Since I learned I had PKD I’ve been an avid follower of the PKD Foundation. I saw in a recent newsletter that they host a Walk for PKD in more than 50 cities across the nation. As I kept reading, one sentence of the email stood out to me “you can help put a treatment within reach”. The Walk for PKD has raised over $20 million since 2000 to help take steps toward a future without PKD. I immediately knew this was something I wanted to be involved in and saved the date for the New York City Walk for PKD on October 26, 2013.

The most important question is why am I doing this walk? I am walking in loving memory of my Grandfather, in support of my Mother and Uncle, as a piece of my journey for me and for hope for my unborn children who many someday have this disease. The second most important question is how do I get involved? You can get involved by joining my team ‘Faith, Hope, Love’. Involvement comes in many forms whether it’s through prayer, donations or steps. I am so honored that some of the closest people to me in my life will be walking with me and can’t wait for October. You can “walk” with me too, here is my team page:

http://walkforpkd.kintera.org/newyorkcity/faithhopelove

Team: Faith, Hope, Love

I took a page from the Bible as inspiration for my team name. One of my favorite verses of all time is 1 Corinthians 13:13 “And now these three remain: faith, hope and love. But the greatest of these is love.” I have found this verse applicable at many times in my life for many things. Today this verse sums up my PKD journey in three short words.

(Faith) trusting in Him.

This diagnosis has been the greatest test of faith of my life. I have faith and I am believing for healing and for slow progression of this disease. I have the God can move mountains kind of faith He spoke about in Mark 11:23-24 “Truly I tell you, if anyone says to this mountain, ‘Go, throw yourself into the sea,’ and does not doubt in their heart but believes that what they say will happen, it will be done for them. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.”

(Hope) never give up.

There is no current cure or miracle drug for PKD but I want to see one in my lifetime. I want to have children some day in the future and I cannot fathom bringing children into this world and passing this disease along to them without hope. Hope is not an option or a coping mechanism of some sort; it is how I choose to live.

(Love) the greatest of these.

Words cannot explain the feeling of overwhelming support I have received from everyone since I went “public” with this diagnosis. I have no shortage of wonderful people in my life who love me and I am so grateful for all of their support. 1 Corinthians 13:13 acknowledges that the greatest of these three is love and I couldn’t agree more. Without love there would be nothing to fight for, I would lose hope and my faith would be shaken. 

Sincerely,

Chardonnay

What’s in my glass…

An emotional glass of Chardonnay tonight as I once again tried to put into words my feelings about this disease.

A delicious glass from my favorite Californian vineyard-- Koehler. This bottle marks the last of the case I bought when David and I went out there and visited this vineyard a year ago.

My "blogspot"

Recently pinterest inspiration got the best of me and I decided to actually attempt a project I had pinned. The real inspiration was my blog, as all good things lately have been. I previously have spent nights blogging from the comforts of my couch but wanted a place all its own to call my “blogspot”. Since I moved into my condo over a year ago, my sunroom has served no purpose other than being a home for my treadmill. The space seemed like such a waste with nothing in it and the notion to create a mini office was birthed. With a self re-purposed old desk and 10 large windows, my sunroom is now the home of my creative nest. Below is my how to (and how not to) re-purpose an old desk and like any good DIY project my advice is to enlist the help of others. I could not have done this project without the inspiring pin, kind people on craigslist willing to deliver, the woman at Home Depot to help me with paint, David to help sand and paint and David’s bother to help move the final project. 

Step 1: Scour craiglist for a desk

I spent several nights searching nearly all the Richmond furniture craiglist postings before I came across this little gem. It was a pinewood desk someone had given up on before finishing. Lucky for me they had already sanded the entire thing, score! Rule #1 is to never pay full price for anything on craigslist, I got the desk for a meer $40 and was well on my way. 

Step 2: Base coat

I decided on a deep brown for a base coat, that way when I sanded through the top coat later on, a nice rich brown would be exposed. We painted 2 coats of this outside on a 100 degree Virginian summer day—I won’t even go into how much fun that was. 

