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.