I discovered that three weeks is the precise amount of time it takes to drive yourself completely insane, if you haven’t already driven yourself there long ago. Here we go again.

I have a few things to fill my time… toddler, writing, Zumba, toddler, writing, Zumba… There are other people, places and things too obviously that will fill my time (family, friends, work, sleep, school, yoga, meditation, compulsively reading my horoscope…), to distract me, and to help me through this. My family and friends are wonderful. They will help happily without even realizing they’re helping.

I have my life to live and for that I am extremely grateful, but the waiting for what I don’t yet know will always be there in the back of my mind.

I can do it.

I will do it.

Now, excuse me, I have to pee.