Step 3: Color

My living room color pallet is super basic and all neutrals (black, brown, cream, tan). Since my sunroom is connected to my living room I thought adding a splash of color would be a nice touch. I settled on a greenish teal color that I loved. David was zero help in this decision; he proceeded to tell me at Home Depot that all of the 20 possible shades of teal looked “good”.

Step 4: Distress def: To cause strain, anxiety, or suffering to. See Synonyms at trouble; (of furniture) purposely blemished or marred so as to give an antique appearance.

Ironically both definitions of “distress” were very fitting for the next part of this project. I wanted to create something shabby chic and thought distressing the desk would be a perfect touch. According to the wonderful tutorial it would simply require a bit of sanding and some elbow grease and steel wool. After more stress than distress I wasn't quite sure I liked the result. In order to “save” the project I ended up mixing water into the basecoat brown color and used just the tip of the brush to put some brown strokes onto the teal paint. The combination of sanded edges, steel wool spots and the brown paint ended up being the winning look. As I always tell David when we do any project “imperfection adds character” and that is very fitting here.

Step 5: Ta-da!

Here is my finished creative nest and blogspot. I’m currently sitting here enjoying a glass of Chardonnay and curled up in this amazing quilt my Aunt Vicki just sent me.

Lessons learned:

·         Stubborn me did not believe that a quart of paint would cover 2 coats on the desk so I bought a gallon. Needless to say, a quart probably would have covered 4 coats.

·         Handles/knobs- you can usually count on hobby lobby having items on sale 50% off every other week. I found some amazing knobs at hobby lobby that weren't on sale, I waited a week to go back and sure enough they were 50% off. I picked up the knobs for my desk for around $2.50 each. I consider this quite the steal when Anthropologie sells similar ones for $10.

·         Less is more- some of the spots where I sanded and used steel wool just flaked off instead of looking distressed. I think this is because I put two coats each of the basecoat and teal. If I were to do this again I would try one of each.

·         Latex is sticky- a quick spray of clear laquer as a final touch will help prevent everything sticking to the finished piece.

·         Everything on pinterest is harder than it seems- this is a lesson I’ve learned multiple times, my vision for this desk taking a Saturday afternoon turned into a two week project.

Give credit where credit is due: Morgan Kervin’s blog for the original pin http://www.morgankervinblog.com/2011/03/day-with-amy-distressing-furniture.html

Sincerely,
Chardonnay

What’s in my glass…

Church Creek Chardonnay from Chatham Vineyards—this is a wonderful vineyard nestled on Virginia’s Eastern Shore. David’s parents have a house near here and have gotten me hooked on this wine. They also have a Chardonnay that is entirely aged in stainless steel, equally as delicious. 

Vegan: To be or not to be?

I had the first vegan meal of my life just over a month ago when I visited my best friend Tiffany in California. We went to this very hipster place that felt soo “LA”, everyone was overly cheerful and in touch with feelings I clearly didn’t have. I was out of my element but determined to make it through the experience; I proceeded to scan the menu for what would be my first (and hopefully last) vegan meal. No surprise here, nothing sounded good and I was so thankful I had eaten half a cheese and pepperoni pizza a few hours prior. I realize I am being a bit dramatic about the whole experience but vegetarian was one thing; vegan was on a whole other level. After discussing the fact that “almond cheese” was actually just shaved almonds meant to look like cheese, and feeling rather defeated, I selected a hummus and veggie wrap.

To my surprise, it actually came out looking delicious. However, it tasted OK. I understand people eat vegan for all sorts of reasons, I just didn’t feel like this was a choice I could ever make. It was a great experience and a wonderful dinner with a great group of people—no regrets here.

Call it karma, call it irony, but Monday after I returned home from Cali, my kidney specialist laid the news on me that it was time to start reducing my protein intake. And by reducing my protein intake, he meant that a good place to start would be to stop drinking the additional 30g of protein in my daily breakfast protein shake. In addition to changing my breakfast meal of choice, the words vegetarian and vegan were soon mentioned and all I could think about was my recent vegan meal, and I knew I was in trouble.

 Insert PKD relevance—twice now I showed up at the doctor with lab results showing the protein content in my urine was elevated enough to raise concern. Especially because 6 months after my first appointment, my levels were even more elevated. Healthy kidneys don’t allow significant amounts of protein to pass through their filters; damaged kidneys don’t filter properly and let protein pass. Long term effects of consuming large amounts of protein have shown to be damaging for people with kidney disease. Since at the moment there is no pharmaceutical option for PKD (***Praying for the approval of tolvaptan***), diet is one of the only things a person with PKD can control.

Anyone who has shared a meal or happy hour with me knows that for me, cheese is a food group. I love cheese in every form (melted, sprinkled, by itself—the list goes on) and on anything. Unfortunately for me, cheese is also a high source of protein. Besides protein I was also advised to significantly reduce my sodium intake, as sodium can lead to high blood pressure which is a disaster for people with bad kidneys. For now, Chardonnay is still in the clear (praise!)—but I received fair warning that kidney patients end up with a laundry list of medications which usually restrict the amount of alcohol one can consume. One day at a time though, and tonight, Chardonnay is still in my glass ;)

 Just as Rome was not built in a day, it’s going to take this girl more than a day to even consider the possibility of becoming a vegetarian and the even more remote possibility of becoming vegan. I was relieved to have recently watched a webinar sponsored by the PKD Foundation; where Renal Dietician, Kelly Welsh, noted that maintaining a low protein diet on a regular basis was important but stressed that it is long term effects of over indulging in protein that cause damage. This means that you most certainly will find me indulging in a filet or juicy burger every now and then.

I’ve been experimenting with my new found relationship with vegetables and for the past several weeks have consistently been able to avoid meat during the week. I’ve even been able to forego packing my “vegetarian” lunch some days and have found some veggie options at lunch spots I love to frequent. Below is tonight’s dinner—an item that has been on the menu several nights a week since I got the low protein memo. This is my attempt at “cooking” something vegetarian—zucchini, yellow squash, bowtie noodles, minced garlic, diced onions, olive oil, and a sprinkle of freshly grated parmesan cheese. 

Sincerely,

Chardonnay

What's in my glass...

Copa Di Vino single serve Chardonnay- this little gem is amazing. I picked this up at Walmart tonight for all of $2.50. Single serve wine—genius. With a plastic single serve glass and plastic top, you can literally take this anywhere. Months ago David and I had seen this wine on an episode of Shark Tank and I’m impressed it has now made it to a shelf near me. {https://www.copadivino.com/}

P.S.  PKD

The next part of my post I’ve reserved to be more informative. I’ve promised to share what I learn, what works and what doesn’t. For those of you without PKD, tuning out is expected, I won’t take it personally. For those of you with PKD, this is good stuff.

First and foremost I highly recommend signing up for the PKD Foundation’s email updates; this is where I found out about the recent nutrition webinar I watched. {https://www.pkdcure.org/}

The same woman, Kelly Welsh, Renal Dietician, who delivered the webinar, also writes a “Health Notes” blog for the PKD foundation which I’ve found very informative. {http://pkdhealthnotes.org/}

Next on my book list is her book about being kidney wise:

 http://www.amazon.com/Brilliant-Eats-Delicious-Recipes-KidneyWise/dp/0981616607/ref=sr_1_1?ie=UTF8&qid=1374457299&sr=8-1&keywords=brilliant+eats

 

Chardonnay, a pen & the FDA

The whole idea to start a blog came from a recent email I received from the Polycystic Kidney Disease Foundation. Let me back up for a second and start by saying for those of you who don't already know, I was recently diagnosed with a chronic kidney disease. For the rest of my life, this will be my journey, living with PKD. Long story short-- statistics say that I have a 50% chance of kidney failure by age 60. For those of you who know me, you know that I am unwilling to accept ordinary circumstances and am at my best when faced with a challenge. Here I am (after the initial self pity and doubt wore off) ready to face this disease-- challenge accepted.

 The email I recently received from the PKD Foundation was regarding a new drug application for tolvaptan, a potential (and the first) treatment for PKD. On Aug 5, a FDA Advisory Committee will hold a meeting to discuss this drug and ultimately make a decision on its approval. The committee is accepting personal testimonies as part of their consideration and the email I received urged people to share their story. This drug, for this disease, would be life changing. I would be the first generation of people with this disease to have an option other than eventual dialysis or transplant. 

Below is my letter to the FDA, writing this letter inspired this blog. At the moment, this is just my life-- I plan to share the good, the fun, the bad and everything in between. I want to record doctor's visits, pinterest projects, research and more. While writing this letter I enjoyed a glass (or two) of a delicious Chardonnay, which I plan to do again, every time I write this blog. Don't feel left out-- I promise to share "what's in my glass" every time I write ;)

 My letter to the FDA....

My Polycystic Kidney Disease (PKD) story begins with a man I’ve never met. My grandfather died in 1982; 6 years before he would have walked his only daughter down the aisle; 6 years before his seventh and eighth grandchildren were born; 26 years before the love of his life; and 31 years before the possibility of a drug to slow the progression of the disease. He was diagnosed with PKD at the age of 42, on dialysis by 48 and lost his fight at 56.

The next chapter of my story is a brief lesson in statistics. The gene causing PKD is dominant, which means each child of a parent with PKD has a 50% chance of inheriting the disease. My grandparents had four children and like any good coin toss, heads came up twice. My mother and her youngest brother both inherited PKD. PKD progressed quickly for my uncle; he had a transplant from a blood relative in his 40’s. Less than ten years after his transplant, his body began to reject his new kidney and he is now running on dialysis. My mother is a rare story; she is in her late 50’s with no immediate signs of severe reduction in kidney function.

Back to the coin toss—perhaps instead of a statistics lesson, this chapter would be better suited as a gambling lesson. I am an only child, and with a mother who carries the PKD gene, once again came the 50% chance of inheritance. Last summer I scheduled my yearly physical with my primary care physician. I was 23, in the best shape of my life, perfect blood pressure, didn’t smoke, wasn’t on a single medication, had never broken a bone and heck, I hadn’t had a cavity in 15 years. If anyone that day was looking for a clean bill of health, it was this girl. But then came the words anyone with a family history of kidney disease dreads, “too much protein in your urine.”  I was barely listening as my physician rattled off numerous potential explanations and instructed me “not to jump to conclusions” and kindly reminded me that I was only 23 and PKD onset was typically later in life. I proceeded to endure multiple pricks, pokes, ultrasounds and cat scans in order to tell me something that deep down I already knew. At the age of 23 I was officially diagnosed with PKD, cysts on my kidneys already and all. The odds as they stand today are not good, studies show that I will need dialysis and eventually a transplant; it’s just a matter of when. I however am not willing to accept this, I have things I want to do in this lifetime and you only get one.

My story began with my grandfather but his mother and siblings and generations before them have fought this same battle. A pharmaceutical treatment for PKD is long overdue. For those of us living with PKD, we deserve an option other than dialysis and transplants. There is no hope for my grandfather, his story is over—but he is the beginning of my story, and for me there is hope. Hope comes in many forms; today for me hope comes in the form of a drug, tolvaptan, a potential treatment for PKD. Tolvaptan is by no means a miracle drug, or promise of a cure. Tolvaptan is simply hope—hope that I will be there when my children get married; to see my grandchildren born; and to grow old with the love of my life.

Sincerely,
Chardonnay 

What's in my glass...

Fancy Pants Chardonnay-- a perfectly fitting name for a Chardonnay I enjoy, and for roughly $9 a bottle, you really can't go wrong.